Childhood cancer is our problem...
Today is the first day of an entire month dedicated to raising awareness for childhood cancer. I feel responsible as the mother of a 4 year old battling high risk neuroblastoma to speak up about this.
When Roxie was diagnosed we learned that there was no cure for her disease. We learned her prognosis was poor. We learned that we only had a couple of options to even choose from to treat her high risk neuroblastoma, both equally brutal on her little 3 year old body and less than half the time were even successful. We learned that we'd be spending no less than 18 months as a fractured family, separated by all of the times Roxie would spend admitted to the hospital. We learned that even if she beat the odds, overcoming her disease wouldn't be like finally shaking a bad case of the flu but that for the rest of her life she'd struggle with severe side effects from the highly toxic medicines she was going to be given to "heal" her. We learned that our daughter was dying and if we didn't choose the treatment as the lesser of two evils, we would surely lose her. And then we learned the piece of information that still makes me feel guilty - the reason for all of this bad to worse news about her prognosis and current medical treatments available was due to the advances (or lack there of) in medicine that had taken place the decade or two before Roxie was ever diagnosed.
Myself, my family, most people who love Roxie and are now AWARE had been looking the other direction for years leading up to her diagnosis. I knew childhood cancer existed but it was a really sad thing to spend too much time even thinking about. Besides,(in my prior life's train of thought) it wouldn't really ever be my problem - we don't live next to a chemical plant, we avoid spraying the house with unfriendly pesticides, we take the bags off of our dry cleaning to air them out before hanging them in our closet, I stayed healthy for all of my pregnancies, I nursed my babies (Roxie until 18mos), I made my kids avoid sugar opting for as many fruit and vegetables as possible, the products in my fridge and pantry are mostly organic, the kids had maybe ever been on antibiotics twice-childhood cancer did not require my attention. I did not need to be aware of the thousand of areas where those children and their families needed help. I did not need to be aware of the fact that even though there were better solutions for treatments and even cures out there for some childhood cancers, the funding for that research was not. I did not need to be aware of childhood cancer, it was not my problem.
For me, feeling responsible for participating in raising awareness for childhood cancer this month isn't about just sharing gold ribbons as a sign of solidarity for the families taking a child through the battle, it's about making others aware that childhood cancer is everyone's problem. Roxie's course of treatment has already been chosen and is underway based on the best possible treatments available to her at diagnosis. Raising awareness about childhood cancer this September won't change the fact that the best possible options for us to choose from stunk.
If you've been following the little girl we love fighting cancer you may not be aware that we never saw this coming and you may not be aware that had we just been paying attention to the existence of childhood cancer years before hand we could have positively impacted what Roxie is having to go through right now.
You need to be aware that right now you can make a difference in how the next decade of advancements, improvements and cures in childhood cancer goes. I feel responsible for telling you this and raising awareness for childhood cancer because I can confidently tell you your life at some point will be touched, whether it's your child, grandchild, niece, nephew, cousin or friend. You need to be aware that what you do today could guarantee that when a child you love is diagnosed, their prognosis will be promising and the life they'll live after treatment will be uncomplicated.
Presently, childhood cancer is our problem. Hopefully this helps make you aware of why you should consider it your problem too.
To show your support and help fight childhood cancer, by contacting your local children's hospitals oncology floor, researching how government is handling funding or please visit these sites I trust and see how you can get involved...
http://www.stbaldricks.org/
http://www.alexslemonade.org/
http://www.curesearch.org/
http://www.cncfhope.org/
When Roxie was diagnosed we learned that there was no cure for her disease. We learned her prognosis was poor. We learned that we only had a couple of options to even choose from to treat her high risk neuroblastoma, both equally brutal on her little 3 year old body and less than half the time were even successful. We learned that we'd be spending no less than 18 months as a fractured family, separated by all of the times Roxie would spend admitted to the hospital. We learned that even if she beat the odds, overcoming her disease wouldn't be like finally shaking a bad case of the flu but that for the rest of her life she'd struggle with severe side effects from the highly toxic medicines she was going to be given to "heal" her. We learned that our daughter was dying and if we didn't choose the treatment as the lesser of two evils, we would surely lose her. And then we learned the piece of information that still makes me feel guilty - the reason for all of this bad to worse news about her prognosis and current medical treatments available was due to the advances (or lack there of) in medicine that had taken place the decade or two before Roxie was ever diagnosed.
Myself, my family, most people who love Roxie and are now AWARE had been looking the other direction for years leading up to her diagnosis. I knew childhood cancer existed but it was a really sad thing to spend too much time even thinking about. Besides,(in my prior life's train of thought) it wouldn't really ever be my problem - we don't live next to a chemical plant, we avoid spraying the house with unfriendly pesticides, we take the bags off of our dry cleaning to air them out before hanging them in our closet, I stayed healthy for all of my pregnancies, I nursed my babies (Roxie until 18mos), I made my kids avoid sugar opting for as many fruit and vegetables as possible, the products in my fridge and pantry are mostly organic, the kids had maybe ever been on antibiotics twice-childhood cancer did not require my attention. I did not need to be aware of the thousand of areas where those children and their families needed help. I did not need to be aware of the fact that even though there were better solutions for treatments and even cures out there for some childhood cancers, the funding for that research was not. I did not need to be aware of childhood cancer, it was not my problem.
For me, feeling responsible for participating in raising awareness for childhood cancer this month isn't about just sharing gold ribbons as a sign of solidarity for the families taking a child through the battle, it's about making others aware that childhood cancer is everyone's problem. Roxie's course of treatment has already been chosen and is underway based on the best possible treatments available to her at diagnosis. Raising awareness about childhood cancer this September won't change the fact that the best possible options for us to choose from stunk.
If you've been following the little girl we love fighting cancer you may not be aware that we never saw this coming and you may not be aware that had we just been paying attention to the existence of childhood cancer years before hand we could have positively impacted what Roxie is having to go through right now.
You need to be aware that right now you can make a difference in how the next decade of advancements, improvements and cures in childhood cancer goes. I feel responsible for telling you this and raising awareness for childhood cancer because I can confidently tell you your life at some point will be touched, whether it's your child, grandchild, niece, nephew, cousin or friend. You need to be aware that what you do today could guarantee that when a child you love is diagnosed, their prognosis will be promising and the life they'll live after treatment will be uncomplicated.
Presently, childhood cancer is our problem. Hopefully this helps make you aware of why you should consider it your problem too.
To show your support and help fight childhood cancer, by contacting your local children's hospitals oncology floor, researching how government is handling funding or please visit these sites I trust and see how you can get involved...
http://www.stbaldricks.org/
http://www.alexslemonade.org/
http://www.curesearch.org/
http://www.cncfhope.org/
My family is blessed to be tight...
Day +13
Tomorrow will be the end of our third week in treatment. Three full weeks since Roxie has left her room. Three full weeks since she's felt the outside air on her skin. Three full weeks since she's seen her siblings and since they've seen her. Just think about the last really, really great vacation you took- the last place you were that you thought was heaven on earth. I'm guessing even as amazing as it was, after 1 week, 2weeks and most definitely by 3 weeks you were still ready to go home. Well, imagine how we feel!
So you can only guess how crazy wonderful it feels to share this news with you...WE'RE GOING HOME TOMORROW!!!
Last Thursday Roxie's counts really started to come in. After your counts hit zero it can take some time before engraftment begins. That's why the expectation set up front is anywhere between 4-6weeks admitted. In Roxie's case, her counts started to come back after just three days of being down to zero. Since that time, everyday they have doubled. Her first recordable ANC started on Thursday at 126 and as of this morning she's at 11,730!!! This gives the Dr.s the confidence in her count recovery to allow us to take her home for the remaining of her care. We'll go home with some pretty heavy duty diet and care restrictions but nothing we can't handle.
This experience has been tough but truly (compared to what the possibilities could have been-think lots of really awful stuff) uneventful. Roxie tolerated the treatment like a champ and has just started to show the beginning signs of behavioral changes which discharge will hopefully nip in the bud. I think she's about a day away from cracking so getting out of here now is a very good thing. Nick and I are looking forward to seeing each other for more than an hour at a time and I know all of the other kiddos are going to be thrilled that the chaos is over.
*I've already had a couple of people ask me if Roxie's swift recovery indicates that the transplant was successful and unfortunately it does not, only time will tell.
Next on the agenda for Roxie's treatment is an evaluation with Radiology. We will meet with that team next week. Roxie will receive radiation on an out patient bases, under sedation every day M-F for 4 weeks. Within eight weeks from transplant, following radiation, we will begin anti body/immunotherapy. For that we will be admitted for one week out of every four for six months. We are approximately half way through Roxie's treatment. Whew...
Before we came in for transplant Roxie's hair had started to return. It was sweet to see it and feel it. It's nice to know it can and will regrow. We knew the chemo we received in preparation for the transplant would make the hair that was there fall out all over again. That started today and it still took me by surprise. When I arrived I almost got angry when I saw stubble all over her pillow case because my first thought was that someone had accidentally given her a dirty one before I realized it was her own hair. None of the rest of the medicine she receives through treatment will cause hair loss so from this day forward what grows, stays. So as beautiful as she is bald, I look forward to her hair growing in because it signifies a new beginning.
The end of transplant comes with mixed emotions for me. I am so happy we are through one of the most intimidating processes of her treatment but it also means the end of chemotherapy. Right now we know that Roxie's disease responds to chemo. Because Roxie's neuroblastoma diagnosis came with markers associated with aggressiveness she received an equally aggressive chemotherapy regimen. The purpose of her treatment including the induction chemo followed by surgery and then transplant is to kill any and all remaining neuroblastoma cells. Now that the chemo portion of her treatment is completed, we wait and pray that it worked.
That's the hard part for me. As long as she was receiving chemo we know it kept her disease in check but the medicine is entirely too strong and it's entirely unrealistic to stay on indefinitely, it would kill her organs pretty quickly. But I just told Nick the other day that while this time may seem inconvenient to most, I could make this work forever if I had to. I could plan chemo admissions around things like say... family vacations, her graduation, a wedding. The alternative is unbearable.
If there are 30 days in a month, 29 of them I'm thinking, "Not my Rox." but then there's that one day that I can't keep the darkness away. When we are admitted to the hospital, we spend that time on the pediatric oncology floor. Just think about that for a minute. Each time we're here, while we're having dance parties in our room we're sharing the floor alongside patients and their parents who are admitted for end of life care. It's a crazy alternate universe where all those involved in the patient's care are so accustomed to the circle of life that it's not in any way taboo for them to be honest about the unpredictability of your child's treatment's effectiveness. Even though this is a community we are a part of, at times it can get the best of me and I feel so unsettled by it all. It can be overwhelming because though we share so much in common with other families living on the planet of caring for a child in need of healing, I feel so removed because even as close as we are to it, I have NO idea what it means to lose a child and it scares the hell out of me. So I work hard to shake off "that one day" and get back to the other kind of days where I can focus on celebrating each moment together as a victory, and be thankful that Roxie has more good days than bad and know that when I'm thinking, "Not my Rox." on those days, it's true.
One of our favorite ways to pass time while we were here was painting. Roxie painted on paper, the windows, the walls, on her and on me. While we were painting the glass door to her room yesterday I was bored and thinking about my crew and how proud they make me and wrote a quick poem. I thought it was silly at first but then today when I reread it I thought it was worth sharing. I love my gang!
Ode to my S Family
My Family is blessed to be tight
We respect one another and choose to shine bright
We're six strong and love to the end
When tragedy strikes we don't break but bend
Daddy, Mommy, sisters and brother
Come hell or high water, we're here for each other!
Now it's time to write about the honorable mentions that our helpers over the last three weeks deserve. Jen, as always, has been a savior in so many ways. Julie, my sister-in-law, dropped everything to come into town to stay with us over Father's Day weekend (sorry and thank you Casey for sharing her). She jumped right in and ran the show like a true professional. Walker and Greta couldn't get enough of her and Sawyer basically told me to "hit the road" when she found out Julie had danced for years and years and was much more capable than I at ballerina grade buns and makeup for her recital. Alison, my niece, stayed with Julie the second night they were in town and you can just tell that she gets to love on and care for her other cousins who live next door to them in Carbondale because she's a natural! I'm jealous that her Aunt Jill(Julie's sister) and Uncle Boomer have such fantastic helpers right out their back door! Thank you so much Van Winkle family!!!
Then there's Wendy. HALLELUJAH for Wendy and the entire Diamond Family. Wendy's two oldest girls have spent the entire month of June in Japan, yes Japan! Wendy has been occupied with caring for our family all the while two of her babies were half way around the world. They are having a once in a lifetime experience and I (in a world that unfortunately keeps my thoughts pretty selfish) haven't even had much time to hear about or ask about my nieces' Japanese adventure. They return this weekend and then the Diamond gang will all get to be together again as a family. I hope there will still be time this summer before Rachel returns to school to get together and hear their stories. Rachel and Emily are two of the neatest young ladies you will ever meet. Wendy's youngest daughter was on her own summer excursion with the cousins from Mark's side and his parents the first week we were admitted. They ended up having an unexpected RV situation and while Mark's parents stayed for the repairs to be made, the cousins got to fly home. Andrea stayed with us the second week. Andrea was a huge help! Sawyer LOVED having her cousin there for companionship. Andrea was a pro at finding ways to chip in. She always had time for the two little ones and was frequently the first to jump up and start cleaning after dinner. Other than one weekend, Wendy has stayed with our family the whole time we've been admitted. She basically assumed the responsibilities of a parent for Walker and Greta which isn't as easy as it sounds if you're out of baby/toddler practice. She joked that it took a couple of days to get her "sea legs' back under her. My kids love Wendy and Wendy loves them. She worked hard to keep as much order as possible for our children and our home. Wendy has generously and graciously served our family and we are SO thankful! Mark in the meantime has spent a huge portion of this month totally on his own. With Wendy staying with us, Rachel and Emily in Japan and Andrea on a road trip and then helping us-I'm guessing this is the longest he's ever spent without his girls. Since we know the unsettling feeling that comes when a family is displaced, I want to thank Mark too for supporting Wendy-supporting us!
Tomorrow will be the end of our third week in treatment. Three full weeks since Roxie has left her room. Three full weeks since she's felt the outside air on her skin. Three full weeks since she's seen her siblings and since they've seen her. Just think about the last really, really great vacation you took- the last place you were that you thought was heaven on earth. I'm guessing even as amazing as it was, after 1 week, 2weeks and most definitely by 3 weeks you were still ready to go home. Well, imagine how we feel!
So you can only guess how crazy wonderful it feels to share this news with you...WE'RE GOING HOME TOMORROW!!!
Last Thursday Roxie's counts really started to come in. After your counts hit zero it can take some time before engraftment begins. That's why the expectation set up front is anywhere between 4-6weeks admitted. In Roxie's case, her counts started to come back after just three days of being down to zero. Since that time, everyday they have doubled. Her first recordable ANC started on Thursday at 126 and as of this morning she's at 11,730!!! This gives the Dr.s the confidence in her count recovery to allow us to take her home for the remaining of her care. We'll go home with some pretty heavy duty diet and care restrictions but nothing we can't handle.
This experience has been tough but truly (compared to what the possibilities could have been-think lots of really awful stuff) uneventful. Roxie tolerated the treatment like a champ and has just started to show the beginning signs of behavioral changes which discharge will hopefully nip in the bud. I think she's about a day away from cracking so getting out of here now is a very good thing. Nick and I are looking forward to seeing each other for more than an hour at a time and I know all of the other kiddos are going to be thrilled that the chaos is over.
*I've already had a couple of people ask me if Roxie's swift recovery indicates that the transplant was successful and unfortunately it does not, only time will tell.
Next on the agenda for Roxie's treatment is an evaluation with Radiology. We will meet with that team next week. Roxie will receive radiation on an out patient bases, under sedation every day M-F for 4 weeks. Within eight weeks from transplant, following radiation, we will begin anti body/immunotherapy. For that we will be admitted for one week out of every four for six months. We are approximately half way through Roxie's treatment. Whew...
Before we came in for transplant Roxie's hair had started to return. It was sweet to see it and feel it. It's nice to know it can and will regrow. We knew the chemo we received in preparation for the transplant would make the hair that was there fall out all over again. That started today and it still took me by surprise. When I arrived I almost got angry when I saw stubble all over her pillow case because my first thought was that someone had accidentally given her a dirty one before I realized it was her own hair. None of the rest of the medicine she receives through treatment will cause hair loss so from this day forward what grows, stays. So as beautiful as she is bald, I look forward to her hair growing in because it signifies a new beginning.
The end of transplant comes with mixed emotions for me. I am so happy we are through one of the most intimidating processes of her treatment but it also means the end of chemotherapy. Right now we know that Roxie's disease responds to chemo. Because Roxie's neuroblastoma diagnosis came with markers associated with aggressiveness she received an equally aggressive chemotherapy regimen. The purpose of her treatment including the induction chemo followed by surgery and then transplant is to kill any and all remaining neuroblastoma cells. Now that the chemo portion of her treatment is completed, we wait and pray that it worked.
That's the hard part for me. As long as she was receiving chemo we know it kept her disease in check but the medicine is entirely too strong and it's entirely unrealistic to stay on indefinitely, it would kill her organs pretty quickly. But I just told Nick the other day that while this time may seem inconvenient to most, I could make this work forever if I had to. I could plan chemo admissions around things like say... family vacations, her graduation, a wedding. The alternative is unbearable.
If there are 30 days in a month, 29 of them I'm thinking, "Not my Rox." but then there's that one day that I can't keep the darkness away. When we are admitted to the hospital, we spend that time on the pediatric oncology floor. Just think about that for a minute. Each time we're here, while we're having dance parties in our room we're sharing the floor alongside patients and their parents who are admitted for end of life care. It's a crazy alternate universe where all those involved in the patient's care are so accustomed to the circle of life that it's not in any way taboo for them to be honest about the unpredictability of your child's treatment's effectiveness. Even though this is a community we are a part of, at times it can get the best of me and I feel so unsettled by it all. It can be overwhelming because though we share so much in common with other families living on the planet of caring for a child in need of healing, I feel so removed because even as close as we are to it, I have NO idea what it means to lose a child and it scares the hell out of me. So I work hard to shake off "that one day" and get back to the other kind of days where I can focus on celebrating each moment together as a victory, and be thankful that Roxie has more good days than bad and know that when I'm thinking, "Not my Rox." on those days, it's true.
One of our favorite ways to pass time while we were here was painting. Roxie painted on paper, the windows, the walls, on her and on me. While we were painting the glass door to her room yesterday I was bored and thinking about my crew and how proud they make me and wrote a quick poem. I thought it was silly at first but then today when I reread it I thought it was worth sharing. I love my gang!
Ode to my S Family
My Family is blessed to be tight
We respect one another and choose to shine bright
We're six strong and love to the end
When tragedy strikes we don't break but bend
Daddy, Mommy, sisters and brother
Come hell or high water, we're here for each other!
Now it's time to write about the honorable mentions that our helpers over the last three weeks deserve. Jen, as always, has been a savior in so many ways. Julie, my sister-in-law, dropped everything to come into town to stay with us over Father's Day weekend (sorry and thank you Casey for sharing her). She jumped right in and ran the show like a true professional. Walker and Greta couldn't get enough of her and Sawyer basically told me to "hit the road" when she found out Julie had danced for years and years and was much more capable than I at ballerina grade buns and makeup for her recital. Alison, my niece, stayed with Julie the second night they were in town and you can just tell that she gets to love on and care for her other cousins who live next door to them in Carbondale because she's a natural! I'm jealous that her Aunt Jill(Julie's sister) and Uncle Boomer have such fantastic helpers right out their back door! Thank you so much Van Winkle family!!!
Then there's Wendy. HALLELUJAH for Wendy and the entire Diamond Family. Wendy's two oldest girls have spent the entire month of June in Japan, yes Japan! Wendy has been occupied with caring for our family all the while two of her babies were half way around the world. They are having a once in a lifetime experience and I (in a world that unfortunately keeps my thoughts pretty selfish) haven't even had much time to hear about or ask about my nieces' Japanese adventure. They return this weekend and then the Diamond gang will all get to be together again as a family. I hope there will still be time this summer before Rachel returns to school to get together and hear their stories. Rachel and Emily are two of the neatest young ladies you will ever meet. Wendy's youngest daughter was on her own summer excursion with the cousins from Mark's side and his parents the first week we were admitted. They ended up having an unexpected RV situation and while Mark's parents stayed for the repairs to be made, the cousins got to fly home. Andrea stayed with us the second week. Andrea was a huge help! Sawyer LOVED having her cousin there for companionship. Andrea was a pro at finding ways to chip in. She always had time for the two little ones and was frequently the first to jump up and start cleaning after dinner. Other than one weekend, Wendy has stayed with our family the whole time we've been admitted. She basically assumed the responsibilities of a parent for Walker and Greta which isn't as easy as it sounds if you're out of baby/toddler practice. She joked that it took a couple of days to get her "sea legs' back under her. My kids love Wendy and Wendy loves them. She worked hard to keep as much order as possible for our children and our home. Wendy has generously and graciously served our family and we are SO thankful! Mark in the meantime has spent a huge portion of this month totally on his own. With Wendy staying with us, Rachel and Emily in Japan and Andrea on a road trip and then helping us-I'm guessing this is the longest he's ever spent without his girls. Since we know the unsettling feeling that comes when a family is displaced, I want to thank Mark too for supporting Wendy-supporting us!
Happy Father's Day from Nick
6/17/12
Since it is father’s day it’s only fitting that Dad writes this entry. I have learned and received so much from my kids, especially in the last several months. Each one of my kids, through their actions on this journey, have reinforced certain virtues in me. My children and these lessons are the best Father’s Day Gifts.
Sawyer has given me renewed selflessness, the act of sacrificing one’s own interest for the greater good. Sawyer is old enough to know what is going on but not old enough for us to expect her to understand. Still, she’s been so tolerant and accepting of all the ways her life has changed. She has finished third grade as a stellar student, was a member of her school’s Character Counsel, participated in running club, attended dance and managed to win the St. Louis Science fair. The one thing that I noticed during all of Roxie’s treatments was Sawyer never complained. Sawyer has been a fantastic big sister, she entertains her younger siblings when Holly and I cannot and she pitches in around the house where ever and whenever she can. As a family we choose meals, extracurricular activities, bed times and running errands around Roxie’s health and care at home. She’s been told that she cannot have friends over when Roxie is neutropenic. She’s given up all kinds of tv control when Roxie doesn’t feel well and is laying on the couch watching whatever toddler show for the 100th time. She’s had to patiently wait to do the things she wants to do or go the places she wants to go around Roxie’s treatments. Not once has she resented us or Roxie for it. Thank you Sawyer
Roxie has given me renewed perseverance, continued effort to do or achieve something despite difficulties, failure, or opposition. She always seems to find a way to be happy. Too many times to count she has been put through unpleasant or painful procedures but she continues to bounce back. I have watched absolute fear and terror enter her face only to find later, that the smiles return. She’s had to re learn/condition her body to do the things she wants it to do as she physically recovers from treatment, and it’s not easy for her-but she does it, each time. When she’s feeling well, she always finds a way to entertain herself and others and is never shy to show off her sticker or dance moves. She loves her life, no matter where or how she’s forced to live it. Thank you Roxie
Greta has given me renewed adaptability, the ability to change (or be changed) to fit changed circumstances. Most two year olds like routine or things to stay constant. The only thing constant in Greta’s life is change. She never knows when it will be Mommy, Daddy, or someone else taking care of her. She does not get to see her siblings for days at a time but when she does finally see her sisters or brother it’s as if no time has passed and like best friends, they pickup where they left off. Greta charms those in her company with her contagious joy and quirky habits. Most of the time she’s too busy making new friends to be worried about what’s next. Greta just goes with flow and enjoys the ride. Thank you Greta
Walker has given me renewed independence, Free from outside control; not depending on another's authority. Walker does not need Holly or me to make him smile-Walker smiles any time anyone looks or talks to him. This baby spent the first six months of his life living in and out of the hospital, (the first month as a patient) and in that time he’s never cried for or demanded attention. The few times that he does fuss it’s because he’s hungry. He’s perfectly fine sitting back and observing his crazy family. Frequently in the morning or after naps Walker will gladly play in his crib until someone comes to find him awake. This may jinx me but Walker has been the least needy, easiest going, independent baby. Thank you Walker
I feel that it would be an injustice if I did not thank my wife for the virtue that she has and has instilled in me. Holly has gives me the gift of her grace, the exercise of love, kindness, mercy, favor; disposition to benefit or serve another; favor bestowed or privilege conferred. The strength that I have, to get up each day comes from her. She works tirelessly to run essentially two homes and manages to make time for all four kids to ensure that no one feels left out. She is the only person I would take on this journey that we have found ourselves on. I am proud to call her my wife and better half.
Thank you Holly.
Since it is father’s day it’s only fitting that Dad writes this entry. I have learned and received so much from my kids, especially in the last several months. Each one of my kids, through their actions on this journey, have reinforced certain virtues in me. My children and these lessons are the best Father’s Day Gifts.
Sawyer has given me renewed selflessness, the act of sacrificing one’s own interest for the greater good. Sawyer is old enough to know what is going on but not old enough for us to expect her to understand. Still, she’s been so tolerant and accepting of all the ways her life has changed. She has finished third grade as a stellar student, was a member of her school’s Character Counsel, participated in running club, attended dance and managed to win the St. Louis Science fair. The one thing that I noticed during all of Roxie’s treatments was Sawyer never complained. Sawyer has been a fantastic big sister, she entertains her younger siblings when Holly and I cannot and she pitches in around the house where ever and whenever she can. As a family we choose meals, extracurricular activities, bed times and running errands around Roxie’s health and care at home. She’s been told that she cannot have friends over when Roxie is neutropenic. She’s given up all kinds of tv control when Roxie doesn’t feel well and is laying on the couch watching whatever toddler show for the 100th time. She’s had to patiently wait to do the things she wants to do or go the places she wants to go around Roxie’s treatments. Not once has she resented us or Roxie for it. Thank you Sawyer
Roxie has given me renewed perseverance, continued effort to do or achieve something despite difficulties, failure, or opposition. She always seems to find a way to be happy. Too many times to count she has been put through unpleasant or painful procedures but she continues to bounce back. I have watched absolute fear and terror enter her face only to find later, that the smiles return. She’s had to re learn/condition her body to do the things she wants it to do as she physically recovers from treatment, and it’s not easy for her-but she does it, each time. When she’s feeling well, she always finds a way to entertain herself and others and is never shy to show off her sticker or dance moves. She loves her life, no matter where or how she’s forced to live it. Thank you Roxie
Greta has given me renewed adaptability, the ability to change (or be changed) to fit changed circumstances. Most two year olds like routine or things to stay constant. The only thing constant in Greta’s life is change. She never knows when it will be Mommy, Daddy, or someone else taking care of her. She does not get to see her siblings for days at a time but when she does finally see her sisters or brother it’s as if no time has passed and like best friends, they pickup where they left off. Greta charms those in her company with her contagious joy and quirky habits. Most of the time she’s too busy making new friends to be worried about what’s next. Greta just goes with flow and enjoys the ride. Thank you Greta
Walker has given me renewed independence, Free from outside control; not depending on another's authority. Walker does not need Holly or me to make him smile-Walker smiles any time anyone looks or talks to him. This baby spent the first six months of his life living in and out of the hospital, (the first month as a patient) and in that time he’s never cried for or demanded attention. The few times that he does fuss it’s because he’s hungry. He’s perfectly fine sitting back and observing his crazy family. Frequently in the morning or after naps Walker will gladly play in his crib until someone comes to find him awake. This may jinx me but Walker has been the least needy, easiest going, independent baby. Thank you Walker
I feel that it would be an injustice if I did not thank my wife for the virtue that she has and has instilled in me. Holly has gives me the gift of her grace, the exercise of love, kindness, mercy, favor; disposition to benefit or serve another; favor bestowed or privilege conferred. The strength that I have, to get up each day comes from her. She works tirelessly to run essentially two homes and manages to make time for all four kids to ensure that no one feels left out. She is the only person I would take on this journey that we have found ourselves on. I am proud to call her my wife and better half.
Thank you Holly.
Today is a very good day!
Day -5
2nd day of chemo and this is the first time I've sat down. The dr tells me Roxie could be feeling poorly in the next day or two, so until then-we've got her up and moving!
We started this morning with playing drums in music therapy(Roxie told Ms Christy all about Dinosaur Train and Ms Christy told Roxie about the song "everybody walk the dinosaur" and now Rox is obsessed with listening to it on the ipad-boom, boom, akka lakka lakka boom), then child life came and played Plato, then we had bath/water play time, a dressing change, a visit from Ms Kim (our home healthcare nurse), then occupational therapy came and worked with scissors and a big puzzle, then lunch and now we're with the physical therapist whose using all kinds of clever tricks to get her to stretch and exercise.
We've got a calendar up for hospital staff and friends to start filling in times for future visits. Roxie is still eating well and in a fabulous mood. Today is a very good day!
2nd day of chemo and this is the first time I've sat down. The dr tells me Roxie could be feeling poorly in the next day or two, so until then-we've got her up and moving!
We started this morning with playing drums in music therapy(Roxie told Ms Christy all about Dinosaur Train and Ms Christy told Roxie about the song "everybody walk the dinosaur" and now Rox is obsessed with listening to it on the ipad-boom, boom, akka lakka lakka boom), then child life came and played Plato, then we had bath/water play time, a dressing change, a visit from Ms Kim (our home healthcare nurse), then occupational therapy came and worked with scissors and a big puzzle, then lunch and now we're with the physical therapist whose using all kinds of clever tricks to get her to stretch and exercise.
We've got a calendar up for hospital staff and friends to start filling in times for future visits. Roxie is still eating well and in a fabulous mood. Today is a very good day!
WE NEED YOUR HELP on June 17th
Day -6
We work out of the negative here in the transplant room. Today is the first day of medicine and it's already currently running through her IV. Every day we will count up from the negative until Day 0 (which is Tuesday) when she'll receive her stem cell transfusion.
Admission last night was pretty uneventful. If anything, Roxie was kind of happy to be back at the hospital. She loves all of her cards on the wall. I am so happy I took the time to do that. It was therapeutic for me and I didn't even think about how I would be positively affected by rereading the cards as I was hanging them. It truly put me in the right frame of mind and reminded me that there are so many people who's lives are being touched by Roxie. I had also underestimed how many cards we had. Rema (Roxie's nurse-who btw is wearing her Team Roxie tshirt today) and Jess (one of Roxie's favorite techs-who btw was wearing her Team Roxie shirt yesterday) both helped me hang some of the well wishes. We had only made it through about a 1/4 of the box when the wall was already covered. You all have sent us so much love. Where I had been intimidated once before, after I had posted the cards, I left to head back home to grab Roxie felling like, "we got this."
Once we arrived, Roxie settled right into bed. The rooms are somewhat similar to the ones we stay in during chemo admissions but the rules are different, so we immediately started running into obstacles that are going to take all of a couple of days to adjust to. For instance, the floor is a germ environment so anything that comes in contact with the floor is contaminated. Once something touches the floor it need to be wiped down with an industrial "Clorox on steroids" wipey. You have to use gloves to even use the wipey to wipe things down. And anything that has been contaminated cannot go in Roxie's bed, like...her feet. She always has to have her bare feet in shoes before they touch the floor and then those shoes must be removed before she's back in bed. That, of course, also includes our feet. We can lay in Roxie's bed, but we cannot sleep in it. We are not allowed to use her bathroom, it is for the patient only. Which means if I have to use the bathroom, I have to wait for someone to come and sit with Rox because she cannot be left alone. We are only allowed to have 4 people in the room. The reason for this is because the heppa filters are only designed to control clean air for 4 bodies any more than that in the room and the air cleanliness is compromised. That means when Nick and I are here together and Roxie is in her bed, only one other person can be present (her nurse, her doctor, her tech, the housekeeper, any other hospital staff) have to take turns coming in and out, one at a time. We cannot eat in Roxie's room, patients only can. Everything that comes through the door has to be wiped down before entry. Roxie was only allowed to bring one comfort item ( her blankie) washed and dried on high heat and hot water and then bagged while in transport. All other items have to come new in a box, be opened in the ante room (a middle room in-between the hall and the transplant room designed for the transition from the public environment into a sterile one) and then wiped down before she can play with it. Friend's of Kids with Cancer has a budget set aside for every child admitted to BMT of $200 for shopping for new toys. I think Roxie is going to love picking out a few new things.
Roxie is showing some cold symptoms that I think are progressing. This is my biggest concern of the moment. They've already started chemo so there is no turning back now. They swabbed her nose this morning and now we'll have to wait and see what the results come back with and do whatever we can at that point to proactively prepare for what could be a really tricky, scary time. As the medicine does it's job every day moving forward, it leaves the door wide open for a virus to wreak havoc. I know the staff here will do their best to care for Roxie, but like many things involved in this situation-Roxie's body is in charge.
I have had many people ask if they could send a card to Roxie while we're admitted and the answer is, Yes! She really does love receiving mail. Our address here is:
Roxie Schopp
St. Louis Children's Hospital
1 Children's Place
9th Floor, BMT 5
Saint Louis, MO 63110
I am also positive that both Sawyer and Greta would love notes of encouragement. This is tough on them too. Our girls are thick, super thick and even though Roxie is in true isolation-Greta just instantly had a built in friend removed from her world and I am sure she will also be affected by the loneliness. Sawyer is off to the start of a fabulous summer, she's doing really well but obviously has concerns for her sister and misses us when we're gone. I've always known Sawyer was exceptional but she has handled this all with an honest, understanding, fun loving heart. She is THE best big sister. I miss Walker during the days and we're only on day one, ha. I'm just so used to having him here with me. He is an absolute cheese ball. He just learned to crawl and sits up like a champ. Every time he sits up he grins so big and does that deep inhaling sound of pride. Then he'll just sit there and bounce with "look at me" enthusiasm. He is a sweet, sweet kid!
To date, through all of this, the love and generosity we've received has been unending. Nick and I have not yet even had to ASK for a single thing because you all are filling our needs before we can even see them coming at times. But there is a huge favor that I am going to ask of you all now...
I have a lot to say about Neuroblastoma, especially High Risk Neuroblastoma. I'm working on trying to comprise my thoughts and choosing what and how I can responsibly share them with you. The bottom line is it's a disgusting disease. Unless you've cared for someone whose had it, or are in the medical industry it is unlikely that you've ever heard of it. We hadn't. It's referred to as an orphan disease. It receives very, very little funding for research even though it is the most common extracranial solid cancer in childhood. The child diagnosed will undergo a minimum of over a year's worth of unimaginably harsh treatments and that is the best case scenario. Too often it's a disease that's diligently battled for years at the expense of entire families as it moves into remission but comes back again and again. The cure rate from diagnosis itself is too low and needs improvement but even if your child is one that makes it through the frontline therapy successfully, then relapses (50%) - there is no known cure. Parents choose treatments at that point to buy time with the hope that advancements will be made during the sustaining of their child's life. One thing I've learned is that neuroblastoma families never give up. They never give up fighting and they never give up hoping, even though they largely feel frustrated that the disease is overlooked.
I do my best to stay educated on neuroblastoma by researching new articles weekly. Inevitably a new story of neuroblastoma loss will find it's way into my search results. The child and their families are inspiring. Their journey is exhausting. Their relapse is paralyzing. Their limited choices for treatment is maddening. Reading the good bye is excruciating. The first thing that always goes through my head is - Man, if more people knew about this-how this disease operates, they would not stand for it and it would surely go away. What developed in my head was a mantra - KNOW Neuroblastoma/NO Neuroblastoma.
In the world of cancer that our family has found itself in, this is how the system works:
AWARENESS leads to FUNDING leads to RESEARCH leads to CURE
So here's my big favor- are you ready for it- you may not be up for the challenge, Ok here it goes...
I am asking you to have a picnic with your family. Nothing big, nothing fancy, we're talking sheet on the ground in your own back yard - or do it up high style at a park with a pavilion, whatever works for you. June 11-17 is International Neuroblastoma Awareness Week and on the schedule for June 17th is a global invitation to sit down with your family for a picnic. Well, we can't. So please, in an effort to help bring awareness to neuroblastoma, have one with your family for me. Take a picture, throw it up on Facebook & twitter and in the caption write my mantra- KNOW Neuroblastoma/NO Neuroblastoma. Maybe if you have time, do a little research and include a high risk neuroblastoma fact under "KNOW Neuroblastoma/NO Neuroblastoma". Then share it. If even one person in your network does a little searching after seeing your picture because they're not sure why you're talking about neuroblastoma or what it even is, they will learn of it and understand why it needs to be gone. It will start a conversation and we'll have accomplished something huge together.
My family and families like mine need your help getting the word out.
Say it with me! "KNOW Neuroblastoma/NO Neuroblastoma"
We work out of the negative here in the transplant room. Today is the first day of medicine and it's already currently running through her IV. Every day we will count up from the negative until Day 0 (which is Tuesday) when she'll receive her stem cell transfusion.
Admission last night was pretty uneventful. If anything, Roxie was kind of happy to be back at the hospital. She loves all of her cards on the wall. I am so happy I took the time to do that. It was therapeutic for me and I didn't even think about how I would be positively affected by rereading the cards as I was hanging them. It truly put me in the right frame of mind and reminded me that there are so many people who's lives are being touched by Roxie. I had also underestimed how many cards we had. Rema (Roxie's nurse-who btw is wearing her Team Roxie tshirt today) and Jess (one of Roxie's favorite techs-who btw was wearing her Team Roxie shirt yesterday) both helped me hang some of the well wishes. We had only made it through about a 1/4 of the box when the wall was already covered. You all have sent us so much love. Where I had been intimidated once before, after I had posted the cards, I left to head back home to grab Roxie felling like, "we got this."
Once we arrived, Roxie settled right into bed. The rooms are somewhat similar to the ones we stay in during chemo admissions but the rules are different, so we immediately started running into obstacles that are going to take all of a couple of days to adjust to. For instance, the floor is a germ environment so anything that comes in contact with the floor is contaminated. Once something touches the floor it need to be wiped down with an industrial "Clorox on steroids" wipey. You have to use gloves to even use the wipey to wipe things down. And anything that has been contaminated cannot go in Roxie's bed, like...her feet. She always has to have her bare feet in shoes before they touch the floor and then those shoes must be removed before she's back in bed. That, of course, also includes our feet. We can lay in Roxie's bed, but we cannot sleep in it. We are not allowed to use her bathroom, it is for the patient only. Which means if I have to use the bathroom, I have to wait for someone to come and sit with Rox because she cannot be left alone. We are only allowed to have 4 people in the room. The reason for this is because the heppa filters are only designed to control clean air for 4 bodies any more than that in the room and the air cleanliness is compromised. That means when Nick and I are here together and Roxie is in her bed, only one other person can be present (her nurse, her doctor, her tech, the housekeeper, any other hospital staff) have to take turns coming in and out, one at a time. We cannot eat in Roxie's room, patients only can. Everything that comes through the door has to be wiped down before entry. Roxie was only allowed to bring one comfort item ( her blankie) washed and dried on high heat and hot water and then bagged while in transport. All other items have to come new in a box, be opened in the ante room (a middle room in-between the hall and the transplant room designed for the transition from the public environment into a sterile one) and then wiped down before she can play with it. Friend's of Kids with Cancer has a budget set aside for every child admitted to BMT of $200 for shopping for new toys. I think Roxie is going to love picking out a few new things.
Roxie is showing some cold symptoms that I think are progressing. This is my biggest concern of the moment. They've already started chemo so there is no turning back now. They swabbed her nose this morning and now we'll have to wait and see what the results come back with and do whatever we can at that point to proactively prepare for what could be a really tricky, scary time. As the medicine does it's job every day moving forward, it leaves the door wide open for a virus to wreak havoc. I know the staff here will do their best to care for Roxie, but like many things involved in this situation-Roxie's body is in charge.
I have had many people ask if they could send a card to Roxie while we're admitted and the answer is, Yes! She really does love receiving mail. Our address here is:
Roxie Schopp
St. Louis Children's Hospital
1 Children's Place
9th Floor, BMT 5
Saint Louis, MO 63110
I am also positive that both Sawyer and Greta would love notes of encouragement. This is tough on them too. Our girls are thick, super thick and even though Roxie is in true isolation-Greta just instantly had a built in friend removed from her world and I am sure she will also be affected by the loneliness. Sawyer is off to the start of a fabulous summer, she's doing really well but obviously has concerns for her sister and misses us when we're gone. I've always known Sawyer was exceptional but she has handled this all with an honest, understanding, fun loving heart. She is THE best big sister. I miss Walker during the days and we're only on day one, ha. I'm just so used to having him here with me. He is an absolute cheese ball. He just learned to crawl and sits up like a champ. Every time he sits up he grins so big and does that deep inhaling sound of pride. Then he'll just sit there and bounce with "look at me" enthusiasm. He is a sweet, sweet kid!
To date, through all of this, the love and generosity we've received has been unending. Nick and I have not yet even had to ASK for a single thing because you all are filling our needs before we can even see them coming at times. But there is a huge favor that I am going to ask of you all now...
I have a lot to say about Neuroblastoma, especially High Risk Neuroblastoma. I'm working on trying to comprise my thoughts and choosing what and how I can responsibly share them with you. The bottom line is it's a disgusting disease. Unless you've cared for someone whose had it, or are in the medical industry it is unlikely that you've ever heard of it. We hadn't. It's referred to as an orphan disease. It receives very, very little funding for research even though it is the most common extracranial solid cancer in childhood. The child diagnosed will undergo a minimum of over a year's worth of unimaginably harsh treatments and that is the best case scenario. Too often it's a disease that's diligently battled for years at the expense of entire families as it moves into remission but comes back again and again. The cure rate from diagnosis itself is too low and needs improvement but even if your child is one that makes it through the frontline therapy successfully, then relapses (50%) - there is no known cure. Parents choose treatments at that point to buy time with the hope that advancements will be made during the sustaining of their child's life. One thing I've learned is that neuroblastoma families never give up. They never give up fighting and they never give up hoping, even though they largely feel frustrated that the disease is overlooked.
I do my best to stay educated on neuroblastoma by researching new articles weekly. Inevitably a new story of neuroblastoma loss will find it's way into my search results. The child and their families are inspiring. Their journey is exhausting. Their relapse is paralyzing. Their limited choices for treatment is maddening. Reading the good bye is excruciating. The first thing that always goes through my head is - Man, if more people knew about this-how this disease operates, they would not stand for it and it would surely go away. What developed in my head was a mantra - KNOW Neuroblastoma/NO Neuroblastoma.
In the world of cancer that our family has found itself in, this is how the system works:
AWARENESS leads to FUNDING leads to RESEARCH leads to CURE
So here's my big favor- are you ready for it- you may not be up for the challenge, Ok here it goes...
I am asking you to have a picnic with your family. Nothing big, nothing fancy, we're talking sheet on the ground in your own back yard - or do it up high style at a park with a pavilion, whatever works for you. June 11-17 is International Neuroblastoma Awareness Week and on the schedule for June 17th is a global invitation to sit down with your family for a picnic. Well, we can't. So please, in an effort to help bring awareness to neuroblastoma, have one with your family for me. Take a picture, throw it up on Facebook & twitter and in the caption write my mantra- KNOW Neuroblastoma/NO Neuroblastoma. Maybe if you have time, do a little research and include a high risk neuroblastoma fact under "KNOW Neuroblastoma/NO Neuroblastoma". Then share it. If even one person in your network does a little searching after seeing your picture because they're not sure why you're talking about neuroblastoma or what it even is, they will learn of it and understand why it needs to be gone. It will start a conversation and we'll have accomplished something huge together.
My family and families like mine need your help getting the word out.
Say it with me! "KNOW Neuroblastoma/NO Neuroblastoma"
Tomorrow is T Day
Our original scheduled admission was for April 27th. Transplant was delayed twice. The first time was for a fungal infection, the second time was because of positive test results that determined Roxie was fighting a cold. During our time off of treatment we were living daily with the anxiety that her disease could come back. Remarkably her scans came back NED twice even though during that time she was receiving no treatment for the disease. Now we're in the clear of everything and counting down the hours, the minutes until we'll be admitted tomorrow. Everyone keeps asking me if I'm ready. Quite frankly, I'm not sure how the answer to that question could ever be yes.
Roxie will be in isolation the entire time we are admitted and the time frame they're estimating is 4-6weeks. Her room is a small one, kind of reminds me of a college dorm room only slightly more narrow. She will be unable to leave her room and will have limited visitors. She can only have four a day and that includes Nick and I (none of which can be children which unfortunately means she won't see her siblings at all during this time-major bummer for Rox). Her high dose chemotherapy will begin on Wednesday and she will be dosed every subsequent day through Sunday. On Monday she will be given back her own stem cells which were harvested back in January. Starting Monday, until her stem cells engraft, Roxie will be at her most vulnerable. The medicine is scary enough but the days that follow her actual stem cell transplant will for sure be the most intense.
I'm going in early tomorrow to decorate her transplant room before we head in later in the day for admission. I have so many wonderful cards and letters that have been mailed to us over the last 7 months. I've saved them all and have them in a box labeled, Roxie's recovery. I'm going to cover her walls with as many as I can so that we can randomly go to the "wall of hope" for a little inspiration whenever we start to feel a little blue. We can't take much else in as a way to stay occupied due to the rules and regulations of the bone marrow transplant floor, but they assure us that they have many ways of keeping the kids busy.
Our basement is 98% complete and just amazing. Over a dozen people and companies have been responsible for bringing this project to fruition and Nick and I are so grateful. The girls LOVE the space and spend the majority of our indoor playtime down there already. It's still unbelievable to me that we've doubled our living space. It's perfect. It's also "just in time' as Wendy will be up tomorrow from Cape to help during the week days over the next month and a half. After sharing a bed with Greta through most of chemo, I know she's SO going to appreciate having her own space during what is a very stressful time for us all.
We've loved our time together at home. We were able to attend a dinner function in our honor at Atlas restaurant, tour and dine with the Central County Fire Dept, play at the St. Monica carnival and just spend time together as a family. For a little while, we really felt like things were getting back to normal. Roxie's gained weight, has the color back in her eyes, the blush back in her cheeks, the spunk back in her attitude. Roxie's hair has even started to come in. It's hard to believe she's still sick because she looks and feels so good right now. It's actually the main reason that Nick and I are experiencing such anxiety about transplant tomorrow. We know that she's about to get knocked right back down both mentally and physically. I will never underestimate Roxie's ability to get back up and fight her way through another KO but it is very difficult and emotional for us as parents to continue to subject her to treatment. We know the alternative is even uglier but that still doesn't make doing what we'll have to do tomorrow any easier.
We truly feel blessed to have a cheering section dedicated to rooting for our family. It's an energy we feel and react to. Thank you for the prayers, love and support.
Roxie will be in isolation the entire time we are admitted and the time frame they're estimating is 4-6weeks. Her room is a small one, kind of reminds me of a college dorm room only slightly more narrow. She will be unable to leave her room and will have limited visitors. She can only have four a day and that includes Nick and I (none of which can be children which unfortunately means she won't see her siblings at all during this time-major bummer for Rox). Her high dose chemotherapy will begin on Wednesday and she will be dosed every subsequent day through Sunday. On Monday she will be given back her own stem cells which were harvested back in January. Starting Monday, until her stem cells engraft, Roxie will be at her most vulnerable. The medicine is scary enough but the days that follow her actual stem cell transplant will for sure be the most intense.
I'm going in early tomorrow to decorate her transplant room before we head in later in the day for admission. I have so many wonderful cards and letters that have been mailed to us over the last 7 months. I've saved them all and have them in a box labeled, Roxie's recovery. I'm going to cover her walls with as many as I can so that we can randomly go to the "wall of hope" for a little inspiration whenever we start to feel a little blue. We can't take much else in as a way to stay occupied due to the rules and regulations of the bone marrow transplant floor, but they assure us that they have many ways of keeping the kids busy.
Our basement is 98% complete and just amazing. Over a dozen people and companies have been responsible for bringing this project to fruition and Nick and I are so grateful. The girls LOVE the space and spend the majority of our indoor playtime down there already. It's still unbelievable to me that we've doubled our living space. It's perfect. It's also "just in time' as Wendy will be up tomorrow from Cape to help during the week days over the next month and a half. After sharing a bed with Greta through most of chemo, I know she's SO going to appreciate having her own space during what is a very stressful time for us all.
We've loved our time together at home. We were able to attend a dinner function in our honor at Atlas restaurant, tour and dine with the Central County Fire Dept, play at the St. Monica carnival and just spend time together as a family. For a little while, we really felt like things were getting back to normal. Roxie's gained weight, has the color back in her eyes, the blush back in her cheeks, the spunk back in her attitude. Roxie's hair has even started to come in. It's hard to believe she's still sick because she looks and feels so good right now. It's actually the main reason that Nick and I are experiencing such anxiety about transplant tomorrow. We know that she's about to get knocked right back down both mentally and physically. I will never underestimate Roxie's ability to get back up and fight her way through another KO but it is very difficult and emotional for us as parents to continue to subject her to treatment. We know the alternative is even uglier but that still doesn't make doing what we'll have to do tomorrow any easier.
We truly feel blessed to have a cheering section dedicated to rooting for our family. It's an energy we feel and react to. Thank you for the prayers, love and support.
Happy Mother's Day
5.14.2012
I've been delayed in getting up a new post for two main reasons. The first is because I returned my laptop to work in late April and trying to get any lengthy typing done on the iPad is nearly impossible. Not to mention as soon as I sit down with the iPad I'm swarmed by the children who immediately insist it happens to be the exact same time that they need to play Tinkerbell, feed their dolphins, see who's ready to draw or watch one of their shows on Netflix. The iPad was a wonderful gift to Nick and I back when we were originally diagnosed however as soon as we downloaded a couple of different apps for the kids it very quickly no longer was ours but theirs. We even got them little Leapster pads at Christmas time and they were not fooled. Nick was kind enough to let me use his laptop today to just to send out an update.
The other main reason I haven't written in a while is because I'm scared speechless. We are in an unusual situation, a non ideal one and I really haven't wanted to talk about it because I think I'm in a bit of denial. It all began after my last post. Of the pre bone marrow transplant testing, the CT scan showed nodules in her lungs. When her doctor found the nodules he ordered a test to determine if they were fungus (Aspergillus) and the test came back positive. That's when they scheduled her for a lung biopsy. Their hope was that the lung biopsy would help them identify even more specifically what type of fungus it was to treat it with a more exact (rather than generalized) anti fungal medication. The biopsy was sent to pathology and they found that there was no fungus rather the nodules were MRSA. So the good news was there were antibiotics she could take to clean up the MRSA but the bad news is this fungal infection that we don't know a lot about.
Apparently fungal infections are difficult to remedy and usually take a long period of time to do so - like months to a year. She only acquired the infection because of her compromised immune system. Right now she is non symptomatic and feels the best she has in over 8mos. The problem is that we still need to be treating neuroblastoma and the next step is heading into transplant. Heading into transplant with a fungal infection increases the mortality rate of a bone marrow transplant from 10-20% to 60-70%. When you put a child through high dose chemotherapy, eradicating any immune system, a fungal infection can very quickly run rampant and take their life. Transplant was already pushed back by a month from April 30th-May 27th to see if the medicine she's on can clear some of it up. The other awful part of this time: every day we continue to push back the transplant, leaving the neuroblastoma untreated, we are vulnerable to regrowth of the cancer cells she's worked so hard up until now to get rid of. We are right in the middle of being stuck between a very big rock and a very big hard place.
So we've spent this time treating Roxie with two different anti fungals, given to her intravenously for a little over an hour three times a day. She's also taking oral antibiotics. But, like I said before she feels better than she has in a long time so we're also making the most of this time together.
We were able to head over to Lafayette, IN to visit my Grandma on her birthday. I hadn't been to visit her since the Driscoll reunion in September of 2011. I love my Grandma so much. Her mom was the original Roxie. :) I try to get over to IN at least 3-4 times a year to visit with her. One of those visits is always right around our birthdays so we can celebrate together. I was so excited to be able to make it this year. She's a very special lady to me. My family's struggles had been weighing on her heart and I was so happy she was able to visit with us and see Roxie and Walker both feeling and looking well. I hope it brought some peace to her.
We also made it down to Carbondale, IL to meet up with the Van Winkle side of my family. All of us were there to witness my nephew, Alex, receive his first communion. Alex looked like such a young man in his suit and tie. He did great and even managed to keep down the communion wine (it was touch and go there for a second). We left the church and headed back to Julie's parents house where Julie's sister's family and some of Casey and Julie's friends all gathered for a delicious meal. The kids loved playing together and running around. It was a beautiful Sunday afternoon with Aunts and Uncles and cousins everywhere!
Roxie's been able to attend school right along with Greta. They had their Mother's Day Tea last week where they perform all of their songs (including this little light of mine) for the moms. It was awesome. A little unexpectedly, Greta was very upset by having to stay on stage while I sat in the audience so she ended up sitting in my lap and enjoying the show from my side. I loved every minute of watching Roxie sing and have fun. For just a moment I felt a little sad seeing her lined up with all of her friends because it was the first time it was really obvious to me how much the chemo has stunted her growth, but I snapped right out of it and enjoyed the lovely treats and gifts they had waiting for us back in their classrooms.
We found out that the science fair project Sawyer had worked on with her Grandma made it all the way through to the city science fair and took a blue ribbon. She also tried out for the talent show with one of her best friends from school and made it! There's less than two weeks before school is out for the summer and I still can't believe how quickly this school year flew by.
One of the best nights for the girls was one of the most stressful for me. Nick figured out that the big medicinal syringes that hold Roxie's anti fungals work really well as water guns. So in the middle of the kitchen while I was preparing dinner a full on water fight broke out. I was able to coax them to take it outside (by yelling my head off) which only partly solved the problem because the girls kept running inside to tell on Nick before devising a plan of attack to gang up on him before heading back outside, all the while dripping wet. It was one of those scenarios for Moms where that saying, "it's all fun and games..." starts running on loop in your head. Thankfully no one got hurt and I'm sure they'll remember how much fun that night was forever.
We were able to meet up for another shoot with Stephanie Cotta Photography. Stephanie is a master at capturing real moments, exactly how you see your kids. Those images are precious to me. Stephanie is also unendingly patient and positive with her subjects. When you see the still shots she shares of all of the beautiful children and babies she takes pictures of, you very rarely think of the chaos that takes place behind the shoot. Whenever we're with her and my kids are EVERYWHERE doing EVERYTHING and then she still somehow manages to work with them and turn out gorgeous photos, I realize that's how she spends her whole day. I think she is incredibly talented. Roxie loves her too so it's always fun for me to see them together.
There's been several trips to the zoo, lots of playtime outside, a trip to Busch stadium for a Cardinals game and meals with family and friends. It's been a wonderful three weeks. The only problem is that while I've been enjoying it 90% of the time, 10% of the time I'm wondering if these trips to see family and special times may be Roxie's last. All of the fun feels deceiving at times, like the calm before the storm. We have to head back to the hospital this week to redo all of her scans. The best outcome would be a cleared up fungal infection and still no evidence of disease (NED). That's what I've been praying for with every single second I have.
Today is Mother's Day and we're having a great day. I have some hilarious cards and Sawyer made me a very cool mouse pad. Nick gave me the same gift he has for the past three years, season tickets for Sawyer and I to the Muny. We had brunch with the entire Reuther side of the family and will finish the day with just our crew outside at the Boat House in Forrest Park. I love my family. I love being a mom.
There's also other neuroblastoma mom's that are in my heart today. There's Liam's mom, there's Tanner's mom, there's Ronan's mom, there's Justin's mom, there's Max's mom, there's Brooke's mom, there's Maddie's mom, there's Baily's mom, there's Alec's mom. All children and their mom's who have touched me and who know to well how neuroblastoma can make life ugly and beautiful all at the same time. St. Baldrick's posted this note a couple of days ago from a mother who is helping to take her child through a cancer diagnosis (Krissy Dietrich Gallagher). I really liked it and wanted to share a portion of it. Happy Mother's Day to you all.
"Moms do things selflessly. We sacrifice our free time, our career goals, our neat homes and our hot bodies for the sake of our children. We sometimes do it begrudgingly, but we do it nonetheless. And we rarely get thanked for it, nor do we even expect to. But after watching a video from the author of The Middle Place and Lift, about the Thank You note that moms really want and deserve from their children on Mother’s Day, I couldn’t help but add a few of my own. Of course, I will keep doing all that I do whether I get thanked or not, as will we all, but it sure is nice to imagine….
Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o'clock in the morning when I'm woken by some stranger taking my blood pressure. Thank you for sleeping with me in my (very narrow) hospital bed even though it means you can’t roll over or you’ll get tangled in my IV lines. And thank you for learning very early on how to silence the IV pump machine when it beeps, usually just as soon as I’ve dozed off to sleep. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun. Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me fed and entertained through hour after hour and day after day in the hospital. Thank you for never failing to flush my PICC line every eight hours, even when that eight-hour mark comes at midnight and you've just crawled into your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts. Thank you for not letting me get away with everything just because I’m sick and for laying the foundation for my future because you fully expect me to have one."
This little light of mine...
4/18/2012
We just returned home from our third day in a row at the hospital, going through testing for bone marrow transplant. Friday morning we are scheduled to meet with the Dr. to review their outcome and sign consent forms for transplant. Today's test were a big deal. The MIBG scan is a test where they use dye (administered to her the day before) as a tracer to identify living neuroblastoma by lighting it up. It lets them see the progress she's made while going through chemo and also would show if there were any new spots that weren't there before. They also took a CT scan as well as bone marrow biopsies. She was under anesthesia for a little over three hours.
Once she was out of testing they called me back and I laid with her as she groggily shook off the medicine and slowly woke up. She wasn't in the best mood and immediately demanded peanut butter crackers. For days like today when she goes under she can't eat leading up to the tests. It's probably one of the hardest things Roxie would tell you she has to deal with. It's very difficult to tell a hungry three year old that she can't eat over and over and over again. But I was prepared with peanut butter crackers in hand (and a half dozen other options just in case pb crackers weren't what she was craving) and gave them to her one at a time as she ate two whole packages with her eyes closed the entire time.
The nurse came in and mentioned that she was going to draw some blood because after the scans the transplant team had requested it to run additional tests. She didn't know why or what the tests where for. I began talking out loud and also half way to the nurse that these tests and their results were stressing me out almost more than anything we'd gone through yet. She said she couldn't imagine. I knew I was going to have to spend the next two days wondering and despite my best efforts, worrying about what they were going to tell us on Friday morning.
Friday is my birthday. Celebrating it is literally the last thing on my mind. When Nick asked me what I wanted to do, I told him I wanted to keep it as low key as possible and maybe go on a dinner date with either the whole family or just him. I really could care less about the day being my birthday except for now I was concerned that at the meeting they might have news to share that I wouldn't want to hear and then every year on my birthday moving forward it would undoubtedly replay in my head.
As I was laying there with Roxie waiting for them to get the orders to take the test, I held her, put my lips on her head and just closed my eyes to pray. Not long after, Roxie's Dr. unexpectedly walked in which concerned me and at which point I immediately told her, "Dr. Shapiro, these tests have got me on my last nerve. I am seriously stressed out. I don't know if I can make it until Friday". Her smile was sweet and genuine. She said, "I'm sure they are." She told me that once she'd seen them she wanted to come down to review with me their findings on the scans right away. The CT scan showed that there are nodules in Roxie's lungs. The doctors feel strongly that they are there because of a fungal infection. The blood tests were to determine if in fact it is the fungal infection they think it is so that they can go ahead and have Roxie take the medicine that would clear that up. She needs that cleared up before bone marrow transplant. They have no reason to believe they are cancerous at all. She also told me that on the CT scan they were able to see that a portion of Roxie's liver was dead. It is a small area that was probably caused by an artery getting nicked during surgery. Her liver is otherwise healthy and full functioning. Roxie's hearing tests show that there is hearing loss. Roxie is officially hearing impaired. It's likely she will end up with hearing aids. This isn't good news, but it isn't new news either. We were told to anticipate this type of hearing loss from the very beginning of her treatment.
Everything she had discussed seemed manageable but I was obviously most anxious about hearing the results of the MIBG scan. Dr. Shapiro said she was very happy with the results of the MIBG scan. Then she said the magic words, "Nothing lit up, nothing. Currently there is No Evidence of Active Disease." I got teary eyed and said, "Oh my God, I think I'm going to throw up." She started laughing and getting a little teary eyed and said, "Well, please don't throw up on me." I couldn't believe it, I was in shock. I told the Dr how the poor nurse had just been subjected to listening to me spiral about my stress level. After that news it certainly was relieved. I didn't throw up -we were laughing and smiling and so happy. Then out of nowhere I practically yelled, "Why isn't Nick here to hear this? He's always here, he would love to hear this!!!" Then I knew why. Back in November, the day that we went into the Emergency Room for abdominal pain, Nick was keeping Roxie preoccupied in the toy room when the doctor came into our room where I was all by myself (nursing Walker) and told me, "Roxie has cancer. There is a mass growing off of her kidney. We have an ambulance waiting to transfer you down to Children's Hospital were you will be admitted onto the oncology floor." My first thought then was, "Why isn't Nick here? I don't know how I'm going to tell him this when he comes back in, he'll be destroyed." I got to redo that earlier moment with him today when he got home from work but with the right kind of news you want to tell your best friend about their daughter's health. It was awesome. A little bit of a karmic moment.
As of right now we have every reason to rejoice and celebrate that Roxie has thus far responded to treatment and will be heading into Bone Marrow Transplant with No Evidence of Disease. Everything about today's MIBG scan is phenominal news. However, we're still moving forward in fighting mode. The disgusting part about this disease is we have to get rid of every last neuroblastoma cell, every last neuroblastoma cell or it will surely come back. We still have about 8 months of treatment to go between transplant and antibody/immunotherapy. Then, we pray it stays away. For us to declare complete success we'll need five years of event free survival. Today's news was the best news we could have gotten at this point in her treatment and it gave us exactly what we needed, a second wind.
When we left the hospital, Roxie asked me to roll down her window and then she put her face into the wind and closed her eyes. Then she sparked up and yelled out to me, "Hey mom, you want to hear the song we sang at school today?" When I said of course she immediately began singing, "This little light of mine, I'm gonna let it shine. This little light of mine, I'm gonna let it shine...hide it under a bushel, NO- I'm gonna let it shine, hide it under a bushel, NO- I'm gonna let it shine..let it shine, let it shine, let it shine." I cried the whole way home from the front seat thinking - That's right Roxie, nothing lit up on that scan - the ONLY light shining today is yours and you keep showing us all it cannot be put out. Thank you God for today and every day.
Thank You! Thank You! Thank You!
4/15/2012
Let's see if I can get you up to speed. I apologize in advance because I have a ton to write about. The idea of keeping blog posts short and sweet is a fabulous concept but I very rarely have the time to sit down to type and frequently by the time I do, the "topic" I intended to write about originally has already changed. That's what's happened this time around. I feel like there's several things worth mentioning and I'm not sure when I'm going to be in front of the computer again so...here we go.
Round 6 was completed with very little complications. Roxie had a couple of days of nausea once we were home but nothing close to unmanageable. The surprising result of Round 6 was a lot more sadness than usual. She really missed her siblings, her home and Nick and I when we would swap places at the hospital. It was, for me, a little foreshadowing into how tough Bone Marrow Transplant (which is what's next on the agenda beginning April 30th) is going to be for her.
So we left the hospital from Round 6 on March 30th and I was determined to make the month of April dedicated to getting all of us, but especially Roxie, as physically, mentally, emotionally and spiritually healthy as possible before heading into BMT. Bone Marrow Transplant will keep Roxie admitted and isolated at the hospital for up to 6 weeks. It's a process that takes place in a very small room that Roxie is not allowed to leave nor see her siblings. She's allowed 4 visitors in a day and that includes Mom and Dad. The process itself is extremely intense. She's given high dose chemotherapy, meant to knock her socks off- that takes Roxie and her counts all the way down to zero. The medicine they will be giving her is so strong she will actually need to bathe every couple of hours in order to avoid the burning of her skin as it seeps out of her system. It's enough to make you cry, I know - I have. At the point of zero, Roxie will be given her own stem cells (which were taken from her and put on ice after Round 2) as a salvage to the beating her bone marrow will take during the chemo. She will be vulnerable to infection and sickness for 100 days following transplant. That's basically May-August.
We started April off great with lots of activity and great weather and time spent together as a family. One day we headed up to the zoo. Roxie insisted on walking the long way to the entrance but about a 1/4 of the way into the walk she said she was tired. When I asked if she needed me to hold her she said, "No, but I think we should go up into the woods for a minute and find me a walking stick." So we did. We found one that was just the right height and she walked the rest of the way.
The Sunday after we came home Nick left on a travel assignment for work and between surgery, round 6 and travel we'd seen very little of each other. He came home very late on Wednesday night- April, 4th. The next morning Roxie wasn't feeling so great and didn't want to go to school. Since Nick and I hadn't had any time with each other, we decided to head to breakfast, just the two of us. We got Sawyer and Greta off to school and Jen kept watch over Roxie and Walker at home. I was thrilled. We've had SO little time together. Nick opened my doors, he even sat on the same side of the booth as me(kinda lame but kinda cute right?). We had a chance to talk about regular stuff and some of the upcoming medical decisions. We were gone with time to ourselves for a little over an hour and by the time we got home Roxie was running a low grade fever. It took us all of 15min to get in touch with the Dr. on call and load up for a trip to the emergency room. We ended up getting admitted to the hospital for the next five days. We spent Easter on the floor keeping our streak of spending every major holiday of 2012 so far at the hospital.The good news is the Easter Bunny visited our room and we ended up having a great day.
The first three days we were there though were hard on Roxie and took a toll on me too. Seeing her so sick just brings back all of the realness about the gravity of our situation. Additionally it threw me off my game of making April a time to reconnect and get healthy before BMT so I was bummed more than usual about the stay. We made it through though and like always Roxie amazed us all with how quickly her counts recovered allowing us to return home.
The biggest change in our time home since the fever is the responsibility we now carry for administering her antibiotics. One of her dosages was for every 6 hours intravenously, lasting two hours from beginning to end. So it would take me about 10-15min to start the infusion, then it runs it's course for two hours at which point it take me about 5-10min to unhook her and hep lock her line and then her next dose would need to be started in a little over three hours. It literally kicked my butt. Since we've been home I haven't slept at all. Between medicine dosing, Roxie's around the clock appetite, baby nursing, Greta cuddling and Sawyer's morning routine - I've gotten less sleep than I ever have in my lifetime...and with this family, I'm used to being tired but this was on another level. In one week I was getting less sleep than most people routinely get in a night. It's making me a loopy mess. We should be done with all of that fuss in the next couple of days. Thank goodness.
Now here's the big announcement I couldn't wait to share...How do you eat an elephant? One bite at a time. One of the things I've been working on and was able to accomplish and have been anxiously awaiting to blog about was that I was able to take care of ALL of our medical expenses through February of 2012. It took me at least two weeks to organize all of the bills and call in payments one at a time. Our unexpected hospital admission sidelined the process for a week but once we were home, it was back to the business of paying bills. The last two months of 2011 alone included two trips to the ER, labor, delivery and newborn expenses, two major surgeries (Walker's heart and Roxie's initial biopsy), nearly three weeks of hospital admittance for two patients and the beginning of chemo treatments. There is no way this would have been possible without amazing benefit coverage through Nick's employer (JM&A) and the generous donations that have been made to our family in the name of Team Roxie supplementing our out of pocket expenses. It's an unexplained relief to have this resolved. We will still have expenses to deal with moving forward but to be able to cover last year's expenses, with three of us as patients means- we've already eaten a very large portion of that elephant!!! Thank You! Thank You! Thank You! There are no words!!!
The other big milestone that took place last week was my last day with ReachLocal. I loved working in digital advertising. I would have loved nothing more than to be able to continue moving forward with my professional ambitions in the space. My company was overly considerate of our personal situation and afforded me the time necessary to determine if executing my responsibilities in the role of Internet Marketing Consultant would be possible moving forward. Since we're heading into Bone Marrow Transplant and it's going to occupy the majority of my time and mental resources for easily the next quarter, I felt it was only fair to be honest with the company I've so proudly represented for the last three years and leave with the door open for future opportunities. It's one of the more difficult things I've ever had to do. I really love working, being a professional. I'm good at what I do. Yes, it's tough losing roughly 50% of our household's income but even more troubling to me is the feeling that taking a "time out" from my career, even temporarily, is going to squash my momentum. Silly in perspective to what life has given us to deal with, but a genuine reaction to walking away from something that fulfilled me as an individual. Once Roxie is stronger and the more intense part of treatment is behind us, I look forward to finding a new professional opportunity.
I grew up in Florida and spent countless days at the beach. One of the things I remember doing is choosing to walk oceanfront to a different location to meet friends or family - you know, a different beach club, hotel or surf location where they were hanging out. A lot of the times the choice to walk the beach was made because it would be a sunny, beautiful day with a nice breeze and packed sand making it easy to walk on. And on a day like that you could easily see your final destination appearing as if it was just a ways down the beach so you'd start your trek. After a long time walking though you would realize that the clear visual of your destination was terribly deceiving and you still had a long way to go. By this point you'd be equidistant from the point that you started and where you were heading so you'd continue with your walk only now, change in tides make the sand you're walking in a lot softer and filled with broken sea shells and your shoulders would start to feel hot indicating the sun had probably already done some serious damage and you are only half way there. Of course the upside of being in that position is that well, you were still walking on the beach. That's how I feel about where we are in Roxie's treatment. We're about half way through but these next couple of months will probably be the hardest and most uncomfortable for Roxie and our family. Of course the upside here is, like I mentioned in my last post, we still have Roxie. We really appreciate that we don't feel like we're on this walk alone. As always thank you so much for continuing to keep us in your thoughts and prayers.
This whole week we will be at the hospital daily for tests and scans to see how treatment is going. What we want (need) to see is that the chemo was effective and that there is no evidence of disease (NED). Transplant is meant to clean up any minimal residual disease (MRD) that goes undetected. Please keep us in your thoughts and prayers as we get through this week.
On Easter, we are grateful & choose to celebrate
4/08/2012
5 months ago I posted for the first time about Roxie's diagnosis. It happened to be on Thanksgiving. Here I am on Easter Sunday posting, not in the same room but two doors down from where I was in November. We're here because Roxie had a fever on Thursday when her counts were low. It turned out to be a nasty blood infection. The antibiotics that were given to her killed the bad bacteria but also all of the good bacteria so the second night we were admitted she developed "cdiff". It's basically the worse bacteria left to run amok once the good stuff is gone in her gut causing fever, cramping and diarrhea. She's also picked her lip raw. It's a bad habit that developed the day we were admitted 5 months ago. She would start picking at her lips when the room would fill with men and women in white coats talking over her but also about her. It's a nervous, self soothing stress reliever. But when you have no counts, raw lips can't heal themselves and therefore now we have open wounds right at the entrance to her mouth. Her last steri strip from her surgery incision fell off while we've been here this time. Right now, right this minute Roxie is on three different antibiotics, she's received blood and platelets, she's scarred from top to bottom of her abdomen, she's the thinnest she's ever been since all of this started ( weighing in at 24lbs), she's no hair, a bloody lip and feels crummy. Her physical appearance is a far cry from the images we had taken of our family the day we were admitted in November. She's our forever changed little girl. But guess what else is different about her from 5 months ago? Even in her current state, she's 100x healthier!
Nothing about this is easy. Nothing about this is pleasant. We've watched Roxie go through hell and back time and time and time again. But we still have her, we still have the best of her. And for her, for now...we're moving in the right direction. 5 months ago we had no idea how much time we had. We had no idea if her disease would respond to treatment. We had no idea what kind of toll this would take on our family. We had no idea if we were even strong enough to handle this load. But so far her disease is responding to treatment, our family is truly doing fine and - with the love and support we've received lifting us up and (certaintly not achievable without faith), turns out we are pretty damn strong. We still have a looooong way to go but today, on Easter, for a million reasons (just like Thanksgiving 5 months ago) we are grateful and choose to celebrate.
5 months ago I posted for the first time about Roxie's diagnosis. It happened to be on Thanksgiving. Here I am on Easter Sunday posting, not in the same room but two doors down from where I was in November. We're here because Roxie had a fever on Thursday when her counts were low. It turned out to be a nasty blood infection. The antibiotics that were given to her killed the bad bacteria but also all of the good bacteria so the second night we were admitted she developed "cdiff". It's basically the worse bacteria left to run amok once the good stuff is gone in her gut causing fever, cramping and diarrhea. She's also picked her lip raw. It's a bad habit that developed the day we were admitted 5 months ago. She would start picking at her lips when the room would fill with men and women in white coats talking over her but also about her. It's a nervous, self soothing stress reliever. But when you have no counts, raw lips can't heal themselves and therefore now we have open wounds right at the entrance to her mouth. Her last steri strip from her surgery incision fell off while we've been here this time. Right now, right this minute Roxie is on three different antibiotics, she's received blood and platelets, she's scarred from top to bottom of her abdomen, she's the thinnest she's ever been since all of this started ( weighing in at 24lbs), she's no hair, a bloody lip and feels crummy. Her physical appearance is a far cry from the images we had taken of our family the day we were admitted in November. She's our forever changed little girl. But guess what else is different about her from 5 months ago? Even in her current state, she's 100x healthier!
Nothing about this is easy. Nothing about this is pleasant. We've watched Roxie go through hell and back time and time and time again. But we still have her, we still have the best of her. And for her, for now...we're moving in the right direction. 5 months ago we had no idea how much time we had. We had no idea if her disease would respond to treatment. We had no idea what kind of toll this would take on our family. We had no idea if we were even strong enough to handle this load. But so far her disease is responding to treatment, our family is truly doing fine and - with the love and support we've received lifting us up and (certaintly not achievable without faith), turns out we are pretty damn strong. We still have a looooong way to go but today, on Easter, for a million reasons (just like Thanksgiving 5 months ago) we are grateful and choose to celebrate.
Surgery is a beast.
3/17/2012
Surgery is a beast. It's one of those things you're extremely grateful for and then at the same time hate everything about it. Everyday we think she's getting better and moving in the right direction but it is still extremely difficult to see her so uncomfortable. Wednesday Nick made Roxie get out of bed to walk to the bathroom. On her way there, shuffling her feet she said with annoyance in her tone, "This is terrible. This really hurts." Once Nick helped her up on the potty, he and I both couldn't help but shake our heads and smile a little bit. She seriously is way too small to say such adult things.
I knew that surgery was going to be tough and once we received the news that everything had gone well, we were so relieved. Dr. Warner was able to remove 95% of the tumor without damaging any or her internal organs, veins or arteries. I had been consumed about the surgery in a sense that had more to do with what we were trying to accomplish. Surgery is a big step in Roxie's treatment and I didn't want to put her through it without the best results. The mind trick part of that was knowing that the best results would only come from a longer, aggressive, more potentially dangerous procedure and that's a weird thing to want for your child. I knew the more that was left in her might even further increase her chance of a relapse and would undoubtedly mean more radiation (with radiation, LESS is more in lowering long term side effects - one of which is another type of cancer). So the day before surgery I was struggling with my prayers - "Please God, protect Roxie's life while in surgery." then "Please God, help communicate to Dr. Warner the confidence we have in him to go as far as he can." It felt as if one prayer was in total contradiction to the other. I was so thankful when the day was over and both had been accomplished. We had a good 1/2 hour of celebrating and then we went back to see her...
I was never as upset leading up to surgery as I thought I might be. I was anxious and nervous but wasn't as emotional as I thought I should be. The second we saw her post op, I knew what I had been saving it all up for. I didn't have a breakdown just then (that would come later) but my heart hurt so bad to see her. You're thrilled to see her alive and optimistic about getting her healthy but totally destroyed to see her with IVs in each wrist, lines coming from her broviac, an ng tube in her nose, sensor stickers all over her abdomen, the dressing on her 8" incision, her entire chest covered in betadyne, her skin discolored a sickly white while she's laying there motionless. You immediately know the next several days aren't going to be pretty. Nick and I held her and kissed her. She'd wake up every now and then, understandably disoriented by the pain. They were moving us to the PICU and we were prepared for how the next several days would play out. One of the things that was communicated to us time and time again was that a large part of the healing process would come from getting her up and moving. Ideally we would manage her pain enough to push her to sit up, try to walk and help keep her lungs from collapsing. Managing her pain was a bit of a puzzle and unfortunately one that didn't get truly solved until Wednesday morning. So here's kind of the breakdown on what led to my breakdown-
-Monday night Roxie is still heavily sedated from the medication from surgery. An epidural had been placed to control some of her post op pain. Roxie is comfortable. We make a last minute decision that I leave to go home instead of Nick as only one parent can stay in the PICU overnight and I have a teething, nursing baby that I think would be unfair to keep on a floor where patients are trying to rest and recover. As soon as I'm on the road home I hate that I just left her.
-Tuesday morning I arrive at the hospital to see Roxie sitting in Nick's lap (he's holding her like a baby) watching cartoons. He tells me the night went well and everyone thinks it's great she's already out of bed. He leaves to head home to get ready for the day. Shortly after he leaves, Roxie is in pain. The nurses call for anesthesia to come and try to help. They come, they're very caring and concerned about getting her comfortable. It appears as the surgery meds are coming out of her system, she's also metabolizing some of the epidural medicine and the coverage has become spotty. They increase her epidural medicine dosage. They also explain that the epidural wouldn't mask gas pains so we needed to keep Roxie moving in order to release that pressure.
-Tuesday afternoon she's running a fever and still in pain, I'm losing my patience. They say a fever can be normal after surgery but after about the first two days if they still have one they start looking for a sign of infection. Everyone knows that surgery isn't a cake walk and she's not supposed to feel great but this is intense pain. She's not screaming and crying or carrying on like a scared toddler but focused, shaking, silent with tears streaming down the outside corner of her eyes. She works hard not to move a muscle and no one expects her to until this gets resolved. The anesthesiologist returns with an additional pain relief medicine that gets administered through her IV in addition to the epidural. Roxie seems relieved. Nick returns.
-Tuesday evening the surgery nurse practitioner comes in to assess Roxie. She apologizes for the Dr. not attending but there's a bus crash in southern Missouri and the students are being life flighted in to Children's. Surgery is very busy. Roxie was already going to be moving eventually to the surgery recovery floor out of the PICU and now these poor kids coming in need the PICU room more than Roxie does so they hurry us up to the 10th floor. The nurses on 10 are in the middle of a shift change. Now some are working longer than expected and even others are being called in because of the bus crash, things are a little busy. They take Roxie's vitals, check her incision, get her all settled in and move on to other patients. Nick heads home and for the first time since Walker's been born, takes him(without me) and some pumped milk for the night . I'm not going anywhere.
- Tuesday night hours pass, Roxie is still running a fever and in pain. I also realize that since we've arrived on the 10th floor no one's come back in to look at her belly. I pull up her shirt for the first time since Monday night and see that it's huge, swollen. I'm not sure if I should be overly concerned bc I don't know if it's been like this for awhile, is normal and I was just unaware until now. I go out to talk to the nurse, she comes in and checks and says that when Roxie came up on the 10th floor her belly was soft and not swollen. She calls for a surgeon to come and check on Roxie. A surgeon arrives close to midnight. He tells me he thinks it's just gas but we should keep an eye on it. They'll be back for rounds between 5-6am and they'll reevaluate then. Now I'm left with a sweet baby girl who is in pain from gas and no way to help her relieve it because she's in too much pain to move. And when the Dr. says, "we'll keep an eye on it" that means it's my job for the next 5hrs.
-Wednesday early morning - Roxie sleeps only when she's exhausted from being in pain on and off all night. I'm up with her all night. Her belly stays firm and tight. The night nurse is doing a great job of caring for Roxie but isn't typically a surgery nurse. She's on the floor for the night just to help with the overflow from the bus accident. She's not exactly sure what's normal. She runs blood labs around 4am(standard) and what comes back is a high white blood cell count. I'm thinking that's good, she says they're so high that it's a possible indication that she's fighting an infection. Now I'm thinking the pain, fever, swollen belly might not be gas but possibly some type of infection that we've left untreated for the last 6 hours. Roxie is already on antibiotics so I ask the nurse how they would treat an infection if Roxie's already on antibiotics. She isn't sure. I wait for the Dr.s to round in the next 30 minutes. An hour goes by and the Drs aren't even on the floor to start rounds. I'm getting more and more worried. At this point, we've been conditioned that fevers and infections are BAD. One nurse even comments that Roxie's color looks off. Roxie is still in pain. I want to be informed of what happens next for my kid with cancer if what we're dealing with is an infection from surgery. It's 5:45am and I remember that Roxie's Oncology Dr. is on call so I give the exchange a call and ask them to have her call me. When she calls me back I tell her I have some questions and before I can even begin asking her what information I'm looking for, her response is something about how 5am isn't a time her head is prepared to "just answer questions" ***- cue breakdown. Before I know it I'm drilling the doctor about how disappointed I am that as a parent of a child who is HER patient she could disregard my call so easily. My voice is getting louder as I'm at this point one huge mess of stress and I'm yelling at her, "Roxie has been in pain for 36 hours, 8 of which with a tummy as swollen as it was when we were originally diagnosed and ...(then my tears and shaking start and I realize I need to get off the phone, now, before I start using choice words) reiterate to her how disappointed I am in her reaction to my call and then tell her I will talk to her later as I hang up the phone. I'm pissed, I'm steaming, I want to punch something or someone. I start pacing, I start crying, I quit doing both and go numb. I just sit on Roxie's bed with a tissue and wait for Rounds feeling like nobody here really gives a rip about her (totally and completely not true, but how I felt). The nurse walks into our room with the floor's cell phone and tells me Roxie's oncology Dr is on the phone looking for me. I take the phone from the nurse, hit the end button and tell the nurse I don't care to talk to the Oncology Dr. I sit and wait some more.
The surgeons do Rounds and feel strongly that Roxie has great bowel sounds. They are confident her swollen belly is gas that just needs to move. They do recognize though that her pain seems extreme. Therefore, I can't help my little girl relieve the pain of gas by getting her up and moving until we're able to relieve her pain from the surgery. The anesthesia team is called, the want so desperately to make sure Roxie is comfortable and are upset they weren't called in the middle of the night. They remove the epidural and start treating Roxie with a higher does of pain medication through her broviac line. The surgery team also orders blood and urine cultures to test for infection because of her continuous fever. I completely mellow. (As Roxie's mom, I'm always struggling with feeling like I'm an overly dramatic worry wart or feeling like I'm being complacent and not worrying enough. The balance between the two feels no wider than walking a tight rope and even though I think I do a pretty good job of walking the line, sometimes I misstep - in either direction).
- Wednesday afternoon, Roxie (and I) are finally resting peacefully when I get a call from Sawyer's school. Her classroom has been trying to kick a lice outbreak for over a week and today (of all days) is the day they decided to take residence on my daughter's head. She needs to picked up from school. Her head and the house need to be treated ASAP. I'm half out of my mind but Nick and I still manage to get a laugh out of this family's timing. When it rains, it pours - right?
The situation at home gets handled Wednesday night. I put all of the kids to sleep and then ask Nick's sister to come and stay at the house so I can run back up to the hospital and be with Roxie. I tag Nick out and he heads home, it's about 1am.
Thankfully Thursday and Friday are pretty uneventful. Roxie consistently ran a fever until yesterday. The cultures from her blood and urine came back negative. They ordered an ultrasound of her kidneys to make sure any manipulation from the surgery wasn't the cause of the fever. It wasn't. Her kidneys looked great and that actually made me pretty happy to see. At one point it had been mentioned that Roxie's kidney may have been damaged by it's displacement caused by the growth of the tumor. Everyone was still a little concerned about the fever but at this point thought it was just a "tumor" fever - meaning her body was taking a little bit longer to heal itself because of the size of the empty space the removal of the tumor left behind.
So here we are on Saturday. The fever has broke. She's still feeling sore. Just now, she woke up from a nap, just for a minute to tell me she misses Ginger (our dog) and that she wants to go home before falling back asleep. I'm pretty sure we'll be heading home tomorrow. I know we are all ready to be there together.
Roxie is still a trooper. Today Nick suggested we take the kids up to the rooftop garden and Roxie walked the entire way. We sat outside for a little while and when it was time to go back inside Roxie asked me if I would carry her. I told her she needed to at least walk to the elevator and then I would hold her from there. She said, " ohhhhhh kaaaaay," huffed a little and then said, "this is tough, this is going to be hard." Then she walked, through her suffering, all the way to the elevator.
One thing that still has me completely perplexed is how Roxie deals with all of this without contempt. She has never once even asked us "Why?" she has to go through these experiences. Every time she deals with something major or challenging she's never consumed with the obstacles but determined to get through them. And after each instance, what she takes away from it is always something fun or positive. The mind of a child is a beautiful thing.
Do you know what she remembers about the day we found out she had cancer and was admitted to Children's? - How cool the ambulance ride was. Never mind she was SO sick that she couldn't even keep her eyes open for the 20 minute ride. Or that she was SO sick she couldn't even tell us at the time that she enjoyed it. It was well over a month later when we saw an ambulance on the road and she asked me, "When do I get to ride in the siren truck again? That was so much fun."
Or what about the night we headed to the ER for back pain after an infusion. You know what she remembers about that? The cool silhouettes of animals that were frosted onto the glass at the entrance and the neat games they had inside in the waiting room. She calls it the "animal hospital" and asks all of the time when can we go back.
Or when we're admitted for chemo, she never questions having to come back but looks forward to sneaking up on the nurses and getting a new bracelet (her ID band).
It's exactly what I think her perspective will be of this time when she's healthy and looking back in her rear view mirror. She'll remember the cool wagons they have here, not the pokeys. She'll remember the silly, silly games her bored parents came up with while admitted, not the sweaty, uncomfortable hospital pillows. She'll remember getting to control the ipad, not having her vitals taken every 4 hours. She'll remember having Walker with her through it all - like a security blanket at the hospital, not the yucky medicine. She'll remember feeling loved and supported, not feeling sick. She'll remember crafts and cornflakes, not cancer. OK, she'll probably remember the cancer but hopefully mostly the cornflakes.
***Out of respect for our Drs I have never really written about or shared commentary from our conversations with them over the last 4months. I chose to do so today because it was a part of my surgery experience and because Roxie's Dr came to the surgery floor to speak with me face to face to clear up the phone call. She genuinely wanted to understand what had upset me so and also wanted to make it very clear that Roxie's care is absolutely a primary concern of hers. I believe her. I admire Roxie's doctor and appreciate that she wanted to make amends.
To be clear, because I think there was some confusion that the success of Roxie's surgery might change the future course of treatment, it does not. Even had they been able to remove 100% of the mass we would still have to stay on target with the COG Study. A week from Monday we'll head into a 6th round of chemo, followed by one/possibly two bone marrow transplants. Then we'll go through radiation. All of this is designed to eliminate any "minimal residual disease".After that's completed we'll begin an antibody/immunotherapy study that will last 6 months with M-F hospital admissions every 4 weeks. This study is designed to teach her body how to recognize the neuroblastoma cells and either destroy them or help them mature, I can't remember for sure - maybe even both. If all goes well, we'll be finishing Roxie's treatment early next year. We've already seen Forest Park go through three season changes out of our hospital window since diagnosis. I think for us the year will go by quickly.
Surgery is a beast. It's one of those things you're extremely grateful for and then at the same time hate everything about it. Everyday we think she's getting better and moving in the right direction but it is still extremely difficult to see her so uncomfortable. Wednesday Nick made Roxie get out of bed to walk to the bathroom. On her way there, shuffling her feet she said with annoyance in her tone, "This is terrible. This really hurts." Once Nick helped her up on the potty, he and I both couldn't help but shake our heads and smile a little bit. She seriously is way too small to say such adult things.
I knew that surgery was going to be tough and once we received the news that everything had gone well, we were so relieved. Dr. Warner was able to remove 95% of the tumor without damaging any or her internal organs, veins or arteries. I had been consumed about the surgery in a sense that had more to do with what we were trying to accomplish. Surgery is a big step in Roxie's treatment and I didn't want to put her through it without the best results. The mind trick part of that was knowing that the best results would only come from a longer, aggressive, more potentially dangerous procedure and that's a weird thing to want for your child. I knew the more that was left in her might even further increase her chance of a relapse and would undoubtedly mean more radiation (with radiation, LESS is more in lowering long term side effects - one of which is another type of cancer). So the day before surgery I was struggling with my prayers - "Please God, protect Roxie's life while in surgery." then "Please God, help communicate to Dr. Warner the confidence we have in him to go as far as he can." It felt as if one prayer was in total contradiction to the other. I was so thankful when the day was over and both had been accomplished. We had a good 1/2 hour of celebrating and then we went back to see her...
I was never as upset leading up to surgery as I thought I might be. I was anxious and nervous but wasn't as emotional as I thought I should be. The second we saw her post op, I knew what I had been saving it all up for. I didn't have a breakdown just then (that would come later) but my heart hurt so bad to see her. You're thrilled to see her alive and optimistic about getting her healthy but totally destroyed to see her with IVs in each wrist, lines coming from her broviac, an ng tube in her nose, sensor stickers all over her abdomen, the dressing on her 8" incision, her entire chest covered in betadyne, her skin discolored a sickly white while she's laying there motionless. You immediately know the next several days aren't going to be pretty. Nick and I held her and kissed her. She'd wake up every now and then, understandably disoriented by the pain. They were moving us to the PICU and we were prepared for how the next several days would play out. One of the things that was communicated to us time and time again was that a large part of the healing process would come from getting her up and moving. Ideally we would manage her pain enough to push her to sit up, try to walk and help keep her lungs from collapsing. Managing her pain was a bit of a puzzle and unfortunately one that didn't get truly solved until Wednesday morning. So here's kind of the breakdown on what led to my breakdown-
-Monday night Roxie is still heavily sedated from the medication from surgery. An epidural had been placed to control some of her post op pain. Roxie is comfortable. We make a last minute decision that I leave to go home instead of Nick as only one parent can stay in the PICU overnight and I have a teething, nursing baby that I think would be unfair to keep on a floor where patients are trying to rest and recover. As soon as I'm on the road home I hate that I just left her.
-Tuesday morning I arrive at the hospital to see Roxie sitting in Nick's lap (he's holding her like a baby) watching cartoons. He tells me the night went well and everyone thinks it's great she's already out of bed. He leaves to head home to get ready for the day. Shortly after he leaves, Roxie is in pain. The nurses call for anesthesia to come and try to help. They come, they're very caring and concerned about getting her comfortable. It appears as the surgery meds are coming out of her system, she's also metabolizing some of the epidural medicine and the coverage has become spotty. They increase her epidural medicine dosage. They also explain that the epidural wouldn't mask gas pains so we needed to keep Roxie moving in order to release that pressure.
-Tuesday afternoon she's running a fever and still in pain, I'm losing my patience. They say a fever can be normal after surgery but after about the first two days if they still have one they start looking for a sign of infection. Everyone knows that surgery isn't a cake walk and she's not supposed to feel great but this is intense pain. She's not screaming and crying or carrying on like a scared toddler but focused, shaking, silent with tears streaming down the outside corner of her eyes. She works hard not to move a muscle and no one expects her to until this gets resolved. The anesthesiologist returns with an additional pain relief medicine that gets administered through her IV in addition to the epidural. Roxie seems relieved. Nick returns.
-Tuesday evening the surgery nurse practitioner comes in to assess Roxie. She apologizes for the Dr. not attending but there's a bus crash in southern Missouri and the students are being life flighted in to Children's. Surgery is very busy. Roxie was already going to be moving eventually to the surgery recovery floor out of the PICU and now these poor kids coming in need the PICU room more than Roxie does so they hurry us up to the 10th floor. The nurses on 10 are in the middle of a shift change. Now some are working longer than expected and even others are being called in because of the bus crash, things are a little busy. They take Roxie's vitals, check her incision, get her all settled in and move on to other patients. Nick heads home and for the first time since Walker's been born, takes him(without me) and some pumped milk for the night . I'm not going anywhere.
- Tuesday night hours pass, Roxie is still running a fever and in pain. I also realize that since we've arrived on the 10th floor no one's come back in to look at her belly. I pull up her shirt for the first time since Monday night and see that it's huge, swollen. I'm not sure if I should be overly concerned bc I don't know if it's been like this for awhile, is normal and I was just unaware until now. I go out to talk to the nurse, she comes in and checks and says that when Roxie came up on the 10th floor her belly was soft and not swollen. She calls for a surgeon to come and check on Roxie. A surgeon arrives close to midnight. He tells me he thinks it's just gas but we should keep an eye on it. They'll be back for rounds between 5-6am and they'll reevaluate then. Now I'm left with a sweet baby girl who is in pain from gas and no way to help her relieve it because she's in too much pain to move. And when the Dr. says, "we'll keep an eye on it" that means it's my job for the next 5hrs.
-Wednesday early morning - Roxie sleeps only when she's exhausted from being in pain on and off all night. I'm up with her all night. Her belly stays firm and tight. The night nurse is doing a great job of caring for Roxie but isn't typically a surgery nurse. She's on the floor for the night just to help with the overflow from the bus accident. She's not exactly sure what's normal. She runs blood labs around 4am(standard) and what comes back is a high white blood cell count. I'm thinking that's good, she says they're so high that it's a possible indication that she's fighting an infection. Now I'm thinking the pain, fever, swollen belly might not be gas but possibly some type of infection that we've left untreated for the last 6 hours. Roxie is already on antibiotics so I ask the nurse how they would treat an infection if Roxie's already on antibiotics. She isn't sure. I wait for the Dr.s to round in the next 30 minutes. An hour goes by and the Drs aren't even on the floor to start rounds. I'm getting more and more worried. At this point, we've been conditioned that fevers and infections are BAD. One nurse even comments that Roxie's color looks off. Roxie is still in pain. I want to be informed of what happens next for my kid with cancer if what we're dealing with is an infection from surgery. It's 5:45am and I remember that Roxie's Oncology Dr. is on call so I give the exchange a call and ask them to have her call me. When she calls me back I tell her I have some questions and before I can even begin asking her what information I'm looking for, her response is something about how 5am isn't a time her head is prepared to "just answer questions" ***- cue breakdown. Before I know it I'm drilling the doctor about how disappointed I am that as a parent of a child who is HER patient she could disregard my call so easily. My voice is getting louder as I'm at this point one huge mess of stress and I'm yelling at her, "Roxie has been in pain for 36 hours, 8 of which with a tummy as swollen as it was when we were originally diagnosed and ...(then my tears and shaking start and I realize I need to get off the phone, now, before I start using choice words) reiterate to her how disappointed I am in her reaction to my call and then tell her I will talk to her later as I hang up the phone. I'm pissed, I'm steaming, I want to punch something or someone. I start pacing, I start crying, I quit doing both and go numb. I just sit on Roxie's bed with a tissue and wait for Rounds feeling like nobody here really gives a rip about her (totally and completely not true, but how I felt). The nurse walks into our room with the floor's cell phone and tells me Roxie's oncology Dr is on the phone looking for me. I take the phone from the nurse, hit the end button and tell the nurse I don't care to talk to the Oncology Dr. I sit and wait some more.
The surgeons do Rounds and feel strongly that Roxie has great bowel sounds. They are confident her swollen belly is gas that just needs to move. They do recognize though that her pain seems extreme. Therefore, I can't help my little girl relieve the pain of gas by getting her up and moving until we're able to relieve her pain from the surgery. The anesthesia team is called, the want so desperately to make sure Roxie is comfortable and are upset they weren't called in the middle of the night. They remove the epidural and start treating Roxie with a higher does of pain medication through her broviac line. The surgery team also orders blood and urine cultures to test for infection because of her continuous fever. I completely mellow. (As Roxie's mom, I'm always struggling with feeling like I'm an overly dramatic worry wart or feeling like I'm being complacent and not worrying enough. The balance between the two feels no wider than walking a tight rope and even though I think I do a pretty good job of walking the line, sometimes I misstep - in either direction).
- Wednesday afternoon, Roxie (and I) are finally resting peacefully when I get a call from Sawyer's school. Her classroom has been trying to kick a lice outbreak for over a week and today (of all days) is the day they decided to take residence on my daughter's head. She needs to picked up from school. Her head and the house need to be treated ASAP. I'm half out of my mind but Nick and I still manage to get a laugh out of this family's timing. When it rains, it pours - right?
The situation at home gets handled Wednesday night. I put all of the kids to sleep and then ask Nick's sister to come and stay at the house so I can run back up to the hospital and be with Roxie. I tag Nick out and he heads home, it's about 1am.
Thankfully Thursday and Friday are pretty uneventful. Roxie consistently ran a fever until yesterday. The cultures from her blood and urine came back negative. They ordered an ultrasound of her kidneys to make sure any manipulation from the surgery wasn't the cause of the fever. It wasn't. Her kidneys looked great and that actually made me pretty happy to see. At one point it had been mentioned that Roxie's kidney may have been damaged by it's displacement caused by the growth of the tumor. Everyone was still a little concerned about the fever but at this point thought it was just a "tumor" fever - meaning her body was taking a little bit longer to heal itself because of the size of the empty space the removal of the tumor left behind.
So here we are on Saturday. The fever has broke. She's still feeling sore. Just now, she woke up from a nap, just for a minute to tell me she misses Ginger (our dog) and that she wants to go home before falling back asleep. I'm pretty sure we'll be heading home tomorrow. I know we are all ready to be there together.
Roxie is still a trooper. Today Nick suggested we take the kids up to the rooftop garden and Roxie walked the entire way. We sat outside for a little while and when it was time to go back inside Roxie asked me if I would carry her. I told her she needed to at least walk to the elevator and then I would hold her from there. She said, " ohhhhhh kaaaaay," huffed a little and then said, "this is tough, this is going to be hard." Then she walked, through her suffering, all the way to the elevator.
One thing that still has me completely perplexed is how Roxie deals with all of this without contempt. She has never once even asked us "Why?" she has to go through these experiences. Every time she deals with something major or challenging she's never consumed with the obstacles but determined to get through them. And after each instance, what she takes away from it is always something fun or positive. The mind of a child is a beautiful thing.
Do you know what she remembers about the day we found out she had cancer and was admitted to Children's? - How cool the ambulance ride was. Never mind she was SO sick that she couldn't even keep her eyes open for the 20 minute ride. Or that she was SO sick she couldn't even tell us at the time that she enjoyed it. It was well over a month later when we saw an ambulance on the road and she asked me, "When do I get to ride in the siren truck again? That was so much fun."
Or what about the night we headed to the ER for back pain after an infusion. You know what she remembers about that? The cool silhouettes of animals that were frosted onto the glass at the entrance and the neat games they had inside in the waiting room. She calls it the "animal hospital" and asks all of the time when can we go back.
Or when we're admitted for chemo, she never questions having to come back but looks forward to sneaking up on the nurses and getting a new bracelet (her ID band).
It's exactly what I think her perspective will be of this time when she's healthy and looking back in her rear view mirror. She'll remember the cool wagons they have here, not the pokeys. She'll remember the silly, silly games her bored parents came up with while admitted, not the sweaty, uncomfortable hospital pillows. She'll remember getting to control the ipad, not having her vitals taken every 4 hours. She'll remember having Walker with her through it all - like a security blanket at the hospital, not the yucky medicine. She'll remember feeling loved and supported, not feeling sick. She'll remember crafts and cornflakes, not cancer. OK, she'll probably remember the cancer but hopefully mostly the cornflakes.
***Out of respect for our Drs I have never really written about or shared commentary from our conversations with them over the last 4months. I chose to do so today because it was a part of my surgery experience and because Roxie's Dr came to the surgery floor to speak with me face to face to clear up the phone call. She genuinely wanted to understand what had upset me so and also wanted to make it very clear that Roxie's care is absolutely a primary concern of hers. I believe her. I admire Roxie's doctor and appreciate that she wanted to make amends.
To be clear, because I think there was some confusion that the success of Roxie's surgery might change the future course of treatment, it does not. Even had they been able to remove 100% of the mass we would still have to stay on target with the COG Study. A week from Monday we'll head into a 6th round of chemo, followed by one/possibly two bone marrow transplants. Then we'll go through radiation. All of this is designed to eliminate any "minimal residual disease".After that's completed we'll begin an antibody/immunotherapy study that will last 6 months with M-F hospital admissions every 4 weeks. This study is designed to teach her body how to recognize the neuroblastoma cells and either destroy them or help them mature, I can't remember for sure - maybe even both. If all goes well, we'll be finishing Roxie's treatment early next year. We've already seen Forest Park go through three season changes out of our hospital window since diagnosis. I think for us the year will go by quickly.
Waiting game...
3/11/12
Here we are, less than an hour away from 3/12/2012. It's a day that I have not been looking forward to for sometime so why is it so unsettling to me that I'm not as unsettled as I expected to be?
Roxie is sleeping in our bed tonight. I want to get in some serious extra cuddle time. She had a great dinner and even followed dinner up with carrots and ranch - and then had an almost midnight snack of some greek yogurt and bare naked granola (translation - good amount of protein). She also drank an entire glass of water. I'm hoping all of the above will make for a not so hungry Roxie tomorrow morning as we're waiting in anesthesia to go under.
The waiting game tomorrow is going to be tough. I'm a little nervous that once they take her away the reality of the situation is going to take me to my knees. I kind of wish they could just put me under the same time they do Rox and I could stay that way until she also wakes up. They'll be updating us from the operating room all morning and afternoon so I will be sharing what we know with you on the facebook page as the news is communicated to us.
There's a lot more on my mind right now than what I have time for to write. I'm mostly thinking about all of the things I'm grateful for. I'm also thinking about how close we are to the realization that life is fragile. I've always loved and "loved on" my kids knowing that the future isn't promised, but a day like tomorrow has me face to face with that as my new reality. I love my family and I want tomorrow to come and go and my family to be as intact at the end of the day as it is right now. It's a selfish want, but it's truth. Thank you again for all of the thoughts, prayers and signs of support. I have some praying of my own to do tonight before I (hopefully) get some sleep.
Here we are, less than an hour away from 3/12/2012. It's a day that I have not been looking forward to for sometime so why is it so unsettling to me that I'm not as unsettled as I expected to be?
Roxie is sleeping in our bed tonight. I want to get in some serious extra cuddle time. She had a great dinner and even followed dinner up with carrots and ranch - and then had an almost midnight snack of some greek yogurt and bare naked granola (translation - good amount of protein). She also drank an entire glass of water. I'm hoping all of the above will make for a not so hungry Roxie tomorrow morning as we're waiting in anesthesia to go under.
The waiting game tomorrow is going to be tough. I'm a little nervous that once they take her away the reality of the situation is going to take me to my knees. I kind of wish they could just put me under the same time they do Rox and I could stay that way until she also wakes up. They'll be updating us from the operating room all morning and afternoon so I will be sharing what we know with you on the facebook page as the news is communicated to us.
There's a lot more on my mind right now than what I have time for to write. I'm mostly thinking about all of the things I'm grateful for. I'm also thinking about how close we are to the realization that life is fragile. I've always loved and "loved on" my kids knowing that the future isn't promised, but a day like tomorrow has me face to face with that as my new reality. I love my family and I want tomorrow to come and go and my family to be as intact at the end of the day as it is right now. It's a selfish want, but it's truth. Thank you again for all of the thoughts, prayers and signs of support. I have some praying of my own to do tonight before I (hopefully) get some sleep.
So let's talk about surgery...
3/8/2012
We've had a great couple of weeks at home. Nick bought Tim McGraw's "best of" album on itunes and the weather has been so amazing that we've spent several nights around the fire pit in our back yard with the girls having "dance parties" while Nick serenades us right along with Tim. Roxie gets a little worn out every now and then but not too worn out to stop so she'll ask me to hold her while we dance. My heart always skips a beat when her face is that close to mine and I can see her expressions so clearly in the light of the fire. Sometimes she enjoys the music and being in my arms so much she'll just close her eyes while we move. Other times when I'm being silly and bouncing her to the tempo of an upbeat song she'll throw her head back and wildly giggle. I love spending time with Nick and my kids. It's my most favorite thing to do.
Last weekend Roxie's counts were still pretty low but we had been spending so much time at home that we wracked our brains for something to do that could get us all out of the house but would still be safe for Rox. Nick suggested we take a ride down to Lone Elk Park. It's a state park with a lot of free roaming animals - elk, deer, buffalo. The park is set up as a driving trail so everyone cruises through at about 2mph or under to check out the scene. Nick had taken the middle seat out of our expedition entirely so that when we arrived to the park, before we started on the trail we let the girls out of their seats so they could move from one side of the car's windows to the other side freely in the open space. They loved it. We came to a pic nic area opening that was vacant and decided we should let the girls out to stretch their legs. To the left of the clearing was an incline that Roxie declared immediately, "I want to climb up to the top of that hill." So off Nick, Roxie and Greta went. About a fourth of the way up the girls asked Nick to carry them. He went as far as he could with a girl in each hand and then made the choice to start heading back down. Roxie was bummed they didn't keep going. I love that in a perfectly level space to run and play Roxie found the challenge. I also love that she didn't say, " Let's start climbing and see how far we can make it." From GO she wanted to make it to the top. This kind of gumption has always been a part of Roxie's strong personality but to see it still exist after all she's been through is a huge comfort.
We had to make a trip to the hospital for scans last week and a couple of other unexpected trips, once for platelets and once for blood. All of which, at this point, for us is NBD. Sorry, that's kind of an inside joke between Nick and I and well, I guess now you too - it stands for No Big Deal. We're finding a little bit of humor in the fact that we're becoming accustomed to some things that under most circumstances would be major deals. I can call him and say, "Labs came back from the blood draw this morning and her hemoglobin is recklessly low. She needs to head up for a transfusion, it should take about four hours but really it's NBD."
The scans from last week came back and were what was expected. The tumor is smaller. I was disappointed. The Dr was surprised by my disappointment and before she could even ask me why, Nick spoke for me. He said, "She's not going to be satisfied until this thing is entirely gone." I went home and reviewed the sizes of the tumor from the initial scan, to the second scan (after round 2 of chemo) to compare it to this latest scan's numbers. I became kind of obsessed with finding something tangible that was of similar measurements. I found some things in the pantry that worked for the purpose of giving me a visual. I snapped a pic to post with this blog entry. We're definitely going in the right direction. I'm still in disbelief this thing is in my daughter at all.
So let's talk about surgery because that's what's next for us. We're scheduled for March 12, 2012. Surgery has me extremely nervous. We met with the surgeon last Thursday. As soon as he told us the procedure was going to take all day, ALL day - and that her incision would be much bigger than the initial incision made during her biopsy(which isn't little), it's the first time since our original admission that I physically felt sick. I was able to stay tuned in enough to concentrate on the rest of the conversation. It's going to be difficult. Neuroblastoma likes to grow around things like organs, veins and arteries and encompass them when it expands so it's not as simple as just getting into Roxie and removing the mass. It's referred to as a resection because it requires the surgeon to dissect areas of the mass without damaging the other vital areas of her insides. Ideally we would love to see it all removed but really surgery is just a step in her overall treatment plan and believe it or not, it would be best to leave some behind than to be too aggressive and damage organs. She needs her organs to sustain her through the rest of chemotherapy treatments. The surgeon's name is Dr. Warner. He said he prays before every surgery and when he asked if we had any final questions Nick just said, "Please take care of our little girl." He said, "I will operate on her as if she were my own daughter." Nick liked that answer. I just want the day to already be over with, but we're actually going to have to go through it first. Please, Please keep our family, Dr. Warner and especially Roxie in your thoughts and prayers next Monday. I know we will all be on edge as we wait outside the doors of the operating rooms for the news that the surgery is complete. We want as much of the tumor, if not all of it, safely removed and for Roxie to come out of surgery alive and as well as she can be from 8 hours of being open and under anesthesia. The surgeon said he expects she'll spend a couple of days following surgery in the ICU before moving to the regular recovery floor on 10 for up to a week.
Before we head into surgery on Monday we'll all be attending the St. Baldrick's event on Saturday. Nick and a handful of other guys will be shaving their heads for Team Roxie. I am thankful that we have something to occupy some of our thoughts or mine would continue to be consumed by the surgery. It should be a fantastic day filled with positive acts of support and love for children fighting cancer. Even better, all of the fun isn't just for raising spirits but for raising money. St. Baldrick's is one of, if not the, largest non profit grant writers for pediatric cancer research. We're talking millions of dollars raised. In fact I think I recently read that they are already past 12million dollars raised in 2012. Nick and the "Team's" shave time is 3:15pm. I'm looking forward to cheering them all on. I know there's several other local Team Roxie members that are planning to be in attendance. We also know we'll see several of Roxie's oncology nurses shaving their heads too. The children on floor 9 really have those nurses hearts. They were actually the ones who even filled us in on the event. We'll make sure to snap some photos and share the success of the event.
In other Schopp family news - Walker is hours away from rolling over for the first time and the little guy talks all of the time. We're all in love and think he's the most handsome Walker baby ever! Sawyer won first place at her school's science fair and moved onto the divisional competition which she also won. Next is the county competition and I'm pretty confident that the work she and her grandma did on the project will take her all the way to the Greater St. Louis science fair. We'll keep you posted. I also had parent/teacher conferences for Sawyer and learned the wonderful news that she increased a reading level, is a good friend and leader in class, and does a great job speaking up for herself. She recently joined the running club and I dropped her off bright and early this morning for their first day. Greta is precious. There isn't anything I don't like about 2. She's funny, bright, stubborn and a big lovey dovey. Her imagination is running wild these days and sometimes it's hard to keep up. Just the other day Jen was running out the door to take Sawyer to dance and I said, "Wait, let me give Greta some kisses." I ran over to grab her and we were giving big hugs and I was giving her some good kisses on her neck, the whole time she was squealing with delight. When I was finished on her neck, (she was still making silly squealing noises) I gave her a couple of kisses on the lips and when I was done she stopped for just a minute, blinked her eyes a couple of times while she bobbed her head up and down and then leaned in (for what I thought was going to be a kiss back) and licked me, straight up from my chin to my nose. Then she panted for a minute and said, "I'm a puppy. By mommy!" All day, every day Greta knocks my socks off. My kids keep me sane. I love them.
The Team Roxie crew also did it again - about a week ago I woke up to an email that said I was invited to join the Team Roxie page on Facebook ( www.facebook.com/TeamRoxie ). By the time I visited the page they'd already spread the news and had over 200 supporters that had "liked" the page. I was also able to get back in to Stephanie Cotta's studio with Roxie for some updated photos. The images she captures are so special to me. At the end of the shoot she asked me if I would mind if she shot a quick video of Roxie. I told her to go ahead but I don't think either of us thought she would sit that long for questions. The video turned out priceless and I'm so grateful to have it. Roxie and I have watched it at least 10 times since Stephanie posted it to the Team Roxie facebook page. I can't tell you how blessed I feel to have so many friends who operate on a high level of talent in their professional fields helping and supporting me through this. I really appreciate all of the work these ladies and gentlemen are doing to help spread awareness about our situation and Roxie's disease. It is not something I could have ever done on my own.
We've had a great couple of weeks at home. Nick bought Tim McGraw's "best of" album on itunes and the weather has been so amazing that we've spent several nights around the fire pit in our back yard with the girls having "dance parties" while Nick serenades us right along with Tim. Roxie gets a little worn out every now and then but not too worn out to stop so she'll ask me to hold her while we dance. My heart always skips a beat when her face is that close to mine and I can see her expressions so clearly in the light of the fire. Sometimes she enjoys the music and being in my arms so much she'll just close her eyes while we move. Other times when I'm being silly and bouncing her to the tempo of an upbeat song she'll throw her head back and wildly giggle. I love spending time with Nick and my kids. It's my most favorite thing to do.
Last weekend Roxie's counts were still pretty low but we had been spending so much time at home that we wracked our brains for something to do that could get us all out of the house but would still be safe for Rox. Nick suggested we take a ride down to Lone Elk Park. It's a state park with a lot of free roaming animals - elk, deer, buffalo. The park is set up as a driving trail so everyone cruises through at about 2mph or under to check out the scene. Nick had taken the middle seat out of our expedition entirely so that when we arrived to the park, before we started on the trail we let the girls out of their seats so they could move from one side of the car's windows to the other side freely in the open space. They loved it. We came to a pic nic area opening that was vacant and decided we should let the girls out to stretch their legs. To the left of the clearing was an incline that Roxie declared immediately, "I want to climb up to the top of that hill." So off Nick, Roxie and Greta went. About a fourth of the way up the girls asked Nick to carry them. He went as far as he could with a girl in each hand and then made the choice to start heading back down. Roxie was bummed they didn't keep going. I love that in a perfectly level space to run and play Roxie found the challenge. I also love that she didn't say, " Let's start climbing and see how far we can make it." From GO she wanted to make it to the top. This kind of gumption has always been a part of Roxie's strong personality but to see it still exist after all she's been through is a huge comfort.
We had to make a trip to the hospital for scans last week and a couple of other unexpected trips, once for platelets and once for blood. All of which, at this point, for us is NBD. Sorry, that's kind of an inside joke between Nick and I and well, I guess now you too - it stands for No Big Deal. We're finding a little bit of humor in the fact that we're becoming accustomed to some things that under most circumstances would be major deals. I can call him and say, "Labs came back from the blood draw this morning and her hemoglobin is recklessly low. She needs to head up for a transfusion, it should take about four hours but really it's NBD."
The scans from last week came back and were what was expected. The tumor is smaller. I was disappointed. The Dr was surprised by my disappointment and before she could even ask me why, Nick spoke for me. He said, "She's not going to be satisfied until this thing is entirely gone." I went home and reviewed the sizes of the tumor from the initial scan, to the second scan (after round 2 of chemo) to compare it to this latest scan's numbers. I became kind of obsessed with finding something tangible that was of similar measurements. I found some things in the pantry that worked for the purpose of giving me a visual. I snapped a pic to post with this blog entry. We're definitely going in the right direction. I'm still in disbelief this thing is in my daughter at all.
So let's talk about surgery because that's what's next for us. We're scheduled for March 12, 2012. Surgery has me extremely nervous. We met with the surgeon last Thursday. As soon as he told us the procedure was going to take all day, ALL day - and that her incision would be much bigger than the initial incision made during her biopsy(which isn't little), it's the first time since our original admission that I physically felt sick. I was able to stay tuned in enough to concentrate on the rest of the conversation. It's going to be difficult. Neuroblastoma likes to grow around things like organs, veins and arteries and encompass them when it expands so it's not as simple as just getting into Roxie and removing the mass. It's referred to as a resection because it requires the surgeon to dissect areas of the mass without damaging the other vital areas of her insides. Ideally we would love to see it all removed but really surgery is just a step in her overall treatment plan and believe it or not, it would be best to leave some behind than to be too aggressive and damage organs. She needs her organs to sustain her through the rest of chemotherapy treatments. The surgeon's name is Dr. Warner. He said he prays before every surgery and when he asked if we had any final questions Nick just said, "Please take care of our little girl." He said, "I will operate on her as if she were my own daughter." Nick liked that answer. I just want the day to already be over with, but we're actually going to have to go through it first. Please, Please keep our family, Dr. Warner and especially Roxie in your thoughts and prayers next Monday. I know we will all be on edge as we wait outside the doors of the operating rooms for the news that the surgery is complete. We want as much of the tumor, if not all of it, safely removed and for Roxie to come out of surgery alive and as well as she can be from 8 hours of being open and under anesthesia. The surgeon said he expects she'll spend a couple of days following surgery in the ICU before moving to the regular recovery floor on 10 for up to a week.
Before we head into surgery on Monday we'll all be attending the St. Baldrick's event on Saturday. Nick and a handful of other guys will be shaving their heads for Team Roxie. I am thankful that we have something to occupy some of our thoughts or mine would continue to be consumed by the surgery. It should be a fantastic day filled with positive acts of support and love for children fighting cancer. Even better, all of the fun isn't just for raising spirits but for raising money. St. Baldrick's is one of, if not the, largest non profit grant writers for pediatric cancer research. We're talking millions of dollars raised. In fact I think I recently read that they are already past 12million dollars raised in 2012. Nick and the "Team's" shave time is 3:15pm. I'm looking forward to cheering them all on. I know there's several other local Team Roxie members that are planning to be in attendance. We also know we'll see several of Roxie's oncology nurses shaving their heads too. The children on floor 9 really have those nurses hearts. They were actually the ones who even filled us in on the event. We'll make sure to snap some photos and share the success of the event.
In other Schopp family news - Walker is hours away from rolling over for the first time and the little guy talks all of the time. We're all in love and think he's the most handsome Walker baby ever! Sawyer won first place at her school's science fair and moved onto the divisional competition which she also won. Next is the county competition and I'm pretty confident that the work she and her grandma did on the project will take her all the way to the Greater St. Louis science fair. We'll keep you posted. I also had parent/teacher conferences for Sawyer and learned the wonderful news that she increased a reading level, is a good friend and leader in class, and does a great job speaking up for herself. She recently joined the running club and I dropped her off bright and early this morning for their first day. Greta is precious. There isn't anything I don't like about 2. She's funny, bright, stubborn and a big lovey dovey. Her imagination is running wild these days and sometimes it's hard to keep up. Just the other day Jen was running out the door to take Sawyer to dance and I said, "Wait, let me give Greta some kisses." I ran over to grab her and we were giving big hugs and I was giving her some good kisses on her neck, the whole time she was squealing with delight. When I was finished on her neck, (she was still making silly squealing noises) I gave her a couple of kisses on the lips and when I was done she stopped for just a minute, blinked her eyes a couple of times while she bobbed her head up and down and then leaned in (for what I thought was going to be a kiss back) and licked me, straight up from my chin to my nose. Then she panted for a minute and said, "I'm a puppy. By mommy!" All day, every day Greta knocks my socks off. My kids keep me sane. I love them.
The Team Roxie crew also did it again - about a week ago I woke up to an email that said I was invited to join the Team Roxie page on Facebook ( www.facebook.com/TeamRoxie ). By the time I visited the page they'd already spread the news and had over 200 supporters that had "liked" the page. I was also able to get back in to Stephanie Cotta's studio with Roxie for some updated photos. The images she captures are so special to me. At the end of the shoot she asked me if I would mind if she shot a quick video of Roxie. I told her to go ahead but I don't think either of us thought she would sit that long for questions. The video turned out priceless and I'm so grateful to have it. Roxie and I have watched it at least 10 times since Stephanie posted it to the Team Roxie facebook page. I can't tell you how blessed I feel to have so many friends who operate on a high level of talent in their professional fields helping and supporting me through this. I really appreciate all of the work these ladies and gentlemen are doing to help spread awareness about our situation and Roxie's disease. It is not something I could have ever done on my own.
Look mom, I can twirl again!
2/23/2012
Round 5 resulted in more than the regular amount of sickness, as expected. Roxie started to vomit the second day we are admitted and is still vomiting at home. The unusual part about my daughter is that she still eats and drinks in between being sick. I'm still shocked that she has a strong enough appetite and apparently even a stronger stomach. While it doesn't all stay down, I can only imagine each little bit that is absorbed does her body good.
Last Saturday we were scheduled to be discharged from the hospital and I had my first major sickness scare. I had come home from the hospital late Friday night after Nick and I had changed places to stay with Rox, when I heard it. It was a little after midnight and Greta called for me in her sleep. The nasal stuffiness was instantly unmistakable in her voice. Later that night she actually woke up and all it took was one cough to clearly hear that what ever was causing the congestion in her sinuses was also in her lungs. I panicked. I couldn't sleep. All that kept going through my head was an email I had received from school two weeks prior about RSV going around and friends of mine whose sweet babies had already had their scare. I knew that Roxie could not come home to a house where the RSV virus was present. I felt horrible that Greta was feeling so nasty and that the solution to this potential problem might have to be separating my family for an even longer period of time than just our hospital stay. I did the worst thing possible since I couldn't sleep and started reading about RSV in immunodeficient kids, and it was bad. All the worst, I also learned (while now sharing a bed with Greta on one side and Walker on the other) that infants with congenital heart disease should also steer CLEAR of RSV. It seemed that the house of cards had finally collapsed on top of me. All I wanted to do was take care of Greta while she was feeling lousy but there's no way I could jeopardize Roxie's health either. And since I had just spent the week at the hospital with Roxie, and Nick was going to be off of work for a handful of days-I thought Greta, Walker and I would stay elsewhere after Roxie came home. But with Walker also in a bad spot if he caught it, now I actually had to consider potentially sending her somewhere else until she was better without me. Then I also thought about the time Greta and Roxie had spent together all day that Friday and was freaking that Roxie might have already been exposed. I was spiraling and it all seemed about as dramatic as Sophie's Choice ( which is a movie I've actually never seen, but I know is full of drama and having to make a decision about which kid to pick). Fortunately my pediatrician could fit us in on Saturday morning to be tested. As soon as we arrived at the pediatrician's the "sick" waiting room was already full. Since I had no inclination that Walker was sick just yet, after I signed in I told the nurses they could find me waiting in the hall when they were ready. I went outside and with Walker sleeping in his car seat and Greta running her own race up and down the hall, I slid down the wall to sit down and hung my head and started to cry. I barely had time for the tears to fall when they came out to bring us in. I wiped up, went inside and had all three of us tested for RSV and the flu. All tests came back negative. Everyone was majorly relieved. Crisis averted. The nurses almost drop kicked us out of there as soon as they could because they knew the office was full of germs that morning. She also told us on the way out that RSV, flu A and flu B were making the rounds big time so on their advice we've been keeping everyone home from school for awhile. Sawyer, of course still goes because she's mature enough to understand how to keep her hands clean and that she shouldn't share the little guy's sippy cups. :) The episode made me realize how ridiculously grateful I am that Roxie (and our entire family) has not been plagued with sickness through her treatment. We are very fortunate to be able to enjoy our time together as a family without these types of concerns adding to the stress-fullness of this situation that is already hard to bare at times. It also taught me another lesson in the waste of worrying, which is crucial in learning how to get through this one day at a time.
While we were in for Round 5, again I was floored by the strength and liveliness Roxie displays. During chemo there is anti nausea medicine they give Roxie to help curb the yucky feelings and they can give up to three different kinds based on what level of yucky Roxie is experiencing. You start with one and if that manages the pukiness you don't need to add the second or third. As long as her nauseousness is managed, you would never know she felt poorly. We were at a point where Roxie was taking the first and the second and was still getting sick and we still had two more days left of receiving chemo. But in between being sick Roxie was still trying to get up and moving. So we knew we just needed to manage the nauseous feeling so she could continue to enjoy her days. On our last day there I talked to the nurses about adding the third anti nausea med knowing from Round 3 that the week after receiving the chemo at home was the toughest. I asked if there was any reason we shouldn't give it to her. She told me because it basically made them sleep all of the time. Roxie had been sick enough times that last day that I knew for the next 48 hours at least we might need to use it and then back off of the third and ultimately the second and first anti nausea meds as time passed. The nurse administered the dose through her IV and said it would take about 10 minutes before the sand man would visit. It was also nap time for Roxie so we all expected her to hit the pillow sooner than later. 10 minutes went by, 15 minutes went by and at 20 minutes feeling better but apparently not tired, Roxie asked to take a couple of laps around the floor on her tricycle. I am telling you, this kid doesn't quit! She spent the whole week pushing through feeling rough and ended up playing with her sisters, making crazy cool music with the music therapist, hanging out with the nurses, countless trips to and from the playroom on Floor 8 and learned to ride a tricycle. She's amazing.
At the end of our stay she was just as excited as ever to get unhooked from her machine. The scene following being detached was almost the exact same as after Round 4 only very quickly before she began to make a dash for the door to go run in the halls she said, "Look mom, I can twirl again!" and immediately did a one foot, full rotation spin and then landed on both feet before raising onto her tippy toes with her hands over her head just like a ballerina. It hadn't even occurred to me that would be something a 3yr old girl would miss doing for a week, twirling. She's so cool.
Tomorrow is a momentous day in Roxie's treatment. She goes under for her first CT scan since diagnosis to see what progress we've made on the mass with chemo. The scan results will also determine the course of action for surgery and it's difficulty. From there Nick and I will have to make some serious decisions about her care. We are anxious about tomorrow because we obviously want positive news about the tumor's response to treatment. But tomorrow also serves as a major milestone in the timeline of her treatment. We've made it through quite a chunk of her "road map' already. I am so proud of my family. We really are a team. Things are different around here, no doubt but we're all truly doing our best to love and care for each other before ourselves and it's working. Sawyer asked me a tough question not that long ago. She was concerned about how we would handle "all of our sadness" if we were ever to lose Roxie. I answered honestly telling her that I do not know because I cannot even imagine life without everything Roxie in it but I DO know that we would all get through it together, as a family. My prayer is that we never have to find out how difficult that would be. For now, this family of mine is proving everyday what we're made of, where our hearts are, who we're looking to for guidance and that life can be full of joy even when times are tough.
Round 5 resulted in more than the regular amount of sickness, as expected. Roxie started to vomit the second day we are admitted and is still vomiting at home. The unusual part about my daughter is that she still eats and drinks in between being sick. I'm still shocked that she has a strong enough appetite and apparently even a stronger stomach. While it doesn't all stay down, I can only imagine each little bit that is absorbed does her body good.
Last Saturday we were scheduled to be discharged from the hospital and I had my first major sickness scare. I had come home from the hospital late Friday night after Nick and I had changed places to stay with Rox, when I heard it. It was a little after midnight and Greta called for me in her sleep. The nasal stuffiness was instantly unmistakable in her voice. Later that night she actually woke up and all it took was one cough to clearly hear that what ever was causing the congestion in her sinuses was also in her lungs. I panicked. I couldn't sleep. All that kept going through my head was an email I had received from school two weeks prior about RSV going around and friends of mine whose sweet babies had already had their scare. I knew that Roxie could not come home to a house where the RSV virus was present. I felt horrible that Greta was feeling so nasty and that the solution to this potential problem might have to be separating my family for an even longer period of time than just our hospital stay. I did the worst thing possible since I couldn't sleep and started reading about RSV in immunodeficient kids, and it was bad. All the worst, I also learned (while now sharing a bed with Greta on one side and Walker on the other) that infants with congenital heart disease should also steer CLEAR of RSV. It seemed that the house of cards had finally collapsed on top of me. All I wanted to do was take care of Greta while she was feeling lousy but there's no way I could jeopardize Roxie's health either. And since I had just spent the week at the hospital with Roxie, and Nick was going to be off of work for a handful of days-I thought Greta, Walker and I would stay elsewhere after Roxie came home. But with Walker also in a bad spot if he caught it, now I actually had to consider potentially sending her somewhere else until she was better without me. Then I also thought about the time Greta and Roxie had spent together all day that Friday and was freaking that Roxie might have already been exposed. I was spiraling and it all seemed about as dramatic as Sophie's Choice ( which is a movie I've actually never seen, but I know is full of drama and having to make a decision about which kid to pick). Fortunately my pediatrician could fit us in on Saturday morning to be tested. As soon as we arrived at the pediatrician's the "sick" waiting room was already full. Since I had no inclination that Walker was sick just yet, after I signed in I told the nurses they could find me waiting in the hall when they were ready. I went outside and with Walker sleeping in his car seat and Greta running her own race up and down the hall, I slid down the wall to sit down and hung my head and started to cry. I barely had time for the tears to fall when they came out to bring us in. I wiped up, went inside and had all three of us tested for RSV and the flu. All tests came back negative. Everyone was majorly relieved. Crisis averted. The nurses almost drop kicked us out of there as soon as they could because they knew the office was full of germs that morning. She also told us on the way out that RSV, flu A and flu B were making the rounds big time so on their advice we've been keeping everyone home from school for awhile. Sawyer, of course still goes because she's mature enough to understand how to keep her hands clean and that she shouldn't share the little guy's sippy cups. :) The episode made me realize how ridiculously grateful I am that Roxie (and our entire family) has not been plagued with sickness through her treatment. We are very fortunate to be able to enjoy our time together as a family without these types of concerns adding to the stress-fullness of this situation that is already hard to bare at times. It also taught me another lesson in the waste of worrying, which is crucial in learning how to get through this one day at a time.
While we were in for Round 5, again I was floored by the strength and liveliness Roxie displays. During chemo there is anti nausea medicine they give Roxie to help curb the yucky feelings and they can give up to three different kinds based on what level of yucky Roxie is experiencing. You start with one and if that manages the pukiness you don't need to add the second or third. As long as her nauseousness is managed, you would never know she felt poorly. We were at a point where Roxie was taking the first and the second and was still getting sick and we still had two more days left of receiving chemo. But in between being sick Roxie was still trying to get up and moving. So we knew we just needed to manage the nauseous feeling so she could continue to enjoy her days. On our last day there I talked to the nurses about adding the third anti nausea med knowing from Round 3 that the week after receiving the chemo at home was the toughest. I asked if there was any reason we shouldn't give it to her. She told me because it basically made them sleep all of the time. Roxie had been sick enough times that last day that I knew for the next 48 hours at least we might need to use it and then back off of the third and ultimately the second and first anti nausea meds as time passed. The nurse administered the dose through her IV and said it would take about 10 minutes before the sand man would visit. It was also nap time for Roxie so we all expected her to hit the pillow sooner than later. 10 minutes went by, 15 minutes went by and at 20 minutes feeling better but apparently not tired, Roxie asked to take a couple of laps around the floor on her tricycle. I am telling you, this kid doesn't quit! She spent the whole week pushing through feeling rough and ended up playing with her sisters, making crazy cool music with the music therapist, hanging out with the nurses, countless trips to and from the playroom on Floor 8 and learned to ride a tricycle. She's amazing.
At the end of our stay she was just as excited as ever to get unhooked from her machine. The scene following being detached was almost the exact same as after Round 4 only very quickly before she began to make a dash for the door to go run in the halls she said, "Look mom, I can twirl again!" and immediately did a one foot, full rotation spin and then landed on both feet before raising onto her tippy toes with her hands over her head just like a ballerina. It hadn't even occurred to me that would be something a 3yr old girl would miss doing for a week, twirling. She's so cool.
Tomorrow is a momentous day in Roxie's treatment. She goes under for her first CT scan since diagnosis to see what progress we've made on the mass with chemo. The scan results will also determine the course of action for surgery and it's difficulty. From there Nick and I will have to make some serious decisions about her care. We are anxious about tomorrow because we obviously want positive news about the tumor's response to treatment. But tomorrow also serves as a major milestone in the timeline of her treatment. We've made it through quite a chunk of her "road map' already. I am so proud of my family. We really are a team. Things are different around here, no doubt but we're all truly doing our best to love and care for each other before ourselves and it's working. Sawyer asked me a tough question not that long ago. She was concerned about how we would handle "all of our sadness" if we were ever to lose Roxie. I answered honestly telling her that I do not know because I cannot even imagine life without everything Roxie in it but I DO know that we would all get through it together, as a family. My prayer is that we never have to find out how difficult that would be. For now, this family of mine is proving everyday what we're made of, where our hearts are, who we're looking to for guidance and that life can be full of joy even when times are tough.
The Pampered Chef Meets Team Roxie!!!
posted by Stephanie Cotta
http://stephaniecotta.com/?p=258
I can’t tell you how excited I was when The Pampered Chef rep, Sara Radginski contacted me about putting together a fundraiser for….. the one, the only…. Team Roxie!!!
(Side note: I LOVE how many of you are buying Team Roxie shirts – I was at the mall today and spotted a teenager sporting one and LOVED it, felt an instant bond, and thought how awesome it will be to spot these popping up all over St. Louis… or all of the country!)
Details to follow but here’s the big news – for ONE WEEK only, 30% of all Pampered Chef purchases (when made through Team Roxie) will go directly to Team Roxie!! There’s a million recipes that can be made and I already have my eye on a ton of other new products to try. And now is the time!!!
So here’s the details. Remember – one week only – 30% of all purchases will go directly to TEAM ROXIE!!
1) Go to www.pamperedchef.biz/radcooks
2) Click “Shop Online“
3) Enter “Team” for first and “Roxie” for last name.
You MUST do this or it won’t count for the fundraiser!
4) Shop, scoop up some awesome new products for your kitchen (or your friends!) and, most importantly, do something good for this incredible little girl.
Thanks Team Roxie!
I can’t tell you how excited I was when The Pampered Chef rep, Sara Radginski contacted me about putting together a fundraiser for….. the one, the only…. Team Roxie!!!
(Side note: I LOVE how many of you are buying Team Roxie shirts – I was at the mall today and spotted a teenager sporting one and LOVED it, felt an instant bond, and thought how awesome it will be to spot these popping up all over St. Louis… or all of the country!)
Details to follow but here’s the big news – for ONE WEEK only, 30% of all Pampered Chef purchases (when made through Team Roxie) will go directly to Team Roxie!! There’s a million recipes that can be made and I already have my eye on a ton of other new products to try. And now is the time!!!
So here’s the details. Remember – one week only – 30% of all purchases will go directly to TEAM ROXIE!!
1) Go to www.pamperedchef.biz/radcooks
2) Click “Shop Online“
3) Enter “Team” for first and “Roxie” for last name.
You MUST do this or it won’t count for the fundraiser!
4) Shop, scoop up some awesome new products for your kitchen (or your friends!) and, most importantly, do something good for this incredible little girl.
Thanks Team Roxie!
She loves her tee!
Wouldn't take it off for the last 48hrs.
LOVES her Team Roxie shirts Nick's Aunt Anne and Jimmy came to visit while we were there. And when they said good bye, Roxie told Jimmy "next time remember to wear your Team Roxie shirt." |
Nurse's wear my tee!
She loves them! I asked her what her favorite part of going to the
hospital. Her answer was, "when the
nurses wear my Team Roxie shirt." Cracked me up.
Probably about 1/2 dozen nurses half them, more ordered this week! |
"Thank you for coming to my party, I love you."
Last Thursday Sawyer's school organized a blood drive. The event was special for our family and thoughtful of her school because not only was it a great way to support Roxie's fight it also recognized Sawyer for being an amazing big sister. The blood drive was organized in about 6 weeks and the Red Cross official explained to us that they're typically organized anywhere between 4-6months out. In that 6 week period, every single slot time was signed up for and there were also enough walk ins that they ran out of bags and had to wrap up early. It was a very successful blood drive. We were fortunate to be able to be there in person and say thank you to those who came. Roxie ran around being her silly self with her sisters. For 4 hours, through the doors was a steady stream of Team Roxie shirts. Nick and I were also glad to be in attendance because for us it was the first time getting to see some of our favorite people. It was wonderful to give hugs and give thanks. I'll tell you the part of the blood drive that made me feel proud, 27 donors were giving blood for the very first time. We all know giving blood isn't a pleasure cruise. I myself feel like fainting every time they just tie a band around my arm. I was moved by all of those that gave, but because we've gone through so many uncomfortable 1sts in the past 12 weeks that made us face some of our worst fears, I was very touched that those 27 donors maybe overcame one of theirs that day in a sign of solidarity. Again, blood products are VITAL to the treatment of children with cancer.
The weekend came and my best friend was kind enough to arrange a quick trip into St. Louis to spend some quality time with me. She flew in from FL on Friday and by the time Roxie, Walker and I were done with testing at the hospital, Addy was at my house when I got home. Her husband kept her three beautiful children and my husband kept all four of our beautiful children on Saturday so that Addy could kidnap me and we could spend the day alone enjoying some girl time at the spa. It was the first time I can remember being away from the children in forever (even long before Walker was born). We realized while we were there that in our 15 year friendship this was our first "spa day" and decided right there on the spot this should probably become our new annual tradition. We laughed too loud and talked too long, cried a little and did all of the things best friends do. Sunday morning she was on a plane by 10am. I missed her by noon.
The week started off with a big bang as the Grand Slam Sports fundraiser on Monday for our family was a huge success. Again, we were THRILLED to be able to attend. The event took place at Five Guys Burger and Fries on N. Ballas where they were broadcasting their 590 KFNS talk radio show live. When I received the email that this had been planned I was teary eyed immediately. The whole thing seemed so, right. This particular Five Guys is OUR Five Guys and (something no one but those caring for Roxie would understand) they played a HUGE part in her initial recovery. When Roxie was sick as a dog after our initial diagnosis every time she even remotely came to she would ask for a "hangerburger" with cheese and mustard and fries. It didn't matter if it was 8am or 9pm, it's the meal she would order. We would order the meal just to have the food delivered and then watch it sit uneaten until we threw it away and then repeated the whole process the next time she woke up. I remember the Drs telling me, when I asked them about nutrition, that in the beginning they just want her to get calories. When she's ready to eat, feed her what she asks for they'd say because you never know how long the desire to eat will last. Boy were they right. After three weeks of watching Roxie waste away becoming thinner and thinner- when Roxie said she was hungry for a burger and fries we'd all break to see who could find the keys the fastest and make a mad dash to our Five Guys. After some time she'd at least take a bite before falling back asleep. Then a bite became half a burger. Then her appetite came back in such full force she almost made herself sick inhaling french fries.They played a huge part in what we'll remember forever as getting her back on her feet and eating normally. Her diet is a bit more balanced these days ;) but she still LOVES her Five Guys burgers and fries.
So Monday morning Roxie and Greta went to school very excited about their Valentine's Day parties. Walker and I headed up to the fundraiser and Nick grabbed the girls after school and met us there. The place was packed. Smiling faces everywhere. Hungry men, women and children chowing down on burgers(and even veggie burgers) to support our family. It was awesome! Again, we got to hug and thank people we haven't been able to catch up with in person in forever. As soon as I came through the doors I spotted Dave Greene and the Grand Slam team and almost lost it. Their support and time in organizing the event was overwhelming. There were sports packages for every major team in St. Louis and even air time to host your own talk show as items to be auctioned off. I chose to celebrate the day and revel in the company of our friends instead of being a cry baby. Nick and I both were constantly giving each other quick words of encouragement to steer clear of having a break down. We'd pass each other and in a brief 5 seconds (whoever didn't have the red glassy eyes) would say, "Are you cool? Do you need a minute?" With each hand that we shook or stranger we met that told us they were praying for our daughter it got a little harder to keep our composure. There really is nothing I could say to explain the feeling of knowing that people are thinking about our daughter and want her to do well. The time we spent there felt like a huge pep rally for Team Roxie as Tuesday we would be heading back in for Round 5. It was a great day and the community rallied. Big thanks to Grand Slam Sports, Five Guys and all involved for hosting a day we will never forget.
It caught the attention of one of our local Fox channel broadcasters, Andy Banker, who came out at the end of the day to cover the story. He arrived just as the radio broadcasters were wrapping up their show and were asking Roxie if she wanted to say anything on air. They handed her the mic and she promptly said, "Thank you for coming to my party. I love you.", in her tiny little girl voice. It was pretty darn cute. Andy has a three year old little girl of his own so even though we were all just meeting it didn't take long for him to identify with some of the emotions we're experiencing. While the Fox crew was there they just sat back and observed Roxie in her element, being where and with people she loves. Again, Team Roxie shirts were everywhere! Andy was fascinated/amazed by the Team Roxie story and I am as well. He asked for either Nick or I to sit down and talk with him for the spot that would air and Nick (he might kill me for writing this) said he wasn't sure he'd be able to without getting choked up so we decided I would. When I told Andy that Nick was worried about tearing up, Andy (he might kill me for writing this) said, "So am I." as he looked away to collect his thoughts. Then wouldn't you know it, I'm the one who lost my composure during the interview.
That night when we pulled into our drive way it seemed the fun was over. It had been a wonderful time for us at home between rounds and especially that day but it was bed time and there was much to do before we left the next day to be admitted for another week in the hospital. I know Nick and I were both going through mental check lists as we sat there silently when out of the back seat came Roxie's voice, "Hey guys, it's still snowing. Can I put on my boots and we all go play in the back yard?" Seriously, how can you say no to that and honestly, Nick was pleased because he's a big snow bug too. The to do list went on the back burner for another hour and Nick and the girls had a great time putting new foot prints all over our back yard of fresh snow. These simple moments to make a memory have an entirely new meaning to us.
Yesterday we headed back in for chemo and the day was pretty uneventful. It's actually a little disturbing how used to this process we are. The only thing romantic about my Valentine's day was Roxie and I taking turns proposing to each other. A few weeks ago(the last time we were in the hospital) was the first time she asked me to marry her and she was very serious about her delivery. It took me by such surprise that I responded as if it had been a real proposal. I picked her up, cried, gave her a big hug and told her yes, of course I'd marry her and be her wife. When Nick arrived at the hospital that night, I told him about our engagement. He immediately played right into it and said disappointingly, "Hey Roxie, why didn't you ask me?" To which she replied with a chuckle and a jeez type of tone, "Da aad, don't be silly, you're not a princess." She got such a laugh out of us with that one that proposing and perfecting our proposals has become kind of a game. When we checked in yesterday, there were Valentine's Day gifts waiting for Roxie including a small silk red rose. She upped her proposal by using it as a prop to give to me after she professed her undying love. Nice move Cassanova.
The weekend came and my best friend was kind enough to arrange a quick trip into St. Louis to spend some quality time with me. She flew in from FL on Friday and by the time Roxie, Walker and I were done with testing at the hospital, Addy was at my house when I got home. Her husband kept her three beautiful children and my husband kept all four of our beautiful children on Saturday so that Addy could kidnap me and we could spend the day alone enjoying some girl time at the spa. It was the first time I can remember being away from the children in forever (even long before Walker was born). We realized while we were there that in our 15 year friendship this was our first "spa day" and decided right there on the spot this should probably become our new annual tradition. We laughed too loud and talked too long, cried a little and did all of the things best friends do. Sunday morning she was on a plane by 10am. I missed her by noon.
The week started off with a big bang as the Grand Slam Sports fundraiser on Monday for our family was a huge success. Again, we were THRILLED to be able to attend. The event took place at Five Guys Burger and Fries on N. Ballas where they were broadcasting their 590 KFNS talk radio show live. When I received the email that this had been planned I was teary eyed immediately. The whole thing seemed so, right. This particular Five Guys is OUR Five Guys and (something no one but those caring for Roxie would understand) they played a HUGE part in her initial recovery. When Roxie was sick as a dog after our initial diagnosis every time she even remotely came to she would ask for a "hangerburger" with cheese and mustard and fries. It didn't matter if it was 8am or 9pm, it's the meal she would order. We would order the meal just to have the food delivered and then watch it sit uneaten until we threw it away and then repeated the whole process the next time she woke up. I remember the Drs telling me, when I asked them about nutrition, that in the beginning they just want her to get calories. When she's ready to eat, feed her what she asks for they'd say because you never know how long the desire to eat will last. Boy were they right. After three weeks of watching Roxie waste away becoming thinner and thinner- when Roxie said she was hungry for a burger and fries we'd all break to see who could find the keys the fastest and make a mad dash to our Five Guys. After some time she'd at least take a bite before falling back asleep. Then a bite became half a burger. Then her appetite came back in such full force she almost made herself sick inhaling french fries.They played a huge part in what we'll remember forever as getting her back on her feet and eating normally. Her diet is a bit more balanced these days ;) but she still LOVES her Five Guys burgers and fries.
So Monday morning Roxie and Greta went to school very excited about their Valentine's Day parties. Walker and I headed up to the fundraiser and Nick grabbed the girls after school and met us there. The place was packed. Smiling faces everywhere. Hungry men, women and children chowing down on burgers(and even veggie burgers) to support our family. It was awesome! Again, we got to hug and thank people we haven't been able to catch up with in person in forever. As soon as I came through the doors I spotted Dave Greene and the Grand Slam team and almost lost it. Their support and time in organizing the event was overwhelming. There were sports packages for every major team in St. Louis and even air time to host your own talk show as items to be auctioned off. I chose to celebrate the day and revel in the company of our friends instead of being a cry baby. Nick and I both were constantly giving each other quick words of encouragement to steer clear of having a break down. We'd pass each other and in a brief 5 seconds (whoever didn't have the red glassy eyes) would say, "Are you cool? Do you need a minute?" With each hand that we shook or stranger we met that told us they were praying for our daughter it got a little harder to keep our composure. There really is nothing I could say to explain the feeling of knowing that people are thinking about our daughter and want her to do well. The time we spent there felt like a huge pep rally for Team Roxie as Tuesday we would be heading back in for Round 5. It was a great day and the community rallied. Big thanks to Grand Slam Sports, Five Guys and all involved for hosting a day we will never forget.
It caught the attention of one of our local Fox channel broadcasters, Andy Banker, who came out at the end of the day to cover the story. He arrived just as the radio broadcasters were wrapping up their show and were asking Roxie if she wanted to say anything on air. They handed her the mic and she promptly said, "Thank you for coming to my party. I love you.", in her tiny little girl voice. It was pretty darn cute. Andy has a three year old little girl of his own so even though we were all just meeting it didn't take long for him to identify with some of the emotions we're experiencing. While the Fox crew was there they just sat back and observed Roxie in her element, being where and with people she loves. Again, Team Roxie shirts were everywhere! Andy was fascinated/amazed by the Team Roxie story and I am as well. He asked for either Nick or I to sit down and talk with him for the spot that would air and Nick (he might kill me for writing this) said he wasn't sure he'd be able to without getting choked up so we decided I would. When I told Andy that Nick was worried about tearing up, Andy (he might kill me for writing this) said, "So am I." as he looked away to collect his thoughts. Then wouldn't you know it, I'm the one who lost my composure during the interview.
That night when we pulled into our drive way it seemed the fun was over. It had been a wonderful time for us at home between rounds and especially that day but it was bed time and there was much to do before we left the next day to be admitted for another week in the hospital. I know Nick and I were both going through mental check lists as we sat there silently when out of the back seat came Roxie's voice, "Hey guys, it's still snowing. Can I put on my boots and we all go play in the back yard?" Seriously, how can you say no to that and honestly, Nick was pleased because he's a big snow bug too. The to do list went on the back burner for another hour and Nick and the girls had a great time putting new foot prints all over our back yard of fresh snow. These simple moments to make a memory have an entirely new meaning to us.
Yesterday we headed back in for chemo and the day was pretty uneventful. It's actually a little disturbing how used to this process we are. The only thing romantic about my Valentine's day was Roxie and I taking turns proposing to each other. A few weeks ago(the last time we were in the hospital) was the first time she asked me to marry her and she was very serious about her delivery. It took me by such surprise that I responded as if it had been a real proposal. I picked her up, cried, gave her a big hug and told her yes, of course I'd marry her and be her wife. When Nick arrived at the hospital that night, I told him about our engagement. He immediately played right into it and said disappointingly, "Hey Roxie, why didn't you ask me?" To which she replied with a chuckle and a jeez type of tone, "Da aad, don't be silly, you're not a princess." She got such a laugh out of us with that one that proposing and perfecting our proposals has become kind of a game. When we checked in yesterday, there were Valentine's Day gifts waiting for Roxie including a small silk red rose. She upped her proposal by using it as a prop to give to me after she professed her undying love. Nice move Cassanova.
Kicking cancer isn't easy, especially for a 3 year old. But cancer hasn't met Roxie...
To watch the Fox 2 clip go here (grab a tissue, it couldn't be sweeter and more heart felt)....
http://www.fox2now.com/news/seenontv/ktvi-kfns-radio-five-guys-burger-hold-fundraiser-for-girl-fighting-cancer-20120213,0,5803493.story
All the snow in the world couldn't stop Team Roxie, Monday night. Team Roxie is a growing group of people rallying behind the Schopp family of Creve Coeur. Roxie Schopp, 3, and her newborn brother, Walker, 3 months, developed nearly fatal medical conditions at nearly the exact same time.
KFNS Radio and Five Guys Burgers and Fries joined the team Monday, holding an all day, all night, fundraiser to help the family with out of pocket medical and other expenses. Roxie has a rare form of cancer neuroblastoma.
While she was at Children's Hospital, being diagnosed, her parents had to run Walker from the 9th floor of the hospital to the ER. He had an unknown heart problem coarctation of his aorta. It nearly killed him. An emergency surgery saved his life.
"I'm making castles," Roxie said, playing with her friends at 5 Guys.
Roxie stole the show from radio host, Kevin Slaten: a young princess making castles out of Dixie Cups, as he helped raise money for her cause. She has inspired an effort that has swelled beyond her parents' comprehension.
"Team Roxie is kind of amazing," her mother, Holly said.
"When you're kid isn't well you kind of want everything to stop until they can make her better. But you know that's not how it`s going to happen," she said, breaking into tears.
"Knock, knock," Roxie said to her father, Nick. "Who's there?" he answered. "Roxie," was the answer. "Roxie who?" asked dad. "Roxie loves you," she answered, giving her dad a smooch. The sweet little girl was about 14 hours from heading back to Children's Hospital for round 5 of chemo.
"I love you," she said into a KFNS microphone, held by KFNS General Manger, Dave Greene, who was so touched by 'Team Roxie' he organized the fundraiser, featuring a live auction of Rams, Cardinals, and Blues ticket packages, with sweet 'extras' for fans wanting to join Team Roxie.
"Two children, a baby boy who had heart surgery and 3 year old girl who has cancer, they found out both of those things the same day," Slaten reminded the audience.
Donors kept calling in; customers kept rolling into 5 Guys, which posted a monster day of sales, in the worst weather of the season. 10% of the sales went to Team Roxie. All proceeds from KFNS went to the cause.
"Every time someone is affected or inspired by her, you know that they care. That really means a lot to us, because we really love her and we just want her to get better too, so it`s good to have that support," Holly Schopp said, crying again, moved by the onslaught of customers at the restaurant. They were lined up outside the door at lunch time.
"You go girl, you're strong and we all know you're going to get through it," family friend and Team Roxie member, Allison Stoehner said; a message for Roxie.
"Keep strong, keep fighting. She's got so much love and support, she'll make it through. Team Roxie, absolutely," said Allison's mother, Diana Stoehner.
"Kicking cancer isn't easy, especially for a 3 year old. But cancer hasn't met Roxie," said Roxies mother, reading a caption from a Team Roxie flier.
As she mother put it, Walker was "fixed". Doctors will monitor his condition for the rest of his life; but he may never need another surgery.
Roxie is doing well right, now; two more rounds of chemo; then, a surgery to hopefully remove all of her cancer.
Go Team Roxie!
Bid! Bid! TODAY!
Unbelievable Dave Greene! Speechless... Anyone can bid, from anywhere. Here are the items Grand Slam Sports is auctioning off today to benefit Team Roxie. Call 314-969-0590 to bid:
Blues Package
4 Tickets in the alumni suite for the Blues vs Anaheim Ducks on Thur March 8th
Open Bar and great stories from Blues alumni
Can attend the pre-game skate with Andy Strickland
Keith Tkachuk autographed stick
Golf Package
4 314golf.com Memberships
Round of Golf for 3 with Keith Tkachuk at Old Warson Country Club (on a mutually agreeable date)
Cardinals Package
4 lower level tickets to a Cardinals game in 2012
Watch batting practice from the field Spend an inning in the Fox Sports Midwest broadcast booth
Rams Package
4 terrace level tickets for the Rams 2012 regular season home opener
4 pre-game field passes
Autographed Sam Bradford football
KFNS Package
Your Very Own 2-Hour Radio Show Hour long studio sit-in with Frank Cusumano and Martin Kilcoyne on The Press Box
Winner and up to 2 friends will be able to do their own sports talk show
The time will be a mutually agreeable time on a Sunday
Blues Package
4 Tickets in the alumni suite for the Blues vs Anaheim Ducks on Thur March 8th
Open Bar and great stories from Blues alumni
Can attend the pre-game skate with Andy Strickland
Keith Tkachuk autographed stick
Golf Package
4 314golf.com Memberships
Round of Golf for 3 with Keith Tkachuk at Old Warson Country Club (on a mutually agreeable date)
Cardinals Package
4 lower level tickets to a Cardinals game in 2012
Watch batting practice from the field Spend an inning in the Fox Sports Midwest broadcast booth
Rams Package
4 terrace level tickets for the Rams 2012 regular season home opener
4 pre-game field passes
Autographed Sam Bradford football
KFNS Package
Your Very Own 2-Hour Radio Show Hour long studio sit-in with Frank Cusumano and Martin Kilcoyne on The Press Box
Winner and up to 2 friends will be able to do their own sports talk show
The time will be a mutually agreeable time on a Sunday
Grand Slam Sports + Five Guys + Team Roxie
Grand Slam Sports & Five Guys Burgers and Fries Day for Team Roxie!
Monday February 13th 10a-8p
Five Guys Burgers & Fries
790 North New Ballas Rd. St. Louis MO. 63141
Live broadcast: 10am-1pm with The Press Box
Live broadcast: 3pm-6pm with The King's Court The Schopp Family Story:
One week after welcoming their fourth child, Walker, into their family, Nick & Holly found themselves on Children's Hospital's oncology floor with their 3 year old daughter, Roxie. While waiting for a biopsy on Roxie's tumor, Walker stopped breathing and had to undergo emergency open heart surgery at 2 weeks old. With Walker recovering in the NICU, Nick & Holly were hit with Roxie's diagnosis, Stage 4 High Risk Neuroblastoma with MYCN amplification, a very rare form of cancer that occurs in approximately 1 in 100,000 children. (note: her case may be more rare than that number b/c of the genetic component)
A three-bedroom ranch home is already a bit crammed with 2 adults and 4 children, even more so with the addition of friends and family staying over to help care for this wonderful family. Fixing up their basement into additional living space, including a bedroom for guests, will make a huge difference as they navigate Roxie's road to recovery.
How you can help:
Monday February 13th 10a-8p
Five Guys Burgers & Fries
790 North New Ballas Rd. St. Louis MO. 63141
Live broadcast: 10am-1pm with The Press Box
Live broadcast: 3pm-6pm with The King's Court The Schopp Family Story:
One week after welcoming their fourth child, Walker, into their family, Nick & Holly found themselves on Children's Hospital's oncology floor with their 3 year old daughter, Roxie. While waiting for a biopsy on Roxie's tumor, Walker stopped breathing and had to undergo emergency open heart surgery at 2 weeks old. With Walker recovering in the NICU, Nick & Holly were hit with Roxie's diagnosis, Stage 4 High Risk Neuroblastoma with MYCN amplification, a very rare form of cancer that occurs in approximately 1 in 100,000 children. (note: her case may be more rare than that number b/c of the genetic component)
A three-bedroom ranch home is already a bit crammed with 2 adults and 4 children, even more so with the addition of friends and family staying over to help care for this wonderful family. Fixing up their basement into additional living space, including a bedroom for guests, will make a huge difference as they navigate Roxie's road to recovery.
How you can help:
- Come out to Five Guys Burgers and Fries Monday February 13th between 10am and 8pm and eat! 10% of the total sales will be donated to Team Roxie and Grand Slam Sports will be auctioning off unique sports experiences, tickets, memorabilia and more.
2/7/12
Round 4 went by so fast I barely had time to blink, mostly because I was trying to keep up with Roxie. At this point she has become accustomed to her longer stays and has very little anxiety about any of it. Her biggest gripe at this point is being connected to the pole. Her medicine is administered through her broviac and the bags hang from a large heavy medical pole on wheels. She has to lug the thing with her where ever she goes. I remember having one when I was delivering my babies and having a hard time navigating the walk from the bed to the bathroom. Roxie has become so adept at maneuvering it, it's almost like a dance partner. At the end of treatment when the nurse came to unhook her (the motions are the same as the dozens of other medicines they connect and disconnect during treatment) Roxie didn't even realize she was unhooked until the nurse told her so. When Roxie said, "You mean I'm free?!?!?!", the nurse didn't even have time to say yes before Roxie was running down the oncolgy floor giggling hysterically. She was running so fast and so happy the only thing that slowed her up was her pants falling down to the floor, which cracked us all up - especially Roxie. For the next 30min as we were packing up our things to head home all I could hear was the laughter of all three of my girls bouncing off the halls of floor 9. I love being there mom!
When we came home Roxie had a few days of feeling crummy but never threw up and surprisingly never got mouth sores (this paticular cocktail of chemo has the side effect of terrible, painful mouth sores). Her counts fell, which is expected, but this time her ANC was 60 and for us that was a new low. ANC is a formula created from the totals of her blood counts that indicate just how weak her immune system is. Anything under 500 is terrifying for a parent. It's referred to as neutropenia or being neutropenic and the visual I have associated that with is her health as an oil tanker where someone has taken a gallon of gasoline and created a trail for the wrong germ to come along at any minute and act as a match, causing an explosion. There are children who are life flighted to the hospital (even locally) to treat infection when they're neutropenic because sickness/infection can come on so fast and furious when their counts are that low. No pressure, right?
But in true Roxie fashion she recovered quickly from low counts and yet again avoided an intermediate trip to the hospital for infection. So far she has made it through treatment with very little collateral damage. We're so grateful that in between Rounds we haven't been plagued with additional admissions to the hospital. This allows us to maximize our time together as a family, reduces stress for us all and helps build our strength back in preparation to fight the next round. I think Team Roxie has a lot to do with that! There isn't a day that goes by that we aren't made aware of the prayers, positive thoughts and well wishes that are being sent Roxie's way. Because of this I think it's important for you all to know exactly what we're fighting for. Neuroblastoma is a sneaky disease. The prognosis for High Risk Neuroblastoma doesn't come from whether the removal of the tumor is a success but its reluctance to be put into remission. We know that the disease should respond to treatment. What we don't know is if it will stay away. We need Roxie to get through this roller coaster and come out the other side with NED (no evidence of disease) and stay that way with at least 2 years of EFS (event free survival) and 5 years ideally before we'll know she's been cured. The purpose of what she's going through isn't just to get rid of the disease as it exists now but to teach her body how to keep it away for good.
While we were in for Round 4 we had help (thanks Aunt Wendy), visitors, and volunteers that filled the time for Roxie with fun. Nick and I also celebrated our anniversary and were even able to sneak away for dinner (thanks Ryan and Aunt Lauren). We had an amazing meal at a very nice restaurant in a neighborhood a few blocks away from the hospital. I am so thankful that because of the support from friends and family Nick and I are able to take time for ourselves every now and then. Just think about the last time you were really, really tired. I'm guessing the conversations you were having with your spouse weren't that kind or deep. Nick and I are both stretched pretty thin right now but we knew from the beginning of all of this mess that we weren't going to be able to get through it without each other. We are checked in to caring for our family and we know that means taking time to foster this marriage.
Speaking of marriage, Nick's brother's wedding was this weekend. Alvin and Ari finally got hitched, tied the knot, took the plunge...etc. In a gesture that was nothing short of selfless and full of love they changed their original plans of a June wedding in Rhode Island to a February wedding in St. Louis. This was so our family, specifically Nick, could be a part of the event. It was a gorgeous (almost as gorgeous as the bride herself) day, ceremony and reception. I love Ari and I am thrilled she is a girl I get to now call sister! As I sat and listened to the exchanging of vows (good times and bad, sickness and health) I thought of our wedding and how Nick and I are living those promises right now. Roxie's counts were to low for her to attend the festivities so she stayed back with Greta and Jen, but we loved spending the day with Sawyer and had the best time. Some of you are just getting to learn about our family because of all of this and one thing you should know about us S girls is that we LOVE to dance. Sawyer and I danced the night away. Alvin and Ari are a very special couple to us and we are glad we had the chance to celebrate with them on their very special day!
We have been fortunate enough in the recent weeks to have people reach out to us to inquire about how they can support us or our cause. We are nothing short of humbled by all of the creative ways we are being shown love by the actions taking place in the community on our behalf. There are two, big, fun events right around the corner. Sawyer's school has organized a blood drive in support of Team Roxie this Thursday and a fund raiser hosted by Grand Slam Sports and Five Guys Burger and Fries is scheduled for Monday, February 13. When it comes to fund raising, in addition to Team Roxie we are obviously supportive of non profits dedicated to pediatric cancer research. St. Baldrick's as well as Alex's Lemonade Stand are both organizations we would endorse. Even though they focus on raising funds for pediatric cancer research only a percentage is dedicated to Neuroblastoma specifically. One I feel partial to is Children's Neuroblastoma Cancer Foundation where 100% of the funds go to Neuroblastoma research and supporting Neuroblastoma families. Too many stories of children with Neuroblastoma are told in the past tense. The only way to change this is to continue to provide funding for research to find a cure.
We're scheduled to be back in the hospital on February 14 for round 5. Between round 5 until round 6 we will be very busy. Roxie will need to have updated scans, a clinic visit, a hearing assessment, have surgery and recover from it all before March 6 to stay on schedule. I'll do my best to get shorter, more frequent updates during this time.
Often after I put up a post on the Team Roxie site parents will share how blessed they are to have healthy children. I want you all to know that I feel no less blessed to have an unhealthy one! Every day we have too many blessings to count and Roxie is definitely one of them. Also since our last post Greta had her first day of school and is loving every minute of it, Sawyer won a blue ribbon for her science project and Walker has moved into sleeping 6-8hrs a night, hallelujah!
(NOTE- I'm uploading from China, so if something is broken I will fix ASAP back in chicago... 愛與健康 julie)
Team Roxie Blood Drive @ Ross Elementary School
Sawyer's school is hosting a Blood Drive in support of Team Roxie. We're going to do our best to be there to say thank you in person to those who attend. We're very thankful for their support of Sawyer and our family during this time.
Ready, Steady, Go!
Hello Team Roxie!
Last post was from the hospital during Round 3. Since then we've been home and busy as usual. Round 3 eventually caught up to Roxie and easily wins for the pukIest round yet. Yesterday was actually the first day since the hospital that Roxie didn't get sick. Even through all of the nausea Roxie still Is In great spirits. She laughs alot, gives hugs and kisses alot, dances alot, pretends alot, works on crafts alot and smiles more than you and I combined Don't get me wrong, there are still plenty of times where she feels like garbage and Is taking It out on one of us by either whining terribly, crying uncontrollably about something entirely insignificant or unloading on one of her sisters. We've been learning to differentiate between regular 3 yr old moments that just require discipline vs. the cancer patient moments that need patience and meds. It's not always easy to know which Is which but I have to say, I think we're fast learners. Nick and I both agree that since our goal Is to help support Roxie through treatment on her way to recovery the best possible thing we can do for her as parents Is to lovingly raise and discipline her as we were before. A real tragedy would be to get through the next couple of years and have a healthy, cancer free child who Is a spoiled brat. It may sound a little harsh but It apparently happens. Kids are so smart and Intuitive that If you aren't on your game as a parent they are quick to take advantage of the situation. We LOVE Roxie so much and can't Imagine how difficult some of this must be for her so we know that allowances for her discomfort (mental and physical) need to be made In healthy doses right now but because we LOVE Roxie so much, we also want her to be the kind, happy, generous, Independent, beautiful child we know when treatment Is completed. Additionally, It would be a true disservice as parents to the other children we are raising and LOVE SO MUCH during all of this to do It any differently.
During this off time from the hospital we also took a road trip to Chicago. Dr. Susan Cohn Is a leading authority on neuroblastoma and practices out of University of Chicago's Comers Children's Hospital. Her offices called us on 1/11 and were able to fIt us In for an appt on 1/16. So we made a quick call to Julie Jawor (unofficial VP of the Team Roxie fan club) and she and Eric agreed to watch Sawyer and Greta In Chicago so Nick and I could attend the appt and bring the whole family on the trip. Nick and I are confident In the choices we've made In choosing treatment (the study Roxie Is on was actually developed by Dr. Cohn and other rock stars In the neuroblastoma space) we just wanted to have an educated conversation about the disease and discuss what her opinions were on certain stages of treatment-ex: radiation therapy, surgery, antibody. Less than a second opinion (as someone helped me identify) our reasons for going was for her EXPERT opinion. The meeting was IncredIbly InsIghtful and provIded me wIth a ton of clarIty on the InformatIon about Roxie's disease that I have consumed but had yet to organIze. I am so thankful we made time to see her and I am so thankful that she was as knowledgeable on neuroblastoma and open to sharIng that knowledge wIth us. She spent well over two hours talkIng wIth us and was warm, carIng and concerned for our family. As we were wrappIng up, knowIng that there was no need for transfer of care at this time (meanIng no need to move treatment to Chicago and therefore become Dr. Cohn's patient) she still handed us each a busIness card that Included her phone number wIth extensIon and emaIl address tellIng us, "Call or wrIte wIth any questIons." I was floored.
One pIece of Info we got was worth the trip for Nick alone. We asked Dr. Cohn at what poInt, If any, dId she change the admInIsterIng of neupogen from InjectIon to IV (through the brovIac lIne). Neupogen Is a drug that helps to maIntaIn Roxie's whIte blood cell counts after chemo that we, let me rephrase that-Nick has to Inject Into Roxie's legs everyday. It's horrIble and I am not strong enough to do It. Nick hates doIng It and Is only able to because he gives hImself a mental pep talk Internally tellIng hImself, "It's for her own good." We pretend that It's not a bIg deal and move swIftly through the process of me holdIng her down, whIle Nick pInches her leg and gives her the shot all the whIle Roxie Is screamIng. She's mad at both of us(mostly Nick) when It's over and spends a consIderable amount of time explaInIng to us that It really does hurt. The paIn has little to do wIth the needle but the burnIng of the medIcIne at the InjectIon sIte. It has probably been, for Roxie, the most anxIety causIng process of her treatment. Well, for that reason-as you can Imagine It's a common reactIon for most young patients- Dr. Cohn doesn't ever use neupogen any other way than through the brovIac on her patients. The Image I have In my head of when I looked over at Nick after she saId that was of hIm as a cartoon character wIth hIs bottom jaw lIterally on the floor. So needless to say we made a call to our Dr and have a home health care nurse comIng out today to show us how to admInIster the drug through her lIne, paInlessly. The downsIde of gIvIng the med through her lIne Is that It Is less effectIve than the InjectIon and can mean a day or two extra of beIng neutropenIc (at rIsk of InfectIon) but Dr. Cohn doesn't feel that's a sIgnIfIcant enough reason to make these kIds mIserable or cause shot phobIas. Bottom lIne was, If Dr. Cohn Is doIng It this way for her neuroblastoma patients than It's fIne for us to do It this way wIth Roxie. I'm tellIng you, Roxie Isn't the only one relIeved.
Another very cool part of our Chicago trip was where we got to stay. It all started the mornIng of our trip when Nick grabbed the IPad and pulled up on the map the hotel optIons avaIlable for hIm to book usIng hIs travel poInts. He was torn between Homewood SuItes and Hampton Inn and called me over to look at them on the map. One of the pIns marked was for The Drake. I was surprIsed and asked hIm If The Drake was part of the HIlton family. When he saId yes, I saId let's stay there. He wasn't famIlIar wIth The Drake but once I told hIm It was a Chicago treasure he thought for sure It would use up ALL of hIs poInts to book the room, WRONG. SurprIsIngly, It was nearly the exact same as the other hotels. When we arrIved Sawyer was In awe. Greta was walkIng around the lobby sayIng hello to everybody and loudly commentIng, "Oh, this Is soooooo beeee uuuuuuu tIIIIIIIIII ful". Some of the elevators had couches and Roxie was adamant we rIde In one. We let three others go by before we found one that satIsfIed her. AND upon checkIng In, Nick's travel status allows for free upgrades when avaIlable so we were gIven The Senator's SuIte! The room was easily larger than our home, had a doorbell and a perfect vIew off the North sIde of our room of MIchIgan Ave and the East sIde of the Lake. All of us gIrls ImmedIately squealed wIth delIght and began runnIng around like crazIes. We were gIgglIng whIle testIng out the bouncabIlIty of the bed and playIng hIde & seek. Nick fInally corralled me and the kIds to head down to the bar and grIll for dInner. The last time I had been In that bar was several years ago as a sIngle gal, drInkIng a martInI "ExecutIve" style, a Drake sIgnature. I promIse you as fun as that nIght was back then, this one couldn't be topped. During my entIre second and thIrd trImester pregnant wIth Walker, workIng full time and runnIng around wIth the three gIrls- Nick was home a combined total of 18 days. The travel was Intense. It was tough, but that nIght at The Drake - that memory wIth my whole family was worth every sIngle mInute. We earned It, lIterally!
After dInner, It was really late - Roxie was tIred and ready to head back up to the room. You know how people wIll refer to kIds wIth cancer as heroes! Fighters or InspIrIng? Of course they're "heroes" or "fIghters" for what they have to endure and some how still manage to put a smIle on theIr face but I have become InspIred by Roxie's wIll. Her strength. Her determInatIon. We got back to our room and after puttIng jammIes on all of the kIds I found Roxie In the large open lIvIng area, by herself, her little body crouched down, softly sayIng, "Ready, Steady, Go" . At which poInt she would slowly stand up, run the length of the room as fast as she could just to crouch down agaIn, say, "Ready, Steady, Go" and repeat the run back. She dId this at least a dozen times. When I asked her what she was doIng, she told me, "GettIng my muscles stronger agaIn." She wasn't doIng It because someone told her to, she wasn't doIng It because It's part of some physical therapy treatment, she wasn't doIng It for me, her dad or the doctors. She was doIng It for herself. Even though she was beat from the day and the drIlls she'd Invented we're difficult on her body - she was/Is determIned, to get stronger. She has the wIll, to get better. There are moments In every day that Roxie shows us her Inner desIre to get healthy. I thank God for those moments because they make all we're puttIng her through a little easIer on me. Since this Is her fIght, as long as we see that resolve - we're going to fIght too, right besIde her. All the whIle beIng InspIred.
We're back in the hospital next week for Round 4, unti then...
Last post was from the hospital during Round 3. Since then we've been home and busy as usual. Round 3 eventually caught up to Roxie and easily wins for the pukIest round yet. Yesterday was actually the first day since the hospital that Roxie didn't get sick. Even through all of the nausea Roxie still Is In great spirits. She laughs alot, gives hugs and kisses alot, dances alot, pretends alot, works on crafts alot and smiles more than you and I combined Don't get me wrong, there are still plenty of times where she feels like garbage and Is taking It out on one of us by either whining terribly, crying uncontrollably about something entirely insignificant or unloading on one of her sisters. We've been learning to differentiate between regular 3 yr old moments that just require discipline vs. the cancer patient moments that need patience and meds. It's not always easy to know which Is which but I have to say, I think we're fast learners. Nick and I both agree that since our goal Is to help support Roxie through treatment on her way to recovery the best possible thing we can do for her as parents Is to lovingly raise and discipline her as we were before. A real tragedy would be to get through the next couple of years and have a healthy, cancer free child who Is a spoiled brat. It may sound a little harsh but It apparently happens. Kids are so smart and Intuitive that If you aren't on your game as a parent they are quick to take advantage of the situation. We LOVE Roxie so much and can't Imagine how difficult some of this must be for her so we know that allowances for her discomfort (mental and physical) need to be made In healthy doses right now but because we LOVE Roxie so much, we also want her to be the kind, happy, generous, Independent, beautiful child we know when treatment Is completed. Additionally, It would be a true disservice as parents to the other children we are raising and LOVE SO MUCH during all of this to do It any differently.
During this off time from the hospital we also took a road trip to Chicago. Dr. Susan Cohn Is a leading authority on neuroblastoma and practices out of University of Chicago's Comers Children's Hospital. Her offices called us on 1/11 and were able to fIt us In for an appt on 1/16. So we made a quick call to Julie Jawor (unofficial VP of the Team Roxie fan club) and she and Eric agreed to watch Sawyer and Greta In Chicago so Nick and I could attend the appt and bring the whole family on the trip. Nick and I are confident In the choices we've made In choosing treatment (the study Roxie Is on was actually developed by Dr. Cohn and other rock stars In the neuroblastoma space) we just wanted to have an educated conversation about the disease and discuss what her opinions were on certain stages of treatment-ex: radiation therapy, surgery, antibody. Less than a second opinion (as someone helped me identify) our reasons for going was for her EXPERT opinion. The meeting was IncredIbly InsIghtful and provIded me wIth a ton of clarIty on the InformatIon about Roxie's disease that I have consumed but had yet to organIze. I am so thankful we made time to see her and I am so thankful that she was as knowledgeable on neuroblastoma and open to sharIng that knowledge wIth us. She spent well over two hours talkIng wIth us and was warm, carIng and concerned for our family. As we were wrappIng up, knowIng that there was no need for transfer of care at this time (meanIng no need to move treatment to Chicago and therefore become Dr. Cohn's patient) she still handed us each a busIness card that Included her phone number wIth extensIon and emaIl address tellIng us, "Call or wrIte wIth any questIons." I was floored.
One pIece of Info we got was worth the trip for Nick alone. We asked Dr. Cohn at what poInt, If any, dId she change the admInIsterIng of neupogen from InjectIon to IV (through the brovIac lIne). Neupogen Is a drug that helps to maIntaIn Roxie's whIte blood cell counts after chemo that we, let me rephrase that-Nick has to Inject Into Roxie's legs everyday. It's horrIble and I am not strong enough to do It. Nick hates doIng It and Is only able to because he gives hImself a mental pep talk Internally tellIng hImself, "It's for her own good." We pretend that It's not a bIg deal and move swIftly through the process of me holdIng her down, whIle Nick pInches her leg and gives her the shot all the whIle Roxie Is screamIng. She's mad at both of us(mostly Nick) when It's over and spends a consIderable amount of time explaInIng to us that It really does hurt. The paIn has little to do wIth the needle but the burnIng of the medIcIne at the InjectIon sIte. It has probably been, for Roxie, the most anxIety causIng process of her treatment. Well, for that reason-as you can Imagine It's a common reactIon for most young patients- Dr. Cohn doesn't ever use neupogen any other way than through the brovIac on her patients. The Image I have In my head of when I looked over at Nick after she saId that was of hIm as a cartoon character wIth hIs bottom jaw lIterally on the floor. So needless to say we made a call to our Dr and have a home health care nurse comIng out today to show us how to admInIster the drug through her lIne, paInlessly. The downsIde of gIvIng the med through her lIne Is that It Is less effectIve than the InjectIon and can mean a day or two extra of beIng neutropenIc (at rIsk of InfectIon) but Dr. Cohn doesn't feel that's a sIgnIfIcant enough reason to make these kIds mIserable or cause shot phobIas. Bottom lIne was, If Dr. Cohn Is doIng It this way for her neuroblastoma patients than It's fIne for us to do It this way wIth Roxie. I'm tellIng you, Roxie Isn't the only one relIeved.
Another very cool part of our Chicago trip was where we got to stay. It all started the mornIng of our trip when Nick grabbed the IPad and pulled up on the map the hotel optIons avaIlable for hIm to book usIng hIs travel poInts. He was torn between Homewood SuItes and Hampton Inn and called me over to look at them on the map. One of the pIns marked was for The Drake. I was surprIsed and asked hIm If The Drake was part of the HIlton family. When he saId yes, I saId let's stay there. He wasn't famIlIar wIth The Drake but once I told hIm It was a Chicago treasure he thought for sure It would use up ALL of hIs poInts to book the room, WRONG. SurprIsIngly, It was nearly the exact same as the other hotels. When we arrIved Sawyer was In awe. Greta was walkIng around the lobby sayIng hello to everybody and loudly commentIng, "Oh, this Is soooooo beeee uuuuuuu tIIIIIIIIII ful". Some of the elevators had couches and Roxie was adamant we rIde In one. We let three others go by before we found one that satIsfIed her. AND upon checkIng In, Nick's travel status allows for free upgrades when avaIlable so we were gIven The Senator's SuIte! The room was easily larger than our home, had a doorbell and a perfect vIew off the North sIde of our room of MIchIgan Ave and the East sIde of the Lake. All of us gIrls ImmedIately squealed wIth delIght and began runnIng around like crazIes. We were gIgglIng whIle testIng out the bouncabIlIty of the bed and playIng hIde & seek. Nick fInally corralled me and the kIds to head down to the bar and grIll for dInner. The last time I had been In that bar was several years ago as a sIngle gal, drInkIng a martInI "ExecutIve" style, a Drake sIgnature. I promIse you as fun as that nIght was back then, this one couldn't be topped. During my entIre second and thIrd trImester pregnant wIth Walker, workIng full time and runnIng around wIth the three gIrls- Nick was home a combined total of 18 days. The travel was Intense. It was tough, but that nIght at The Drake - that memory wIth my whole family was worth every sIngle mInute. We earned It, lIterally!
After dInner, It was really late - Roxie was tIred and ready to head back up to the room. You know how people wIll refer to kIds wIth cancer as heroes! Fighters or InspIrIng? Of course they're "heroes" or "fIghters" for what they have to endure and some how still manage to put a smIle on theIr face but I have become InspIred by Roxie's wIll. Her strength. Her determInatIon. We got back to our room and after puttIng jammIes on all of the kIds I found Roxie In the large open lIvIng area, by herself, her little body crouched down, softly sayIng, "Ready, Steady, Go" . At which poInt she would slowly stand up, run the length of the room as fast as she could just to crouch down agaIn, say, "Ready, Steady, Go" and repeat the run back. She dId this at least a dozen times. When I asked her what she was doIng, she told me, "GettIng my muscles stronger agaIn." She wasn't doIng It because someone told her to, she wasn't doIng It because It's part of some physical therapy treatment, she wasn't doIng It for me, her dad or the doctors. She was doIng It for herself. Even though she was beat from the day and the drIlls she'd Invented we're difficult on her body - she was/Is determIned, to get stronger. She has the wIll, to get better. There are moments In every day that Roxie shows us her Inner desIre to get healthy. I thank God for those moments because they make all we're puttIng her through a little easIer on me. Since this Is her fIght, as long as we see that resolve - we're going to fIght too, right besIde her. All the whIle beIng InspIred.
We're back in the hospital next week for Round 4, unti then...
"ask her how she's doing too"
Round 3
First let me start with a big HAPPY NEW YEAR! Our New Year's Eve as a family was one of the best I can remember. We made a last minute decision to throw the girls in their PJ's and make a mad dash to try and catch the 6pm fireworks at Westport. The fireworks were already going off by the time we were loading them up in the car so we drove to the top of a hill at the back of our subdivision and watched the show from there. Afterwords, with Roxie's counts very high into the safe zone, we decided to hit Sho Guns for dinner. The kids are always hysterical to watch there but for some reason that night they were extra funny. At one point during dinner, between the ohhhs and ahhhhs of flames and flying broccoli, Roxie started calling me Big Momma. At first I quietly told her to quit calling me that because everyone was looking our way but there was no stopping her. It rolled right off of her tongue so naturally as if she's been calling me that forever. "Oh look Big Momma he made a volcano out of onions." "My chicken is very good, how is yours Big Momma?' "Big Momma, Big Momma my chopsticks fell on the floor." She had us all cracking up, especially Sawyer - which of course only made us all laugh harder. We ended our fantastic evening there and headed home to play tag, eat ice cream and ring in the New Year. To some it's still debatable (Sawyer and Nick) but I know for a fact that I was the ONLY one who was still up at Midnight. It was a great way to start 2012.
We are currently admitted to Children's, undergoing Round 3 of Chemo. Part of receiving chemo is also receiving tons of fluids to help the medicine move through her system so her organs don't take a huge hit. They pump her so full of fluids until she's what is considered positive, meaning she has more in her system than she needs which in turn means she's peeing constantly. Because of this Roxie has been UN potty trained and is in pull ups. The medicine they are giving to my 26lb little girl is so potent that they make me change her pull ups with gloves on so that I don't get any of the leftovers on my hands, that might be absorbed by my body and processed into my breast milk because even those trace amounts would be harmful to my 11lb baby. We're only talking about a 15lb swing here. It made Nick and I both a little anxious about what was to come. Round 3 and 5 of Roxie's treatment are the most intense. BUT, somebody forgot to tell Roxie that. She's happy, playful and busy. I do expect her to have some crummy days over the next two weeks but right now she's doing really, really well. She's performing magic tricks, recital performances and musical numbers with the nurses and doctors. I figure I've got the rest of the year to perfect the act before I start booking venues and take her on the road!
Roxie is also gaining some ownership of her care. For instance when the nurses are done in the room they'll typically ask the parents, "Is there anything else I can do or get for you?" and now Roxie will chime in, " No thank you, I think we're good." before we can even answer. And the other day the doctor and I were having a conversation when a nurses voice came over the monitor, " Can I help you? " startling both the doctor and myself and then Roxie says, "Yes please, my machines are beeping." The doctor and I looked at each other and realized we'd been oblivious to the noise and that Roxie had pushed the nurses button and called them herself. Too funny. I think this is so important for Roxie's confidence. I'm sure there's a lot of talk and people around Roxie that she just doesn't understand how to process, heck - I feel that way most of the time. She is the patient though and I'm glad she's learning how to take charge of the things she can. In fact with every treatment of chemo as they're hooking up the syringe, I remind her that she's in charge of that medicine and needs to tell it exactly where it needs to go. She always points to the same spot in her lower left belly and says, "Get here medicine, make my belly feel better."
Lastly, off topic, I wanted to take time to point out that being a sibling to a child with cancer is very difficult. Walker is with us when we are admitted and Greta (at two) is almost the perfect age to be dealing with all of this. Sawyer, on the other hand, is old enough to understand what's going on and because of her age, a lot more patience for the changes in our life is expected of her. She knows this isn't temporary and that her life is going to be majorly affected by it all too. It's hard for her to see Roxie's appearance change and her hooked up to machines. She loves Roxie and wants her to be cared for but Sawyer also loves to be tucked in and loved on by her parents. She has a lot of her own emotions concerning the situation however most people who care for Sawyer and our family will see Sawyer and their first question is, "How is Roxie doing?" She explained to me the other day that it made her feel invisible sometimes. These feelings are commonly shared by siblings of a sick child. After we talked we decided that she and I were going to work extra hard to look after each other, making it a point to ask one another, "How are you doing?" If you are out and about and run into Sawyer (or any super sibling of a sick child), do me a favor and ask her how she's doing too. It would mean a lot to her...and me. Thanks so much!
First let me start with a big HAPPY NEW YEAR! Our New Year's Eve as a family was one of the best I can remember. We made a last minute decision to throw the girls in their PJ's and make a mad dash to try and catch the 6pm fireworks at Westport. The fireworks were already going off by the time we were loading them up in the car so we drove to the top of a hill at the back of our subdivision and watched the show from there. Afterwords, with Roxie's counts very high into the safe zone, we decided to hit Sho Guns for dinner. The kids are always hysterical to watch there but for some reason that night they were extra funny. At one point during dinner, between the ohhhs and ahhhhs of flames and flying broccoli, Roxie started calling me Big Momma. At first I quietly told her to quit calling me that because everyone was looking our way but there was no stopping her. It rolled right off of her tongue so naturally as if she's been calling me that forever. "Oh look Big Momma he made a volcano out of onions." "My chicken is very good, how is yours Big Momma?' "Big Momma, Big Momma my chopsticks fell on the floor." She had us all cracking up, especially Sawyer - which of course only made us all laugh harder. We ended our fantastic evening there and headed home to play tag, eat ice cream and ring in the New Year. To some it's still debatable (Sawyer and Nick) but I know for a fact that I was the ONLY one who was still up at Midnight. It was a great way to start 2012.
We are currently admitted to Children's, undergoing Round 3 of Chemo. Part of receiving chemo is also receiving tons of fluids to help the medicine move through her system so her organs don't take a huge hit. They pump her so full of fluids until she's what is considered positive, meaning she has more in her system than she needs which in turn means she's peeing constantly. Because of this Roxie has been UN potty trained and is in pull ups. The medicine they are giving to my 26lb little girl is so potent that they make me change her pull ups with gloves on so that I don't get any of the leftovers on my hands, that might be absorbed by my body and processed into my breast milk because even those trace amounts would be harmful to my 11lb baby. We're only talking about a 15lb swing here. It made Nick and I both a little anxious about what was to come. Round 3 and 5 of Roxie's treatment are the most intense. BUT, somebody forgot to tell Roxie that. She's happy, playful and busy. I do expect her to have some crummy days over the next two weeks but right now she's doing really, really well. She's performing magic tricks, recital performances and musical numbers with the nurses and doctors. I figure I've got the rest of the year to perfect the act before I start booking venues and take her on the road!
Roxie is also gaining some ownership of her care. For instance when the nurses are done in the room they'll typically ask the parents, "Is there anything else I can do or get for you?" and now Roxie will chime in, " No thank you, I think we're good." before we can even answer. And the other day the doctor and I were having a conversation when a nurses voice came over the monitor, " Can I help you? " startling both the doctor and myself and then Roxie says, "Yes please, my machines are beeping." The doctor and I looked at each other and realized we'd been oblivious to the noise and that Roxie had pushed the nurses button and called them herself. Too funny. I think this is so important for Roxie's confidence. I'm sure there's a lot of talk and people around Roxie that she just doesn't understand how to process, heck - I feel that way most of the time. She is the patient though and I'm glad she's learning how to take charge of the things she can. In fact with every treatment of chemo as they're hooking up the syringe, I remind her that she's in charge of that medicine and needs to tell it exactly where it needs to go. She always points to the same spot in her lower left belly and says, "Get here medicine, make my belly feel better."
Lastly, off topic, I wanted to take time to point out that being a sibling to a child with cancer is very difficult. Walker is with us when we are admitted and Greta (at two) is almost the perfect age to be dealing with all of this. Sawyer, on the other hand, is old enough to understand what's going on and because of her age, a lot more patience for the changes in our life is expected of her. She knows this isn't temporary and that her life is going to be majorly affected by it all too. It's hard for her to see Roxie's appearance change and her hooked up to machines. She loves Roxie and wants her to be cared for but Sawyer also loves to be tucked in and loved on by her parents. She has a lot of her own emotions concerning the situation however most people who care for Sawyer and our family will see Sawyer and their first question is, "How is Roxie doing?" She explained to me the other day that it made her feel invisible sometimes. These feelings are commonly shared by siblings of a sick child. After we talked we decided that she and I were going to work extra hard to look after each other, making it a point to ask one another, "How are you doing?" If you are out and about and run into Sawyer (or any super sibling of a sick child), do me a favor and ask her how she's doing too. It would mean a lot to her...and me. Thanks so much!
Team Roxie & Grandma Connie
Teachers with Grandma Connie at Switzerland Point Middle School! :-)
10x
12/28/2011
Roxie's procedure went extremely well yesterday. We checked in on Monday, had dinner with the family and settled in for the night. Roxie didn't hardly sleep, waking up almost every hour on the hour begging to go home. With some help from medication she finally found a deep sleep around 5am. That actually worked to our advantage because surgery was scheduled for 7:30am and she was too sleepy to really care about all of the fuss.
After surgery she was fighting mad about the brace they'd put on her leg. The Apheresis process required her to keep her leg straight while they collected stem cells from the line that had been placed in her groin. She wasn't sidelined by the brace and continued to scream, yell and claw at the brace until we realized she needed some more medicine for anxiety. They delivered the first dose and she was still ANGRY, dose 2 did the trick. She laid still for the next two hours connected to what is essentially a dialysis machine. The procedure can take up to four hours and can also require several collections over the course of days. This is what we were prepared for. Roxie not only completed the process in those two hours but they collected more then 10x the amount of stem cells they needed in the first shot.
We still had time in the day for the surgey team to remove her line and we were on our way home by 7pm. It was a very, very nice surprise. We'll be checking back in for Round 3 of Chemo next Tuesday. Until then we're back home together, just how we like it!
Roxie's procedure went extremely well yesterday. We checked in on Monday, had dinner with the family and settled in for the night. Roxie didn't hardly sleep, waking up almost every hour on the hour begging to go home. With some help from medication she finally found a deep sleep around 5am. That actually worked to our advantage because surgery was scheduled for 7:30am and she was too sleepy to really care about all of the fuss.
After surgery she was fighting mad about the brace they'd put on her leg. The Apheresis process required her to keep her leg straight while they collected stem cells from the line that had been placed in her groin. She wasn't sidelined by the brace and continued to scream, yell and claw at the brace until we realized she needed some more medicine for anxiety. They delivered the first dose and she was still ANGRY, dose 2 did the trick. She laid still for the next two hours connected to what is essentially a dialysis machine. The procedure can take up to four hours and can also require several collections over the course of days. This is what we were prepared for. Roxie not only completed the process in those two hours but they collected more then 10x the amount of stem cells they needed in the first shot.
We still had time in the day for the surgey team to remove her line and we were on our way home by 7pm. It was a very, very nice surprise. We'll be checking back in for Round 3 of Chemo next Tuesday. Until then we're back home together, just how we like it!
If you don't have anything nice to say..
12/26/2011
Been absent from blogging this last week because Christmas was coming and we were receiving loving support from Team Roxie and all I was feeling was sour. I've been experiencing emotions that are difficult to explain. Most aren't good, in fact they're pretty bad - actually nasty. I hadn't written mostly because I think of the blog as being dedicated to updates on Roxie and all in all, this past week Roxie's been great. There's nothing eventful to post about her condition. We'll leave the house today around 4pm to check back in for the next several days-week. The procedure getting ready to take place won't be fun or easy and while she's in surgery getting a new line placed they'll perform another bi lateral bone marrow biopsy. The last time she had this done Roxie was terribly uncomfortable for a long time. I'm dreading this visit because Roxie IS doing so well. There's really no words that can explain how it feels as a parent, protector, to voluntarily subject your child to what boils down to torture. I know I need to be focusing on the big picture, but in Roxie's case - the reality is there are no guarantees. This is what I'm struggling with internally. I don't mean to complain and I'll try to keep it to a minimum in the future. I'm hoping that getting this off my chest will help me reset and move on.
I should preface this next part with the standard (the thoughts and opinions expressed are my own) disclaimer because thankfully Nick has a much better grip right now than I do. I know there will be a time where we trade places in this respect and I'll be able to return the favor. During the last 10 days I've been reading and learning as much as I can about Roxies' disease. I didn't have time during our initial stay because of Walker's experience and the time I had to dedicate to both kiddos needs. I'm trying to educate myself as much as possible on what we're dealing with so I can ask questions and understand the responses. I remember being in Cancun for my senior class trip and feeling so proud of myself because I was able to walk up to a worker at a restaurant and in perfect Spanish ask him, "Where is the bathroom?" The problem was when he answered me, I couldn't keep up. I had no idea where he'd told me to go. Asking the right questions are an important part of communicating with the Doctors but it's only helpful if I'm able to digest their explanations. And I have a lot of questions. High Risk Neuroblastoma is gross. It doesn't like to go away. Because it's such an aggressive form of cancer the treatment is equally aggressive. Translation - treatment is painful and ugly and comes with side effects (lots of them) and does not promise a cure.
After some self analysis, dangerous I know, I'm pretty sure that this is what I'm processing emotionally. I am still very optimistic that Roxie has a good shot at being a survivor, I'm just no longer naive about what she'll have to sacrifice along the way. I'm also grieving the loss of Roxie's promise before diagnosis. During our last round of Chemo at the hospital Roxie had a neuropsych test administered to get a better understanding of her development. The Dr.s were amazed, not only did Roxie complete the entire unit but in their words, "finished in record time." A moment to feel proud in most cases but not with the understanding that the testing is to acquire a base line to measure the expected developmental delays that will come from treatment. Roxie is expected to lose her hearing. I'm grieving the loss of her toddler appearance. For most moms, 4 is about the age you really start to see your child lose all of their remaining "baby". The weight loss from treatment has aged Roxie and I know by the time we're done with treatment and her physical appearance rebounds, we'll have missed that whole phase. Roxie is expected to struggle with infertility. The list goes on, every one isn't worth mentioning and every now and then I can't ignore the fact that they make me sad.
I don't like that the next year or more will be unpleasant for Roxie. I don't like trying to walk the tight rope of keeping our family dynamic normal while dealing with the chance that we might lose her. Roxie's diagnosis tore me up. Since then this balancing act has been harder than I thought. It's like if you've been in a car accident how you expect to get hit again the first couple of times you're back on the road. I'm always anticipating the next bit of really bad news. There are physical effects to these emotions that are entirely new to me too. Have you ever been on the Tower of Terror at Disney's Hollywood Studios? Unexpectedly, out of nowhere, my stomach will drop. I feel like I might get sick. Nick says it sounds like anxiety.
For every yucky part of this, the positive side is that Roxie is here with us right now of course. Each minute is one for which we're grateful. As a family, we had a wonderful Christmas. All of the "Team Roxie" love helped me to continue to find that silver lining. The girls loved spending time with each other and our extended family. They all spent this morning hanging out together in Sawyer's room listening, singing and dancing to their vacation bible school cd. I guess we're doing something right because they are all pretty happy. I'm going to get through this too, with a smile on my face. Writing this did help. Thanks for understanding that as together as we're trying to stay, sometimes we fall apart. And thanks for caring about updates on us all.
roxie mooooooooooooooommmmmmmmmmmmmmmmmmmmmmmmmmmmm
The above was written by Roxie. She's all about letters and spelling family member's names these days. I have no doubt she'd be blogging herself if she could.
Been absent from blogging this last week because Christmas was coming and we were receiving loving support from Team Roxie and all I was feeling was sour. I've been experiencing emotions that are difficult to explain. Most aren't good, in fact they're pretty bad - actually nasty. I hadn't written mostly because I think of the blog as being dedicated to updates on Roxie and all in all, this past week Roxie's been great. There's nothing eventful to post about her condition. We'll leave the house today around 4pm to check back in for the next several days-week. The procedure getting ready to take place won't be fun or easy and while she's in surgery getting a new line placed they'll perform another bi lateral bone marrow biopsy. The last time she had this done Roxie was terribly uncomfortable for a long time. I'm dreading this visit because Roxie IS doing so well. There's really no words that can explain how it feels as a parent, protector, to voluntarily subject your child to what boils down to torture. I know I need to be focusing on the big picture, but in Roxie's case - the reality is there are no guarantees. This is what I'm struggling with internally. I don't mean to complain and I'll try to keep it to a minimum in the future. I'm hoping that getting this off my chest will help me reset and move on.
I should preface this next part with the standard (the thoughts and opinions expressed are my own) disclaimer because thankfully Nick has a much better grip right now than I do. I know there will be a time where we trade places in this respect and I'll be able to return the favor. During the last 10 days I've been reading and learning as much as I can about Roxies' disease. I didn't have time during our initial stay because of Walker's experience and the time I had to dedicate to both kiddos needs. I'm trying to educate myself as much as possible on what we're dealing with so I can ask questions and understand the responses. I remember being in Cancun for my senior class trip and feeling so proud of myself because I was able to walk up to a worker at a restaurant and in perfect Spanish ask him, "Where is the bathroom?" The problem was when he answered me, I couldn't keep up. I had no idea where he'd told me to go. Asking the right questions are an important part of communicating with the Doctors but it's only helpful if I'm able to digest their explanations. And I have a lot of questions. High Risk Neuroblastoma is gross. It doesn't like to go away. Because it's such an aggressive form of cancer the treatment is equally aggressive. Translation - treatment is painful and ugly and comes with side effects (lots of them) and does not promise a cure.
After some self analysis, dangerous I know, I'm pretty sure that this is what I'm processing emotionally. I am still very optimistic that Roxie has a good shot at being a survivor, I'm just no longer naive about what she'll have to sacrifice along the way. I'm also grieving the loss of Roxie's promise before diagnosis. During our last round of Chemo at the hospital Roxie had a neuropsych test administered to get a better understanding of her development. The Dr.s were amazed, not only did Roxie complete the entire unit but in their words, "finished in record time." A moment to feel proud in most cases but not with the understanding that the testing is to acquire a base line to measure the expected developmental delays that will come from treatment. Roxie is expected to lose her hearing. I'm grieving the loss of her toddler appearance. For most moms, 4 is about the age you really start to see your child lose all of their remaining "baby". The weight loss from treatment has aged Roxie and I know by the time we're done with treatment and her physical appearance rebounds, we'll have missed that whole phase. Roxie is expected to struggle with infertility. The list goes on, every one isn't worth mentioning and every now and then I can't ignore the fact that they make me sad.
I don't like that the next year or more will be unpleasant for Roxie. I don't like trying to walk the tight rope of keeping our family dynamic normal while dealing with the chance that we might lose her. Roxie's diagnosis tore me up. Since then this balancing act has been harder than I thought. It's like if you've been in a car accident how you expect to get hit again the first couple of times you're back on the road. I'm always anticipating the next bit of really bad news. There are physical effects to these emotions that are entirely new to me too. Have you ever been on the Tower of Terror at Disney's Hollywood Studios? Unexpectedly, out of nowhere, my stomach will drop. I feel like I might get sick. Nick says it sounds like anxiety.
For every yucky part of this, the positive side is that Roxie is here with us right now of course. Each minute is one for which we're grateful. As a family, we had a wonderful Christmas. All of the "Team Roxie" love helped me to continue to find that silver lining. The girls loved spending time with each other and our extended family. They all spent this morning hanging out together in Sawyer's room listening, singing and dancing to their vacation bible school cd. I guess we're doing something right because they are all pretty happy. I'm going to get through this too, with a smile on my face. Writing this did help. Thanks for understanding that as together as we're trying to stay, sometimes we fall apart. And thanks for caring about updates on us all.
roxie mooooooooooooooommmmmmmmmmmmmmmmmmmmmmmmmmmmm
The above was written by Roxie. She's all about letters and spelling family member's names these days. I have no doubt she'd be blogging herself if she could.
Support
When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. ~Author Unknown
12/19/2011
We've been home for 48hours and the house is filled with the regular delights of childhood madness. Walker is as demanding as any young man the age of 6weeks. Sawyer is in the thick of preparation, call times and performances. Roxie is learning to balance her health issues with the regularities of home life and is mostly just ready for Christmas. And our Greta Goo is into everything! If it's closed, she opens it. If it's folded, she unfolds it. If it's contained, she dumps it. But we love it all. This is the crazy we signed up for.
Cancer, we did not. We didn't see it coming and apparently there is nothing we could have done to stop it. Roxie's little body was made this way, and there is no concrete explanation as to why. We haven't spoken much about Roxie's specific diagnosis and what it means. She has high risk neuroblastoma with MYCN amplification. You can do your own Google searches to get more information on what we're up against. Childhood cancer is rarer than one might think and when you drill down into the specifics of Roxie's diagnosis you quickly begin to understand the unique rarity of hers. It's unexplainable. That's why your support through all of this is so valuable to our family.
Today was a big day for Team Roxie. Lots of our Team Roxie family received their tshirts and reached out to us to let us know. It's heart warming. It's encouraging. The overwhelming support we've received is honestly, miraculous and I felt compelled to share some of the other amazing ways Roxie and our family have been lifted up through this process.
Cards and email messages! Roxie loves receiving cards and words of encouragement - so do we. It is such a nice, thoughtful gesture. We love reading that you're thinking of us or sharing how much you care for our daughter. We think she's pretty great too. Roxie especially loves the messages that come from other children. I'm not sure if it's the colors or drawings that typically are included from a get well card from another child but they make her so happy.
Prayers! As her mom, I love hearing about the thoughts and prayers that are being said on our daughters behalf. Shortly after diagnosis I can confirm that prayers for Roxie had gone international. The ripple effect has been unreal. It's my prayer, that your prayers will continue because we are at the very beginning of a serious ( several years) uphill battle.
Gifts! The balloons and gifts that were sent Roxie's way when she was diagnosed absolutely gave her something to look forward to. We started tying all of the balloons onto her bed as they'd arrive. The result was a big balloon bouquet that we still have floating around in the girls room. Every gift that has been sent is obviously chosen with serious consideration for a 3 year old, who's not feeling well with lots of time on her hands. Roxie has been pleasantly distracted by the fun many times when the no fun conversations are being had with Dr.s. This last round up at the hospital we took some Christmas gifts that had been sent to us from my Aunt Peggy and Uncle Mel and family friends, the Manternachs, to put under our little tree. Roxie's sisters came up to visit two nights in a row and each night the kids got to open a gift. It helped to fill us all with Christmas spirit. Roxie has loved all of her "special surprises".
Donations! Honestly, Nick and I were uncomfortable when we saw that a page on Roxie's website was dedicated to making donations to our family. We were completely naive to the type of incidental expenses (health and otherwise) that we'll be managing for years to come. We've also come to the conclusion that we'll need in house help over the next year or more and finishing our basement has become a priority. As of right now, Sawyer has her own room ( the smallest of 3), Roxie and Greta share a room and the baby crib is in the room with us. We're already on top of each other in this 1400 sq ft space, helpers have no space to comfortably stay. Completing an additional living area in our basement will solve this problem and lift a huge, stressful burden off of us. A portion of the donations made will be used on this project. I am so thankful to solve the issue of space for guests/help. We couldn't do this without your generosity.
Meals! I never knew how crazy cool it would be to have meals prepared for our family. Besides being delicious and nutritious - the mental process of making dinner taken off my "to do" list four nights a week has been life changing. It is probably the most unexpected, valuable form of help we've received. A friend of mine began a care calendar for us using www.carecalendar.org . We still have people reaching out to us offering to help with meals. If you're interested in learning more about signing up on our care calendar - email teamroxieschopp@gmail.com for details.
Friends and Family! Everything form networking to find valuable medical contacts to helping with laundry has allowed us to sustain. Moral support has also been crucial for our sanity. Life doesn't stop and things in life worth celebrating shouldn't either. A month ago I was making BIG plans for Nick's 30th birthday (this Wednesday). All of those plans fell to the wayside once we were dealing with this new diagnosis. Well, last week after a manageable round two of chemo I was able to pull off a surprise get together in 24hrs for Nick at a bar within walking distance from the hospital. His best friend, Tom, was my partner in crime. Nick's mom, Janet, came down and stayed with Roxie for a couple of hours that afternoon so I could run to the store to grab supplies, balloons and a cake. Later that evening after Roxie had gone to bed, Tom convinced Nick to go grab a drink. The crew was already there waiting for him. Nick's parents then headed back to the hospital so that I could join the party. We were able to celebrate for a little over an hour. It was a great time. I was happy that Nick's big day didn't completely fly under the radar. Nick was genuinely touched that friends and family had come out to wish him well. Their presence in our life has always been important and now we need them more than ever.
Jen Schenkelberg! Jen started working with our family, taking care of our girls as a nanny in May. There is no way any of us could have known how majorly different the job description would be 6mos later. Jen has not missed a beat. She's ridiculously helpful around the house, loves our kids and has a heart made of gold. Her presence has helped to keep normalcy for Greta and Sawyer on the days we're in the hospital with Roxie. She is already wise to what we like to get at the grocery store, the location of the common errands we run and the girls schedules so she's also been helpful at helping the new helpers find the best ways to help us. :) We love you Jen!
I also want to mention the Akin's. The Akin's have nearly set the standard for parents on how to maneuver through a child's health crisis with grace, dignity and respect. Justin Akin was one of the first people I reached out to the night we were admitted to Children's Hospital. I sent him a quick text to tell him how grateful I was for his and his wife's work to get people to join the bone marrow donation registry knowing that Roxie may be a recipient. Kristin and Justin have since been true allies, providing advice, knowledge and a shoulder. While at Children's, Kristin made a trip up to visit our family armed with the arsenal necessary to survive life admitted to the hospital. I was in love the second she pointed out that in one of the packages was an adorable carrying case to keep in your diaper bag or purse filled with everything you need to keep a broviac line clean (including incidentals like vitamin C chews, pain reliever and a starbuck's gift card all for mom). They are the only couple on the planet I know that understands how difficult this part is and I am so thankful to have their experience to draw from at this time. To learn more about their story and how they're positively changing the world, visit www.matthewandandrew.org .
I've said it before but I will mention it again, your care and concern for our sweet little Roxie and the rest of our family is palpable. We feel it every day, it keeps us moving forward. I will never be able to communicate what a difference it has made in dealing with the issues at hand. We are so grateful for Team Roxie!
12/19/2011
We've been home for 48hours and the house is filled with the regular delights of childhood madness. Walker is as demanding as any young man the age of 6weeks. Sawyer is in the thick of preparation, call times and performances. Roxie is learning to balance her health issues with the regularities of home life and is mostly just ready for Christmas. And our Greta Goo is into everything! If it's closed, she opens it. If it's folded, she unfolds it. If it's contained, she dumps it. But we love it all. This is the crazy we signed up for.
Cancer, we did not. We didn't see it coming and apparently there is nothing we could have done to stop it. Roxie's little body was made this way, and there is no concrete explanation as to why. We haven't spoken much about Roxie's specific diagnosis and what it means. She has high risk neuroblastoma with MYCN amplification. You can do your own Google searches to get more information on what we're up against. Childhood cancer is rarer than one might think and when you drill down into the specifics of Roxie's diagnosis you quickly begin to understand the unique rarity of hers. It's unexplainable. That's why your support through all of this is so valuable to our family.
Today was a big day for Team Roxie. Lots of our Team Roxie family received their tshirts and reached out to us to let us know. It's heart warming. It's encouraging. The overwhelming support we've received is honestly, miraculous and I felt compelled to share some of the other amazing ways Roxie and our family have been lifted up through this process.
Cards and email messages! Roxie loves receiving cards and words of encouragement - so do we. It is such a nice, thoughtful gesture. We love reading that you're thinking of us or sharing how much you care for our daughter. We think she's pretty great too. Roxie especially loves the messages that come from other children. I'm not sure if it's the colors or drawings that typically are included from a get well card from another child but they make her so happy.
Prayers! As her mom, I love hearing about the thoughts and prayers that are being said on our daughters behalf. Shortly after diagnosis I can confirm that prayers for Roxie had gone international. The ripple effect has been unreal. It's my prayer, that your prayers will continue because we are at the very beginning of a serious ( several years) uphill battle.
Gifts! The balloons and gifts that were sent Roxie's way when she was diagnosed absolutely gave her something to look forward to. We started tying all of the balloons onto her bed as they'd arrive. The result was a big balloon bouquet that we still have floating around in the girls room. Every gift that has been sent is obviously chosen with serious consideration for a 3 year old, who's not feeling well with lots of time on her hands. Roxie has been pleasantly distracted by the fun many times when the no fun conversations are being had with Dr.s. This last round up at the hospital we took some Christmas gifts that had been sent to us from my Aunt Peggy and Uncle Mel and family friends, the Manternachs, to put under our little tree. Roxie's sisters came up to visit two nights in a row and each night the kids got to open a gift. It helped to fill us all with Christmas spirit. Roxie has loved all of her "special surprises".
Donations! Honestly, Nick and I were uncomfortable when we saw that a page on Roxie's website was dedicated to making donations to our family. We were completely naive to the type of incidental expenses (health and otherwise) that we'll be managing for years to come. We've also come to the conclusion that we'll need in house help over the next year or more and finishing our basement has become a priority. As of right now, Sawyer has her own room ( the smallest of 3), Roxie and Greta share a room and the baby crib is in the room with us. We're already on top of each other in this 1400 sq ft space, helpers have no space to comfortably stay. Completing an additional living area in our basement will solve this problem and lift a huge, stressful burden off of us. A portion of the donations made will be used on this project. I am so thankful to solve the issue of space for guests/help. We couldn't do this without your generosity.
Meals! I never knew how crazy cool it would be to have meals prepared for our family. Besides being delicious and nutritious - the mental process of making dinner taken off my "to do" list four nights a week has been life changing. It is probably the most unexpected, valuable form of help we've received. A friend of mine began a care calendar for us using www.carecalendar.org . We still have people reaching out to us offering to help with meals. If you're interested in learning more about signing up on our care calendar - email teamroxieschopp@gmail.com for details.
Friends and Family! Everything form networking to find valuable medical contacts to helping with laundry has allowed us to sustain. Moral support has also been crucial for our sanity. Life doesn't stop and things in life worth celebrating shouldn't either. A month ago I was making BIG plans for Nick's 30th birthday (this Wednesday). All of those plans fell to the wayside once we were dealing with this new diagnosis. Well, last week after a manageable round two of chemo I was able to pull off a surprise get together in 24hrs for Nick at a bar within walking distance from the hospital. His best friend, Tom, was my partner in crime. Nick's mom, Janet, came down and stayed with Roxie for a couple of hours that afternoon so I could run to the store to grab supplies, balloons and a cake. Later that evening after Roxie had gone to bed, Tom convinced Nick to go grab a drink. The crew was already there waiting for him. Nick's parents then headed back to the hospital so that I could join the party. We were able to celebrate for a little over an hour. It was a great time. I was happy that Nick's big day didn't completely fly under the radar. Nick was genuinely touched that friends and family had come out to wish him well. Their presence in our life has always been important and now we need them more than ever.
Jen Schenkelberg! Jen started working with our family, taking care of our girls as a nanny in May. There is no way any of us could have known how majorly different the job description would be 6mos later. Jen has not missed a beat. She's ridiculously helpful around the house, loves our kids and has a heart made of gold. Her presence has helped to keep normalcy for Greta and Sawyer on the days we're in the hospital with Roxie. She is already wise to what we like to get at the grocery store, the location of the common errands we run and the girls schedules so she's also been helpful at helping the new helpers find the best ways to help us. :) We love you Jen!
I also want to mention the Akin's. The Akin's have nearly set the standard for parents on how to maneuver through a child's health crisis with grace, dignity and respect. Justin Akin was one of the first people I reached out to the night we were admitted to Children's Hospital. I sent him a quick text to tell him how grateful I was for his and his wife's work to get people to join the bone marrow donation registry knowing that Roxie may be a recipient. Kristin and Justin have since been true allies, providing advice, knowledge and a shoulder. While at Children's, Kristin made a trip up to visit our family armed with the arsenal necessary to survive life admitted to the hospital. I was in love the second she pointed out that in one of the packages was an adorable carrying case to keep in your diaper bag or purse filled with everything you need to keep a broviac line clean (including incidentals like vitamin C chews, pain reliever and a starbuck's gift card all for mom). They are the only couple on the planet I know that understands how difficult this part is and I am so thankful to have their experience to draw from at this time. To learn more about their story and how they're positively changing the world, visit www.matthewandandrew.org .
I've said it before but I will mention it again, your care and concern for our sweet little Roxie and the rest of our family is palpable. We feel it every day, it keeps us moving forward. I will never be able to communicate what a difference it has made in dealing with the issues at hand. We are so grateful for Team Roxie!
12/15/2011
We've been tackling Round 2 since Tuesday and Roxie is doing great! She feels better, she wants to get up and move around, she's eating (huge relief), she's talking and smiling - a lot. I see some of the sparkle back in her eyes that we've missed for awhile now.
This trip to the hospital has been extremely anti climatic compared to the trip we made one month ago today. There's no testing, no surgeries, no endless stream of doctors through the door, no confusion, no crying parents, no other unexpected emergencies, no unknown. We're here for chemo and that's it. The oncology floor is packed and when we asked the nurses why, they told us there were several patients scheduled for chemo but that there were also several unexpected admittals. That made both Nick and I cringe. As long as I live I don't ever want to be the newly admitted on the oncology floor of a children's hospital again. It's heart breaking to know that right here on the floor, during our stay other young parents are receiving the worst news imaginable. Their reality is being slapped in the face hard by a cancer diagnosis. It turns my stomach.
The biggest issue we've had since arriving has been Roxie's home sickness. The first night we were her she must have said, "I want to go home." through tears a million times. She would just repeat it, endlessly, even when she changed position in her sleep. It reminded me of Dorothy in the Wizard of Oz, as if repeating it non stop might transport her right out of the hospital and home to her bed. As the days have gone by she still says it, not as often but has resigned herself to the fact that we're not going home anytime soon. I'm going to have to research and find ways to manage this better as we move forward. Over the next year and a half we'll be spending a lot of time admitted to the hospital. In fact I just learned that Roxie's bone marrow transplant (she may have 2) will have us admitted to the hospital for 6-8 weeks. We do well finding ways to stay preoccupied during the day but as evening approaches the "I want to go home"s find a way of sneaking back in.
Sawyer and Greta were up last night and this evening to visit. Last night we all made a trip down to the cafeteria for ice cream. We were all laughing and being silly. It was nice. On the way down Nick started jumping so the elevator would shake, instantly Sawyer and Greta joined in. Roxie was holding my hand and channeled her maternal instincts scolding Nick that the elevator is not for jumping. Later on the way back up Roxie got on the elevator, looked up at me sideways, smiled and then led the group in jumping (she's still pretty wobbly). That's just one example of why dads, and I'm obviously a little partial - Nick is so great to have around. It's a little thing, but Roxie attempting to jump with her sisters is worth celebrating.
In early November I had the bottom half of lingual (on the inside of your teeth) braces put on to correct a bite issue. I was scheduled this Wednesday to have the top half put on. I knew I would be on maternity leave and thought it would give me the time I needed to adapt to speaking clearly with a new appliance in my mouth before returning to work. I decided to keep that appointment because it's not like there's going to be a "better time" to do it anytime soon. So yesterday not only did they rewire my bottom teeth they installed the top braces. The last 48 hours I have had to speak with the medical professionals around here all the while sounding like Sylvester the Cat, "Sufferin'succotash!". Just "desthpicable".
Earlier today while walking the halls of the 9th floor with Walker, I spotted one of the ER Dr.s who was instrumental in saving Walker's life. Walker only spent an hour and a half in the care of the ER docs and we never saw them again during our stay. I was so excited to see him but asked one of the nurses if she would please tell him how thankful we are for his help so I wouldn't interrupt him. She was adamant that he would welcome the interruption. I watched her go tell him that we were on the floor and he came out of his meeting room with the biggest, warm smile to say hello. I learned his name for the first time, Dr. McKee. He got the chance to see how wonderful Walker is doing and I had the chance to lisp my way through my sincerest thanks. I don't think I've written about the events of that night in detail, mostly because I don't ever care to relive it, but the ER staff was unbelievably focused. There were over a dozen people involved and they worked together like a well oiled machine. That focus and teamwork, without question saved my son's life.
We have less than two days before our scheduled release. Roxie hasn't experienced any high temperatures yet so we're anticipating staying on schedule. It would be practically perfect if we could get through the first days home (when her counts are down) without her getting sick so that she can get her counts to climb back up to an acceptable level to spend some of Christmas with the extended family. Roxie LOVES spending time with so many of our relatives that live nearby. If she's feeling well, there's no where she'd rather spend some of the holiday than in their company. No matter what happens I know we'll make the most of the holiday. There's a reason for the season ya know. :) We have so many blessings for which we're thankful. Your thoughts and prayers for our family are at the top of that list.
This trip to the hospital has been extremely anti climatic compared to the trip we made one month ago today. There's no testing, no surgeries, no endless stream of doctors through the door, no confusion, no crying parents, no other unexpected emergencies, no unknown. We're here for chemo and that's it. The oncology floor is packed and when we asked the nurses why, they told us there were several patients scheduled for chemo but that there were also several unexpected admittals. That made both Nick and I cringe. As long as I live I don't ever want to be the newly admitted on the oncology floor of a children's hospital again. It's heart breaking to know that right here on the floor, during our stay other young parents are receiving the worst news imaginable. Their reality is being slapped in the face hard by a cancer diagnosis. It turns my stomach.
The biggest issue we've had since arriving has been Roxie's home sickness. The first night we were her she must have said, "I want to go home." through tears a million times. She would just repeat it, endlessly, even when she changed position in her sleep. It reminded me of Dorothy in the Wizard of Oz, as if repeating it non stop might transport her right out of the hospital and home to her bed. As the days have gone by she still says it, not as often but has resigned herself to the fact that we're not going home anytime soon. I'm going to have to research and find ways to manage this better as we move forward. Over the next year and a half we'll be spending a lot of time admitted to the hospital. In fact I just learned that Roxie's bone marrow transplant (she may have 2) will have us admitted to the hospital for 6-8 weeks. We do well finding ways to stay preoccupied during the day but as evening approaches the "I want to go home"s find a way of sneaking back in.
Sawyer and Greta were up last night and this evening to visit. Last night we all made a trip down to the cafeteria for ice cream. We were all laughing and being silly. It was nice. On the way down Nick started jumping so the elevator would shake, instantly Sawyer and Greta joined in. Roxie was holding my hand and channeled her maternal instincts scolding Nick that the elevator is not for jumping. Later on the way back up Roxie got on the elevator, looked up at me sideways, smiled and then led the group in jumping (she's still pretty wobbly). That's just one example of why dads, and I'm obviously a little partial - Nick is so great to have around. It's a little thing, but Roxie attempting to jump with her sisters is worth celebrating.
In early November I had the bottom half of lingual (on the inside of your teeth) braces put on to correct a bite issue. I was scheduled this Wednesday to have the top half put on. I knew I would be on maternity leave and thought it would give me the time I needed to adapt to speaking clearly with a new appliance in my mouth before returning to work. I decided to keep that appointment because it's not like there's going to be a "better time" to do it anytime soon. So yesterday not only did they rewire my bottom teeth they installed the top braces. The last 48 hours I have had to speak with the medical professionals around here all the while sounding like Sylvester the Cat, "Sufferin'succotash!". Just "desthpicable".
Earlier today while walking the halls of the 9th floor with Walker, I spotted one of the ER Dr.s who was instrumental in saving Walker's life. Walker only spent an hour and a half in the care of the ER docs and we never saw them again during our stay. I was so excited to see him but asked one of the nurses if she would please tell him how thankful we are for his help so I wouldn't interrupt him. She was adamant that he would welcome the interruption. I watched her go tell him that we were on the floor and he came out of his meeting room with the biggest, warm smile to say hello. I learned his name for the first time, Dr. McKee. He got the chance to see how wonderful Walker is doing and I had the chance to lisp my way through my sincerest thanks. I don't think I've written about the events of that night in detail, mostly because I don't ever care to relive it, but the ER staff was unbelievably focused. There were over a dozen people involved and they worked together like a well oiled machine. That focus and teamwork, without question saved my son's life.
We have less than two days before our scheduled release. Roxie hasn't experienced any high temperatures yet so we're anticipating staying on schedule. It would be practically perfect if we could get through the first days home (when her counts are down) without her getting sick so that she can get her counts to climb back up to an acceptable level to spend some of Christmas with the extended family. Roxie LOVES spending time with so many of our relatives that live nearby. If she's feeling well, there's no where she'd rather spend some of the holiday than in their company. No matter what happens I know we'll make the most of the holiday. There's a reason for the season ya know. :) We have so many blessings for which we're thankful. Your thoughts and prayers for our family are at the top of that list.
Coming soon... your Team Roxie Tshirt :)
I just showed this pic to Roxie and she looked back up at me and said, "those are all Team Roxie tshirts?" And when I told her yes she said, "That's Crazy!" with a big giggle.
Wear It Out Loud (Katrin) is a busy little Team Roxie elf tonight! Thank you for putting in your time, heart and love!
Wear It Out Loud (Katrin) is a busy little Team Roxie elf tonight! Thank you for putting in your time, heart and love!
Ding Ding Ding!!!
Team Roxie is ready for Round 2
Team Schopp, Team S Family, Team Roxie!
12/10/11
There have been so many times over the past five days that I've wanted to share with you all, but as you can imagine the only thing that finds it way into my lap when I have a minute isn't the computer but a nursing baby. Walker, by the way, is doing great. His home health nurse came for her visit this Wednesday and started off the checkup by discussing the fact that nursing is more difficult than bottle feeding and that during times of stress mother's milk can be weakened. Newborns after surgery (even if they're eating) can struggle with packing on the lbs. While she was obviously a huge advocate for breast feeding, her main concern was Walker's weight gain. After she checked his vitals, she pulled out her scale and actually giggled with excitement when she saw he'd gained close to 9oz in five days. She left confident that Walker was doing beautifully and gave me the biggest nurse to mother approval on her way out the door telling me, "Mom - you just keep doing what you're doing."
Roxie had a great week from a health stand point, but still feels lousy and is starting to lose patience with the whole process. We keep telling her that she's going through all of this to make her tummy feel better. The thing is, right now it doesn't. The whole reason we ended up in the ER in the first place was because of unexplained abdominal pain. Now we know that it was a tumor causing her discomfort. Chemo's purpose is to shrink it down to an operable size or disintegrate it completely. The doctors tell us that Round 2 of chemo (which starts next Tuesday) should be the round that actually makes a dent in the size of the mass. Until then, all that she's going through and recovering from hasn't solved her problem - the tumor is still pushing on organs, weighing her down and at this point (excuse the language) pissing her off. Her moodiness takes a 180 when pain meds kick in.
Roxie's hair fell out this week. As a mom even though they tell you it's going to come out, there's nothing that can prepare you for the clumps of hair that come out with every stroke of the same hair brush you've used everyday for years on piggies and ponytails. I also was not prepared for how quickly it was all going to come out. One day she had all her hair and within 24hrs 95% of it was gone. The last pieces that remain look so pitiful. Roxie hasn't seen herself yet and I'm not sure how she'd react. Yesterday at clinic I asked the Drs how other families handle the remaining pieces of hair. They told me every family is different. Some shave it, some wait the last few pieces out but they did say some of the strands can hang on for surprisingly long. Right now I think shaving her head would be pretty traumatic because even though there's hardly any hair there, she still thinks she has some. I'll keep you posted on how that all pans out for us down the road. It's amazing how quickly you get used to seeing her with her "new do" but when Nick returned from work last night I immediately saw his face and the feelings I knew he was experiencing for the first time and was taken right back to that same moment for me. It stinks and it's sad but then five minutes later we're working on crafts thinking nothing of it. In fact when I hold her now, I rather like the smell of her hot head and I kiss it all of the time. It reminds me of her sweet baby head.
On Thursday Roxie's home health care nurse came to take labs. Children's hospital called a couple of hours later with her blood count results which were great (still very low for normal people but great for a kid with cancer). They assured me this was the time to get out and do something cautiously normal with her. The whole crew decided a trip to the theater to see a matinee of The Muppets was a GO. We had the theater to ourselves and wiped down all of the chairs/armrests before we took our seats. Everyone got what they wanted from the snack bar. We were ready and excited for the movie to begin. It was fantastic. We were there 20 minutes when Roxie was ready to go home. Instead of going home she found her way into my lap and we made it through the whole show. I had Roxie on one side and Walker nursing on the other. By the time the movie was over both my arms and legs were asleep but I felt like a Rock Star for staying the course. After all, Sawyer and Greta were thrilled to be there and I would have done whatever it took to not interrupt their fun.
The rest of December is going to be extremely busy for us, forget about the fact that there is a major holiday that just like most of your homes - is a pretty big deal to the little people in this house too. In fact, the Christmas tree is being decorated today and lists for Santa are being written. Sawyer and Roxie spent the morning making the annual construction paper chain. It's beginning to look a lot like Christmas and I love it! But treatment starts up again next Tuesday. We'll be admitted through Saturday or longer. Then there will be a series of tests the following week leading up to her stem cell extraction scheduled for the 26th which we will be readmitted for potentially through the new year. This is apparently a no fun process that involves another surgery to place a catheter/IV, a brace that prevents her leg from bending where the catheter has been placed and another bilateral bone marrow biopsy. There's also daily shots following Round 2 all the until we're readmitted for the extraction. Roxie already has major anxiety about going to the hospital. Yesterday on our way to clinic, all I had to do was get off of 40 at the Kingshighway exit for the hysterics to begin. That part is tough. Her doctors discussed medicating some of those fears and I am all in favor. These trips to the hospital are not going away and it will be awhile before each one doesn't involve a majorly uncomfortable procedure. I'm not quite sure how she's supposed to overcome those fears when so far for her, this has been pretty darn scary.
In other family news, Nick's first week back to work went as well as to be expected in this scenario. His company has been exceedingly respectful, appropriately concerned and understanding of our situation. Nick and I were thrilled when he was welcomed on board by JM&A in May and now, more than ever, it appears Nick is in the right place from both a professional and cultural standpoint. As most of you know Nick is a decent, respectful, understanding man. We're extremely grateful for their moral support. We both have felt they've been amazing even before life turned sideways for us. The Tuesday our world changed, a gorgeous congratulatory "Welcome Baby Walker" basket arrived. I came home from the hospital that Friday to collect some things and discovered it for the first time. It was such a genuine thoughtful gesture. It made me happy to know that they shared in our excitement of welcoming our newest family member. JM&A frequently discusses the importance of family life for their employees and it's obvious they mean it.
Sawyer is still a star student, supportive sister and star! Nutcracker rehearsals are nearing their end and her debut as "lead cannon mouse" (that still makes me smile) is just around the corner. She always has, and still even dealing with this, amazes me. I love her!
Greta is straight up 2. She's into everything, working on perfecting her new vocabulary which gets larger by the minute. She's now the same size as Roxie and has no problem giving her a run for her money. Their dynamic is in a constant state of change right now because while Roxie still thinks she dominates as the older sister, Greta can physically take Roxie out, no problem. Greta is also great at providing comic relief.
I love how normal the girls still interact with each other. They're aware of Roxie's health but it doesn't change anything about the way they laugh, talk, fight, play or tease one another. It's so healthy.
I love my family. We're a good team. Team Schopp, Team S Family, Team Roxie!
What a difference a day makes.
12/05/2011
Yesterday was a good day and today was even better. Roxie spent more time out of bed than in it for the first time in nearly a month. She spent most of the day watching movies and working on crafts. Within the craft bag was our window paint markers. We used them to draw on the front storm door. A huge victory for me, well more for Roxie, was watching her bend down to draw at the bottom of the door and then use her own strength to stand back up. Hopefully over the next couple of days we can get her up and moving more often. By middle to late next week (baring any fever that might sideline her schedule) we should be tackling round 2 of chemo and I'd like to see her continue to recuperate. Today definitely sowed us that Roxie is moving in the right direction.
One of the most difficult moments of the day came when the home health care nurse arrived and Roxie hid under her blanket. She was obviously dissapointed when she realized she could not magically disappear. So with her toddler rational and a very tiny, high 3yr old voice she said, "I'm feeling very tired, I'd like to go to sleep please. Please take me to bed for a nap right now mom. I'm very sleepy and I'd like to go to bed." It's so hard for me to watch her succumb to having zero control over uncomfortable processes that happen to her own body. Today's visit was primarily to change the dressing on her broviac (basically a permanent IV that's been installed into her chest). Because she was unsure what was happening and didn't know how far they were going to go with the process she was sobbing, begging them to PLEASE not take it out. She must have thought they were just going to pull the whole line from her chest. It made me realize how scary some of this stuff must seem to her. Regardless of how you try to communicate with her to prepare her for what's next, she's had so many-new to her- painful procedures over the last couple of weeks that she no longer knows what is going to be a big deal vs something truly simple. But, like they say kids will, she rebounded pretty quickly from the ordeal. I'm the one having bad dreams at night.
The nurses also pulled blood for labs today and we'll learn tomorrow morning what her counts her. I'm interested to see if there's been any improvement with her white blood cells.
Life, as it always does, is settling down and our new reality is becoming more and more manageable. Of course, a lot of that is a result of all of the help we're receiving. Now that I'm getting the hang of things, I'm working hard to catch up with some correspondences. I want you all to know that on a daily basis there are moments that I push through and find the strength to just keep moving because I know I'm not alone. Katrin Gorman caught me with 5 min to chat today and I was able to share that thought with her personally. I wish I had the time to express my gratitude to more of you personally, voice to voice. The support that's been extended to our family has been humbling, we are so thankful.
Yesterday was a good day and today was even better. Roxie spent more time out of bed than in it for the first time in nearly a month. She spent most of the day watching movies and working on crafts. Within the craft bag was our window paint markers. We used them to draw on the front storm door. A huge victory for me, well more for Roxie, was watching her bend down to draw at the bottom of the door and then use her own strength to stand back up. Hopefully over the next couple of days we can get her up and moving more often. By middle to late next week (baring any fever that might sideline her schedule) we should be tackling round 2 of chemo and I'd like to see her continue to recuperate. Today definitely sowed us that Roxie is moving in the right direction.
One of the most difficult moments of the day came when the home health care nurse arrived and Roxie hid under her blanket. She was obviously dissapointed when she realized she could not magically disappear. So with her toddler rational and a very tiny, high 3yr old voice she said, "I'm feeling very tired, I'd like to go to sleep please. Please take me to bed for a nap right now mom. I'm very sleepy and I'd like to go to bed." It's so hard for me to watch her succumb to having zero control over uncomfortable processes that happen to her own body. Today's visit was primarily to change the dressing on her broviac (basically a permanent IV that's been installed into her chest). Because she was unsure what was happening and didn't know how far they were going to go with the process she was sobbing, begging them to PLEASE not take it out. She must have thought they were just going to pull the whole line from her chest. It made me realize how scary some of this stuff must seem to her. Regardless of how you try to communicate with her to prepare her for what's next, she's had so many-new to her- painful procedures over the last couple of weeks that she no longer knows what is going to be a big deal vs something truly simple. But, like they say kids will, she rebounded pretty quickly from the ordeal. I'm the one having bad dreams at night.
The nurses also pulled blood for labs today and we'll learn tomorrow morning what her counts her. I'm interested to see if there's been any improvement with her white blood cells.
Life, as it always does, is settling down and our new reality is becoming more and more manageable. Of course, a lot of that is a result of all of the help we're receiving. Now that I'm getting the hang of things, I'm working hard to catch up with some correspondences. I want you all to know that on a daily basis there are moments that I push through and find the strength to just keep moving because I know I'm not alone. Katrin Gorman caught me with 5 min to chat today and I was able to share that thought with her personally. I wish I had the time to express my gratitude to more of you personally, voice to voice. The support that's been extended to our family has been humbling, we are so thankful.
12/3/2011
It's been a week since Round 1 of Chemo ended for Roxie. Our expectations for this time at home was that she would be more "like herself".
Sadly her spirit hasn't improved as much as we'd have liked. There are moments where it seems she's on the mends but they seem to be brief and inconsistent. Mostly she's sleepy, moody and reluctant to get up and get around. Every day she's slimming down right before our eyes and that's been a really tough part for me to watch as her mom. Her appearance at this point makes it obvious she's unwell.
When she is up Nick and I do our best to get her on her feet and moving. The furthest we've convinced her to go is from our bedroom to our living room couch. She's very unsteady on her feet, shuffles like a little old lady and requires hand holding.
I called to speak with the Doctors today to see if this is expected/normal. They recommended we bring her back in if we don't see any improvement over the next 24-48 hrs.
Sisters
How is it possible my 9 year old has gotten Roxie to do more in a half hour than all of us adults combined over the past two weeks?
Gotta love Sawyer!!!
p.s. thanks friends & family for the gifts :)
Gotta love Sawyer!!!
p.s. thanks friends & family for the gifts :)
Tough, but we're tougher...
11/30/2011
Turns out The Great Escape was just a grand illusion. We are all very thankful to be home. There are lots of creature comforts that have made the last 18 hours a refreshing break from the hospital. But the truth of the matter is Roxie still has cancer. Also, a lot more of the hospital followed us home than you might think. We made it home around 6pm and before we'd even finished dinner the Home Health Care courier was knocking on our door to drop off all of our medical supplies. When we were looking at all of the boxes on our kitchen table Nick jokingly said, "Can we just tell them no thank you?" We have a half a dozen medicines that all have different measures, times and dates for ingestion. The Home Health Care nurse came by today to help review all of the bandage covers, how to flush Roxie's broviach (daily) and how to administer a shot (daily) to Roxie. I had a hard time holding back the tears. At one point when she was talking I could barely hear the words coming out of her mouth because I was staring straight through her looking at all of the photos and artwork on our fridge. We're back home but there's nothing about this situation that feels normal. In fact you might even say being home amplifies how much is going to be different about our new normal.
I'm as overwhelmed as I've ever been. All of the professionals keep assuring us that this will all become easier. I believe them.
Roxie and Nick made a trip to the hospital today in preparation for an MIBG scan tomorrow. She did great. Nick said she was a little apprehensive about returning. The professionals keep assuring us that for Roxie this will get easier. I believe them.
This is tough, but we're tougher.
The Great Escape!
Homeward bound!
We'll be back tomorrow and Thursday and then readmitted for Round II of Chemo mid December, but tonight -
We're headed HOME!
11.29.2011
Roxie Jane Schopp
I thought every now and then I might share a little about Roxie that you may not know.
Roxie was named after my Great Grandma Driscoll. She was my mother's, mother's mother. I deeply admired my Grandma Driscoll because she was always full of happy. Whenever I would visit as a young kid, sometimes I wouldn't quite know what the adults were visiting about but there was never a topic of conversation that didn't make my Great Grandma laugh.
I was fortunate enough to be able to get to know her as I grew up. One time when I was visiting her as a young adult, Grandma Driscoll was telling me a story about being a little girl and how her sister Jo would just be so mortified by her when they went to church. She told me that Jo would always elbow her or nudge her and say, "Roxie! Quit singing so loud, you're embarrassing me." When she told me that story it was the first time I'd thought of my Great Grandma as a little girl named Roxie and made me also realize how spunky, friendly and rambunctious she'd always been.
I knew I'd love to have a daughter named after her. My Great Grandma lived to be 104. She passed away the same year Roxie was born. I was able to go and visit her that February (before I even knew if the baby I was carrying was a girl) and I asked her for permission to name my daughter Roxie. Grandma was just tickled and she immediately said, " You tell that precious Roxie every day that she is beautiful."
My Roxie is beautiful, most importantly where it counts - on the inside.
We chose Jane for her middle name to honor Nick's mom and dad. Nick's mom's name is Janet and she goes by Janet to everyone who knows her, everyone except Al. Al affectionately calls Janet, Jane. I thought it was sweet from the moment I heard it and when I asked Nick why his dad called her Jane, Nick said, "I don't know, but he always had - as long as I can remember." It was an easy middle name pick!
The Schopp part is obviously self explanatory. :)
Roxie was named after my Great Grandma Driscoll. She was my mother's, mother's mother. I deeply admired my Grandma Driscoll because she was always full of happy. Whenever I would visit as a young kid, sometimes I wouldn't quite know what the adults were visiting about but there was never a topic of conversation that didn't make my Great Grandma laugh.
I was fortunate enough to be able to get to know her as I grew up. One time when I was visiting her as a young adult, Grandma Driscoll was telling me a story about being a little girl and how her sister Jo would just be so mortified by her when they went to church. She told me that Jo would always elbow her or nudge her and say, "Roxie! Quit singing so loud, you're embarrassing me." When she told me that story it was the first time I'd thought of my Great Grandma as a little girl named Roxie and made me also realize how spunky, friendly and rambunctious she'd always been.
I knew I'd love to have a daughter named after her. My Great Grandma lived to be 104. She passed away the same year Roxie was born. I was able to go and visit her that February (before I even knew if the baby I was carrying was a girl) and I asked her for permission to name my daughter Roxie. Grandma was just tickled and she immediately said, " You tell that precious Roxie every day that she is beautiful."
My Roxie is beautiful, most importantly where it counts - on the inside.
We chose Jane for her middle name to honor Nick's mom and dad. Nick's mom's name is Janet and she goes by Janet to everyone who knows her, everyone except Al. Al affectionately calls Janet, Jane. I thought it was sweet from the moment I heard it and when I asked Nick why his dad called her Jane, Nick said, "I don't know, but he always had - as long as I can remember." It was an easy middle name pick!
The Schopp part is obviously self explanatory. :)
Team work :)
I just came back up from nursing Walker to
find Nick and the Doc (also a guy) working
together to wash Roxie's hair. It was awesome. Roxie was miserable during but obviously felt better afterwards!
find Nick and the Doc (also a guy) working
together to wash Roxie's hair. It was awesome. Roxie was miserable during but obviously felt better afterwards!
11/26/11
Roxie is on her fourth day of chemo. Yesterday Roxie did throw up from the medicine. It was an entirely new experience for her, which startled her but did provide relief when she was done. They don't expect that to be the last time. Chemo treatments are cumulative so the effect it has on a body compounds as each dose of medicine is delivered.
This morning began we woke to blood cultures being drawn and the nurses informing us that Roxie is running a fever. They'll have preliminary results on her blood within 24 hours and the final word on the bacteria by 48hrs. They've already begun to administer an antibiotic by IV. She'll be admitted here in the hospital until she's fever/bug free. I'm praying that doesn't set us back too far from our goal date of Wednesday for going home.
We asked the nurses how or why she caught something when she's just been in her room this whole time. They basically said if you or your visitors have anything, she's going to get it. That, of course, makes me nervous about taking her home. They say when we're home they encourage children like Roxie to live a normal life - go to school, play with friends, take them shopping at the grocery store. How does that make any sense? On one hand they say, "If there's a bug she's going to get it." and on the other, "Sure go ahead and take her back into the land of GERMS."
I've talked to a couple of parent contacts that were forwarded to me about High Risk, Stage IV Neuroblastoma. I've also talked with other parents who've had a child on chemo unrelated to High Risk, Stage IV Neuroblastoma. Everyone has told me to write everything down, every day. Becoming an expert on this disease and the treatments has me overwhelmed. I've never been a great student and I have to work very hard to stay organized. I'm hoping that once we've distanced ourselves from feeling like we've been hit by a truck with this news and Walker is healthy, the task of writing everything down, every day will seem more manageable.
Speaking of Walker, he's doing fantastic. He's still in the NICU and is scheduled to stay there until at least Tuesday. The only issue they're working on correcting at this time is administering antibiotics to rid him of all infection. Otherwise he's ready to get out of here. They've had to replace his IV three different times and this last time chose to use the veins in his head. They tell us it's actually less painful than using the veins in his arms or legs. When they put it in though, it took them EIGHT TIMES of sticking him on his scalp before they got it right. It was done during the night while Nick and I were sleeping. When Nick heard the news it was the first time I saw him lose his patience. He went right down to the 5th floor and told the Dr, "If it took you 8 times of sticking me to get an IV in right we'd be having a screaming match right now. Well this little guy can't scream at you himself so I'm here to do it for him." The Dr assured us he had his "Best Stickers" do the job. Then Nick compared the situation to football saying, "It doesn't matter if you send in you're best players if you're the worst team in the league." He's calmed down since then and I don't think he really believes the nurses in the NICU are all bad. We're just ready for him to get out of there. Nick is a rational man. He's usually the one telling me to take it easy on someone. I was glad to see his protective parental side come out.
Every one tells us we have to be our own child's advocate and I like knowing we're both here to have a voice for our kids. We're here to cooperate with the health professionals but we want to make sure they also know - Don't mess with the S family!!!
Roxie & Mommy on Thanksgiving
11.11.11 little boy, our Walker
Sweet sister on Thanksgiving day
11/24/2011
Since the news we received on Tuesday I have struggled to find a way to make sense of this all. It's been difficult and I'm still not sure sometimes if this isn't just all a terrible dream that we'll wake from. I was too angry and sad over the last 36hrs to update the blog on the situation. Roxie is in for the fight of her life, literally. Nick and I are both prepared to be here for her, giving it our all too. Chemo started yesterday and so far she's handling it comfortably. If she's going to experience any discomfort we should see that show up today or tomorrow. Roxie could use a break so I'm praying that the chemo is going to aggressively tackle the neuroblastoma while taking it easy on her.
Nick and I made the most of today by taking Roxie down to the cafeteria in her wagon for lunch and followed that with a walk on the rooftop garden. Today has been one of her best days since we were admitted last Tuesday. We even heard her giggle while watching Dopey chase a bar of soap on Snow White. For that I am thankful.
It's a different kind of Thanksgiving holiday this year for our family, even still there are many things I am grateful for...
I am grateful for the visitors that stopped by today. In the hospital, it doesn't feel much like a holiday but to hear about their plans for dinner with family made me realize it is a special day worth celebrating and lifted my spirits. I am grateful that Walker is nursing again. It's made my days a little more complicated because since last Friday I've had a baby on fluids and therefore haven't had to be on his eating schedule every three hours. Up and down, up and down, up and down from the 5th floor to the 9th and back again. Roxie made a trip down to see Walker yesterday with us in her wagon to help deliver some of the milk I'd pumped. I'm impressed with how understanding she's been about the fact that he needs Nick and I too.
I am grateful for Nick. Always. He brought clothes to dress himself and Roxie for the holiday. He's wearing a nice sweater with khakis and even brought a blazer. He also picked up a dress for Roxie to wear when he ran home yesterday. His attitude is inspiring and his hugs are golden. Every time he gives me one it feels like he's squeezing the yucky feelings I have inside right out of me and filling me up with better ones. I am grateful that Greta was here today. She's so busy, fast and curious that being in the hospital can get pretty harry-pretty quick. Today was a little different though. It was closer to nap time when the Diamonds brought her up and she was ready to just chill. I loved watching her and Roxie lay together in bed to watch a movie.
I am grateful for sisters. Just like I know Sawyer, Greta and Roxie will have each other to depend on, my sister and her family have been so amazing over the past week. When Walker was in CICU and Roxie was undergoing testing, Wendy patiently sat with Walker for over three hours (even though there was nothing she could do, I don't even think she could touch Walker at that time) just because she knew it would bring me peace to know he was not alone.
I am grateful for eyelashes. Roxie's eyelashes are ridiculously long and pretty. She shares the same eyes as her father. They're so unique. Even though I know they'll be gone by Christmas I've loved staring at her eyelashes while she's been so sleepy here. Her hair will grow back, but I wonder if she'll ever have these gorgeous, long baby lashes again.
I am grateful for chemo.
I am grateful for those of you who donated blood or platelets. It's crucial to have blood products available during treatment for kids with cancer. I am grateful that I am a mom. I love my kids so much. There's nothing I've ever done that feels as comfortable and natural to me as loving my four children.
I am grateful for Keisha who cleans our room. She's always polite and smiling. She does a great job and never feels like she's in our way. She actually just stopped by to tell us Happy Thanksgiving before she left for the weekend.
I am grateful for all of the wonderful gifts, letters, donations, prayers and thoughts that have come our way. This hospital is a time suck so it's been impossible for me to keep up with the Thank Yous. Please, please know how grateful Roxie, Nick, Greta, Sawyer, Walker and I are that you're thinking of us. Feeling supported has been the difference in peeling myself off the floor and getting back up instead of staying down. I like to think of myself as having a strong resolve but this has all been really tough. We're taking it minute by minute, day by day and with your support, so far we're managing.
I am grateful that we should all be able to be home together by next Wednesday. It's just a coincidence in timing but we're thankful that Walker and Roxie are both scheduled to be released sometime early next week. My whole family under one roof in less than a week is perfection. I'm apprehensive about caring for Roxie outside of the hospital for the first time but I think breaking out of this place should do us all some good. We'll be checking back in every three weeks for 5 days at time for chemo now that we've started treatment. The time home will help us rally before the next stay.
I am grateful for humor/laughter. I mean, c'mon - who doesn't love a good laugh? I especially love it when it comes from the kids.
I am grateful for the Happy Thanksgiving turkey hand print placement that is hanging in our room. Roxie's teachers came by earlier in the week to drop it off. I look forward to next year when it's on our dinner table at home for Roxie to use under her plate.
I am grateful for family and I know you all are too!
Happy Thanksgiving from the Schopp's. I hope everyone has a wonderful holiday surrounded by loved ones. Eat lots of turkey, nap on the couch and help yourself to that second piece of pumpkin pie for us.
Nick and I made the most of today by taking Roxie down to the cafeteria in her wagon for lunch and followed that with a walk on the rooftop garden. Today has been one of her best days since we were admitted last Tuesday. We even heard her giggle while watching Dopey chase a bar of soap on Snow White. For that I am thankful.
It's a different kind of Thanksgiving holiday this year for our family, even still there are many things I am grateful for...
I am grateful for the visitors that stopped by today. In the hospital, it doesn't feel much like a holiday but to hear about their plans for dinner with family made me realize it is a special day worth celebrating and lifted my spirits. I am grateful that Walker is nursing again. It's made my days a little more complicated because since last Friday I've had a baby on fluids and therefore haven't had to be on his eating schedule every three hours. Up and down, up and down, up and down from the 5th floor to the 9th and back again. Roxie made a trip down to see Walker yesterday with us in her wagon to help deliver some of the milk I'd pumped. I'm impressed with how understanding she's been about the fact that he needs Nick and I too.
I am grateful for Nick. Always. He brought clothes to dress himself and Roxie for the holiday. He's wearing a nice sweater with khakis and even brought a blazer. He also picked up a dress for Roxie to wear when he ran home yesterday. His attitude is inspiring and his hugs are golden. Every time he gives me one it feels like he's squeezing the yucky feelings I have inside right out of me and filling me up with better ones. I am grateful that Greta was here today. She's so busy, fast and curious that being in the hospital can get pretty harry-pretty quick. Today was a little different though. It was closer to nap time when the Diamonds brought her up and she was ready to just chill. I loved watching her and Roxie lay together in bed to watch a movie.
I am grateful for sisters. Just like I know Sawyer, Greta and Roxie will have each other to depend on, my sister and her family have been so amazing over the past week. When Walker was in CICU and Roxie was undergoing testing, Wendy patiently sat with Walker for over three hours (even though there was nothing she could do, I don't even think she could touch Walker at that time) just because she knew it would bring me peace to know he was not alone.
I am grateful for eyelashes. Roxie's eyelashes are ridiculously long and pretty. She shares the same eyes as her father. They're so unique. Even though I know they'll be gone by Christmas I've loved staring at her eyelashes while she's been so sleepy here. Her hair will grow back, but I wonder if she'll ever have these gorgeous, long baby lashes again.
I am grateful for chemo.
I am grateful for those of you who donated blood or platelets. It's crucial to have blood products available during treatment for kids with cancer. I am grateful that I am a mom. I love my kids so much. There's nothing I've ever done that feels as comfortable and natural to me as loving my four children.
I am grateful for Keisha who cleans our room. She's always polite and smiling. She does a great job and never feels like she's in our way. She actually just stopped by to tell us Happy Thanksgiving before she left for the weekend.
I am grateful for all of the wonderful gifts, letters, donations, prayers and thoughts that have come our way. This hospital is a time suck so it's been impossible for me to keep up with the Thank Yous. Please, please know how grateful Roxie, Nick, Greta, Sawyer, Walker and I are that you're thinking of us. Feeling supported has been the difference in peeling myself off the floor and getting back up instead of staying down. I like to think of myself as having a strong resolve but this has all been really tough. We're taking it minute by minute, day by day and with your support, so far we're managing.
I am grateful that we should all be able to be home together by next Wednesday. It's just a coincidence in timing but we're thankful that Walker and Roxie are both scheduled to be released sometime early next week. My whole family under one roof in less than a week is perfection. I'm apprehensive about caring for Roxie outside of the hospital for the first time but I think breaking out of this place should do us all some good. We'll be checking back in every three weeks for 5 days at time for chemo now that we've started treatment. The time home will help us rally before the next stay.
I am grateful for humor/laughter. I mean, c'mon - who doesn't love a good laugh? I especially love it when it comes from the kids.
I am grateful for the Happy Thanksgiving turkey hand print placement that is hanging in our room. Roxie's teachers came by earlier in the week to drop it off. I look forward to next year when it's on our dinner table at home for Roxie to use under her plate.
I am grateful for family and I know you all are too!
Happy Thanksgiving from the Schopp's. I hope everyone has a wonderful holiday surrounded by loved ones. Eat lots of turkey, nap on the couch and help yourself to that second piece of pumpkin pie for us.
Addy, a guardian angel
from Holly... "If you don't already know, Addy McCumber Crenshaw is the kind of friend you want on your side. She is priceless to me."
We are asking everyone to also pray and give thanks for Addy. She selflessly left her 3 little ones back in Jacksonville, while being at Holly's side for hugs, love, support, nanny services, laughs, chauffeur, coffee runner, you name it! She has been at Holly's side since last Wednesday and continues to stay there now, she is truly a guardian angel, and we are so thankful for her!
We are asking everyone to also pray and give thanks for Addy. She selflessly left her 3 little ones back in Jacksonville, while being at Holly's side for hugs, love, support, nanny services, laughs, chauffeur, coffee runner, you name it! She has been at Holly's side since last Wednesday and continues to stay there now, she is truly a guardian angel, and we are so thankful for her!
Running a sprint with Walker and
a Marathon with Roxie
Today was a relatively calm day at the hospital and it's exactly what I needed. Tomorrow will be a big day for us. Walker gets his breathing tube removed and Roxie's diagnosis will be determined. Once Walker's breathing tube is removed we'll have the chance to hold our son. Once Roxie's diagnosis is revealed we'll review her treatment. The Cardiologist that saved Walker's life in the ER likened our experience to running a sprint with the baby and a marathon with Roxie.
Even though tomorrow will serve as an end to the means of this waiting game we've been playing on her diagnosis, I'm still really hesitant about having that discussion. I know that her "roadmap for treatment" will make all of this very real and the un pleasantries of Roxie's chemo will be the main topic. Apparently we're given a book that outlines what, where and when treatments will take place during the course of her recovery. I'm already apprehensive about the mound of consent forms we'll need to sign and the million words I will have never heard before or understand. Thankfully I have had several "regular Mom" resources (again mostly strangers) who've experienced something similar reach out to me to offer their help in weeding through what it all truly means for Roxie. No matter the outcome tomorrow, treatment will begin by Wednesday. The first round of treatment is always done in hospital to keep a close eye on Roxie so they can manage discomfort or infection. Clearly I'm interested in hearing how much longer they're planning on having us admitted here.
Walker is expected to spend several more days in CICU before he's moved to recovery on the other side of his floor. We're hoping he'll be given the all clear in about a week. His surgeon highly recommends removing Walker from Children's as soon as he's ready to be released from the cardio floor. Even though the floor Roxie's room is on is considered a "clean" floor (no contagious diseases or respiratory issues), the Dr doesn't believe it's best for him to stay here at the hospital with us now that his already weak newborn immune system has taken the additional hit of surgery. His body needs to continue to recover safely, at home. I agree with the surgeon but also know how difficult that will be for Nick and I with Roxie still here undergoing Chemo. I'm sure we'll work out all of the details, it just feels like their should be 3 of me.
I miss my other girls so much. Sawyer and Greta are obviously as special to us as the two here that need our care. Thank God for the friends and family that have been caring for them over the past 10 days. I literally couldn't be here concentrating on getting Roxie and Walker well if I wasn't 100% confident that my other babies were in perfect care, feeling loved and supported too.
The group of girls that I grew up with are responsible for Roxie's care site. I think they've done an amazing job. I received an email today from the host site itself acknowledging that in the 4-5days since the site's been up there have been over 3,500 page views. I have received emails and messages from loved ones, relatives I have never met, strangers and friends. I can't tell you how touched I am by everyone's investment in helping our family get through this tough time. Your love and support has blown me away.
Even though tomorrow will serve as an end to the means of this waiting game we've been playing on her diagnosis, I'm still really hesitant about having that discussion. I know that her "roadmap for treatment" will make all of this very real and the un pleasantries of Roxie's chemo will be the main topic. Apparently we're given a book that outlines what, where and when treatments will take place during the course of her recovery. I'm already apprehensive about the mound of consent forms we'll need to sign and the million words I will have never heard before or understand. Thankfully I have had several "regular Mom" resources (again mostly strangers) who've experienced something similar reach out to me to offer their help in weeding through what it all truly means for Roxie. No matter the outcome tomorrow, treatment will begin by Wednesday. The first round of treatment is always done in hospital to keep a close eye on Roxie so they can manage discomfort or infection. Clearly I'm interested in hearing how much longer they're planning on having us admitted here.
Walker is expected to spend several more days in CICU before he's moved to recovery on the other side of his floor. We're hoping he'll be given the all clear in about a week. His surgeon highly recommends removing Walker from Children's as soon as he's ready to be released from the cardio floor. Even though the floor Roxie's room is on is considered a "clean" floor (no contagious diseases or respiratory issues), the Dr doesn't believe it's best for him to stay here at the hospital with us now that his already weak newborn immune system has taken the additional hit of surgery. His body needs to continue to recover safely, at home. I agree with the surgeon but also know how difficult that will be for Nick and I with Roxie still here undergoing Chemo. I'm sure we'll work out all of the details, it just feels like their should be 3 of me.
I miss my other girls so much. Sawyer and Greta are obviously as special to us as the two here that need our care. Thank God for the friends and family that have been caring for them over the past 10 days. I literally couldn't be here concentrating on getting Roxie and Walker well if I wasn't 100% confident that my other babies were in perfect care, feeling loved and supported too.
The group of girls that I grew up with are responsible for Roxie's care site. I think they've done an amazing job. I received an email today from the host site itself acknowledging that in the 4-5days since the site's been up there have been over 3,500 page views. I have received emails and messages from loved ones, relatives I have never met, strangers and friends. I can't tell you how touched I am by everyone's investment in helping our family get through this tough time. Your love and support has blown me away.
Always by your side, in 1992 and 2011...
Maggie (website developer), Katrin (tshirt owner/donator), Kay (Tshirt art director) and Julie (designer)... and family
Virtual Blood Drive for Roxie
Since we are all learning as we go here, I wanted to share that today I got some clarification on how Direct Blood Donation works. Typically family establishes a handful of people who are considered Direct Blood Donors. These people are called upon at the specific time when blood/platelets are needed for that specific patient. The blood is not banked and typically goes bad within 3 days.
Because of the thoughtfulness of friends with the best intentions, Nick and I are actually experiencing what you could call a movement (literally hundreds of strangers, friends and relatives) of people who are looking to help by donating blood or platelets to Roxie. I'm requesting that all of you at this time please move forward with those intentions and we'll call this a virtual blood drive in Roxie's honor. Children, just like Roxie, from all across the country can benefit from these life saving blood products. It would mean no less to us that a donation was made in her honor as opposed to a direct donation. Roxie will certainly be the recipient of these products through her treatment that will have come from the kindness of other's hearts just like yours. We would love to use this wave of generosity for the good of all children fighting cancer. Let's get these kids better one donation at a time!
Once you have donated in Roxie's name, please repost this picture on your Facebook, Twitter, Blogs, etc... so we can get the word out even further! Thank you so much for you kindness and support!
Because of the thoughtfulness of friends with the best intentions, Nick and I are actually experiencing what you could call a movement (literally hundreds of strangers, friends and relatives) of people who are looking to help by donating blood or platelets to Roxie. I'm requesting that all of you at this time please move forward with those intentions and we'll call this a virtual blood drive in Roxie's honor. Children, just like Roxie, from all across the country can benefit from these life saving blood products. It would mean no less to us that a donation was made in her honor as opposed to a direct donation. Roxie will certainly be the recipient of these products through her treatment that will have come from the kindness of other's hearts just like yours. We would love to use this wave of generosity for the good of all children fighting cancer. Let's get these kids better one donation at a time!
Once you have donated in Roxie's name, please repost this picture on your Facebook, Twitter, Blogs, etc... so we can get the word out even further! Thank you so much for you kindness and support!
Walker Schopp
Who would have thought in a million years that when beautiful friends of mine created a support site for Roxie that my first personal post would be about Walker?
First, quickly I just want to mention the circumstance our family is in seems unbelievable at times. I am sure for everyone who cares the news of what we're dealing with is upsetting. I'm trying to keep all posted on my babes but what I unfortunately don't have the time to do is keep you updated on all of the regular things that happen in a day. So right now I'm sure reading status updates are brutal. I want you all to know that while this is the most difficult thing either Nick or I have ever done, there are plenty of regular moments and even (more than you might think) moments of laughter that are helping us cope and make it through the moments that seem unbearable. I can honestly say the support we've received has made a difference in our ability to stay positive.
Nick was born with a co arctation of the aorta. Knowing that I'm married to a living, breathing example of a baby that's been through a similar experience definitely brings comfort to this situation. That being said, a four hour surgery on your baby can take a toll on your nerves. A little over a week ago I was a mess stressing about Walker getting a circumcision. Dealing with the current scenario, that thought really made me laugh at myself yesterday.
Walker is beautiful. He loves the sound of his sisters voices. He looks just like his father. When he looks at you it feels like he really sees. We love to kiss his lips because, like babies do, he goes crazy wanting to suck and the girls think that means he wants more kisses. Nick has always been an amazing Dad, but you forget how much work a new born is and watching Nick swing right back into that role so flawlessly reminds me how lucky I am to have him as a partner in life and in parenting. I'm glad Nick is Walker's dad. I believe Walker is going to be in my arms again soon, nursing furiously. I just have to be patient for a couple more days. He's my brand new baby and the only thing that's keeping me from totally losing my cool is knowing that the care he's receiving right now is saving his life and coming from a hospital staff that's already proven time and time again to be nearly as invested in our children's recovery as we are. I know he's in good care. This isn't ideal for a healthy one week old but for Walker, believe it or not, where we are couldn't be more ideal.
On a side note, of all of our girls, Roxie was by far the least impressed with Walker's arrival. Sawyer and Greta were immediately in love but Roxie even asked us to take him back at one point because she didn't like the way his umbilical cord looked. This shared time in the hospital has really proven to be a bonding experience for her as his sibling. She asks about him frequently. She's acknowledged the fact that he's a "cute baby" sometimes and (before the heart issue) even granted me permission to lay in her bed WITH Walker after about the second day we were here. Last night Nick managed to convince Roxie to get out of bed to take a wagon ride and his bait was a trip to the 7th floor to see her brother. This morning she really didn't want me to leave her but when I told her I had to go down to take care of Walker before his surgery, she understood. There's always a silver lining and their developing relationship is one I find a lot of joy in.
Roxie has had a tough couple of days recovering from surgery. It's been rough to watch because we brought her here to make her feel better and she's only felt worse since our arrival. It's also a bit of foreshadowing that I don't love because I know her road to recovery on chemo won't be easy. On a scale of 1-10, Roxie has been on about a 2 for the last 48hrs + , but this morning she woke up appearing to have made it around a corner and I'd say she' closer to a 5 or 6. She asked to turn the lights on and watch a movie. She even let me brush her hair and put it in a pony. She attempted to eat some grapes and wanted to open one of the lovely gifts that have been sent. I'm glad to see her like this because at this point all hands are on deck. Family members have come from everywhere to be with us and today is a good day for visiting. I want Roxie to enjoy seeing the ones that she loves.
I want to say a special thanks to my Mom. She traveled all of this way to support us and her grand babies. Because she wasn't feeling well before she made the trip, she's been prescribed antibiotics and selflessly knows that until they kick in it's best not to be around the babies. That's a tough sacrifice for a grandma who just wants to deliver hugs and kisses. She's proven to be the model for family and friends on the sensitivity we'd appreciate concerning bugs and sickness as we work to repair our kid's immune systems moving forward.
First, quickly I just want to mention the circumstance our family is in seems unbelievable at times. I am sure for everyone who cares the news of what we're dealing with is upsetting. I'm trying to keep all posted on my babes but what I unfortunately don't have the time to do is keep you updated on all of the regular things that happen in a day. So right now I'm sure reading status updates are brutal. I want you all to know that while this is the most difficult thing either Nick or I have ever done, there are plenty of regular moments and even (more than you might think) moments of laughter that are helping us cope and make it through the moments that seem unbearable. I can honestly say the support we've received has made a difference in our ability to stay positive.
Nick was born with a co arctation of the aorta. Knowing that I'm married to a living, breathing example of a baby that's been through a similar experience definitely brings comfort to this situation. That being said, a four hour surgery on your baby can take a toll on your nerves. A little over a week ago I was a mess stressing about Walker getting a circumcision. Dealing with the current scenario, that thought really made me laugh at myself yesterday.
Walker is beautiful. He loves the sound of his sisters voices. He looks just like his father. When he looks at you it feels like he really sees. We love to kiss his lips because, like babies do, he goes crazy wanting to suck and the girls think that means he wants more kisses. Nick has always been an amazing Dad, but you forget how much work a new born is and watching Nick swing right back into that role so flawlessly reminds me how lucky I am to have him as a partner in life and in parenting. I'm glad Nick is Walker's dad. I believe Walker is going to be in my arms again soon, nursing furiously. I just have to be patient for a couple more days. He's my brand new baby and the only thing that's keeping me from totally losing my cool is knowing that the care he's receiving right now is saving his life and coming from a hospital staff that's already proven time and time again to be nearly as invested in our children's recovery as we are. I know he's in good care. This isn't ideal for a healthy one week old but for Walker, believe it or not, where we are couldn't be more ideal.
On a side note, of all of our girls, Roxie was by far the least impressed with Walker's arrival. Sawyer and Greta were immediately in love but Roxie even asked us to take him back at one point because she didn't like the way his umbilical cord looked. This shared time in the hospital has really proven to be a bonding experience for her as his sibling. She asks about him frequently. She's acknowledged the fact that he's a "cute baby" sometimes and (before the heart issue) even granted me permission to lay in her bed WITH Walker after about the second day we were here. Last night Nick managed to convince Roxie to get out of bed to take a wagon ride and his bait was a trip to the 7th floor to see her brother. This morning she really didn't want me to leave her but when I told her I had to go down to take care of Walker before his surgery, she understood. There's always a silver lining and their developing relationship is one I find a lot of joy in.
Roxie has had a tough couple of days recovering from surgery. It's been rough to watch because we brought her here to make her feel better and she's only felt worse since our arrival. It's also a bit of foreshadowing that I don't love because I know her road to recovery on chemo won't be easy. On a scale of 1-10, Roxie has been on about a 2 for the last 48hrs + , but this morning she woke up appearing to have made it around a corner and I'd say she' closer to a 5 or 6. She asked to turn the lights on and watch a movie. She even let me brush her hair and put it in a pony. She attempted to eat some grapes and wanted to open one of the lovely gifts that have been sent. I'm glad to see her like this because at this point all hands are on deck. Family members have come from everywhere to be with us and today is a good day for visiting. I want Roxie to enjoy seeing the ones that she loves.
I want to say a special thanks to my Mom. She traveled all of this way to support us and her grand babies. Because she wasn't feeling well before she made the trip, she's been prescribed antibiotics and selflessly knows that until they kick in it's best not to be around the babies. That's a tough sacrifice for a grandma who just wants to deliver hugs and kisses. She's proven to be the model for family and friends on the sensitivity we'd appreciate concerning bugs and sickness as we work to repair our kid's immune systems moving forward.
Prayers for Walker
Walker is precious. He's resting well. We'll be heading out of here around 7am. The whole procedure should last about 4 hours. I'm looking forward to delivering some good news to the "Team" by lunch. Love you all!
Oh and the coffee in CICU is WAY better than on Oncology. Nick and I decided that would be our first donation back to the Oncology floor at Children's. ;)
Oh and the coffee in CICU is WAY better than on Oncology. Nick and I decided that would be our first donation back to the Oncology floor at Children's. ;)
from Holly
I am very grateful for all of the prayers and sharing of information. My amazing friends have already created a website for Nick an I to eventually start blogging, which I know we will. Hopefully that will prove to be a way to stay connected with loved ones while giving accurate updates on our kiddos condition. I do want to mention that Roxie's cancer has not been diagnosed. We will find that informaiton out on Tuesday when the biopsies from surgery come back from pathology.
One of their fantastic ideas was to petition for blood donations. Roxie, like any child going through chemo, will need continuous blood and platelet transfusions. Her most recent transfusion was as a result of her "counts" being low and part of the reason for that is the size of the tumor but in the future there will be many, many reasons she'll need the extra blood. Thank you so much for all of your support!
One of their fantastic ideas was to petition for blood donations. Roxie, like any child going through chemo, will need continuous blood and platelet transfusions. Her most recent transfusion was as a result of her "counts" being low and part of the reason for that is the size of the tumor but in the future there will be many, many reasons she'll need the extra blood. Thank you so much for all of your support!
Coming soon, more posts from Holly & Nick...
All the prayers and good thoughts are working because believe it or not, Nick and I are managing through all of this. He's a great partner to have. We also have been blown away by the support we've received from our friends and especially the family & staff here helping us cope. We are grateful for you all.
TEAM Walker!
Last night a heart defect in Walker presented itself, almost identical to what Nick experienced as a newborn. It was an intense 1 1/2hrs trying to determine if he was going to make it. They were able to stabilize him and move him to Children's Cardiac ICU. He is scheduled for heart surgery tomorrow morning. We've been told Walker should recover from the surgery well and if so, be out of the CICU in about a week.
Donate Blood for Roxie (type A & O)
We've found a small way to help Holly & Roxie. She is now having
blood transfusions due to the size of the tumor, and we can donate blood
at our local Red Cross in her name no matter what state you are in.
Go to your local Red Cross donation center (Jacksonville Beach friends its the Florida Blood Alliance on 3rd street) then tell them the blood is for Roxie Schopp at Childrens Hospital in St Louis, she can take either type A or O and your donation will be sent to Children's Hospital for Roxie.
http://www.redcrossblood.org/donating-blood
Go to your local Red Cross donation center (Jacksonville Beach friends its the Florida Blood Alliance on 3rd street) then tell them the blood is for Roxie Schopp at Childrens Hospital in St Louis, she can take either type A or O and your donation will be sent to Children's Hospital for Roxie.
http://www.redcrossblood.org/donating-blood
Psalms of Encouragement
Psalm 23:1-3
The LORD is my shepherd; I shall not want.
He makes me to lie down in green pastures: he leads me beside the still waters.
He restores my soul: he leads me in the paths of righteousness for his name's sake.
Psalm 138:3
As soon as I pray, you answer me;
you encourage me by giving me strength.
Psalm 118:6
The Lord is with me; I will not be afraid.
Psalm 18:2
The LORD is my rock and my fortress and my deliverer,
My God, my rock, in whom I take refuge; My shield and my salvation, my stronghold.
Psalm 34:18
The LORD is near to the brokenhearted, And saves those who are broken in spirit.
