Last day of chemo; transplant Friday!
"Quick" update: (my posts are rarely quick please forgive me😁❤️🌈)
A) her fever went down yesterday and she's fever free today! Fevers can occur for so many reasons while she is going through this, but protocol has her on another antibiotic now. So, we have more bases covered while her counts are dropping drastically and she will have no immunity for several weeks. Thanks for those prayers! They worked and it was a nonevent. Although fevers are routine in this unit, we will worry with each one and pray it doesn't indicate something major.
B) Today was Charlotte's last dose of chemo for this Transplant! This chemo has made her more sick then any other so far. She's unable to keep down solids or liquids for almost 48hrs now. Anti-nausea medications seem to take the edge off so she can still get up and play some, but they aren't keeping her from throwing up unfortunately. Our tough cookie keeps opening her mouth to try and eat though! She is a foodie by nature and we have that on our side. If the girl can eat, she will eat. Other then nausea though, she's hanging tough! During this last dose of chemo today she was actively playing in the playroom. She made snow and colored it with food coloring creating a giant mess that then turned into her creating snow cupcakes. While poison was coursing into her veins, she happily played with her messy hands and infectious giggle. She also rode push cars and a tricycle up and down the L shaped hall today before her body needed a rest. She is currently napping all snuggled up. As I watch her sleep, I love visualizing this army inside of her body destroying the enemy that is trying to hide within her. Her cancer has been so responsive to this therapy and we believe this round will be no exception.
C) Tomorrow is a day of rest and then Friday is her big transplant day! Her stem cell transplant is life saving but in reality quite an anticlimactic process. They simply transfuse one of her stem cell bags that they harvested and stored months ago via her central line just like any blood transfusion. In less then an hour, these baby stem cells will be back in their home (her body) where they instantly travel to her bone marrow and begin to differentiate and grow, creating her new bone marrow. This new bone marrow will begin to create all of her blood cells! Quite amazing. Her risk of infection is high during this time and we have quite a frightening list of possible complications, but since she is receiving her own stem cells one of the major complications called Graft vs host disease is almost never seen in her case. However, we will be praying hard for her little body to be spared from other risks such as blood infections and liver/kidney issues which are the more severe problems these kids can face. And then we watch her recover over several difficult weeks. She'll have some pain, such as Muscositis, that will be managed here in the unit and I'm sure she will have some tough days. But she can do this. And she'll recover just so that we can do this entire process over again with different chemos for her second stem cell transplant that could begin mid-November if we have no major delays. For many people, the day of transplant is a huge party. They even consider it a rebirth of sorts. But Charlotte's first transplant is temporary. Research has shown kids that receive a tandem transplant have a much better prognosis and so this is now the standard course of care.
I scrolled back through pictures, recently, so I could see her face before we were diagnosed. Brian and I agree that we hardly remember her looking this way. She has become this new little person over the past 6 months. Maturing and growing in ways we can't even put into words. Maturing in ways we wish she didn't have to. But as we celebrate her transplant this Friday, I like to visualize our bubbly, full faced, pink cheeked, head full of crazy hair that she would never let me style in bows, infectious smile with a hint of a wild streak, precocious Charlotte. Running care free while keeping up with her siblings, never remebering this time here. The only evidence is an abdominal scar and a spirit full of tenacity, grit, and mental toughness that can only be achieved by hauling your own IV pole over huge mountains for months on end without ever stopping to look back behind yourself and even ask why. These pictures below were taken just weeks before diagnosis. How could this demon be hiding here waiting to try and come take her away? She was so healthy and happy until Februrary...this is pediatric cancer. Why should we all care about spreading awareness, providing early detection screening that is as simple as a blood and urine test at a well check up, or helping to fund pediatric cancer research when most of our children will never have pediatric cancer? Because there was a time when ours didn't either.
I studied and became a cancer research scientist at Massey Cancer Center (I know...crazy and just one of several strange ironies as we are thrown into this world). I left the field after 3 years and some graduate study work because I felt the day to day work required in the lab did not align with my personality. I was not happy doing this work. It was not my calling. But here we are, and I am listening. Our daughter will beat this and we will learn and share and BECOME the difference.
A) her fever went down yesterday and she's fever free today! Fevers can occur for so many reasons while she is going through this, but protocol has her on another antibiotic now. So, we have more bases covered while her counts are dropping drastically and she will have no immunity for several weeks. Thanks for those prayers! They worked and it was a nonevent. Although fevers are routine in this unit, we will worry with each one and pray it doesn't indicate something major.
B) Today was Charlotte's last dose of chemo for this Transplant! This chemo has made her more sick then any other so far. She's unable to keep down solids or liquids for almost 48hrs now. Anti-nausea medications seem to take the edge off so she can still get up and play some, but they aren't keeping her from throwing up unfortunately. Our tough cookie keeps opening her mouth to try and eat though! She is a foodie by nature and we have that on our side. If the girl can eat, she will eat. Other then nausea though, she's hanging tough! During this last dose of chemo today she was actively playing in the playroom. She made snow and colored it with food coloring creating a giant mess that then turned into her creating snow cupcakes. While poison was coursing into her veins, she happily played with her messy hands and infectious giggle. She also rode push cars and a tricycle up and down the L shaped hall today before her body needed a rest. She is currently napping all snuggled up. As I watch her sleep, I love visualizing this army inside of her body destroying the enemy that is trying to hide within her. Her cancer has been so responsive to this therapy and we believe this round will be no exception.
C) Tomorrow is a day of rest and then Friday is her big transplant day! Her stem cell transplant is life saving but in reality quite an anticlimactic process. They simply transfuse one of her stem cell bags that they harvested and stored months ago via her central line just like any blood transfusion. In less then an hour, these baby stem cells will be back in their home (her body) where they instantly travel to her bone marrow and begin to differentiate and grow, creating her new bone marrow. This new bone marrow will begin to create all of her blood cells! Quite amazing. Her risk of infection is high during this time and we have quite a frightening list of possible complications, but since she is receiving her own stem cells one of the major complications called Graft vs host disease is almost never seen in her case. However, we will be praying hard for her little body to be spared from other risks such as blood infections and liver/kidney issues which are the more severe problems these kids can face. And then we watch her recover over several difficult weeks. She'll have some pain, such as Muscositis, that will be managed here in the unit and I'm sure she will have some tough days. But she can do this. And she'll recover just so that we can do this entire process over again with different chemos for her second stem cell transplant that could begin mid-November if we have no major delays. For many people, the day of transplant is a huge party. They even consider it a rebirth of sorts. But Charlotte's first transplant is temporary. Research has shown kids that receive a tandem transplant have a much better prognosis and so this is now the standard course of care.
I scrolled back through pictures, recently, so I could see her face before we were diagnosed. Brian and I agree that we hardly remember her looking this way. She has become this new little person over the past 6 months. Maturing and growing in ways we can't even put into words. Maturing in ways we wish she didn't have to. But as we celebrate her transplant this Friday, I like to visualize our bubbly, full faced, pink cheeked, head full of crazy hair that she would never let me style in bows, infectious smile with a hint of a wild streak, precocious Charlotte. Running care free while keeping up with her siblings, never remebering this time here. The only evidence is an abdominal scar and a spirit full of tenacity, grit, and mental toughness that can only be achieved by hauling your own IV pole over huge mountains for months on end without ever stopping to look back behind yourself and even ask why. These pictures below were taken just weeks before diagnosis. How could this demon be hiding here waiting to try and come take her away? She was so healthy and happy until Februrary...this is pediatric cancer. Why should we all care about spreading awareness, providing early detection screening that is as simple as a blood and urine test at a well check up, or helping to fund pediatric cancer research when most of our children will never have pediatric cancer? Because there was a time when ours didn't either.
I studied and became a cancer research scientist at Massey Cancer Center (I know...crazy and just one of several strange ironies as we are thrown into this world). I left the field after 3 years and some graduate study work because I felt the day to day work required in the lab did not align with my personality. I was not happy doing this work. It was not my calling. But here we are, and I am listening. Our daughter will beat this and we will learn and share and BECOME the difference.
Our Good ball. "strawberry hat" she said
Getting dolled up for who knows what
Hot chocolate with Taylor on a cold day
Her best bud and brother Parker
Cheering on Redskins back in January
Snow play back in January
Playing dress up. One of her favorite things
Proud Potty training moment in underwear a couple weeks before diagnosis
Today during last chemo for this transplant
Making colored snow today
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