Last chemo infusion today
8 months ago to the day, our girl was diagnosed with stage 4 Neuroblastoma and began her first round of chemo the next day March 19. 8 months ago to the day, we thought we might lose her. But she is doing remarkable things. After 8 months of chemotherapy, today they hung her very last bag of chemo. Ever. It will run over 24hrs and finish up tomorrow late afternoon. I wish I could say she's earned an easy last round. I can say that as she has, but it doesn't make it so. She is feeling so sick. Lots of nausea and belly pain and fatigue already. It's hit her hard and fast. But...all expected and normal side effects and so we will be grateful and hope that it continues as so.
Needless to say, we are so happy to be finished with chemotherapy after so long. I wish we could stay here and relish this moment. But we are seeing signs already that her bone marrow is deteriorating. This is, of course, the expected side effect of this high dose chemo. The hope is these last infusions mop up microscopic cancer cells, but in doing so they leave a wake of destruction in her healthy cells. Therefore, we are already looking ahead to her final stem cell transplant which will rescue her bone marrow once and for all. The transplant will occur next Wednesday, the day before Thanksgiving. And then we watch her cells grow once again, giving our baby girl life back again.
And once she recovers from this and she has healthy bone marrow again, we still don't rest for long...we received a phone call yesterday from Childrens Hospital of Philadelphia. Charlotte has been approved to receive a special type of radiation there called proton radiation. Her next step in treatment is radiation but we wondered if she would be a candidate for Proton radiation because it has all the therapeutic benefits of standard radiation without the long term side effects it can potentially have (organ damage, secondary solid tumor cancers to name a few). It looks like there is a good chance we will take Charlotte there for about a month after she recovers from this Bone Marrow Transplant. Funny thing is, she is such a southern bell! She cries when I take her to the bus stop and it's 50 degrees! Phili end of January through February is some real winter! And radiation is out patient 😬😳👍🏻 But honestly, we can't wrap our minds around that right now. Moving away from our home and family for a month, and all the logistics involved? We have to push all of that to the background for now and focus on getting our girl TO that stage.
And even after a month of daily radiation, we move into 5 months of immunotherapy before finishing with 6 months of oral chemotherapy. Therefore, after 8 months, we are close to the half way mark of finishing this protocol. What will life be like then? It feels like forever since we haven't had a life centered around hospitals and clinic visits and side effects and time apart. I can hardly imagine it. But I need to. I need to visualize and believe it will happen. Because I truly believe it will. I always have. My biggest fear has really been that 2-3 years down the road, and Charlotte is a little 5 year old, we go in for a routine scan to evaluate and there is a spot somewhere. Evidence that neuroblastoma has come back. This is what haunts my dreams. This is what sometimes dampens my spirit when we should be celebrating the moment, the current victory and yet I look down field. But it's dark down field. I can't see. None of us can. And this is where God saves me. It's in those moments I feel him with me the most. Because when I feel fear and doubt creep up even with zero logical reason for it to do so...there is a strange calming presence that transcends. There is wisdom that takes the place of doubt. There is serenity that takes the place of fear. And there is a deep rooted desire to let the calm emotions flood out the worry. This is God showing me he is here. This is one of the ways I feel my faith growing although there are many, many others as well. It's the only way I can explain how Brian and I are coping as we juggle and worry and pray and balance and watch and feel what no parent ever should. But we are being blessed because instead of feeling like our daughter is slipping away from us...we are watching her, in live action, get stronger. Slowly, steadily beating this cancer back until there is not a little cell anywhere that could show it's ugly face again. And truly WE are being given more time, whatever that time that amounts to, whether it's years or decades. Time to live life and make memories together. After today, we are a huge step closer to being able to do just that: live a life making memories TOGETHER. Oh and carry out what we feel is calling us to do. Because one thing is for sure. This experience has changed us. It has changed us for the better and there really is no going back. No need to really "reclaim" anything lost. Because we have gained so so much while on this journey with our Charlotte.
Needless to say, we are so happy to be finished with chemotherapy after so long. I wish we could stay here and relish this moment. But we are seeing signs already that her bone marrow is deteriorating. This is, of course, the expected side effect of this high dose chemo. The hope is these last infusions mop up microscopic cancer cells, but in doing so they leave a wake of destruction in her healthy cells. Therefore, we are already looking ahead to her final stem cell transplant which will rescue her bone marrow once and for all. The transplant will occur next Wednesday, the day before Thanksgiving. And then we watch her cells grow once again, giving our baby girl life back again.
And once she recovers from this and she has healthy bone marrow again, we still don't rest for long...we received a phone call yesterday from Childrens Hospital of Philadelphia. Charlotte has been approved to receive a special type of radiation there called proton radiation. Her next step in treatment is radiation but we wondered if she would be a candidate for Proton radiation because it has all the therapeutic benefits of standard radiation without the long term side effects it can potentially have (organ damage, secondary solid tumor cancers to name a few). It looks like there is a good chance we will take Charlotte there for about a month after she recovers from this Bone Marrow Transplant. Funny thing is, she is such a southern bell! She cries when I take her to the bus stop and it's 50 degrees! Phili end of January through February is some real winter! And radiation is out patient 😬😳👍🏻 But honestly, we can't wrap our minds around that right now. Moving away from our home and family for a month, and all the logistics involved? We have to push all of that to the background for now and focus on getting our girl TO that stage.
And even after a month of daily radiation, we move into 5 months of immunotherapy before finishing with 6 months of oral chemotherapy. Therefore, after 8 months, we are close to the half way mark of finishing this protocol. What will life be like then? It feels like forever since we haven't had a life centered around hospitals and clinic visits and side effects and time apart. I can hardly imagine it. But I need to. I need to visualize and believe it will happen. Because I truly believe it will. I always have. My biggest fear has really been that 2-3 years down the road, and Charlotte is a little 5 year old, we go in for a routine scan to evaluate and there is a spot somewhere. Evidence that neuroblastoma has come back. This is what haunts my dreams. This is what sometimes dampens my spirit when we should be celebrating the moment, the current victory and yet I look down field. But it's dark down field. I can't see. None of us can. And this is where God saves me. It's in those moments I feel him with me the most. Because when I feel fear and doubt creep up even with zero logical reason for it to do so...there is a strange calming presence that transcends. There is wisdom that takes the place of doubt. There is serenity that takes the place of fear. And there is a deep rooted desire to let the calm emotions flood out the worry. This is God showing me he is here. This is one of the ways I feel my faith growing although there are many, many others as well. It's the only way I can explain how Brian and I are coping as we juggle and worry and pray and balance and watch and feel what no parent ever should. But we are being blessed because instead of feeling like our daughter is slipping away from us...we are watching her, in live action, get stronger. Slowly, steadily beating this cancer back until there is not a little cell anywhere that could show it's ugly face again. And truly WE are being given more time, whatever that time that amounts to, whether it's years or decades. Time to live life and make memories together. After today, we are a huge step closer to being able to do just that: live a life making memories TOGETHER. Oh and carry out what we feel is calling us to do. Because one thing is for sure. This experience has changed us. It has changed us for the better and there really is no going back. No need to really "reclaim" anything lost. Because we have gained so so much while on this journey with our Charlotte.
Double rainbow tonight from my sister-in-law Esther
A couple days ago with daddy, before she started feeling awful
Last chemo infusion = matching shirts. Thanks Janice!
Feeling awful but also glad to be near them
Taylor drew this on Charlotte's room's white board😆 ( R2D2 is what Charlotte calls her IV Pole)
God Bless her
ReplyDeletePraying
Our home is your home when you are up here
And we will be there with you daily
Prayers for you and Brian as you guide the ship
We love you
Charlotte Strong
LY
Pops