The official last round of treatment has begun!
Today officially marks the start of Charlotte's final round of treatment! She will take her twice a day Retinoic Acid pills for the next 14 days and then she has completed the front line therapy! The day is coming! After 6 rounds of induction chemotherapy, a 10.5 hr surgery to remove her abdominal tumor, 2 stem cell transplants involving more high dose chemotherapy, 20 rounds of Proton radiation, 6 months of Immunotherapy including at home meds cycling 2 weeks on 2 weeks off of Retinoic Acid (Accutane/Isotretinon) spanning almost 18months, her final round is upon us. And with that, comes planning for her end of treatment scans and bone marrow biopsy to confirm that she is clear of any disease. Those same scans and biopsy will most likely be the same scans to initiate her start of Sloan Kettering Memorial's stage 2 clinical trial for a Neuroblastoma Vaccine.
So what is this Vaccine about? Many have asked. First, the medication she is currently taking every 2 weeks for the past 6 months is a Retinoic Acid called Isotretinon (brand name Accutane) and its goal is interesting. Unlike Chemotherapy, which aims to kill cancer cells but also kills healthy tissue as collateral damage, this medication aims at helping these Neuroblastoma cancer cells grow up so that they don't remain these immature neuroblasts that grow and proliferate uncontrolled, crowding out healthy cells and ultimately spreading throughout the body. Immunotherapy's aim is to destroy only cancer cells and avoid the toxicity associated with chemo. This Retinoic Acid medication compliments the Immunotherapy Charlotte received inpatient. The hope is, any hidden Neuroblastoma not "mopped up" by Immunotherapy can be altered genetically by this Retinoid so that it essentially grows up and becomes what it was intended to be instead of turning cancerous. This is one mode or pathway by which some Neuroblastoma patients relapse. How can kids remain cancer free for months and then years only to have it return? This could be one reason...simply that there are still pockets of neuroblasts that aren't cancerous yet but they don't have the correct mechanisms coded for to mature into healthy cells. This is where this new Vaccine comes in. The thought here is to provide long term coverage against any neuroblasts that try to proliferate. Unlike the current immunotherapy Charlotte has been getting for the last 6 months, which only works during treatment but provides no long term memory for her immune system to engage, this vaccine is intended to manipulate the patients immune system response to kill cells that possess 2 cell surface marker receptors (GD2/GD3 receptor proteins). If cells that have these on their surface start to grow, her immune system will mount an attack and kill them instantly. She can be walking around, living life, and her body is invisibly fighting this monster. The idea is for this vaccine to help prolong remission and ultimately increase survival rates for kids like Charlotte who have high risk Neuroblastoma.
Does it work? We do not know. It has been undergoing experimental trial for 6 years now and finished the phase 1 safety trial. Phase 2 opened it up from relapse patients only to kids like (hopefully) Charlotte who achieve remission after standard treatment. Although we don't know if this will improve relapse/survival rates, we are confident it can't hurt to try. This vaccine is a series of 7 shots given at SMK over a full year. It is low toxicity with relatively no side effects or complications. If there is a chance this could do what it claims...we just have to give it a try. We want to feel like we did everything within reason to give our girl a chance. And Brian and I have decided after lots of praying and consideration, that this is necessary. So that's it. Once we get this ball rolling, we won't look back. There is no room to doubt or second guess ourselves once a decision has been made and executed. The logistics of it all will play out in time just as things always seem to. In fact, her first series of the vaccine, should all scan results go as we pray, would begin end of September and last over 3 weeks where she will get 1 shot each week for 3 weeks. We plan to take a fun family trip up for her first week of scans and the vaccine. Then I'll remain with Charlotte for her second. Sloan wants us to remain close by for the first set of 2 and then we can come back home and probably fly up and back in a day for her 3rd installation of this vaccine. The remaining 4 are spread out over the year.
I know this is a lot of information. Many have asked and so I figured I should try to explain it as matter of factly as I can. There is more. Much more. But I don't want anyone's head to explode with overload 😆. The day Sloan called to finally schedule Charlotte, and she also just opened a letter addressed to her from her new preschool teacher who was introducing herself, a rain storm appeared and all the kids wanted to run outside and play in it. So they did. Charlotte rode her scooter in the driveway singing while her brother and sister played and rode along with her, Brian and I sitting on the trunk of our car in the dry garage watching. And shortly after this call and while they were playing in this rain storm, a big beautiful rainbow appeared from our back yard (pictured below). It felt like God's blessing as we make these decisions. So we will keep following the rainbows and our hopes and dreams and faith. We do not know what lies ahead. None of us do. I believe God gives us acorns but he doesn't necessarily open them for us. Instead, he gives us the tools to do so ourselves. But we have to believe and trust. God, trust is so so hard. But we are trying...
So what is this Vaccine about? Many have asked. First, the medication she is currently taking every 2 weeks for the past 6 months is a Retinoic Acid called Isotretinon (brand name Accutane) and its goal is interesting. Unlike Chemotherapy, which aims to kill cancer cells but also kills healthy tissue as collateral damage, this medication aims at helping these Neuroblastoma cancer cells grow up so that they don't remain these immature neuroblasts that grow and proliferate uncontrolled, crowding out healthy cells and ultimately spreading throughout the body. Immunotherapy's aim is to destroy only cancer cells and avoid the toxicity associated with chemo. This Retinoic Acid medication compliments the Immunotherapy Charlotte received inpatient. The hope is, any hidden Neuroblastoma not "mopped up" by Immunotherapy can be altered genetically by this Retinoid so that it essentially grows up and becomes what it was intended to be instead of turning cancerous. This is one mode or pathway by which some Neuroblastoma patients relapse. How can kids remain cancer free for months and then years only to have it return? This could be one reason...simply that there are still pockets of neuroblasts that aren't cancerous yet but they don't have the correct mechanisms coded for to mature into healthy cells. This is where this new Vaccine comes in. The thought here is to provide long term coverage against any neuroblasts that try to proliferate. Unlike the current immunotherapy Charlotte has been getting for the last 6 months, which only works during treatment but provides no long term memory for her immune system to engage, this vaccine is intended to manipulate the patients immune system response to kill cells that possess 2 cell surface marker receptors (GD2/GD3 receptor proteins). If cells that have these on their surface start to grow, her immune system will mount an attack and kill them instantly. She can be walking around, living life, and her body is invisibly fighting this monster. The idea is for this vaccine to help prolong remission and ultimately increase survival rates for kids like Charlotte who have high risk Neuroblastoma.
Does it work? We do not know. It has been undergoing experimental trial for 6 years now and finished the phase 1 safety trial. Phase 2 opened it up from relapse patients only to kids like (hopefully) Charlotte who achieve remission after standard treatment. Although we don't know if this will improve relapse/survival rates, we are confident it can't hurt to try. This vaccine is a series of 7 shots given at SMK over a full year. It is low toxicity with relatively no side effects or complications. If there is a chance this could do what it claims...we just have to give it a try. We want to feel like we did everything within reason to give our girl a chance. And Brian and I have decided after lots of praying and consideration, that this is necessary. So that's it. Once we get this ball rolling, we won't look back. There is no room to doubt or second guess ourselves once a decision has been made and executed. The logistics of it all will play out in time just as things always seem to. In fact, her first series of the vaccine, should all scan results go as we pray, would begin end of September and last over 3 weeks where she will get 1 shot each week for 3 weeks. We plan to take a fun family trip up for her first week of scans and the vaccine. Then I'll remain with Charlotte for her second. Sloan wants us to remain close by for the first set of 2 and then we can come back home and probably fly up and back in a day for her 3rd installation of this vaccine. The remaining 4 are spread out over the year.
I know this is a lot of information. Many have asked and so I figured I should try to explain it as matter of factly as I can. There is more. Much more. But I don't want anyone's head to explode with overload 😆. The day Sloan called to finally schedule Charlotte, and she also just opened a letter addressed to her from her new preschool teacher who was introducing herself, a rain storm appeared and all the kids wanted to run outside and play in it. So they did. Charlotte rode her scooter in the driveway singing while her brother and sister played and rode along with her, Brian and I sitting on the trunk of our car in the dry garage watching. And shortly after this call and while they were playing in this rain storm, a big beautiful rainbow appeared from our back yard (pictured below). It felt like God's blessing as we make these decisions. So we will keep following the rainbows and our hopes and dreams and faith. We do not know what lies ahead. None of us do. I believe God gives us acorns but he doesn't necessarily open them for us. Instead, he gives us the tools to do so ourselves. But we have to believe and trust. God, trust is so so hard. But we are trying...
Our fish wants to swim every day
This morning after Charlotte took her medication that kicks off her final round of treatment, we went swimming and saw lots of rainbow ripples
Evolution of our morning jog: Guess she doesn't care to ride the jogging stroller on our morning jogs anymore 🙈
The rainbow that appeared that rainy day in our yard after SKM called and she got a letter from her new preschool teacher❤️
The rainbow that appeared after SMK called to schedule and the day of her preschool letter ❤️
Charlotte had her fist dental appointment since diagnosis and she braved it like a champ
Champ
Kids like Charlotte often have dental issues as long term side effects but today we celebrate a healthy dental check up
Our traditional stop at Hemlock Bluffs next door to the dentist
A girl and her lovie
Building with Parker
"Mom I don't like sauerkraut. That's how God made me. When I was a baby sleeping. And I was camouflaged" Talks with Charlotte😂
The Harms boys and "Aunt Tilly" as Charlotte calls my friend Kelly came to visit. Charlotte adores these boys. And we saw a special rainbow on a day with no rain and we played in a field shooting bottle rockets❤️🌈
Some more special rainbows sent from you guys
"The eclipse shows how Science illuminates God's work" Greg Fischel
Sent today during a cloudy solar eclipse in MD and VA
Another solar eclipse rainbow today
After the solar eclipse sent from SC
Another SC rainbow after the eclipse today
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