The end of hibernation
Hi village. I’ve really missed writing about our amazing Charlotte and her journey, but at the same time, I felt like I needed a break. But now, here we are again, in the place we prayed we would be again. And it’s terrifying.
In just a few weeks, Charlotte could potentially have her FINAL dose of cancer treatment EVER. One would think this a great celebration. A great sigh of relief. She made it! She beat it back and remains clear of disease, the treatment working. She is finishing a promising trial for maintenance. She is here and she is thriving! Celebration time! And yet, we are terrified and feel somewhat frozen instead.
Brian and I feel strongly that further maintenance therapy is needed especially in children like Charlotte who’s cancer returned after all of that intense treatment. Neuroblastoma has a large window of 3-5 years after treatment has ended for monitoring for reoccurrence. Charlotte relapsed at the 21 month mark. This month, right now, we are at 12 months since finishing treatment again. The year long trial coming to an end. Our options for continued maintenance within the relapse window are few but we are not resting until we know for sure we have no clear and reasonable choices left. Which means...Brian and I are needing to step up to Charlotte’s plate for her once again and be her voice to advocate with those who can help us help save her. Momma and Poppa bear coming out of hibernation
I have learned that a new Neuroblastoma vaccine trial will open this year recruiting first time vaccine patients. This trial will employ an additional medication to elicit a hopefully every stronger immune response AND extend the vaccine shots into a second year if not longer. Our first thought: “we want Charlotte to get additional shots in this second year too, maybe even longer. But how? Certainly the drs at MSK would want children like our Charlotte to receive the therapeutic benefit they believe will come along with this study? How can we partner with them to include Charlotte somehow?” And of course, our amazing village has helped answer.
A special acquaintance heard about my worries through a friend (our amazing village runs deep!!) and reached out to help me navigate our understandings of what is possible. He is in the drug development field and used words like “right to try” and “open label extension studies.” and “advocacy community”. I listened over the phone, taking notes. I thanked him deeply and then did some research myself. I reached out to the amazing Band of Parents regarding trial funding and sponsoring grants. I emailed 2 of our team members at MSK regarding an extension study. I registered to attend a virtual meeting where MSK discussed trials and research options. I reached out to our village of other cancer warrior parents through a support group I’m a member of to ask them for support both verbally with the MSK team and if it came down to it, financially by helping to sponsor a grant for money designated for these children who would not otherwise get additional vaccination shots into this next year. We are learning, navigating, hoping. We believe in this necessity and do not know what is possible but you can’t get what you want until you either A) ask or B) work your ass off to make it happen. So we are doing both.
Meanwhile, this exact time of year is very hard for me personally. The memories that return from Feb-March 2016 are just plain painful. She just started feeling awful and we didn’t know it then, but her cancer journey was just beginning. I will start to take her to her pediatrician every week for just over a month after this memory. She had never had ear infections or any illnesses that required medication until now. Her first antibiotic at 2 for an ear infection that brewed further into a double ear infection. Her body showing inflammation yet how could we know what was happening inside her little body. Soon, her lethargy and extreme fatigue would be all encompassing. Her little belly would start hurting and she would complain of belly pain and constipation. Her belly would even start to look distended due to the large tumor. Her skin would become pale as her cancer grew into her bone marrow surprising red blood cell production. She would sleep a lot and want me to carry her. I would keep going every week for our pediatrician to monitor what she thought was some virus or temporary childhood condition. To this day the word Miralax is a trigger for me. We would change her diet to see if that helped and she would have labs drawn from finger pricks to watch her hemoglobin, and pump Miralax and extra fluids into her. And the doctor even came in to the room one day to tell me “good news! It’s not leukemia!” when her labs returned with a normal WBC count. And I would catch my breath at that remark because I never once was thinking it was cancer. And I would feel relieved that this is not the case. But after a month, things would not improve. We were called to Duke. She would be admitted. The next day the CT technician would have tears in his eyes and look away...and Brian would catch that but he would not tell me what he saw, sparing me a little longer, harboring the worry on his own shoulders. Soon we would see what was growing and trying to take her away. Soon we would learn she had Stage IV Neuroblastoma and would be considered something called high risk. Soon we would learn she had a 50/50 chance of surviving. And for many many many months...we would always recall these early days and wonder how we got here and how this could happen in our heathy sweet baby girl without us knowing. Cancer can sneak and steal and take and take but it doesn’t always win. And for us, cancer also gave. It gave us a new life, a new outlook, a new purpose, a new faith, a new village of people, a new perspective, and new gifts to share❤️🌈
Thank you for sticking by us, praying with us while we make decisions and also hold our breaths for her end of treatment scans and bone marrow biopsies that will be here in a couple weeks (more on all of that soon). We are not special or extraordinary. We are just parents over here trying to put one foot in front of the other some days, stay afloat and paddling like crazy though resting when it’s calm and enjoying any moments of peace. We are just 2 people who like you, love our children and want to know that at the end of the day, we gave it our all. And by “it”, I mean each other and whatever the work God is calling us to do while we get to be here. And right now, that work is to do everything we can so Charlotte can be here too. Keep praying and believing and cheering village❤️🌈We are so grateful. #charlottestrong
(I promise to post more pictures and video and lots more news about Charlotte very soon. She has all kind of new and amazing things I can share with all of you who love and care so much. For now one recent picture of her growing up so fast and so beautifully with her best buddy Parker)
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