Charlotte leads on
I signed consent forms yesterday and it is official. Bone marrow biopsies returned negative and all lab work checked out. Charlotte is enrolled on the Hu3F8 with GM-CSF for relapsed Neuroblastoma phase I/II clinical trial up here at MSKcc. We began the GMCSF injections today (which will rev up her white blood cells for battle. she has actually received GMCSF during frontline immunotherapy so our hope is for future rounds we will get insurance approval for this portion to be shipped to our home and we can administer this med there which will reduce our time here in NYC. The 3F8 infusions will begin here in clinic on Monday 9/30).
Half of my heart celebrates this answered prayer of clear scans and bone marrows and being able to access the medical miracles right here in our own amazing country. The other half of my heart cannot believe we are here, enrolled in a clinical trial, on the other side of the coin so to speak where this cancer has returned. My stomach in knots after going over everything yesterday with the lead doctor, understanding the difficult short term side effects we just signed her up for. Feeling powerless to stop it, as much as hopeful that all of this short term WILL lead her to the long term. I left the appointment today feeling both confident in our decisions as well as terrified. Joy and pain once again. Meanwhile, Charlotte just happily grabs a balloon from the playroom and skips along her way, me following behind, as if to say “I got this mom and dad.” Lead on baby girl. Lead on ❤️🌈
#charlottestrong #charlotterocks
Half of my heart celebrates this answered prayer of clear scans and bone marrows and being able to access the medical miracles right here in our own amazing country. The other half of my heart cannot believe we are here, enrolled in a clinical trial, on the other side of the coin so to speak where this cancer has returned. My stomach in knots after going over everything yesterday with the lead doctor, understanding the difficult short term side effects we just signed her up for. Feeling powerless to stop it, as much as hopeful that all of this short term WILL lead her to the long term. I left the appointment today feeling both confident in our decisions as well as terrified. Joy and pain once again. Meanwhile, Charlotte just happily grabs a balloon from the playroom and skips along her way, me following behind, as if to say “I got this mom and dad.” Lead on baby girl. Lead on ❤️🌈
#charlottestrong #charlotterocks
Last night, there was a very special program here at the RMH. It was called Songs in the Key of Me, produced by a non profit, Broadway Inspirational Voices (BIV). I am still a puddle of emotions over this. I’m still in awe of what I was in the presence of (because I am a HUGE music lover and the entire evening was so moving.) Real broadway and theater composers worked with 6 different children to create a song from each child. Then real broadway singers performed them for us. It was so incredible! And, as if I didn’t cry enough listening to these songs and watching these children hear them performed for the first time, BVI composed an original song for all of us families at the RMH. I would love to share this song with you all (video below). Needless to say, this is truly a special place here. We feel so much love and support. And with all of you and all of this support around us, we do not feel alone.
Photo Booth fun at the event here at RMH. C and I are a GIF!
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