Charlotte's Journey

It’s only mid May and Charlotte is in “bring it on summer” mode. Granted, we live in North Carolina so summer feels like it’s here. She’s been swimming in the lake near our home, swimming at the neighborhood pool, played on a backyard water slide, and had water blaster fights with no ending in sight. She is free and loving it! While her siblings begin swim team, she splashed in the pool right along side the other younger siblings instead of sitting under an umbrella eating snacks and watching, longing. Don’t get me wrong,  we were soooo incredibly grateful last summer to be there and so was she. But this year she’s not on the sidelines. “Me too Mommy?” Yes you too sweet girl. She is asking for swimming lessons too so we will start planning for that as well! Bring on summer!! As summer approaches, so do her June scans and assessments. It’s hard to look past those scans because life seems to hang in the balance of those results every 3 months and sadly dictates everything possible ...

For our second year in a row, we were blessed to be able to go to Duke PBMT’s Family Support Services Rainbow of Heroes Walk. It is such a special event where we celebrated and remembered and honored and thanked. Oh God we are so, so thankful. We saw some families and patients whom we shared time with while in the 5200 pediatric bone marrow transplant unit. As you might imagine, it can be quite emotional for all the reasons you might imagine. Some families didn’t have their little one there. They didn’t get better. These families come back to honor them and be surrounded by those who “get it”. And then there were other families like ours who were there all together, chasing their children as they made giant bubbles or bounced or climbed the rock wall or ate cotton candy and snow cones. These families, like ours, gave big smiles and hugs to the medical teams of doctors and nurses. I think the doctors and nurses need to see them too. See them out living and growing up. And somehow, we ar...

Charlotte had her 6th of 7 Neuroblastoma vaccine injections today as part of the clinical trial at MSK in NYC. “Her labs are perfect. After today, I suspect we will see you all back here in September. Plan to stay an extra day for Bone Marrows, and, also I’d like to schedule a long term survivorship clinic appointment for her during this next visit too .” I could have burst into tears right then and there. Instead, I smiled and nodded and took a big gulp, I think. I know this is no guarantee. None of this is a guarantee. We cannot know if Charlotte’s cancer is truly gone, not yet. We cannot know, not really know, that she will survive. But in the same breath as scheduling her LAST injection of this clinical trial, the Nurse Practitioner said the words “ survivorship ” in talking about Charlotte. This is the first time we’ve heard those words. They had weight to them.  We have scans at Duke in 6 weeks. If everything looks as we hope and pray it still does, then she will...