Stability

It's been quiet over here as of late. We are attempting to find some sort of routine: be it school for Charlotte, work for Connor, and who knows what for me. We wake up and take each day as it comes, which is not my preferred method of living, but we're doing it.

Charlotte's pain has been significantly better since the cryoablation procedure in September. Before that took place, she was on oxycodone around the clock to manage her discomfort. This also meant she wasn't eating and her weight was dropping. We were having panicked thoughts about needing an NG tube again! The effects of the procedure were phenomenal and seemingly immediate. Charlotte's appetite increased, which put the NG fears at bay, and, most importantly, she wasn't even requiring Tylenol for pain. It's a nice option to have in our back pocket should any extreme cases of pain arise in the future.

Charlotte still uses her crutches for walking even though we would call the procedure a success. Part of it, we think, is due to her fear of putting more weight on her right leg. Additionally, her right quad is so weak. We are slowly dipping our toes back into physical therapy to try and increase that strength. Admittedly, we took a long break. The appointments became a lot to manage, Charlotte was uncomfortable, we weren't with our favorite PT Chelsea... the list is endless. This isn't meant to be a "woe is us" message, but being a caregiver is really hard! We continue to navigate parent vs. caregiver roles and sometimes we just want to have fun with Charlotte as opposed to chauffeuring her to SCH multiple times a week. Ok, the pity party is over.

In addition to the cryoablation, Charlotte has continued to be on the oral chemo medication: cabozantanib. This is a pill she takes 5 days/week and thankfully, we've seen very little side effects. She had scans the first week of November and we recently learned that Dr. Brittany is "very reassured" with the results. It was truthfully the first time in a long time I felt relief with scan results. There has always been something else, even if they are mostly positive. We will forge ahead with the cabozantanib and are now on the schedule of monthly lab checks, with updated scans scheduled in January.

Despite her annoyance with regular medication and a visit to SCH every so often, Charlotte continues to find joy in her day-to-day. She loves getting to school when she's up for it, her long nails, lip gloss, snuggling with Clover, reading (duh), and cheering for Maura on "Dancing with the Stars." She is especially excited for the holidays and turning 12!

We'd be remiss to not express our gratitude for our Team Charlotte community. Be it funny memes, long walks, time away (NYC, CHS, Bandon Dunes), or raising almost $40K for solid tumor research (!!!)... we see and feel your support.