Treatment Update

Sadly, life isn't all jump shots & TV appearances over here. Wheels were set in motion shortly before Charlotte's Make-a-Wish on the next regimen, which we began last week on September 8th.

Before our epic day with the Seattle Storm, Charlotte had a CT scan to check in on the status of her lungs to determine timing for the next step in treatment. We always knew the plan was to begin a new chemo after the summer, but it was still hard to get confirmation that the nodules in her lungs had been growing during our time off. We had been hoping for Charlotte to attend at least two weeks of school before moving forward, but the results made it clear it was important to start sooner rather than later.

At that appointment, we also shared with Kristin that Charlotte had been experiencing a lot more discomfort in her right leg. She would wake in the night needing pain medication, she would hobble around the house, and eventually we went back to using crutches full time. Kristin ordered an x-ray which showed an additional site of concern in her right leg, just below the prosthetic. It has been hard not to second guess ourselves - should we have amputated last summer or gone with rotationplasty? Would either of those options have changed where we are today? Most likely not, as the disease had already spread to her left leg and her lungs, but very easy to wonder about what ifs.

We don't have all of the details or an appointment scheduled, but we are planning on doing cryoablation on the site below Charlotte's prosthetic. Since she has already done traditional radiation near there, that is no longer an option as it can cause more harm and make the bone weaker. Cryoablation will take place at SCH and is thankfully an out-patient procedure.

In addition to the cryoablation, we are now a week into our third chemotherapy regimen: cabozantinib. It is an oral medication that we administer at home - no sleeping in the hospital! While that is a win, it does come with more frequent visits to SCH for lab checks and a whole litany of potential side effects: nausea, fatigue, GI distress, skin irritation/rashes, hypertension, appetite changes, etc. There is also the added pressure of everything falling on us at home. It is exhausting being caregivers.

So far, fatigue and loss of appetite are what have hit the hardest. Charlotte has been attempting to go to school in-person, but is also listening to her body and her attendance is sporadic. She's probably attended more school in the past few weeks than she did all of last year - homegirl is tired!

We're doing our best. Certainly much more exhaustion and probably the same amount of worry, but we'll keep forging ahead. We appreciate everyone who continues to check in and visit this little corner of the internet!