A Rocky Return Home, And The Next Phase Begins
Since our last update, there have been a few new developments in Bea’s health as we enter the next phase of treatment.
Shortly after discharge, Bea had what appeared to be a seizure at home, which was pretty scary. She started slurring her words, not making sense, and stopped moving her left arm and leg. We rushed her to the ER at Northern Westchester where they did an emergency CT. The scan didn’t show anything obviously alarming in terms of pressure or shunt malfunction, so they cleared us to transfer to NYU. We took another ambulance ride, and after being admitted we went down for a T2 MRI. While I was in the machine with her, she had another episode. The tech called a code stroke, so a ton of people rushed in. They gave her medicine to stop the seizure, and thankfully she was no worse for wear.
After monitoring her on an EEG for 2 days (which she hated), they didn’t see any more seizure activity. But her team believes the events were consistent with focal seizures related to prior surgery and treatment effects. She was started on anti-seizure medication, and we were discharged again.
We were able to spend a few days at home over Christmas — it was short and low-key, but really meaningful to be together outside the hospital. Bea loved spending time with Reid and the doggies, and had a couple really fun playdates with her cousin Addie. It was so good to see her get her spark back.
Yesterday, Bea was readmitted to begin Cycle 3, which is the first of three high-dose chemotherapy rounds. The treatment is so intense that it requires a stem cell “rescue,” where she’ll receive an infusion of her own stem cells that were collected back in November.
She will have 2 days of chemo infusions (carboplatin and thiotepa), followed by 2 days of rest and then the stem cell transplant on the 30th.
As of now, Bea is stable and begrudgingly settling back into hospital life. Our focus is on symptom management, supporting her through this cycle, and taking things one day at a time.
Best case scenario, barring any (more) complications, we’ll likely be here about 3 weeks.
Thank you, as always, for continuing to hold Bea and our family in your thoughts.
With love,
Shannon and Brooks