I’m writing this post in the recovery room of Boston Children’s Hospital. Hattie is snoozing after getting a new portacath inserted and receiving an exam under anesthesia (that’s an EUA in our new medical second language).
Hattie was admitted into the hospital last week after spiking a fever with low white blood counts. The fever was eventually linked to a bacterial infection in her port. This was the second port infection in the space of a month so she had surgery to remove the port last Monday. The new port was placed on the other side of her chest this time. Our girl will definitely have some badass scars!
The EUA was performed as a follow-up to the 15 days of brachytherapy radiation Hattie received in December. Our surgeon performs these exams roughly every month to monitor the progression of her tumor sites and to prevent side effects of radiation, like stenosis. All looks good except for a new mass on her cervix. This could be a side effect of radiation or it could be a rhabdomyoblast, which could mean a radical hysterectomy. We have one brutal month to wait until the next exam before determining the next course of action.
There’s no rest for the weary – right after Hattie wakes up it’s over the bridge to the Dana-Farber Jimmy Fund Clinic to get her brand new port accessed and pick up a bag of fluids and pump for overnight hydration in preparation for chemo tomorrow. Hattie’s such a tough kid and I fully expect her to be running around like a maniac this afternoon.
I wanted to start this blog to share our story and how we’re coping with everything. Expect to see lots of posts on cancer treatment, efforts to get fit (and resist gooey cheese), tons of photos and photography nerdery and discussions of faith. Looking forward to sharing this roller coaster journey.
All the best,