First days of chemo + life in the PICU

Since beginning her first round of chemotherapy, Bea has settled into a new rhythm here in the PICU (while Brooks and I slowly go crazy from 3 weeks of monitors beeping and a constant barrage of people in the room!).

Her treatment started with high-dose methotrexate and vincristine, followed by etoposide, cyclophosphamide, and cisplatin. Each medication brings its own side effects, and the team has been carefully monitoring her response around the clock. Bea has had days of nausea, headaches, and fatigue, and doesn’t have much of an appetite. She’s also continued to spike intermittent fevers, which prompted blood cultures, more antibiotics, and an MRI to make sure there were no signs of infection. That was maybe her 8th MRI in a little over a month, and we now have it down to a science. For the “fast” ones (10-15 minutes), she is not sedated, so I lay on top of her inside the machine and we listen to Taylor Swift so she doesn’t get nervous :)

Even with all of the machines and monitors (she is constantly hooked up with heart monitor stickers, pulse ox on her toe, blood pressure cuff on her leg, a picc line on her right arm and an IV on her left) Bea remains herself. She has stretches of silly energy, and we even made a fort in her bed the other night. She loves visits from Aunt Leslie, who has purchased every single unicorn and poop joke-related toy on Amazon.

My parents and Gretchen and Rob alternate weeks staying in the Rault and Yordan families’ beautiful apartments in the Upper East Side, which has been such a blessing. Brooks and I are able to sneak up there nearly every day to spend quality time with Reid (who is quickly adjusting to life as a city girl).

With love,

Shannon