Good Riddance to Cycle 2
Picking up from our last update, the weeks since have been heavier than we expected. This stretch has been about managing an onslaught of complications, recovering, and taking things one day at a time.
Cycle 2 has continued to pile on side effects. In addition to the pain, nausea, mucositis, and appetite loss (which led to a decision to supplement her nutrition via TPN), Bea developed abdominal ileus, likely from a combination of chemo (vincristine), pain meds, anesthesia, and limited mobility. She is experiencing significant abdominal pain, and this phase has been particularly difficult for her (and us) With support from gastroenterology, we’re hopeful it will resolve soon.
On top of the side effects, ongoing concerns about the skin over Bea’s shunt became more urgent due to infection risk, and she ended up needing additional neurosurgical intervention. The surgery went as planned, and imaging has since shown that her ventricles are stable and the shunt is functioning properly.
As of now, Bea is recovering from this latest surgery (her 5th), being closely monitored for infection, and gradually transitioning off IV pain medications and fluids. We’re finally starting to feel a cautious sense of stabilization after a very intense stretch, even if there’s still a lot of uncertainty day to day. If her ileus resolves and she’s able to start eating and drinking more, we may be discharged this week.
Some positive news, and snapshots of life in the hospital:
We had an MRI to set a baseline before we head into the high dose/stem cell rescue cycles. It was encouraging to see that there was no new growth, and in fact we saw some shrinkage of the tumors
our favorite child life specialist brought Bea a bowl of snow so she could play with it
A visit from the NY Ballet was a highlight
Cozy movie nights with twinkle lights and lots of cuddles
We’ve claimed a sitting area as Bea’s nook - on days she’s feeling up to it, it’s very fun to pack up a big backpack of toys and books and venture all the way across the 8th floor to the “nook” for some time out of our room
On the homefront, Reid continues to bring light into all of our days. She is all smiles and laughter, and she astounds us with how well she adapts to the world around her.
Thank you, as always, for continuing to hold Bea and our family in your thoughts.
With love,
Shannon and Brooks