Waiting for all the pre-chemo testing the day before: the most patient 2 year old I’ve ever met. Yay! The Thomas Ride-On Toy is available for check-out from the playroom! This was the Round I was dreading so much: Round-the-clock bathing to rinse this toxic chemo off her skin to prevent burns. Some local friends came through with bath chairs that made the process MUCH MUCH better than what the nurse suggested we do: “pour water on her while she lies in bed and then just change the sheets”. Can you imagine?! You’re so weak that you can’t sit up by yourself and someone wakes you at 2am, strips you down and pours water on you while you lie there helpless in what you thought was your safe cozy bed? Ugh!! She’s still not happy with the walk-in-shower “bath” but at least it’s quick and she can return to sleep in her bed without worry about a surprise dousing.It’s a shorter duration chemo with less miserable side-effects (minimal vomitting!). By the time she’s done, she’s feeling pretty good!
Diarrhea and vomitting and no appetite. Time to go back to UVA. I HATE it that every time she has a little fever after chemo (happens every time as a response to the toxic sludge), protocol states she MUST be flooded with antibiotics just in case she has a life-threatening infection. Which she never does. Nothing has ever grown in a culture taken when she spikes a low fever and they give her cefapime. We want to say no. You may not over-medicate our baby. But playing Russian Roulette like this is just too risky- what if she DOES have something horrible and no immune system to fight it? We have to say yes. And then she gets c-diff again. All of Sophie’s between-chemos hospitalizations have been because of the antibiotics given. Maybe even her failure-to-thrive hospitalization. I’m sure the antibiotics are rough on her already-sensitive GI tract and compromised its absorption abilities.
On a good note, Sophie got lots of sweet surprises during this stay:
She lost her lovey, Appley at the hospital last round. I couldn’t find a replacement on Amazon, Ebay, or Google Search. My friends sent out pleas to everyone they knew to look for this black kitty. It seemed all the world was looking for us, because one turned up in London(!) and another in a Barnes and Noble in CA! He was overnighted to Sophie and she bought the story that we cleaned Appley to make him softer for her! The reuniting was sweet:more Thomas things to cheer her up:
Then as her c-diff cleared she started to spike very high (105) fevers. They persisted for 5 days and she was in and out of the ICU. Diagnosis: fungal infection in the liver. Anne to the rescue with an awesome bubble party and smiles!Here she is finally feeling well enough to play again:
Custom-sewn eyepatches from friends in Charlotte!and just before she was discharged, another happy surprise: custom sneakers from our new friend Audra, who also has a kid with a brain tumor and started a number of amazing organizations to help other kids thrive when dealt the cancer hand. She contacted Peach’s Neet Feet on Sophie’s behalf, bought Sophie a pair of pink Converse, and an artist decorated her shoes in her favorite colors and with her favorite things: Thomas and cupcakes! 🙂