Never home for long
Last week’s hospitalization shook me. Because Wes seems healthy – all of his visible symptoms are related to treatment more than the underlying leukemia – it was easy to get comfortable after returning home from our first trip to CHOP. He has been in and out of the clinic several times a week but everything was going well and it was easy to feel like we were back in control.
Then he developed a minor fever – low enough that a healthy kid would never have cause to be concerned – which lead to an overnight stay for IV antibiotics, which quickly grew to an indefinite detention. The oncology team floated the idea of staying in-patient until induction was complete, which was scheduled for at least 11 days in the future. There’s not much to do with this information other than what the team asks of us – we’re not going to fight their best advice, but of course everyone wanted mom and Wes home as soon as they were able.
As the week progressed we began to cancel Thanksgiving plans and I assumed I’d be moving up to Philadelphia, or commuting, or some mix through the end of the month. Arrangements were made, backup plans to backup plans considered, while we waited for a key marker – his neutrophil counts (ANC) – to come back up so he could have some defense against minor infections. His was down to 40 when we brought him to CHOP on Sunday – normal range is 2500-6000 – and they wanted to see at least a 200 before considering discharging him.
When he hit 140 on Tuesday, a return home started to look possible, and early Wednesday morning he surprised us all turning in a 360. He had been in great spirits all week, eating lots, playing and charming everyone on the third floor, so they began to give us more definitive signs of discharge that afternoon, leaving plenty of time to get home and rejoin the holiday the next day.
I raced up to CHOP Wednesday afternoon and by the time I arrived the discharged was certain; we only needed to pack up, and to disconnect his port. It was an indescribable relief to see him and Stephanie in good shape and ready to come home with me.
We made a slight detour before departure, as he announced a demand for noodles in the elevator, so we spent an hour stuffing him for the car ride home – noodles, rice, two and a half chocolate cupcakes, about a pint of milk. He was ready, and so were we.
The next day was one of my favorite Thanksgivings ever. I have so much to be thankful for and just seeing him running around with the other kids was almost more normal than I could handle.
Friday we made plans to run errands – avoiding Black Friday was critical for all of us, but we needed groceries and getting out of the house is always good for the soul. After a slow morning and several rounds of breakfast for Wes, we headed for a favorite spot in Hopewell, with plans to go to Trader Joes in Princeton and then home, but before we left he started running another minor temperature – high enough, though, that if he registered it three times in 24 hours we needed to call the hospital again.
Naturally this cast a shadow over our morning, but all we could do was wait at least 2 hours to take another reading, so we continued as planned. At Brick Farm Market Wes was sniffly but in good spirits, and he devoured much of burger his mom had been dreaming about for days.
We finally made our way to Trader Joes, where we ran into a family who lives near us; we were invited to a three year olds birthday next week, which we had to decline and explained why; we talked for a half hour in the aisle and may have made another local friend.
When we left it had been long enough to take another temperature reading, and this time it was suspiciously low; it’s cold out and our thermometer seems to need some warm up, so we waited 20 minutes in the warm car and took another reading – plus ourselves for reference – and sure enough, he had no more fever. We could go home and relax and try for another day of relative normalcy tomorrow, knowing we’ll see the good folks at CHOP soon enough.
