ANC Zero

Since Wednesday’s end of steroids (for now), Wes has been feeling great. His energy has been high, his spirits great, and his appetite ravenous. We had a good few days, looking forward to this Wednesday’s continuation of treatment for the second half of Delayed Intensification.

Sunday was a pretty normal weekend day – we went to Strawberry Festival, took care of some essential shopping and other errands, and then came home for a quiet afternoon and the season finale of Game of Thrones. Early in the evening Wes spent an hour in the bath, and he was in a top mood – giggling and energetic, not a care in the world – and then as the sun fell he was happily growing sleepy and ready for bed. He went down easily and comfortably.

Stephanie and I had an easy meal of reheated leftovers courtesy of a care package, and settled in for the last episode of Game of Thrones – no spoilers here. Once it was over Stephanie went upstairs to bed with Ruth and I stayed behind as usual. A short while later she hollered to me for the thermometer, which I ran right up.

Wes indeed felt warm to the touch, and at first check registered around 100.4F – high enough to be on alert, but not high enough to take action. Still, there was no good reason for the temperature – he hadn’t had chemo in days, or really anything else but his weekly antibiotic, which he’s never shown a reaction to. He’s been struggling with terrible, painful constipation, but beyond that seemed healthy under the circumstances. Three readings of 100.3 or higher, 2 hours apart, within 24 hours – or a single reading 101.3F or higher – is cause to checkin with our the on-call oncology nurse and almost certain to result in an hospital visit, so we were immediately on alert.

I went downstairs and tried to relax, figuring we had another 4 hours, but after a short time I got antsy and started preparing to leave, just in case. Being late at night on a Sunday, if we were going to leave it’d have to be for the ER in Philadelphia, so I checked my go-bags and prepped a pot of coffee and a thermos.

As I was making coffee, at about 11pm, I heard Stephanie call down again – I didn’t hear quite what she said, but the tone was clear. I ran upstairs again, and she was starting to get ready, alerting me he had just registered 103F – a certain emergency trip. She called oncology to review his symptoms, who promised to call right back with a determination from the doctor, but we knew what the answer would be. I brought him downstairs and got him dressed as we finished getting loaded up. The nurse still hadn’t called back 10 minutes later but there was no reason to wait. We gave Wes a dose of Ativan as it was certain to be a stressful and upsetting trip.

Thankfully at 11:30PM in rural PA there’s not much traffic into Philadelphia, so we made great time. While in the car Stephanie called the nurse back and told him that we were coming in and to please prepare the ER for our arrival. Even in the best of circumstances Wes’ condition makes the ER, mostly sick kids at that hour, a minefield of infectious diseases, so having them ready for us means we spend mere moments at most in the waiting area.

Wes was expectedly distraught as soon as he recognized the route we were on – there’s only one reason to go into the city, really, so the cries of “no owies” and “please, go home” started halfway there, in spite of the powerful anti-anxiety drug we had given him. We arrived at half-past midnight, and headed up.

Once checked in we were taken right away into an isolation room for checkup. We know the drill by now – an onco patient presenting with a fever means powerful antibiotic and drawing blood for labs, so his port was accessed and he was put on an IV. His temp had come down a little, but was still far too high – over 102 – and given his panic, his BP and HR were both very high. We did our best to calm him down, but it took more than two hours before he had mostly settled in, curling up in his stroller seat watching a movie and only infrequently begging to go home.

We were well attended all night, but labs and two different antibiotics take time. When his CBC labs finally came back it told us exactly what would come next. His absolute neutrophil count (ANC) was zero – effectively meaning he had virtually no capacity to fight infections – while most of his other numbers were surprisingly good. While there was no immediate sign of infection, he was too neutropenic to go home safely, so they began preparing to admit him to a room upstairs, in the oncology department we’ve spent so much time in.

Sometime around 3pm we finally went upstairs to a private room, in Three South (one of the two pediatric oncology wings). Wes was exhausted, so slept through the transfer. I ran down to the car to grab the various bits Stephanie would need for the night – a travel bassinet for Ruth, her go-bag and mine, spare blankets and clothes and more.

When I came back up, a resident was checking Wes out – he was happy with Wes’ overall condition, all except the fever. His initial assessment is that he’d expect to see Wes’ ANCs come back quickly and the fever come down, but that we should expect this to be a few days stay at least. From past experience, he can’t even think about going home until his ANCs come up above 200, and depending on the exact protocol maybe higher.

Wes was exhausted and only awoke for a few moments as we got the room setup. Near 4am I said goodbye. We had left the house ready for an overnight, but not an extended stay. There’s not much I can do there but take up precious space, and Stephanie was intent on staying with him, so I’m staying home with the animals and will run another load of supplies back today. It’s painfully hard to leave them.

Just hours before this all began, we were all happy and relaxed and blissfully pretending all is normal, but this is just another painful reminder of how quickly things can change.