CAR T Day +5: Fever watch

Fever update: Man, watching a fever rise/fall/hold is something I will NOT miss about this circus. Of all the stresses of cancer, the waiting for symptoms to progress is a real drain. It feels like an extended fight or flight response.

Yesterday afternoon it was clear Beaudin’s symptoms were increasing. By early evening he was curled up in bed with his forehead in the palm of his hands to relieve the pressure from his headache. He was also fevering, though it was riding right below the threshold for automatic hospital admission. Around 8pm, I decided to call the on-call oncology fellow to chat through things before it was a middle of the night decision making situation. As always, I was left wanting more out of the situation. Because frankly wouldn’t it be nice if she had a crystal ball and could just tell me exactly what was happening, what to expect, and word for word what I should do? Yes, exactly.

Instead, she spoke in general sweeping strokes and said phrases like, “Err on the side of caution,” which always makes the hair on the back of my neck stand-up. Our conversation went something like this: she said, “If you bring him in at 9:30pm, we will pull labs, dose him with antibiotics and then wait for his lab results to see if his ANC is high enough to rule out bacterial infection.” The layman explanation of this is that if you have a central line (for Beau: a port) and show-up with a fever, the hospital has to operate as though you have a bacterial infection and an ANC below 500. As such, they dose you with broad spectrum antibiotics and then wait to see if the blood cultures show infection (this takes 24-48 hours) and if your ANC is above 500 and thus high enough to battle the infection itself. Getting back the ANC can take 15-30 minutes, but, as central line infections can be very serious, the moment you are admitted they dose the antibiotics.

I asked, “Ok…so… how long do labs take?”

“15 minutes.”

“Ok, given he just got CarT and is in the perfect window to react and is having all CarT reaction symptoms, could we wait those 15 minutes and see where his ANC is at before going ahead with the antibiotics that he very likely doesn’t need?”

Her reply, “Well, no, we have to err on the side of caution.”

“What if we err on the side of logic? Or how about this, what if I bring him in at 9:00pm and we wait for labs to get back? It’d be a full 30 minutes before you were going to see him and then we could assess his ANC before dosing him with an antibiotic that we are both rather sure he does not need.”

“Sorry, ma’am, but that’s outside our protocol.”

” But you are comfortable not to see him until 9:30pm… Can I bring him in now and we can just check in ANC.”

“No, we have to assume it’s bacterial.”

“But we both know it’s from the CarT?”

“Well, we can’t be sure.”

We also can’t be sure the he even needs the damn antibiotics. Though it is proven that the broad spectrum antibiotics will completely annihilate his gut flora. I also knew that taking him in would mean Tylenol and Tylenol means glutathione depletion which is again, “worth the risk” for them, and not for me. And a hospital stay would mean little sleep for Beau, and we can all agree that regenerative sleep is the most straightforward healing modality.

This is the mental gymnastic of pediatric cancer. Holding both that your child is receiving exceptional care, AND that they are being treated like a cog in a machine where they machine errs on the side of caution because of the litigious nature of our society.

Agh.

We agreed that I would take his temp again at 9:30pm and if it was above 100.3deg I would bring him in. I went back to the bedroom to prep Beaudin for a possible hospital stay. He was not thrilled and began crying. I took off his socks which were drenched in sweat and laid a cool, wet wash cloth across his forehead. He was in a significant amount of pain and so I decided to go ahead and give him a dose of the oxycodone we had on -hand for “pain related to the CarT reaction”. This was of course after speed googling to make sure the oxy would not suppress the fever (a big no-no as you wait and watch a fever as you don’t want any meds masking the true expression) which I assumed it wouldn’t because why else would they give it to me? Sometimes I think it’d be funny to post my search history after a night like this. The things I ask google to clarify are entertaining in the light of day.

I began packing a bag for the hospital. A change of clothes, pajamas, slippers, toothbrush. I remembered back to 2019 when we accidentally landed in-patient and I had nothing that I needed. Gah, this has been a long road. Then I stood at the bathroom mirror and started role playing the conversation in which I would request we hold the antibiotics until we saw his ANC. “So, then will you deny him care if I decline them?” “Ok, report me to the ethics committee.” Naturally, taking things to the worst case scenario. Wishing that Josh was with me to tow this line.

I set my alarm for 9:30pm and laid down next to Beau. I felt dread. I didn’t want to be here making these decisions. What if I kept him home and he needed to be in hospital? What if I took him in and he could have been kept home, avoiding the slew on medications they’d give him prophylactically and the environment that was anything but restful? My chest felt tight. I hate this. I took a couple of intentional slow, deep breaths and reminded myself that I was the perfect mom for Beau in this moment.

‘Ok’, I thought to myself, ‘I am just going with exactly what the thermometer reads. If at 9:30pm it’s a drop above 100.3, we are going in.”

This seems obvious, but for anyone who has ever been on fever-watch with an at-home thermometer you know how relative the readings are. In 10 seconds, one reading is 99.4deg, then another is 100.7deg, and yet another 99.8deg. And knowing that this kind of a decision could be smudged by user error is not encouraging.

‘Just let the reading be clear.” I spoke into the dark room.

At 9:30pm I took his temperature 5 times and could not register anything above 99.8deg. 99.4, 99.7, 99.8. Phew!

I called the on-call fellow and we decided that I would take it again in a couple hours and so-long as it was below 100.3, we’d call it a night. I let her know that I had given him the oxy dose and she said that was fine, just to make sure he was “able to be roused and coherent.”

Hmmm, well, he was asleep.

I got off the phone and went to check his cognition. He was sleeping for the first time after a nice dose of pain relief and his fever on the decline. I slowly shook him awake, “Beau, if you don’t want to go to the hospital I need you to prove your brain is working.”

“Moooom! staaaaaahp!”

“Beau, the doctors have to know your brain is working ok, I know you are tired, come on bubba,” I pulled him to sitting-up, “Beau, where are we?”

“Philly,” he mouthed.

“Ok, who is visiting us?”

“Meemaw,” he slurred. It wasn’t super convincing and I was mostly sure it was just his exhaustion, but was I missing cognitive decline. Was I so concerned about avoiding hospitalization that I’d overlook something?

“Beau, what’s our address at home?”

“2..1..1..9 Mallard… I think? I mean, mom that’s a really hard questions because I am not even sure I would know that without CarT, but I think it’s 2119. Because that sounds right, ok, is that right Mom? And just stop asking me questions I don’t even know,” then he laughed at his reply. “I guess my brain works.” I smiled and let him lay back down to sleep off the rest.

This morning Beaudin is feeling better. His headache is much better, but not completely resolved. His temperature is back to normal. He asked for breakfast which is a big deal after not having eaten in 24 hours. Thankfully with Meemaw here visiting, we both got a full breakfast handed straight to us and can now just lay on the couch and chill, and recover from the roller coaster that is cancer.

We have a check-up tomorrow morning so as long as things remain stable, we will continue resting here.