HuCART Day +5: Hospital overnight and confusion.

The morning after posting the last update we took Beaudin to the ER with a fever and severe headache. The fever had been brewing through the night and finally, come morning, shot up at 101.9 F requiring an immediate trip to the ER. Because of the fever, low counts, and a recent CarT infusion, overnight observation was warranted. Aside from the most likely cause of the fever being the CarT infusion, for anyone with a central line/port a fever has to be treated as a possible central line infection. As such, broad spectrum antibiotics are administered immediately upon admission and blood samples are sent off to culture-checking for bacteria. After a casual 9 hour wait in the ER due to overcrowding from RSV cases, Joshua and Beaudin were able to procure an in-patient room on the Leukemia floor.

Being in-patient is helpful because we are able to use pain management meds that we cannot use at home, specifically Tylenol. As mentioned above, because we have to approach ever fever as a potential line infection, we cannot administer Tylenol at home because it may mask a fever. We need to know if Beau has an increasing fever and act accordingly. That means that our only at-home pain meds are opioids. Which while effective, aren’t something we are eager to be popping. However, once in-patient, with blood cultures brewing, Beaudin can receive Tylenol. It helped to relieve his headache a bit, though not fully, and brought down his temperature.

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Normally, (what is normal…. when was the last normalllllll…..!?!?!) we do not dose Tylenol to our kids for a fever or pain. A fever is, again normally, the body’s way of responding to a problem. Often, heating up the body causes the pathogen to die off, and thus allowing the fever is always our preferred route. This is why we sauna: to mimic a fever. This increases the creations of heatshock proteins that are effective in killing off weak cells, and also increasing blood flow to all areas that may need more immune system activity. So our m.o. is to let the fever ride…. That is until it’s cancer and you allow the (really high)fever to ride for a week with the pediatrician promising you “it’s viral” when it’s very much not. Anyway, sorry, minor flashback. So anyhow, given the fever was not needed for creating heat shock proteins, but rather was a side-effect of t-cell expansion, we felt fine about dosing pain meds as needed to relieve discomfort.

Although the fever and headache resolved, Beau began to experience a significant amount of cognitive impairment. I am not sure exactly how it works. Some combination of the cells expanding at such a rate that inflammation is high, combined with possible cancer die off toxicity, but more or less the neurons are firing into no where. This was very, very (shall I emphasize very) scary for Joshua and I, and actually, as I type that out, I think it’d be better to say: it was very scary for all of us.

Once Joshua and Beau were settled in to their in-patient room, Jude, Selah and I FaceTimed them to check-in. It was clear immediately that things with Beaudin were not right. He was unable to communicate with me and spent most of the call staring at the screen. He looked deeply worried and completely empty at the same time. He looked many years younger. I would ask him questions and he would just stare at me. You could tell he was trying to process what I had said in some capacity, but there was nothing there. Jude and Selah eagerly engaged him to no avail. He became weepy and distressed. We ended the FaceTime video as it was clearly doing more harm than good.

That evening Jude and Selah both cried themselves to sleep. They both had different reasons, but it was clear that the call with Beaudin, and the fact dad and Beau weren’t coming home from the hospital, set them off. Sometimes it is hard to see how all of this effects our family, this time, it was clear as day. As Jude cried, “I just didn’t like that Beau didn’t recognize me.” and I affirmed, “Yeah, that felt really scary didn’t it,” I felt the weight of 956 days of cancer.

I spoke with Joshua that evening and it was apparent the day was wearing heavy on him as well. It’s a lot to hold, all the decisions that must be made, all the tension to manage, all the unknowns. But the hardest part is watching your son, who the day before was eagerly running around an apple orchard, now unable to communicate. The nurses assured him that they had “seen it before,” but gave no comfort to if or when he would return to normal. So Joshua laid in the hospital room and I laid in a rental in the city and we fell asleep wondering if we’d made the right choice for our son, or if this grand experiment had ruined him forever.

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Within 24 hours, Beaudin’s neurological symptoms began to slowly reside. Additionally, his blood cultures came back negative, proving there was no line infection, and his fever resolved so we were able to bring him home that evening. Upon arrival, he still was not at 100% cognitive function and the noise and energy of his siblings was very distressing for him. Joshua and I spent much of the next day trading off being with him (as he didn’t want to be alone) in a dark room. The combination of pain and confusion meant he couldn’t focus on anything- iPad, tv, book, etc., so one of us would just laid in bed with him while the other parent tried to keep 2 fully-active kids somewhat quiet. On the days when Beau felt somewhat better, he was still unable to play logic games like our new favorite, Qwirkle.

I took this photo on the evening that Beau finally got out of bed and sat upright. He wanted to play with me, but after about 10 minutes he resigned that he just couldn’t do it. He crawled back in to bed and whispered, “I just don’t know why it’s like this.”

“What, bubba?”

“Everything.”

Thankfully, within a couple days Beaudin’s cognitive function had seemingly made a full, on the surface, recovery. It’s hard to know what the long term effects of all of this will be. We are actually enrolled in a 15-year trial to study the long-term effects of CarT therapy on neurological development and function. I guess time will tell.

For now, we are thankful that our time in-patient was limited, that Beaudin’s suffering was mild, and that his cognitive function returned.

It’s hard to write about all this. I’ve been wondering why I haven’t updated, but as I put words to the last two weeks, now I know why.