CAR T Day +3: IVIG and waiting

Medical update:

Last week, Beaudin received 4 days of high dose chemotherapy to kill off his healthy B-cells in order to make room for his new T-cells. He was tired, but not overly so. His appetite diminished, but really, I don’t even know what his true appetite is. He craves sweets and I indulge him far more often than in the before times. He snacks all day and never wants a proper meal. Maybe some day we will get back to a baseline! I knew that his counts had dropped because half-way through the weekend he started craving fresh fruit. I recalled from Delayed Intensification, that when his counts are low, he craves fruit. I was right, his ANC dropped to 220. (A healthy immune system ANC is between 4,000-8,000, anything under 500 is too low to be in public- even a common cold could take him out.)

This low of an ANC is expected from the chemo last week. Though, it is unnerving knowing that your child has such a low immune system. We just have to stay vigilant with hand washing, staying out of public, etc. the ANC is an indicator of how strongly the bone marrow is pumping out new marrow so a low ANC often equates to low energy. Imagine being beat to a pulp, you don’t jump up ready to go at it the next day, it takes a while to get back in to fighting shape.

Monday, we had a neurology consult to establish a baseline for Beau, mainly because this is a study and they need allllllll the data. It was quick and simple. We got the results back from his spinal fluid and bone marrow sample, both were 100% clear. That’s good news in that we hope it means that there is so little disease in his body that there will be little reaction. And I like to think, completely unscientifically, that the super low levels show that the chemo works well enough to push the cancer into hiding, but not well enough to rid him of the cancer completely, and as such- CarT, instead of 2 years of more chemotherapy, is the best, only, choice. Good thing, because here we are!!

Tuesday Beaudin got his new engineered Car T cells. The infusion takes less than a couple minutes and aside from the extra bodies in the room, is rather uneventful. There are a couple extra nurses to watch for emergency reaction, and then someone from the lab who released the expensive cells- keeping a close eye on them, I’d guess, to make sure they get where they are meant to go.

Now that he has the Car T cells, we watch for a reaction which is expected, but not necessary. We have to call in or take him in for any change- fever, headache, confusion, tremors, etc. There is a lot of watching him and asking if he feels ok.

Yesterday, we had a follow-up appointment and Beau’s first infusion of IVIG. IVIG is portion of blood product (think plasma, platelets, red blood) that offer antibodies for the immune system. Normally, these antibodies are produced by B-cells, but since the Car T will chomp through all of his B-cells, he has to have this immunity supplemented. The infusion takes 2-3 hours. Beaudin will have to have IVIG infusions for the entire time that he has B-cell aplasia (a lack of B-cells) So, basically the entire time that his Car T cells are kicking butt. We pray for this to be 6-12months, but some kids continue to having functioning Car T/B-cell aplasia for years.

For both the Car T cells on Tuesday and the IVIG on Wednesday they presumptively medicated him with Benadryl to stave off any reaction to the product. Both days he was very drowsy and yesterday he ended up napping on and off into the evening.

When he woke up around 7pm he felt clammy, I took him temp, it was 98.7. He normally runs 97.3. Normally. Always. So 98.7 is high. An hour later he was up to 99.3. I wondered if we were headed in for a fever (the limit is just over 100deg.) He continued to rest and be clammy, but his fever didn’t rise. Phew. I presume it was a mild reaction to the IVIG which is common. Needless to say I didn’t sleep much, checking his temperature every couple hours. It was odd because his body was clammy and hot, but his forehead never registered any higher. So naturally I was up googling things like, “Can you have a body fever without your head being hot?” and other super logical thinks at 2am.

And then come 6am he was WIDE AWAKE since he’d been napping on and off since 3pm the day prior!

Today we laid low. It’s our first day without a doctor appointment this week and with Beaudin’s low immune system there isn’t much to do. We did walk over to a green space about 2 blocks from our apartment and played catch for a couple minute. Although between his low ANC and the blowing cold wind- we didn’t last long.

Lots of tv is being watched, luckily the apartment has great cable so Beau has been watching MLB baseball all.day.everyday.

We have a quick counts check (lab work) appointment tomorrow morning and then more waiting and watching. The reaction is expected between days 4-10 which would start this weekend.

So, This weekend? A whole lot of nothing that leaves us all tired, I suppose.

More later. I spilled coffee on my laptop- a story for another day- so I had to finish this post on my phone. Hopefully, my computer will come back to life this weekend and I can get back to writing with all our free time ❤️