Are You Excited?

That’s all we keep hearing from the nurses and doctors. Tomorrow is Day 0 and officially CAR-T day. Here’s what we know so far.

Ava should get her infusion in the morning. Kevin says it’s about 17 ml of CAR-T cells. They come packaged in dry ice and the opening is supposed to look very cool. Kev is excited to get video of it. The infusion should run over 20-30 minutes. We have asked a hospital chaplain to bless the cells beforehand, and I’m praying they can make it happen. She will have labs and vitals done before the cells are infused, 15 minutes into the infusion, and then multiple times after.

Somewhere around 24 hours after the infusion AJ may begin to feel yucky. Then again she may not. This is the confusing and frustrating part. Since CAR-T is still so new and she is only the fourth kid getting it this early in treatment and with such a low burden of disease no one knows exactly what to expect. Most people who’ve had this done want a very strong reaction as proof that the CAR-T cells are destroying the B cells. We were told to imagine the worst flu you’ve ever had, high fevers, body aches, confusion, and such. That’s what patients who have a high burden of disease expect. Some people who get CAR-T have like 90-95% disease burden. At last check Ava had .34%. We don’t know today’s results yet, but it will be a good indicator of what to expect. Her doctor’s have told us that she may not have any reactions or only slight reactions. They’ve told us not to panic or worry that it’s not working. They keep coming back to, she’s got such little leukemia left it shouldn’t be much of a reaction.

Then there are her nurses who have tried to prepare us for the 106°, possibility of seizures, and body aches. They’ve encouraged her to get out of the room today. They keep saying she will be in the room room and feeling crummy. When they mentioned or cautioned of high fevers Ava let out a snort and laughed as if to say fevers? No problem I’ve done that before. I’m all to familiar with those. It’s like they’re playing bad cop. Maybe realistic cop is a better term. Either way they always follow it up with, but we haven’t seen kids with her level disease before so may not.

Another thing her nurses have brought up is how AJ’s BP naturally trends lower. If I’m not mistaken at one point yesterday it was 70 something over 30 something. The nurses assured me they brought it up to the team and that everyone will be sure to keep a close eye on it. Typically they give meds to kids whose BP is so low after CAR-T. Those meds can impede the effectiveness of the CAR-T cells. However she runs so low most days they will have to set new guidelines of when to intervene so they don’t do it too early. This is probably what has me most on edge. It gives me PICU flashback and I get so nervous. I’d love to avoid a trip to the PICU. Yesterday I listened to a TedTalk with Dr. June, the developer of CAR-T and he said the first child to get CAR-T was in the PICU for 20 something days. It was scary to listen to. But she’s healed and still leukemia free six years later.

So yes I am excited for tomorrow, we all are, but I’m also scared. Scared of a strong response, scared of the PICU, and scared of no response as well. But I still come back to that thrill of hope. I come back to that and to knowledge that no matter what, God will give us exactly what we need to get our girl healthy and leukemia free. The doctors and the nurses may not know exactly how AJ’s body will respond, but He does. And thankfully He’s exactly who I trust with my sweet Ava.

https://youtu.be/L6JXsyIhOns just in case anyone is interested this is the link for the TedTalk with Dr. Carl June.

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