10:03 PM

We just finished cycle 6 of the chemo protocol last week. Each cycle is 3 weeks. Unfortunately, he has a fever. Our family has been going through a virus of some sort (Covid test came back negative), but regardless, Eli caught it just when I thought we were out of the woods. He was getting over it and feeling better this morning, but he’s getting mouth sores again, so wasn’t feeling great most of the day. He came to me tonight and I checked his temperature, so after a call to the on call oncologist, we’re in the emergency department. They’ll check his blood and do a virus panel to help decide whether to admit him.

11:30 PM

Bloodwork came back and hemoglobin is very low–the lowest Eli has been. So, he is being admitted for a blood transfusion–the first ever. <Sigh> I was hoping to somehow avoid ever needing a transfusion. Oh well, he should feel better afterwards. We hope to go home in the morning.

12:02 PM

Just settling into the room. I think we’re both tired, but especially Eli. It turns out that the virus going around our family is a rhinovirus.

12:34 AM

The doctor came in to discuss the blood transfusion and Eli expressed a strong preference to not get the transfusion. Unfortunately, with a hemoglobin at a 3, it is unavoidable. He negotiated with the doctor and set terms. The doctor agreed to check his blood once more before starting the transfusion, but the hemoglobin needed to come back 7.5 or higher to avoid it. Not likely, so I signed the paperwork agreeing to let them give him blood after they checked his blood again.

Wednesday, March 31, 2021

1:30 AM

The doctor came back with the lab results. Eli’s hemoglobin is now at an 8. Nothing short of a miracle for Eli. Gotta love the Lord’s tender mercies. There will be no transfusion after all, but they will keep him until the afternoon to make sure the blood cultures don’t grow anything.

9:20 AM

The doctor came by and said we can go home this morning instead of waiting for the cultures. Eli is very happy about it.

11:42 AM

After being discharged, I dropped Eli off at the school room to hang out with Lisa while I get his prescription filled. He played with their VR while waiting, since his VR was already in the car. This ended up being a good thing because there have been a couple delays with the prescription. We are now waiting in the pharmacy waiting area because the prescription was filled as a liquid instead of a tablet.

Thursday, March 25, 2021

Eli had decided he was tired of doing chemo, so this was the last chemo. Dr. Fair said he didn’t have to do this last infusion, but since we were already there, we went ahead and did it. Unfortunately, this was probably the wrong decision and may have led to the current circumstance. Hindsight is 20/20 I guess.

I am sad to stop the chemo, if it’s still helping, but the current situation, with an unplanned inpatient stay, is a reminder that chemotherapy has its side effects and Eli’s body just isn’t liking this regimen that much. I’m hoping things are still stable, which puts us in a good position for the trial.

Plans

With the decision to stop chemo, the plan is to radiate the tumor behind Eli’s eye, starting after scans next week. In the meantime, we are moving forward with plans to enroll in the CarT trial in Houston. So, Radiation in April, clinical trial in May, is my best guess for the timeline.