Day -5 Sunday, June 20

Sunday we flew to Houston for the Car T cell therapy clinical trial. The chemo and radiation we did in May quieted the cancer sufficiently and we decided to move forward with the trial.

During the past month, I filled out and submitted applications to various organizations to assist us in different aspects of this trip. One organization is Miracle Flights. They arranged for our flight to Houston. It was so nice not to have to worry about this expense.

Chance for Hope Foundation accepted our application for housing. They provided us with an apartment near the medical complex, with shuttle service to the hospitals. It has everything we need in a home away from home. There was even bacon in the freezer when we arrived–Eli’s favorite.

Day -4: Monday

We caught the 7:05 am shuttle to Texas Children’s Hospital and spent the morning on paperwork and hydration. We met with the doctor and trial coordinator, with whom I had only met over the phone before. We discussed the treatment plan and began the first of three days of chemo, which prepares Eli’s body for the T cell infusion by knocking down the tumor cells’ defenses. It is lower dose than what he did during his previous chemo regimen, but still gave him some nausea. We finished day one chemo just in time to catch the 5:27 pm shuttle back to the apartment. The hardest part of navigating the hospital complex (the largest in North America), was using the elevators. Us regular people can’t operate the elevators, so we have to rely on staff with security badges to get to the floor to which we are headed. I guess it’s a Covid 19 thing that they will change next month. I can’t wait for elevator freedom.

We connected with members of our church in this area and Elisa, a med student, gave us a ride to the grocery store so we could stock up on supplies. The leader of the local congregation, Bishop Migenes, brought us a few things the night before to tide us over.

Day -3: Tuesday

I woke up this morning to lightning and thunder. Eli slept right through it. The weather here has been warm and humid, but not uncomfortable. We should have brought umbrellas.

After Eli woke up, he threw up, and I regretted not giving him another dose of Zofran at bedtime, even though it wasn’t due until midnight. I didn’t want to wake him up, so I figured I would give him more in the morning. I really don’t like making the wrong call on these things. Med schedules aren’t very convenient.

We made it to the hospital for day 2 of chemo.

To be continued…