Complications on Day 2

Dear friends and family,

We arrived in New York on Wednesday afternoon and had a night to settle in and get Jeff’s COVID test, and then came back Thursday for a surgical procedure to place his Hickman catheter. He was checked into the hospital starting Thursday night. We learned both on Thursday waiting for the surgery and then again on Friday waiting for his first dose of chemotherapy that things always take longer in the hospital than you think they will, which Jeff is very good natured about while I am a bit more impatient. Jeff got his first dose of cyclophosphamide at the end of the day on Friday, which he would receive over the first two days. He woke up Saturday morning with a horrible headache and severe nausea. They treated those and he fell asleep, and I came to his room around 9am. We spent the entire day waiting for the doctors to figure out the problem so we could treat it while Jeff slept. After chasing the tail of a possible sodium deficiency for 5 hours they promised to get him some salt tabs which took another 5 hours to actually get to him. Because Jeff was very lethargic and had increasing brain fog, even as the headache and nausea subsided, they sent him for a head CT on Saturday at 7pm to rule out a brain hemorrhage.

Unfortunately, the CT showed that the lesion in his brain that we are tracking and trying to treat with TIL had started bleeding, and it was causing potentially fatal swelling in his brain. They called me back to the hospital and I spoke to the neurosurgeon, who said that they were starting him on high dose steroids to get the swelling down, and that we would repeat a scan at 1:30am to see if it was still bleeding. If so, Jeff would go immediately into surgery to remove the entire lesion and the bleed and reduce the pressure in his skull. If it was stable, we would decide next steps at that time. I stayed in his room (Jeff could respond to the physical neurological tests but not answer questions) and also talked to the attending physician, brain radiologist, and several nurses throughout the night as they monitored his vital signs for any worsening. They put him on oxygen when it dipped around 3am. The CT was performed around 2:30am and then the results came in around 3:30am, and it thankfully showed the bleed was stable.

The neurosurgeon did not return until nearly 9am Sunday morning when I had stepped out to take a quick nap, so he talked to Jeff and told him we were going to get an MRI to get a more precise picture of what was going on. We were worried that due to several complicating factors we would be told we could not continue with the treatment protocol. After several more conversations, the trial doctor called us and told us they had decided we could continue, for which we are very relieved. The MRI he got tonight showed the bleed is still stable, so we continued to day three of chemotherapy today with a dose of fludarabine, which he will receive for 5 days.

There is a possibility that the steroids that Jeff is on now could lessen how effective the TIL treatment is, but they don’t know for sure and won’t know until we do it. There are also risks to lowering his platelets while he has this unstable lesion that has already bled. However, there is not a possibility to delay and restart this later; it is either we do this now under our current set of conditions, or we don’t do it, and this is Jeff’s best treatment option, so we are moving forward.

It was a very challenging couple of days. Jeff is recovering slowly, and was able to get up, eat, and speak to us today. He is still having trouble forming his thoughts. He says he can think of what he wants to say but it is very hard to get the words out. If you want to reach out to him, you can do so, he is probably best at responding to texts rather than calls at the moment.

Thanks for the love and support.

Arianna