Cole's Journey: A wild ride

June 20^th – On Thursday June 7^th, Cole received his CAR-T immunotherapy cells around 1:15 in the afternoon. We were surprised how little (only 11 cc’s) this bag of cells was and how quickly (15-20 mins) they were infused. We are very excited that this day had come, but also incredibly nervous and scared of what was ahead for him and us.

Thurs/Fri/Sat/Sun came and went and Cole was his normal self. His cousin and aunt were here and we all really enjoyed their company. On Monday morning, Cole began to fever. By evening his fever went very high (104) and his blood pressure was low. These were expected side effects; nonetheless they earned him a trip to the ICU. On Tuesday evening, Cole developed a right side facial palsy (weakness and droop). So Cole had a 1am MRI to see what was going on. We were frightened that he had another brain bleed or that his existing bleed had expanded. It was a long night awaiting results, but when they came in the results were good. No new bleed and his existing bleed was continuing to heal nicely. Thank god!!! However we don’t have an answer for the facial palsy. His doctors think it could possibly be a side effect of his treatment and hopefully temporary.

On Tuesday and Wednesday, Cole’s normally bubbly personality was gone. He became very agitated and demanding. He also began having severe neck/shoulder pain and pains (Neuropathy) throughout his body. He was put on some pain killers and has a pain button to push for on demand pain relief. On Thursday, Cole became incoherent, mostly sleeping and didn’t leave his bed as he was very weak. He was in a state of delirium, periodically saying random things but mostly just screaming or grunting. Cole’s condition continued this way through Sunday the 17^th. Even though we were expecting this, it is quite another thing to live through. It was both terrifying and heartbreaking to watch. By Thursday, Cole’s fever had begun to break and his BP has stabilized. He was transferred out of the ICU and back to the Oncology floor on Saturday the 16^th.

On Monday (18^th) morning, I got a text from my wife saying that Cole said a few words. When I arrived at his hospital room a little later, Cole looked right at me. I told him that I missed him and he told me that I missed you too dad. My heart melted. I felt like a pallet of bricks was removed from my shoulders. Cole continued to become more lucid as the day and night went on. Tuesday and Wednesday continued to show improvement. Cole’s personality was back too. He was weaned off of the pain meds, as the pain he was previously experiencing was gone. Each day he gets stronger. Today, Wednesday, he began to walk a little. In the midafternoon, we got a visit from the Patriots 2 first round draft choices, Isaiah Wynn and Sony Michel. They took some pictures with Cole and Michael and presented Cole with a signed football.

We know Cole’s journey is far from over, but we feel good that he is beginning to heal and for now that is a huge relief. This week has been incredibly difficult to live through, but our medical team feels strongly that these side effects tell us that the CAR-T is doing its job and that gives us some peace.

Thank you all again for all of your support and being part of team ColeStrong!!!