June 20th – On Thursday June 7th, 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 17th. 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 16th.
On Monday (18th) 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!!!
Cole resting
His CAR-T cells are ready for infusion
Part of the team
Cole Strong!
Mike, Cole and Cousin Bryce
Mike, Cole and Madi
Cole, Mike and the Patriots Rookies
The Family
