May 9th – It has been about 3 weeks since I last
posted an update. We have basically been in a holding pattern with his CAR-T
immunotherapy plan until his sub-dermal head bleed heals, however he has
continued to receive chemo in an effort to keep his Leukemia at bay until we
are prepared to move forward with CAR-T. The good news is that his blood counts
look good and his Leukemia is nearly immeasurable.
In general Cole has mostly been feeling pretty well and the
issues caused initially by the bleed have subsided. He definitely has his down
days as well and often has to use his wheelchair to get around. The continued
chemo has taken a toll, but he is staying strong and positive.
On his good days we try to keep him busy and have some fun.
He was able to go to a couple Red Sox games and even meet some players. This
was great fun for him and us. My good friend Ed Esgro was in town and he came
to visit us. We enjoyed a fun dinner together at a place called Dick’s Last
Resort where the waiters basically make fun of you and treat you badly. LOL, was
interesting! We also took a weekend trip to see my Brother and his family in
Cape Cod where we were treated to a tour of the area and of course enjoyed some
great seafood. Cole was feeling so well this weekend that we even hit some golf
balls at a local range.
This week Cole saw the Neurology team and his Oncologist.
They both agree that he is doing well and the next step should be a get another
MRI to see where we are at with his bleed. This will guide them on how soon we
can resume the CAR-T treatment process. We didn’t get a time for the MRI yet,
but I would anticipate within a week. So at this point, I would guess our best
case scenario is that we are at least 2-3 weeks from resuming his CAR-T
treatment plan.
Denise and I have been splitting time here in Boston with
Cole and at home with our other 2 children. This is very difficult, as we both
want to be in both places. But this is something we have done before and we
will do again, as any parent would.
We would like to thank all that sent cards and gifts. I
would guess that Cole has received over 100 cards with amazingly thoughtful and
inspiring messages. Your support has been nothing short of amazing!!! Thank you!
Cole and Chris at the Nobska Lighthouse
Cole with my brother Tony and wife Liz
Chris, Cole and Ed
Cole doing the hula
Cole hitting some golf balls
Cole with a special card from soldiers
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