April 7th – It has been a rough couple of weeks.
After being released from the hospital for a bacterial infection, Cole was home
for just 3 short days before we were back in the Hospital again. This time his
left arm had swelled up, so we rushed him back to the hospital to find that he
had a blot clot. He was again admitted to the Hospital and put on a blood
thinner. While in the hospital he began to experience Neuropathy (pain in his
joints) and cramping in his arm/hands. He had never experienced this before and
it was quite painful. For a few days it took everything he had just to get up
and take a few steps. As a parent, these are some of the most trying times. Our situation was far from my hoping that we
would be able to enjoy a few weeks of quality time together before returning to
Boston. This also delayed our trip back to Boston by a handful of days.
On Wed, April 4th the pain began to subside and
Cole was able to start physically therapy. On Thursday evening we were able to
bring him home. Cole was again in the comforts of his own home and of course we
treated him to some of his favorite foods! Cole continues to amaze me with his ability
to rebound from such things and still manages to stay positive through it all.
Those of you who know him understand exactly what I am talking about.
During our stay at the hospital, we received his labs back
that tell us the current status of his Leukemia. The tests show that the Leukemia
in his CNS and Bone Marrow are nearly non-existent. The CNS tests show there is no measurable
amount and the marrow shows 0.04%. While this is good news, we also know that
left untreated that it would rapidly return. Nonetheless this is good news for
the remainder of his treatment, as we are told that the less Leukemia in his
body when receiving his cells back the better.
Sat, April 7th, Cole is heading to Boston
tonight. On Monday he is scheduled for some additional tests at Boston Children’s
Hospital and then receives chemo for the remainder of the week in preparation
to receive back his CAR-T modified cells. If all goes as planned, he should be
getting his cells infused on Monday, April 16th. As I’ve stated
before, this is when the magic happens. These CAR-T cells are Cole’s own
T-Cells that were modified in a lab at Novartus to kill off the Leukemia cells
in his body. This process is called immunotherapy, a new and innovative approach
to cancer care that has shown great promise for patients who typically wouldn’t
have any good option remaining. Cole will be about the 250th kid in
the world to receive this particular treatment.
While we are very happy that this immunotherapy option is available
to Cole, we are obviously very scared for him/us. We have great confidence in
our medical teams both locally as St Marys/Palm Beach Children’s Hospital and
Boston Children’s Hospital/Dana Farber Cancer Institute; however our greatest comfort
lies in this incredibly strong young man who has conquered too many battles
already in his short life. He has endured more than any child, or adult for
that matter, should ever have to and has come out on top with a smile that
lights up the room. He has fought too long and too hard for us to believe that anything
but success is not an option. So off we go to battle and conquer this horrible
illness once more!
I would be remiss if I did not thank all of you who have
been right there by our/Cole’s side with thoughts, prayers, supports and so
many random acts of kindness! We are all Cole Strong!!!
#ColeStrong, #LittleWarrior, #Immunotherapy, #StMarysHospital, #PalmBeachChildrensHospital, #BostonChildrensHospital, #DanaFarber, #Novartis
Almost ready for his procedure
Brotherly love
Cole enjoying his favorite breakfast -
Banana Nutella Crepe
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