Cole Strong 28 - Round 3

Apr 13th - Last night Cole suffered a medical setback and our plan for his CAR-T immunotherapy next week is now off. We will be continuing to test / monitor him until his doctors formulate a new plan for him. Please continue to pray for him!

Many of you have asked what you can do. At this point I would simply ask that you to mail him a card. He loves to open them and read the nice messages.

His mailing address is:
Boston Children's Hospital
c/o: Cole Malone / Room 611
300 Longwood Ave, Boston, MA 02115

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

ColeMalone.org

March 21st – After our amazing celebration with the West Boynton Little League on 3/10, Cole had a pretty good couple of weeks. He was handling his twice a week chemo treatments like a trooper!

However over the last week or so, we could tell that it was beginning to wear on him.

Last Friday (3/16) when Cole went to clinic for his chemo treatment they discovered that he had a fever. This required him to be admitted to the hospital after his treatment, as they needed to find the source of the fever and address it. On Sunday it was determined that he had a bacterial infection and they began to treat it with specific antibiotics.

The antibiotics have now done their job, however the infection and his chemo treatments have reduced his immune system counts to near zero. This means that he needs to remain in the hospital until his counts recover.

We also recently received word that his modified t-cells (CAR-T immunotherapy cells) will be back to Boston on March 29th. When he gets these super cells is when the real magic happens! We don’t have a schedule to return to Boston just yet as we need his counts to recover before we can go. Hopefully his counts will recover by mid next week. If so, we will then do additional diagnostic tests locally on Friday (3/30). The results will take a day or two and then maybe to Boston sometime during the first week of April.

Today he had an MRI and MRA that were requested by his Boston doctors in preparation for his return trip to Boston. He is also still scheduled to receive a chemo treatment this Friday. In general Cole is doing ok. He is pretty tired and his appetite is not what it typically is. But each day gets a little better. He is allowed to have “very healthy” visitors and has had a few friends visit, however we want to keep this to a minimum for now.

I will continue to send these updates as we continue on his latest journey. Thanks to all of you who have been helping us so much with your thoughts, prayers, meals, rides, watching kids, raising money and so much more! You are all ColeStrong!!! We feel very blessed to have you all in our lives!!!

#ColeStrong, #LittleWarrior, #immunotherapy, #StMarysHospital, #BostonChildrensHospital, #DanaFarber

ColeMalone.org