More hurdles

April 17^th – Last Thursday (4/12) Cole started his pre-treatment chemo during the day and then at 7pm something went wrong. Cole started having problems forming his words and it was difficult to understand him. This lasted for a little over an hour. An MRI with contract was ordered and by 10pm we knew Cole had suffered a sub-dermal bleed next to his brain. They believe that the bleed was putting pressure on his brain and causing the speech issues. The doctors immediately stopped his blood thinners and pre-treatment chemo’s. The next day the speech issue returned and stayed. Subsequent images were taken and thankfully the bleed had not increased. We do not know for certain the cause of the bleed, but they suspect the blood thinner along with prior conditioning. This made for a couple of very anxious and nerve racking days, as we were not sure if this would require very risky surgery. Thankfully it looks as if we have avoided surgery for now.

The big picture for his Leukemia is now cloudy, as he cannot get his CAR-T immunotherapy cells until the bleed heals and we do not yet know how long this will take. So in the meantime he will receive chemotherapy to keep his Leukem 

ia at bay until such a time that we can again attempt to receive his CAR-T cells. We are told that the CAR-T cells are good for about 9 months.

In addition we need to deal with his blood clot that formed while we were still in WPB and he cannot be on blood thinners. So they have decided to remove his port, as the clot is where the port connects to his vein. Hopefully this will resolve the clot issue. He is scheduled to have it removed on Thursday. If all goes well, we will receive future treatments on an outpatient basis until the bleed resolves.

Will continue to keep you all updated as we move forward. Please note, our new mailing address for sending cards will be:

The Boston House
c/o: Cole Malone
229 Kent St
Brookline, MA 02446

#Minions, #ColeStrong

Chris, Cole and Denise

Cole in his room

Minion Cole

Setback

Apr 13th - Shortly after my blog post 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

Cole gets a late night MRI

It's cold up here!!!

April 12^th – We arrived in Boston over this past weekend and its pretty cold!!! On Sunday night we were treated to a Bruins Game. Cole watched the game from a luxury box, fist bumped the players between periods and met Bruins Player Brian Gionta after the game. Brian spoke with Cole and presented him with his game used stick which he had signed for Cole. It was an incredible night.

On Mon the 9^th, we went in to the Jimmy Fund Clinic at Boston Children’s Hospital for some basic tests and we also met with his Oncology and Immunotherapy lead doctors. The lead doctors again reviewed his medical history, discussed the plan of action going forward and also had some treatment paperwork for me to sign. After that we had some tests scheduled for later in the day, so we made a quick lunch trip to the Faneuil Hall Marketplace to get some of Cole’s favorite Clam Chowda and my favorite lobster role.

We had Tuesday off, so we made a visit to the New England Aquarium and after a trip to the North End for some Italian food followed by a visit to Modern Pastry for some dessert.

The plan called for Cole to come in for more tests on Wednesday during the day and then get admitted into the hospital. On Thursday we would start a 4 day regimen of pre-treatment chemo, then 2 days rest and then get his CAR-T cells. If all goes as planned, he will get his cells on Wed, April 18^th. So far we are on schedule.

Will send another update as things progress.

Cole and his chowda

Cole with Brian Gionta

Cole and I at the New England Aquarium

On Our Way North

April 7^th – 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 4^th 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 7^th, 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 16^th. 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 250^th 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

Almost ready for his procedure

Brotherly love

Cole enjoying his favorite breakfast - 

Banana Nutella Crepe