Round 3

Feb 22nd - We now have a plan. Cole will be going to Boston Children's Hospital/Dana Farber Cancer Institute to receive a CAR-T immunotherapy treatment called Kymriah to treat his Leukemia. This process involves taking Cole's own T-Cells and having them modified in a lab to become Leukemic cell killing warriors. We will be flying up this weekend and will start meeting with doctors and doing some prep on Mon and Tues. On Wednesday they will harvest Cole's T-Cells and ship them off to the lab at Novartis for processing. We will return home while the cells are being processed. The cell processing takes approximately 4-6 weeks. During this time, Cole will continue to receive Chemotherapy locally at St Mary's in order to reduce his Leukemia cell counts and to prepare him to receive his modified T-Cells back. Once his cells are returned to Boston, we will return as well and Cole will have his modified cells transfused back into him. We will need to stay in Boston with him for observation and testing for 4-6 weeks after the transfusion. If all goes as planned, these new cell will kill off the bad cells and hopefully he will again be cancer free!

In the meantime Cole has had 3 spinal chemo treatments locally, with a 4th coming tomorrow. The treatments are outpatient, so he can be home. In general he feels pretty well, however the chemo is wearing on him a bit and understandably is feeling a little tired. He has been able to get out some and was able to see his flag football team play its last couple of games. I am sure he would have rather been playing, nonetheless it was good for him to get out of the house.

Many of you have asked me how we knew his cancer had returned. On Friday, Feb 9th we received a call from Cole's school saying that he wasn't feeling well and was in the nurse s office. When we arrived at the school they said he was now showing signs of a stroke and they had called 911. He was rushed to St Mary's hospital and he had an MRI and we were told that he had a stroke. They then wanted to do an Angiogram and an MRI with contrast. The neurologist did not see a clot, but again was convinced Cole had a stroke. When Cole awoke from his anesthesia he was no longer showing signs of a stroke, however he was admitted to the PICU. His blood test showed no cancer. The next morning we did a Lumber Puncture and it was determined that his Leukemia had returned in his CNS (Central Nervous System). After this test, the doctors now felt that the pressure from his CNS relapse had caused a seizure and not a stroke. On Monday they tested his bone marrow and thankfully that showed clean.

Again, thank you all for your support! I will try to keep you updated throughout Cole's journey in conquering his Leukemia once and for all!!!

Cole relaxing

Cole with his brother and friends

We are again heartbroken to find out the our son Cole's Leukemia has returned. This will be the third time that he has battled this terrible illness. He has already endured many years of chemotherapy and has previously had a bone marrow transplant.  This time we will be trying a newly approved treatment called immunotherapy. Currently we are being treated at St Mary's Children's Hospital in West Palm Beach, FL getting some chemo for his current situation and then our plans are to either go to Boston or Philadelphia for the immunotherapy treatments. I will post more photos and info as we move further along. Please keep us in your thoughts and prayers as we prepare to battle this illness one more time!

Thank you,
The Malone's