Cole's Journey: Round 3

Thursday, February 22, 2018

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

1 comment:

UnknownFebruary 23, 2018 at 6:39 PM
I was traveling from Mustang, OK to Sebring, FL to see my dad in the hospital (he had pneumonia but is fine now ) We stopped for the night in Atlanta, GA at a hotel and that is where my husband found a bracelet on the floor. He thought I may want to look it up to see what the writing meant, for I too wear a bracelet similar to that one in memory of my 13 yr old son that passed away in 2014. It brought me to this blog..I have read some of Cole's journey and just want you all to know you are in our thoughts and prayers all the way in Oklahoma!!
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About Cole

Cole was born in September of 2004. He was one of two beautiful boys that entered our life that day. Yes he is a twin. Fast forward to a few weeks before his 2nd birthday and he and his brother Michael were at the doctors for their 2 year old check up and all looked good until the doctor said go get your finger poked (CBC blood test) and then you boys are out of here. Unfortunately Cole's counts came back unusual and the next thing we know we are at a local oncologists office and then admitted to the hospital where further testing showed that he had Pre-B ALL Leukemia. At the time we had no idea what this meant. However, soon after we became more educated on the subject of childhood cancers. We found out that this form of cancer had about an 80% chance of cure with 3 1/2 years of chemotherapy treatment. Cole finished his treatments like a trooper and our family got our lives back. Cole was able to attend school from pre-k on to just finishing 3rd grade. Along the way he and his brother started playing recreational baseball, soccer and flag football. The last 3 years they both have been playing travel baseball and Cole has been very healthy and cancer free. Now, nearly 5 years since Cole's last chemo treatment, we enter another Leukemia adventure with Cole, as a routine eye exam for the kids showed that Cole's optic nerve was swollen. The doctor told us that something must be pressing on or causing pressure on the optic nerve and because of his history we immediately did further testing that confirmed that his Leukemia did indeed return. I am writing this blog to try to keep all that are interested up to date with the latest regarding our beautiful boy. Thank you all for caring and please keep us in your thoughts and prayers!