#Joestrong's Story - Part II

Joe was terrified just like the rest of us. He was very silent and hardly spoke for the first month after diagnosis. Not typical of Joe. He asked both David and me, on multiple occasions, if he was going to die. Can you imagine, 8 years old and asking that? Or as a parent, trying to field it? My answer always, always was, "not on my watch, Joe. Not on my watch". A promise I could not keep.

Turns out Joe's leukemia was a very rare and aggressive subtype called Hypodiploid Acute Lymphoblastic Leukemia that made him resistant to virtually every form of treatment (there are not a lot-which is why what you are doing is so very important) available.

Joe would be treated at home, here in Jacksonville. When that treatment proved to not be effective, we were sent to Children's Hospital of Philadelphia for CAR-T cell therapy. Joe and I lived there for 6 weeks. He ended up intubated in the ICU for over a week only to be told at the end of the six weeks again "I'm sorry it didn't work. We still some options, but the list is very short" Again, WTF. We were sent home to Jacksonville on a trial chemo and two weeks later, got "I'm sorry, it didn't work. You should take Joe home and make memories". Well, we operate on the philosophy of "If you're going down you may as well go down swinging".

David and I had already been doing extensive research for other clinical trials. It so happened that I found one at St.Jude in Memphis that accepted us. On October 23, 2019 we flew to Memphis. Joe had an awful time holding onto platelets and was a huge bleed risk because of this so flying was a very high risk. But, we made it and started treatment right away. Fast forward to mid-November, Joe again responded for the first two weeks and we thought we were on our way. Then, he started getting sick. Sicker and sicker. He couldn't eat or hold anything down. He lost 10 pounds in a matter of roughly 2 weeks. Upon taking him to the hospital, he was admitted to ICU, yet again. I'm sparing you from the details but to say it was difficult would be the greatest understatement ever. On November 23,2019, the ICU doc came in and told us that Joe's odds of survival were very low and they were moving us to hospice. Our worlds crashed down again....

We lost Joe on November 26, 2019 at 10:12a.m. in Memphis at St.Jude. He drifted out of this world in my arms. My hand was on his heart and I felt it stop beating. David and John sat next to him. Our worlds crashed yet again but in a way that no parent or sibling should ever have to experience. In a way that will never be rebuilt. We all died that day- forever changed. I will grieve Joe's loss until the day comes when I drift away to be with him for eternity.