#Joestrong's Story - Part I

Hello,Team #Joestrong! I am Joe's mom and want to start by telling you how deeply honored we are that you are all riding in honor and memory of our precious boy and raising money for a cause near and dear. Words will not be able to tell you all how much this means.

Joe's story is one that is filled with bravery and strength. Pain and tragedy. Smiles and laughs. If that makes any sense at all......

It was February 2019, my husband and oldest son had the flu. Joe was diagnosed with it last and had the most mild symptoms of all of my boys. Joe had returned to school on a Friday but started running a fever and I was called to pick him up. No problem, I thought. Probably just lingering effects of the flu. So we came home to rest. My oldest son, John, had his birthday party the next day and Joe woke up feeling good- even went on a bike ride before the party. Once we were at the party, everything started going south, fast. It was at one of those indoor trampoline/bounce house places. Joe was just falling out. He got hit in the face with a dodge ball, upset, mad.....just not our happy Joe. Fast forward to that evening....we got home. Joe was sick to his stomach and one of his eyes was extremely bloodshot. We figured it was from the dodge ball that he caught on his cheek. We decided to let things play out a little bit before calling the pediatrician. Joe slept through the night.

This is now Sunday March 3, 2019. Joe woke up the next day and both eyes were completely red with blood and I called the pediatrician immediately. We were to go at 11am. In the hours leading up to the appointment, Joe started getting a bloody nose off and on. Then I noticed what looked to be blood blisters in his mouth. A mother's instinct is not typically wrong but NO ONE could have prepared me for the next few hours.

Joe and I arrived at the pediatrician. She immediately started asking questions-had we traveled outside the country, had we been exposed to people who had, etc. She then told us to go directly to the ER and that she was calling ahead to let them know we were coming.

At that point, I am on high alert. Call my husband, David, to give him the update. Joe and I arrive and are pretty much whisked back to a room for blood work. Keep in mind, Joe has always been a healthy kid and never had blood work- so it was extremely traumatic. But, true to his brave warrior self, he got through it like a champ.

Within an hour, the ER doc came back and asked us to step into another room. Going into a small room with a doctor never end well. This is not going to be good- is all I kept hearing. And then just like that, our beautiful, seemingly normal and wonderful life crashed down like a mountain of bricks. "I'm sorry, your son has leukemia. The ambulance is coming to take you the ICU at Wolfson (our childrens hospital). Do you have questions?" WHAT.....WAIT, WHAT???? I damn near passed out and would have hit the floor had David not been standing next to me. LEUKEMIA. WTF. The first thing I said was, "we can't loose him". If only.

If you've never been in the front seat of an ambulance with the lights and sirens on, going full speed down I-95, and your child in the back,I don't recommend it. Turns out, upon arrival to the ICU, Joe was completely convinced that I drove that ambulance. This was one truth he would never find out about. I kept that secret to myself.

The next days were a whirlwind. Meeting with oncology team, surgery for a port (central line used to giving chemo, blood, etc) that was placed in his chest, bone marrow biopsies, chemotherapy, you name it and it was done.

#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.