Joe’s Story

Joe DeWaele’s story is one that is filled with bravery, strength, fear, laughter (if you can believe that), and ultimately love. Joe was just 8 years old when he was diagnosed with Hypodiploid Acute Lymphoblastic Leukemia on March 3, 2019. The diagnosis came out of left field and to say we had the breath stolen from us would be the understatement of the century. When the doctor said the dreaded words, “I’m sorry but your son has leukemia” the first words that fell from my mouth were to my husband. I said, “we can’t lose him” and then almost fell over. Within an hour we were racing down I-95 in an ambulance with the sirens on to our local children’s hospital and admitted directly to the pediatric intensive care unit.

The first week was a whirlwind. We spent the days quelling the fear that understandably surfaced with Joe, hours talking with Joe’s team of oncologists in tiny rooms with no windows and having more information thrown at us than we could possibly absorb. Within 24 hours, Joe was taken to surgery to have a port surgically placed in his chest where he would receive chemotherapy, blood transfusions, and medication. He immediately started chemotherapy and three days later was released to the oncology floor. In those initial days, Joe asked us multiple times if he was going to die. How do you prepare yourself, as a parent, for your 8 year old to ask you that- let alone answer. My answer every time was, “Not on my watch, darling”. If only I could have kept that promise.

As Joe’s story began to play out it became apparent that not only was his leukemia smart, it was extremely aggressive. When we learned that traditional chemotherapy did not work for Joe, we were devastated. However, we still had options. We were sent to the Children’s Hospital of Philadelphia (CHOP) for immunotherapy treatment called CAR-T. Joe and I uprooted from Jacksonville to move to Philadelphia for this treatment. We lived at the Ronald McDonald House when we weren’t inpatient. Joe was as brave as I have ever seen him. We asked a lot of him and he faced it head on. Brave. Strong. Resilient. Joe ended up spending a week in the intensive care unit at CHOP. Intubated. In multiple organ failure. Stiffening lungs. True to form, Joe pulled through and we were eventually discharged to wait for results of his CAR-T immunotherapy. In the time we spent waiting, Joe and I made some wonderful memories. Memories that I will forever be thankful for. When we were called in for results, the same news befell us. It hadn’t worked. Our options were dwindling. But, we still had hope.

We flew home to try a trial drug in the hopes of getting Joe into remission and prepare him for a bone marrow transplant. After two weeks, we were told, yet again that it had not worked. The situation at that point was dire. We had two options. We were told we could take Joe home and make memories with the time we had left. Or, we could continue to fight. We choose the latter option.

To continue the fight, we once again uprooted. This time to St. Jude Children’s Hospital in Memphis. We arrived on October 23 and began treatment immediately. Joe was strong and brave as always. Again, we asked a lot of him, but he rose to the challenge. We were only there a month. No one, including Joe, was going down without a fight. We lost Joe at 10:12am on November 26,2019. I was blessed to hold him in my arms as he drifted out of this world to race ahead of us to Heaven.

Joe’s life is a story of love of the purest form. He is the boy that has forever stolen my heart.