Little Jason's Story
On January 21, 2008, my wife, Lisa, and I were told by doctors at Rainbow Baby and Children’s Hospital in Cleveland, Ohio that our three year old son, Jason, had Leukemia. He had shown his first noticeable symptoms during the days immediately before and his pediatrician had recommended that he been seen by the hospital. When we were given the news about our son, it broke our hearts.
In the days that followed, a team of doctors formulated a treatment plan, then unfolded it for us and showed us what our son was about to endure. The words were impossible to comprehend – they were adult words that we were accustomed to hearing applied to serious – often fatal – adult conditions. How could they apply to a three year old little boy who was so happy and playful; how could this small, vulnerable child suddenly be stricken by a demon called Acute Myeloid Leukemia which was attacking his body?
January 21st went by like a blur. Each day after went by slowly, exhaustingly, carrying with it its own moments of varied, intense, and unexpected emotions. We began to learn about words and medical terms that parents hope never to hear used in the same sentence with their children’s names. We saw our son have medical equipment attached to him – tubes, a port, monitors, and bags of fluid – we saw him, finally, confined to the narrow limits of his little hospital bed. And worst of all, we saw him grow sicker then we had ever seen him – or anyone – before. For a previously very active 3 year old, these realities were simply unthinkable – and yet, they were there, before us – inevitable and inescapable.
As we began the first round of treatment, we were reassured by others that children are strong and able to handle such treatment better than adults simply because they are young. “They are still growing,” we were told; “their bodies can quickly make new tissue.”
And so we pinned our hopes on such words and clung to them religiously until about three weeks into our son’s treatment. At three weeks, he suddenly became even worse. We knew that he was fighting cancer, and that the chemotherapy had wiped out his immune system. But now, he had a new enemy, teflitis, an intestinal problem. Additional treatments were now required.
And then the bottom dropped out. An evident abundance of fluids had resulted in right side congestive heart failure.
Jason was transferred from the cancer floor to the cardiac intensive care unit. He slept almost continuously, and, when he woke, he was groggy and unresponsive. For four days, he remained in the intensive care unit, riding the knife edge between life and its alternative. And then – our first miracle!! On the fourth day, Jason showed that extraordinary childhood power to rejuvenate – to not let the compounded evils of cancer, inflammation, and heart failure conquer his body. His heart suddenly improved. He became clear and responsive again. He showed renewed signs of strength.
His doctors expressed amazement at this unexpected turn. We were finally told that Jason would be returning to his room on the cancer floor, which, at this point, was a major victory in itself. It seems strange that what had been devastating news a few weeks ago was almost like welcome news now. Once back on the cancer floor, it was not a week until Jason’s heart condition had pulled a complete “180 degree” turn-about and he was back on his feet, laughing, playing and being…well…being Jason again.
The rounds of cancer treatment that followed were challenging, but mild, compared to our first-round experiences. A pattern began to emerge. Jason would be sick when the chemo was first administered, just wanting to stay in bed while his immune system was down. But then, as it began to build itself back up again, he would brighten, regain his strength, begin chasing the nurses again, and playing with the toys and crafts that were made available to him.
During the times when Jason was allowed out of his room, times of recovery as his immune system strengthened, Lisa and I were able to meet other children fighting battles similar to Jason’s. It was so amazing to see the smiles on the children’s faces as they played or worked on crafts, even though they were still tethered to their medical poles and receiving medicine. Seeing these children’s bravery in taking on cancer, and yet enjoying life and having fun, made me realize that I was witnessing some truly heroic behaviors.
By May, 2008, Jason finished three total rounds of chemotherapy and had actually gone into remission. His doctors consulted amongst themselves as to what follow-on treatment would be best at this point. Because Acute Myeloid Leukemia is aggressive and has a high likelihood of recurrence, they decided that a bone marrow transplant was the best means of ensuring against the cancer’s eventual (possible) return.
So Jason was sent to another hospital – Cincinnati Children’s Hospital – for his bone marrow transplant. The transplant was the harshest treatment yet that his little body was forced to face, but he never surrendered. Massive chemo was administered to kill off his existing bone marrow, and donor marrow was given in a kind of follow-up blood transfusion to replace it. God bless his donor – a male and a 100% match. Such people truly know the meaning of loving and giving!
Jason spent nearly two months in the Cincinnati hospital, confined to his transplant room, before being discharged. He spent another two months confined to our local living quarters in a hotel in Cincinnati. We played and kept busy doing interesting things together. Jason was finally released and returned home on September 3, 2008 to pick up the pieces of his (and our) life again. He played with his sister, Nicole; he played with us in the setting of home without having to worry about going back to the hospital for the first time since January, and we all enjoyed each day and every breath of life.
Today, Jason has passed his one year milestone since his transplant. His doctors are optimistic, and Jason shows every promise of staying in remission. To the many people who reached out and continue to reach out to us from across the country and the world during this time of our crisis, we can only say, “Thank you!” It is for their sake, and in gratitude for their help and prayers, that this foundation, the Little Jason Childhood Cancer Foundation, was conceived and is dedicated to reaching out to and helping other families who are stricken with childhood cancer. The accompanying website tells a great deal more about the foundation and its activities.
May hope continue to flourish and children and families everywhere have the good health and strength to grow and thrive.
