Jon's Story

By Jocelyne Brent

In 1995, my 3-year-old son was diagnosed with acute lymphoblastic leukemia. Little did I know that I would become expert at something other than mothering over the next five years. Little did I know how much our lives would change. Little did I know that I would receive lessons from my children, and blessings beyond all that I could hope for.

Jon was supposed to have all the statistics on his side. We were told his chances for a cure were 90-95 percent. But—and there was always a “but” with Jon—in the final month of his treatment, three days before the celebratory trip to Disney World, Jon was hospitalized. Our hearts sank and our hopes were dashed when we heard the word “relapse.”

After several grueling weeks, Jon was once again in remission. We searched for an unrelated bone marrow donor and found 40, including several perfect matches!

The closest pediatric bone marrow transplant center was almost five hours from our home. Five hours from family, friends and an incredible community. Five hours from Jon’s big brother, already stoic at eight years old. Five hours for dad to commute. But, our spirits were strong and our determination was steadfast and off we went to transplant with a 50-50 chance that Jon would survive.

Shingles hit a week and a half into transplant. Then we were introduced to the world of graft-versus-host disease (GVHD). The acute GVHD seemingly conquered, Jon was finally released on his seventh birthday, 31¼2 months after being admitted.

Tom, Jon, Clayton and Jocelyne Brent at Disney World.

The following year was a roller coaster ride. The GVHD became an unmanageable nemesis. By October we were off to see GVHD experts in the U.S., with plans for a trip to Disney World dashed a second time. By the time we returned home, Jon’s skin was completely red and beginning to blister. His gut and liver were now affected. He took a lot of steroids to combat the GVHD, as well as cyclosporine and Thalidomide®. In January 2000, Jon’s lungs became involved. The doctors recommended Zenapax®, and things have turned the corner.

It has been a little over two years since Jon’s bone marrow transplant. The journey has not been easy, but we survived. For now, Jon has gotten through his GVHD pretty well, but it took a while and it may be around for a long time to come. His bones get sore, he has sinus difficulty, but not everything is bad every day anymore. He just got home from playing on his floor hockey team. He played baseball this summer, and rode his bike and skateboard. He’s back in school, and we got to Disney World this year on Halloween.

So many people played a part in Jon’s survival—the doctors and health care providers in four cities and two countries, the love, faith and prayers from our family and friends … and one young lady who believed so much in the future that she donated her bone marrow to Jon.

We live regular lives now, with maturity and great insight into what’s important in life. We know about struggle and perseverance. We know that we are strong individuals and a strong family. We know we can get through anything life throws our way. Not everything is perfect, but things sure are great now. We go on knowing how wonderfully one can grow when they bloom where they are planted!

There is life after GVHD