IT IS A MATTER OF LIFE OR DEATH
For all those fighting the battle...
I was in the hospital over Labor Day weekend when I should have been lying out in the sun catching some of the summer’s last rays. But instead I was a guinea pig for the newest vampires in the ER. I will be honest, I have had my fill of hospitals, but I have also assisted many students in becoming LPN’s RN’s and Lab Techs over the years, so I have a certain ‘patience factor’ that some folks do not have. Still, after 5 sticks just to find a vein to put in an IV and then 2 more sticks to draw blood they could not get out of the IV…and then the guy ‘accidentally’ pulling out the only IV they managed to get in…I was a little on overload. NO …I was on COMPLETE overload and ready to slap somebody upside the head. Then I stopped for just a moment and thought about what I had watched my child suffer….and I felt like a big old cry baby and remembered this story I was asked to write to encourage others to become a bone marrow donor. Funny how quickly one can be brought back to the ground and rooted in the reality of what is really important.
On April 5, 1989 Adam was diagnosed with ALL (Acute Lymphocytic Leukemia), he was 6 years old. He was in remission for over 5 years, but relapsed just before his 13th birthday. This time the cancer returned stronger than ever and cells were found in his brain and spine. His only hope was a bone marrow transplant. We waited anxiously for the test results of all the family members to come back and were thrilled to find out his 16 year old brother Jeremy was a perfect, “ 6 out of 6 “ match. We were referred to Duke University in North Carolina for the transplant and left on the 4th of July.
The children’s bone marrow unit at Duke University in 1995 had the capacity for only 7 children. There were 7 boys there that summer, Adam, then 13, a 17 year old, a 16 year old, an 11 year old, a 2 year old, a 9 year old, and a 3 year old. Out of those 7 children, only 2 had sibling matches, and 1 had a suitable stem cell transplant match and only those three survived. There is no way to describe the pain of watching those families lose their children. But Brian, the 9 year old, whose room was next to Adam’s room, made a particular impact on us. Adam and Brian would play video games through the glass windows when they had a good day. Brain did not have a donor match and they had given him a 3 out of 6 match as a last attempt to save his life. In the weeks that followed, graft vs. host disease and a fungal infection took over little Brian’s body. In his last days, he ask his mom and dad to renew their wedding vows in his room, sensing as most children do, that this type of illness takes a toll on marriages. He asked the nurses to sing his favorite song, “You Are My Sunshine”. As we sat up each night with his grandparents and parents, they would ask, “Why is Brian holding on? The doctors say there is no reason he should still be alive. There must be something he still needs to do or say.”
One early morning, Brian told everyone, “I just want to go outside. I want to feel the sun and the wind on my face.” So they took Brian outside to the playground and let him sit in the sun and enjoy the wind. An hour later, Brian was gone. He was the 4th child we had seen die on the unit that summer. Our lives have never been the same.
Adam had a perfect bone marrow match. He recently graduated from Full Sail University, valedictorian of his class and now works in film writing and production. He lives close to his brother, Jeremy, who gave him life the second time. But there are 4 special families we met the summer of ’95 who will never see their children’s dreams come true. No graduations, no weddings, no celebrations. You could be one to save a life. You can BE THE MATCH. If you have any questions concerning being a bone marrow donor. Please feel free to contact me or my sons. Or contact the BE THE MATCH http://marrow.org/Home.aspx.
If ever you have ever thought you could make a difference but just don’t know how…I promise you-this is one way.
Thank you and may God Bless…