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JAMES STORY
“I have bad news. Your son has cancer.” I will never forget that long day in June 2003. While I can explain all of the medical details, I cannot begin to explain the terror I felt in my heart that day. Half of me believed that the lab must have made a mistake. The other part of me feared that our five year-old son was going to die.
A week prior to that news, our son, James was hospitalized for stomach pain. He had always been a healthy, active child, and his complaints of pain were very unusual for him. At first the doctors thought that he had a virus, but later discovered a blockage in his intestine. He had surgery to remove the blockage, and five days later, we received the news that the golf-ball sized mass was a cancerous tumor. James was diagnosed with Burkitt’s lymphoma, a very rare and very aggressive cancer.
James received chemotherapy, and in August and September, CT and PET scans showed him to be cancer free. We continued to get good reports from scans and check-ups until November 4th, when James was hospitalized because he was having difficulty breathing. After a CT scan, we were informed that his cancer had returned. The news was even more heart-breaking the second time.
After more chemotherapy treatments, James was again cancer free. However, doctors told us that he needed a bone marrow transplant, or his cancer would return. In January 2004, James received massive doses of chemotherapy and radiation to “kill” his bone marrow. His three year-old sister, Sarah, then donated the stem cells that would save his life. Each birthday that he celebrates now will be a gift to him from his brave sister.
On January 8, 2006, we celebrated James' two year anniversary. He continues to remain cancer free.
Journal
Sunday, January 21, 2007 9:31 PM CST It's that time of year again...Please pass this on to all you know.
This column is from last year, with a few updates. I can't say too much more on the topic.
Mark your calendar for January 28. It's the second annual "Tyler Day."
Most of you never met Tyler, but let me tell you what I remember about him. Tyler was diagnosed at age 2 with Rhabdoid tumor, a very rare form of cancer. So rare, in fact, that doctors don’t really have a successful cure for it.
Tyler’s parents approached their son’s illness with courage, and their positive attitude rubbed off on their son. Tyler never considered himself sick. They made his trips to the hospital for his treatments fun, and he enjoyed seeing his friends there and playing in the playroom. In church, he seemed surprised to hear his name in the prayer requests and would exclaim, “That’s me!” when he heard it.
I met Tyler and his parents when Tyler was 4. He and my son, then 5, were both patients at Carle Clinic. At that time I didn’t realized how sick Tyler was. Some of the kids and parents from the clinic attended an Illini football game, and I got tired watching him run up and down the bleachers with the energy of a normal preschooler. Only his bald head gave him away, and from behind, I had a hard time telling him apart from my own son.
We saw Tyler in clinic and at the hospital a few times after that. He always had a smile on his face. I remember him acting silly with the Child Life Specialist and playing with Thomas trains.
When we went to St. Louis for my son's transplant, I kept up-to-date with Tyler through his web site. I knew that his condition was very serious, and there was likely no cure in his future. On January 28, 2004, Tyler died.
One would expect his parents to withdraw and grieve their loss privately. Instead, Tyler’s mom has organized fundraisers for other families, visited sick kids in the hospital, participated in interviews with the media to raise awareness for childhood cancer, and convinced her famous brother-in-law, Doug Wilson, to remodel Ronald McDonald Houses in Tyler’s memory.
In one of the interviews Tyler’s mom did, she told a reporter that her worst fear is that “people will forget” her son. Maybe she thought that since he didn’t live a long life on earth, he didn’t have time to meet a lot of people and leave a lasting legacy. But I think that Tyler touched more lives in his five years than most of us will touch in a lifetime.
So, in memory of our beautiful friend, Tyler, and in honor of his brave parents, I would like to issue a challenge to my readers. On January 28, I would like everyone to do something in Tyler’s memory. Donate blood. Sign up to be a bone marrow donor. Tutor a child at school. Donate a Thomas the Tank Engine to the Pediatrics department at a local hospital. Make a donation to CureSearch or Make-A-Wish. It doesn’t have to be big, just do something.
Why would I pick the day of his death to honor his memory? I’m sure that Tyler’s parents have beautiful memories of his birth and his birthdays. I want to give them something positive to focus on on the anniversary of his death. I want to let them know, on this day in particular, that even though Tyler is not here on the earth, that we will never forget him, and that he continues to touch people’s lives.
If you choose to take my challenge, please email me. Last year, I made a scrapbook of all the things people did and presented it to Tyler's parents. It was a beautiful tribute, and I would like to do that again this year.
What will you do to make a difference?
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