Family of Terrell Baumler reflects on 10-year anniversary of his life-saving bone marrow transplant

Terrell Baumler

by Kelli Boylen
freelance writer

Ten years ago, then five-and-a-half-year-old Terrell Baumler, the son of Jan and Kenny Baumler of Waukon, underwent a bone marrow transplant to save his life. Today, thanks to those efforts, the teen is in high school and enjoys a number of activities.
When he was just 22 months old in June of 2001, Terrell was diagnosed with an aggressive form of brain cancer. After the tumors were surgically removed, he underwent chemotherapy and radiation. The brain cancer went into remission and the Baumlers were able to resume a mostly normal life for a while.
When Terrell was five and a half, in December of 2004, red marks were discovered on his belly, which looked like pinch marks. He felt fine, but there were more and more of the marks over the next few days. After several doctor visits it was discovered he had leukemia, a very unfortunate side effect from the chemical used to treat the brain cancer.
In 2005 Terrell was hospitalized for 190 days. He received a bone marrow transplant March 29, and was hospitalized until the end of September. Prior to the transplant he had aggressive chemotherapy in his spine to eliminate as many leukemia cells as possible, and also had blood transfusions.
His road to recovery following the transplant was a very long one. He had to be on a ventilator when he was suffering from mucositis (he had sores and ulcerations from his mouth all the way through his digestive tract). He was on the ventilator for 18 days, during which Terrell also experienced renal failure and had to have dialysis.
He suffered paralysis on one side of his body, which eventually went away, but he had to learn how to swallow, eat, walk and talk again. “He actually had to relearn to walk several times,” says Jan.
Terrell also suffered from a bacterial infection which caused a lot of complications. In addition, he came down with GVH of the lower gastrointestinal tract and skin. GVH stands for Graft Versus Host, and is a disorder in which the donor T-cells begin to attack the host cells because they do not recognize them as being part of the body. Terrell also had problems with the lining of his bladder and stomach, which were also side effects of the intense chemotherapy treatments he received when he was younger. Jan says, “He ended up with almost every negative side effect possible from the initial treatment of the brain cancer.”
He was first released from the hospital July 14 of that year, but was readmitted within eight hours because of a fever. He had to have his gallbladder removed the following week, but then there were also complications from that. He was released again August 17, but was readmitted once again four days later.
Once he finally was released from the hospital for good, the family stayed in the Ronald McDonald House because he still needed daily blood work. Eventually the amount of lab work needed dwindled to every other day, then twice a week, etc.
On day 180 after the transplant, Terrell had a bone marrow biopsy, spinal tap and MRI of the brain. The family received the great news that his bone marrow showed no evidence of leukemia, his bone marrow cellularity was 80 percent, his spinal fluid was clear and free of cancer, and his brain cancer was still in remission. Terrell and his family finally came home September 27.
Terrell was in and out of the hospital several more times in the following months, but eventually the family was able to be together at home with Terrell, and his younger brother, Emmanuel.
“Sometimes, looking back, I wonder how we did it,” Jan says, recalling working 12-hour days at her job Monday, Tuesday and Wednesday and then driving to Minneapolis, MN to be with her son until Sunday night, when it all started over again. “But we couldn’t let cancer win, and you can’t let the bills keep you from living. Everything always worked out in the end. Friends and family helped us out a lot.”
She adds, “You just deal with what is placed in front of you and after a while you don’t know any different.”
The end of March of this year marked the 10-year anniversary of Terrell’s bone marrow transplant, and he is classified as “cured” of the cancer and leukemia. He still experiences seizures, which are also a side effect of the original brain cancer treatment. Anti-seizure medication is taken to combat that lingering reminder. He also sometimes has memory issues.
He still has lab work done regularly to make sure his organs are all functioning normally, as the original chemotherapy can have further long-term effects on his body.
Jan says they have made it a point as Terrell has gotten older to make him part of his medical care as much as possible. Terrell does his own self-care, and likes to be as independent as any teen. He helps with housework and does some cooking. He enjoys swimming and loves to watch football. He argues with his brother, like most siblings do.
Terrell is currently a freshman at Waukon High School. He is on Student Council and is in FFA. He helps with Boy Scout events, even though he is not a member, and he likes to attend his friends’ sporting events. “The school kids are good to him,” she says. “In fact, when he first went back to school when he was young the girls were so protective of him that they had to be asked to back off a bit.”
Jan laughs and says that no matter where they go it seems that Terrell will run into people he knows, sometimes even when they are in Decorah or La Crosse, WI. He also enjoys his time at Camp Winnebago. “It seems like he is never home,” his mom says.
And, he loves driving lawn mower. This winter he even got to drive the mower in the snow thanks to chains on the tires. Even when he got the mower stuck in the ditch, he was undeterred; as soon as it was pulled out for him he was back on it ready to go once again.
Now, Jan says, she sometimes even forgets from time to time that he had cancer. She doesn’t see him as her son with cancer, but rather just as one of her sons. “I try to hold him accountable, just like any other parent. He doesn’t feel sorry for himself and doesn’t expect anyone else to,” she explains.
She adds that it seems hard to believe that ten years has already gone by. “Time never seemed to move when we were going through everything, now it goes so fast,” she shared.