Don and Kinslee: Courageous winners in the game of life

8/20/08 Chatterbox Betty Kaiser In the game of life, good health is more important than winning a gold medal at the Olympics. Fighting and winning the battle of serious health challenges is a daily affair. Life is the reward. Don Burke is one tough dude. Ordinarily a healthy guy, he developed a skin problem eight years ago that defied diagnosis. It took four long years to be diagnosed with Cutaneous T-Cell Lymphoma (CTCL). Malignant T-Cells were circulating in his blood and had made their way to his skin irritating it exponentially. This lymphoma is so rare that one specialist told him he had never seen a case of it in 30 years. The disease manifested itself with relentless head-to-toe itching, peeling, swelling and orange skin that would fall off. An upbeat kind of guy and facing the unknown, Don said, “Some days are hard and real discouraging but faith and hope keep me going. It’s just a matter of time before I beat it.” Many treatments were tried and all were unsuccessful. A bone marrow transplant was his only hope. Two matched family members were unable to donate but an anonymous donor was found through the Worldwide Database. Don received the life giving transplant on November 17-18, 2005, at the Seattle Cancer Care Alliance. Don’s battle continued as he suffered from the chemotherapy side effects and other debilitating situations. In 2006 he was admitted to the hospital with pneumonia, renal failure and sepsis. He was put on a ventilator, spent five weeks in the hospital and then rehab to get strong enough to return home. Later, cataracts developed. Ann Burke (Don’s wife) was close by his side at all times. Thanks to an understanding employer she was able to continue to work while spending time by his bedside. “I think we were as blessed as we could possibly be in such a situation. We had support from family, insurance, our church and my employer who willing accommodated my time away from the office,” she said. As of today, Don is 1,005 days post bone marrow transplant and the Burkes are happy to report that this spring he finally started to feel human again. His skin is less fragile with light and dark patches and no more itching! He showers and dresses on his own; spends days tinkering in his shop and precious time on his riding lawnmower. Current goals are twofold. First, to get off immunosuppressant drugs that are used to control his new immune system. The new immune system can be over-zealous which leads to graph vs. host disease. The second is to get him off pain medicine. This will be difficult as long term steroid use has broken down his bone mass, causing pain. The doctors are also on the lookout for graph vs. host disease and secondary cancers. I asked what kept them going all these years and if they were ever tempted to give up. “Faith kept us going,” Ann said. “What other choice did we have? We had to do (something) to get rid of that incessant itching. We never worried that everything wouldn’t be okay.” The couple credits much of his post-transplant success to regular contact with Don's follow-up team in Seattle and to Dr Gary Lee, their Eugene oncologist who recently lost his life in an accident on Mt Hood. Their advice for others in similar situations: “Pray. Be your own healthcare advocate. Know your options. Ask a ton of questions. Talk to anyone you think can help. Use the Internet for research and be assertive. No one knows (the patient) like you do.” Little Kinslee Rounsaville is another warrior. She has been fighting severe health issues for all of her nine years. This summer she was looking forward to her last open heart surgery. Her chest has been opened three times and she has faced down nearly 50 surgeries for a myriad of other ailments due to VATER Syndrome. Her entire family was ready to breathe a sigh of relief and on July 5, everyone headed to Doernbechers in Portland. Optimism prevailed. Parents Lisa and Eric, sister Kaiden and all the grandparents had been through this before. Grandmother Tracey Peterson said, “We should be home free after this.” Unfortunately, the surgery didn’t go as hoped or planned. In fact, it didn’t go well at all. Kinslee’s organs are not connected or positioned in her body like the average person’s and she has scar tissue to boot. Sadly, when the surgeon opened her chest, her bowel was cut, allowing bacteria to enter her chest cavity. The actual heart surgery only had a two-percent chance of not working but it was never started. Kinslee spent the next 16 days tethered to tubes and machines recovering from other problems. She was very weak. Her bruised chest was constantly drained and her problematic esophagus wouldn’t allow her to eat. Family and visitors came and went during this recuperation phase, bringing cards, flowers, gifts, comfort and good cheer. Twin sister Kaiden was the “go to” kid, running errands and helping everyone. Finally, Kinslee was released on July 21 to gain strength for yet another operation. The family joyfully headed home. In the meantime, doctors are looking into other hospitals that deal with children’s serious medical issues. Next month she has a cardiologist appointment that hopefully will give them some direction. Stanford or Michigan are both possibilities and have received her chart notes. This month, in spite of serious recuperative challenges, the girls are enjoying a bit of summer fun. Grammy Tracey is scurrying to get the pool ready after the doctor released Kinslee for swimming. Last week, Kaiden decided to cheer her sister up with a Hawaiian party. And just in case you’re looking to buy some eggs next year, the girls have 25 chicks about ready to hatch! Life on the edge of pain and setbacks takes courage. Don and Kinslee are courage personified. They are winners in this game of life. Betty Kaiser’s Chatterbox is about people, places, family, and other matters of the heart. Contact her at 942-1317 or via e-mail — bchatty@bettykaiser.com