La Crosse, WI (WXOW) Every year our local Children's Miracle Network Hospital spotlights 5 kids who've battled an illness or overcome an injury. They are called the CMN hospital heroes. Our La Crosse hero's disease could have gone undiagnosed if not for his mother's memory.
Over the last year nurses have started hundreds of IV's on Jonas Kuegler, but when you're 4 years old every poke is as painful and scary as the first. Jonas' mom Kristy feels her son's pain in her heart. Every three months she nervously watches as doctors sedate her baby and scan his tiny body for signs cancer. "I'm not a fan of the week leading up to the scans until about 3 o'clock on scan day.", say Kristy.
Cancer wasn't a part of the Kuegler's vocabulary until last February when Jonas came down with a cold that just wouldn't go away. Kristy thought she might have known what was wrong. "I remembered about a month before he stuck a raisin up his nose and I pulled it out. But; you hear stories where a piece gets left behind in the sinuses so it can't get better."
When doctors looked inside the then 3 year old's nose they didn't find a raisin, but rather a tumor about the size of a pea attached to his septum. Kristy says she will never forget when the doctor delivered the news. "She sat down and said I'm really sorry to tell you this, but your son has cancer. Not the words I wanted to hear."
Rabdomyosacroma is a rare, childhood cancer of striated muscle. It's treatable, but the path to recovery is long and painful. Jonas started his treatment that next day. His day Chris spent the night with his son in the hospital "There was just that time sitting next to his hospital bed, looking at how small he was. He's 3 years old, and trying to reconcile why things like this happed to little kids."
Doctors removed much of Jonas' tumor, but because of its location, couldn't get it all. Jonas received 24 weeks of chemotherapy. He lost his all of his hair and most of his energy. Then came 20 days of radiation. Unable to lay still, Jonas had to be sedated for every treatment. The radiation was so powerful he developed mouth and throat sores that bled. "He would take a bite of food, something simple like bread and scream in pain, and then chew and swallow screaming in pain."
The Kuegler family says Jonas' positive attitude helped them get through the most difficult days of his treatment. As did their faith and support they received from family and friends, and Children's Miracle Network Hospitals. CMN Hospitals staff provided the Kuegler's with food vouchers during Jonas' numerous hospital stays. Staff also made sure Jonas knew they were pulling for him. "They were able to make it a much better experience because they always had something to liven up the room for Jonas; to let him know somebody cared and was thinking of him."
Today Jonas is in remission, but not out of the woods. Over the next two to three years doctors will check and recheck his body for signs his cancer has returned. It's been six months since Jonas' last treatment and his doctors says he looks good.
Just like his hair, the energy and personality Jonas had before cancer are coming back. "Now he's 50 million times more energetic and bouncing off the walls. And; I'm so happy about that", say Kristy. Needle pokes and IV's are now few and far between and Jonas has time to play.
Children's Miracle Network Hospitals raise money for kids like Jonas year round. On top of meal vouchers, the charity also offers families gas vouchers, and helps them pay for medicine and equipment not covered by insurance. For more information on how you can help CMN Hospitals help area kids go to www.gundluth.org/cmnhospitals
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