Boy's Rare Illness Leads to Challenges, Hope

Filed under: In The News

Kris had always dreamed of having a large family and by the time she was 30, she was living that dream. She and her husband Kurt were parents to four children – Avery, Aidan, Jonah, and Ethan – all under the age of six. But life was not perfect for this Nebraska family. In March of 2008, her husband was out of work and her 2-year-old son, Jonah, was challenging her as a parent. Jonah was extremely active and Kris was finding it increasingly difficult to discipline him. His behavior was a constant source of stress and deep down, she wondered if there was something amiss. "I thought maybe ADD," she said.

But Jonah's hyperactive behavior changed to lethargy. When he started sleeping a lot and complaining of stomach aches, Kris began to suspect something more serious. On the day after Mother's Day, her worst fears were realized when Jonah began having seizures.

Thus began a journey through a parent's worst nightmare. Doctors found a tumor the size of a softball in Jonah's brain and ordered surgery to remove it the very next day. Before the procedure, Jonah received last rites and the family braced themselves for the possibility that he wouldn't survive.Their pain turned to joy when Jonah came through the surgery with flying colors. Within 24 hours, Jonah's eyes were following his father around his hospital room and he was responding to voices. Five days later, Jonah was home, walking and talking like nothing had ever happened; the only evidence of his ordeal was the scar on his head.

Six weeks later, Jonah had a follow-up MRI and the news was devastating. The tumor was growing back at an aggressive rate. Jonah was diagnosed with a malignant glioneuronal tumor, which is rare in adults and practically unheard of in children. Jonah needed more treatment and Kris and Kurt needed a second opinion. They were referred to St. Jude Children's Research Hospital and within days, found themselves in Memphis bracing for another risky surgery on their little son. Again, Jonah came through the surgery like a champ and doctors were able to remove 60% of the tumor. Jonah is currently undergoing a six to nine month regimen of chemotherapy.

While her husband and other children remain back home in Nebraska, Kris lives with Jonah in the Target House in Memphis. One week a month, Kurt's mother takes over caring for Jonah so Kris can return home to reconnect with her family. Jonah's illness and her absence is hard on her kids, but she is honest with them about what is happening. "I want them to know that the reason we are here is to try to save Jonah's life," she said.

In addition to her own faith and the outpouring of support of friends and family, Kris credits the care and comfort she has received at St. Jude with helping her through this difficult time. "When I first got here, I was walking around with a chip on my shoulder. I was depressed," she said. Her depression turned to determination as she realized that coming to St. Jude was a gift. "They are about more than just your child – they care about your whole family dynamic. We are getting this lease on life through the treatment we have received here."

Despite Jonah's uphill battle, he is handling his chemotherapy well and Kris is hopeful about his future. The tumor has stopped growing and is actually decreasing in areas. What's more, Kris can see signs of her son's improvement. "He was anti-social before, but now he plays with other children, watches television and likes to be read to," she said.

As Jonah continues to fight for his life, he and his family look to the future and the promise of a new life. Shortly before leaving for Memphis, Kris discovered she was pregnant with her fifth child. While the timing may have seemed less than perfect, Kris now believes her pregnancy was meant to be. "Jonah loves babies. Nothing happens without a reason and I believe we are pregnant with this baby because there is no kid on the face of the earth who loves babies more than Jonah."

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Start by teaching him that it is safe to do so.