Family perseveres through rare syndrome

Tony and Courtney Mickelson and their sons, Christopher and Bradley Hatch, have been through a roller coaster of emotions as they have dealt with the diagnosis and recovery from Christopher’s rare neurological syndrome.  Times photo by Lesley Toth

Tony and Courtney Mickelson and their sons, Christopher and Bradley Hatch, have been through a roller coaster of emotions as they have dealt with the diagnosis and recovery from Christopher’s rare neurological syndrome.
Times photo by Lesley Toth

When Courtney and Tony Mickelson welcomed their child, Christopher, into the world in February 2012, their lives were forever changed. They wouldn’t know just how drastically until shortly after he turned 1.

“He started having symptoms a week after his first birthday,” Tony Mickelson said. “It took them a month of digging to find out what it was.”

Christopher gives Dad a high-five as he plays with his parents on the floor of their rural Milaca home.

Christopher gives Dad a high-five as he plays with his parents on the floor of their rural Milaca home.

The couple knew something was seriously wrong when their child began displaying alarming behavior.

“His eyes would roll up into his head and then he started twitching like he had Parkinson’s,” Tony Mickelson said. “He was losing his coordination and balance.”

At first, doctors thought the strange behavior was attributed to an ear infection. When it was clear that wasn’t the case, they thought it was perhaps the tonsillitis.

“But it just kept getting worse. He started crawling slower and slower,” Tony Mickelson said. “You’d set him down and his eyes would roll right to the back of his head. He went limp and he couldn’t feed himself.”

Despite the challenges young Christopher has faced, his face stilll lights up with a bright, wide smile while playing with his toy trucks.  Times photos by Lesley Toth

Despite the challenges young Christopher has faced, his face stilll lights up with a bright, wide smile while playing with his toy trucks.
Times photos by Lesley Toth

“I lost him that weekend,” Courtney Mickelson said.

Finally, doctors at the Amplatz Children’s Hospital ordered an MRI, an ENT, a CAT scan and several other tests to find the root of the problem. The tests revealed that little Christopher had a cancer on his kidney called neuroblastoma, the most common extracranial solid cancer in childhood and the most common cancer in infancy.

“Me and Tony looked at each other and said, ‘Cancer? He can’t have cancer,’” Courtney Mickelson said. “They were testing for everything. Everything was coming back negative, negative, negative. When they diagnosed cancer, we were kind of relieved because they said they could get rid of it.”

The cancer was removed just three days after the Mickelsons were told their child was seriously ill. Without having to undergo a single chemotherapy treatment, Christopher was declared cancer-free.

“I’m glad it happened so fast, because you don’t even have time to think about it,” Courtney Mickelson said.

What happened next wasn’t so common. Although the cancer is fairly common and reasonably simple to treat, Christopher developed a rare neurological disorder called opsoclonus-myoclonus syndrome that developed due to the tumor on his kidney. While Christopher continues to receive regular tests to ensure he remains cancer-free, he is still struggling to recover from the syndrome, sometimes called “dancing eyes.”

“So now we’re just dealing with this OMS,” Courtney Mickelson said.

Christopher undergoes IVIG injections into a small, plastic tube that was inserted in his chest near his clavicle, or collarbone, that connects to his jugular two days a month. He also receives the drug Rituxan to keep the cancer at bay monthly. A physical, occupational and speech therapist works with Christopher twice a week to help him regain his balance and mobility.

His parents said Christopher is doing much better now than he was in the beginning, but his head still shakes, he struggles to grasp his toy bus and fire truck, and his big, brown eyes still dart from side to side from time to time.

“The wobbling, the falling over – all that I can handle,” Courtney Mickelson said. “But it’s the eye rolling that is really scary.”

The Mickelsons met with another Minnesota family dealing with the OMS diagnosis in their son, Jonathan Tell, June 23. Considering the syndrome occurs in less than 1 in 10 million cases per year, the chances of meeting another family going through the treatments in the same state are slim.

“We’re on such different treatment plans, but everything is so much the same,” Courtney Mickelson said. “It’s interesting to compare stories.”

Courtney Mickelson said her oldest son, Bradley Hatch, 18, has been a wonderful big brother throughout the past several months.

“This guy’s been amazing,” she said. “He does anything he can that he can. He had a hard time seeing his little brother at the hospital.”

Hatch said the most difficult aspect was wanting to help but feeling powerless.

“It was shocking,” Hatch said. “And there was nothing I could do. It was tough watching it.”

Moving forward, Christopher has at the minimum another six months of treatment. In the long term, he may experience limited physical mobility, lasting twitches and he also runs the risk of having developmental delays and learning disabilities, such as ADHD.

“It may take him a little longer to learn stuff,” Courtney Mickelson said. “When you move, you don’t have to think about it. When he moves, he has to concentrate on everything. We had to reteach him how to take a bottle.”

The Mickelsons are pleased with the progress he’s made so far, and are hopeful that Christopher will continue to improve.

“What’s getting us excited is his eye movement,” she said. “His eyes have been so much better in the last week.”

Although the family carries decent medical coverage, at $10,000 a dose for the cancer medication and $5,000 a dose for the injections, even the best plans require substantial out-of-pocket expenses. The Mickelsons are organizing a benefit for Christoper Sept. 21 at the Foreston Fire Hall to help offset the costs of his treatment. Watch the Times for further updates.

Through it all, the family said Christopher has been a trooper.

“He doesn’t even cry anymore when he falls,” Tony Mickelson said. “He just smiles.”

“He’s scared. He throws temper tantrums because he’s frustrated,” Courtney Mickelson added. “But he’s the strong one.”

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