This patient with a rare condition faces setbacks with determination.
By Christine Bush
Fighting pain in her arm, 10-year-old Claire Wyckoff managed to outlast classmates in a dodge ball game. When she sought treatment, her doctors and family didn't suspect the pain was more than a pulled muscle. That was until Claire's mom, Amy, noticed changes on her right side. Claire's hand was turning upward and she was dragging her leg. After an MRI revealed a spot on her spinal cord, her family spent 24 hours wondering if the spot was a tumor. After more testing, a neurologist determined Claire had an arteriovenous malformation (AVM) that ruptured.
Spinal AVM is a rare, abnormal tangle of blood vessels and without treatment can permanently damage the spinal cord. In December 2016, doctors at Children's Hospital of Michigan removed the AVM. As expected, Claire experienced paralysis on her right side following the surgery. "We had a lot of deficits coming out of the surgery," Amy says. "We knew it was going to happen, but we weren't prepared for the magnitude of it. We quickly learned what our new reality was."
Claire spent two months in the rehabilitation unit learning to feed herself and working toward walking again. She achieved 90 percent of her function by April. The Wyckoff's didn't have a lot of time to relish in Claire's success. A follow-up MRI angiogram revealed a second AVM. Amy, and Claire's dad, Glen, struggled to find a way to tell her. Do they wait? How long could they keep it a secret from Claire?
Amy says transparency won, and she told Claire she needed a second surgery and would have to start rehabilitation at square one. "She was upset," Amy says. "But when I told her we would have to start over, she looked at me right in the eyes and said, 'Then we get back to work.'" Amy describes that interaction as a defining moment. "She was a beacon for us. Her attitude has been a true measurement of how our family has dealt with a full traumatic experience," she says.
There were tense hours following the surgery. Claire couldn't move her arm or leg. But later in the day, her movement began to slowly return. For 79 days, Claire stayed in the rehabilitation unit and committed herself to regaining function on her right side. Her parents juggled work to stay with her, and Claire's older brother helped rally friends who were rooting for her. Claire should have been in fifth grade classes at this point.
To ease the separation, her teacher sent videos of classmates singing to her and included "Stick Figure Claire" in class activities. "It made me feel good, and I knew they weren't forgetting about me," she says. Her parents gave the teacher as much information about Claire's condition, surgery and rehabilitation as possible. "It wasn't like the elephant in the room," Amy says. "There wasn't a lot of what might be. We gave the teacher full reign to explain to the class."
Claire's best friend, Abby, filled in where no family member or doctor. Abby spent a lot of time at the hospital and stayed with Claire during therapy. "She gave me a lot of support because she put a lot of fun into it," Claire says. "It wasn't like just plain, boring therapy, and it was nice to have a friend with me to play games."
The girls enjoyed movie nights together, and her therapist would orchestrate a group trip to an on-site coffee shop with doctors and other therapists tagging along. "A lot of people at the hospital became family to us," Glen says. "It's been such a gift that we really got to know people more than we ever thought we could."
Claire progressed through rehabilitation and rode a horse on vacation. She joined other pediatric patients from across the U.S. at the Speak Now For Kids Family Advocacy Day in Washington, D.C., in June. While traveling the road to recovery twice was not easy, Amy says they kept looking ahead.
"Our motto is, "You can be in a pity party, but you can't stay there.' You can't stay because you're never moving forward." Claire managed to stay on track with her classmates through homeschooling and rejoined them for the start of sixth grade in September.
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