Gaining on Cancer One Step at a Time

Like many 5-year-old boys, Taylor was a mix of silly and sweet who always loved to instigate tickle fights with his 7-year-old sister and shoot his Nerf guns.

But soon after Taylor’s birthday last summer, he began to experience ongoing headaches. When he woke up with a drooping face one morning, he was rushed to the emergency room and diagnosed with Bell’s Palsy. But much more was to come.

Six days later, July 31, 2018, Taylor had a CT scan that showed three tumors in his brain and two on his spine. That was the beginning of a challenging road for Taylor and his family.

Taylor soon had surgery to remove the tumors. Shockingly, surgeons found that the tumors had doubled in size during the nine days between his scan and surgery. The rapid growth was a significant clue to Taylor’s diagnosis of atypical teratoid rhabdoid tumor (ATRT), a fast-growing, cancerous tumor that occurs in the brain or spinal cord. ATRT is so rare that less than 60 people are diagnosed each year.

Taylor was treated with chemotherapy and radiation, and did well for a few months—walking, talking and playing like he used to. Yet in December, his mom, Rachel, noticed Taylor was having trouble pulling the trigger on his Nerf guns. By Christmas week, she noticed he was talking less. “On Christmas day, he only said about three words and I could see him sliding,” Rachel says. “His face droop was coming back.”

Between Christmas and New Year’s Day, Taylor continued a downward spiral. One day he stopped using his right side and by the next day he couldn’t walk. “His last words were Jan. 1,” Rachel says.

On Jan. 4, Taylor had an MRI that showed brain changes. A brain biopsy later confirmed that Taylor had brain tissue necrosis, which is dead tissue at the site of the tumor. It can be a side effect of radiation treatment.

Taylor is now fighting on two fronts: tumors and brain necrosis. Yet Rachel says the diagnosis of necrosis vs. advancing cancer was a huge relief.

A Focused Approach to Progress and Support

To help him recover function, Taylor came to Ranken Jordan Pediatric Bridge Hospital in March to begin intensive treatment with speech, occupational and physical therapies. Taylor also balances time at St. Louis Children’s Hospital, where he receives inpatient chemotherapy every few weeks.

“Ranken Jordan has adapted care and been flexible for Taylor since he is still in cancer treatment as he receives rehabilitation,” Rachel says. “Everyone here has been so kind. One of the most memorable moments was when I was talking to a nurse who had a child with brain cancer, too. We talked about all the issues we faced and just hugged each other. It was a special night.”

Teeing Off for Hope

Taylor has kept busy at Ranken Jordan through a variety of activities. “He enjoys music therapy and since he has always been an outside kid, we’ve taken walks outside and have run the bases on the outdoor baseball field at Ranken Jordan,” Rachel says. “He also enjoys golf.”

Ranken Jordan hosts a Learn to Play Golf program for patients and community members. This one-of-a-kind program provides children who may typically be excluded from participating in golf due to physical or mental limitations a chance to play. It also provides children with a sense of accomplishment and fun while learning the game of golf.

Because Taylor enjoys golf so much, he was asked to give the ceremonial tee shot at Ranken Jordan’s annual golf tournament on July 22 at Norwood Hills Country Club.

Counting the Wins

“We’ve seen improvement in him since he has been at Ranken Jordan,” Rachel says. “He can now draw his leg up and is taking steps on his own with a walker. This is what he needs.”

Taylor also recently pedaled on his own for eight seconds on an electrical stimulation bicycle. “We count that as a win,” Rachel says. “The therapists are working on getting him a bike for home to keep his progress moving forward.”

When Taylor goes home to Greenville, Illinois, Rachel is looking forward to taking him outside to their garden to pick homegrown tomatoes. “He always liked to help me in the garden before,” Rachel says. “I’m looking forward to my family being back home together again and making home-cooked meals for them.”

Through all the ups and downs of the last year, Rachel says she has kept a positive attitude for her children. “I focus on today. Seeing others’ success on Facebook posts gives us hope and strength.”