4-year-old battles childhood cancer while learning to live with autism

September is Childhood Cancer Awareness Month. Meet Simon, an Ohio preschooler, who is thriving just two years after he was diagnosed with both autism and leukemia.

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CLEVELAND – In June 2017, 2-year-old Simon McKenzie was a bubbly toddler who could count to 20 and loved to sing nursery rhymes.

But, by September of that same year, his parents, Mark McKenzie and Autumn Ziemba, noticed Simon had become much quieter. He rarely interacted with other children, and barely acknowledged his beloved grandparents when they arrived for his sister Maren’s 6th birthday party.

“I think you need to have him evaluated for autism,” said Simon’s grandmother, who is a former kindergarten teacher.

It was a shocking, but eye-opening, moment for the family.

“Suddenly, it all made sense,” said Ziemba. “When we stepped back and looked, we realized how much Simon had changed.”

After rushing Simon to their pediatrician, and then a same-day visit to a pediatric neurologist, followed by an examination at Cleveland Clinic Children’s Center for Autism, the diagnosis was confirmed – Simon had autism.

“It was devastating; immediately, the image you have of your child’s life has changed,” said Ziemba. “Every child on the (autism) spectrum is different, and you start wondering, ‘Will he be high-functioning or low-functioning? Will he be able to make friends? Get a job? What will be his quality of life?’”

Determined to do what was best for Simon, Ziemba and McKenzie immediately began to work with a team of specialists at Cleveland Clinic Children’s in such areas as speech, physical and occupational therapy.

In September 2018, they enrolled Simon in the infant/toddler program in the Lerner School for Autism, the center’s facility that focuses on teaching communication, play, socialization and developmentally appropriate skills.

However, just three months after Simon was diagnosed with autism, the family was faced with another life-altering diagnosis.

They learned Simon also had B-cell acute lymphoblastic leukemia (ALL), the most common form of childhood cancer.

“I remember thinking, ‘This is so unfair; he was just diagnosed with autism,’” Ziemba recalled. “How can one little kid have to fight both of these? He wasn’t even 3 years old.”

Immediately hospitalized for what would become a seven-week stay at Cleveland Clinic Children’s, Simon underwent two surgeries – the first for an emergency blood transfusion, and the second to insert a chemotherapy port. Next came intense rounds of chemotherapy, compounded by frequent temperature spikes and other conditions that left Simon virtually non-communicative.

But, Simon battled on, and 28 days after the ALL diagnosis, his cancer went into remission. While Simon continues taking daily and weekly chemotherapy pills, and other forms of chemotherapy periodically for the next three years – he remains cancer-free.

Simon, now 4, has enthusiastically embraced his autism therapies and especially loves attending the Lerner School.

“He has come so far in just over a year,” said Ziemba. “The progress he’s made is astounding. We still have a long way to go, but we’re all just amazed by him.”

Ziemba said Simon has formed a close, loving bond with his sister, Maren, and is much more open and engaging with other children and family members.

“Our goal is for Simon to live his best life, and be his best self,” she said. “And every milestone he achieves is such a wonderful gift – one that he has worked so hard to make happen. We’re so proud of him – actually, pride doesn’t cover it – we’re just in awe.”

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