Peter Stenz is battling cancer for the second time in his short life, but this time, he has an ally – his pal, Stuart – by his side. The 9-year-old, who was diagnosed with a cancerous neuroblastoma tumor at 1 month of age, was recently diagnosed with rhadomyosarcoma, a soft mass tumor that develops in the skeletal muscles.
Stuart, who is a stuffed toy monkey, is part of the nonprofit Monkey in My Chair program. He came to Peter via the suggestion of Akron Children’s Showers Family Center for Childhood Cancer and Blood Disorders teacher Carla Lukens.
“Monkey in My Chair is a national program sponsored by The Cure Starts Now Foundation,” said Carla. “It was developed for children who are not able to attend school because of a cancer diagnosis. When I met Peter, I knew he would be attending school intermittently. Having the monkey at school is a constant reminder to his classmates that even though he can’t be there, he’s still connected to them through Stuart.
“In Peter’s case, he, his 3rd grade classmates and his teacher have fully embraced Stuart,” she added. “In Peter’s eyes, having Stuart in the classroom is the next best thing to being there himself.”
According to Peter’s mom, Krisann, Peter had been cancer-free for 7 years leading up to his recent diagnosis.
“We were just in for his wellness checkup with his pediatrician in April 2019 and there were no signs that anything was amiss,” she said. “Just a month later we found a lump on his forearm that turned out to be cancer.”
After surgery to remove the tumor, Peter underwent 20 sessions of radiation. He currently receives chemotherapy once a week and is more than halfway through his prescribed 42 weeks. After that he will receive 6 months of maintenance chemo.
Within 3 weeks of the start of school, Krisann said they received a truancy letter regarding Peter’s frequent absences.
“The irony is that Peter would rather be at school than fighting cancer,” said Krisann. “His health and stamina may only allow him to get 6-9 hours of school in a week where most kids get that in a day.”
To help Peter’s classmates understand his illness and why he was missing so much school, the kit he received from The Cure Starts Now Foundation includes a large stuffed monkey with a backpack that stays at school, a small monkey that stays at home with Peter, a book for his teacher to explain to their class what Peter is going through as well as a teacher companion guide and some school supplies.
“Peter got to choose his monkey’s birthday, which is 2 days after his own, and its name,” said Krisann. “Although I was fond of the name ‘Chiquita’, Peter thought Stuart John had a nice ring to it.”
In addition to the monkey kit, the school and Peter have access to an online portal that allows them to share photos, documents and videos. Students are also encouraged to send notes home to Peter in Stuart’s backpack.
“We video chat with the class,” said Krisann. “Stuart is currently learning Spanish, likes to read Curious George (of course!) and was featured in the 3rd grade Christmas program which Peter wasn’t well enough to participate in.”
Peter’s school, Tuscarawas (Tusky) Valley Intermediate School in Bolivar, held a T-shirt drive to raise money and cancer awareness for Peter and his family.
“On Peter’s first day back all the kids wore their T-shirts,” said Krisann. “Stuart also proudly wears his “Never Give Up” T-shirt with a yellow ribbon featuring Peter’s name.”
Krisann, who works as a local librarian, is astounded by the love and support her family has felt from their community.
“People who come into the library ask me about him,” she said. “His best friend, who is only 9 years old, took it upon himself to raise money by selling 400 cancer awareness bracelets.”
When Peter isn’t in the hospital, he likes to just be a normal kid who does normal stuff.
“He likes to read books, play with his Nintendo Switch and listen to the Beatles – he’s an old soul in a young body,” said Krisann.
With his chemotherapy regimen slated to be complete in May depending on his blood counts, Peter will begin his maintenance routine for 6 months.
“Because of where the tumor was located in Peter’s arm, he receives occupational therapy to work on gaining back flexibility, mobility and strength,” said Krisann. “He developed drop foot where his achilles tendon is tight which makes it difficult for him to lift the front part of his foot, which will necessitate starting physical therapy too.”
Krisann and her husband, Daniel, are taking things in stride as best they can.
“Peter has a hearing loss from when he went through cancer treatment as an infant,” said Krisann. “That we can’t correct, but these other things we are thankful that we can.”
They are also thankful to have been beneficiaries of the Monkey in My Chair program.
“Peter thinks Stuart is so cool, and he is appreciative of the opportunity to stay connected to his classmates.”
Carla says kits are mailed to her periodically at the hospital.
“When I have them in stock, I usually offer them to families with children in kindergarten through 3rd grades,” she said.
In order to receive a free Monkey in My Chair, children must currently be undergoing treatment for cancer and be between the ages of 4-11. Visit monkeyinmychair.org for more information.