For most moms and dads, the toddler years are full of simple delights, like slobbery kisses, sticky fingers and bedtime stories. But for Stacey and Aaron Weimer, life with their two toddlers was anything but simple. Instead of going to the playground, or games of hide and seek, their children spent months in the hospital – fighting the same form of cancer.
In April 2012, when their oldest child, Madalyn, was just 18 months old, her parents noticed some spots on her belly and back. Later deemed petechaie, red and purple spots resulting from broken capillary blood vessels, the spots seemed to come and go.
“She didn’t have any other symptoms,” Stacey said. “In fact, she was the portrait of health, but her pediatrician suggested a blood test, just in case.”
The test revealed her platelets were slightly, but not alarmingly, low. Still, providers wanted to keep an eye on it with regular testing.
“A few blood tests later, we got a call saying that we needed to bring Madalyn in right away,” Stacey said.
Bloodwork revealed that their toddler had myelodysplastic syndrome – or MDS – a rare form of cancer characterized by abnormal blood-forming cells in the bone marrow. She would need a bone marrow transplant immediately.
Thankfully, providers quickly found a match – a 19-year-old college student from Indiana – and Madalyn underwent the transplant in October that same year.
“We were so relieved to find a match so quickly. It was a tender mercy that came just when we needed it,” Stacey said.
However, two weeks after receiving the new cells, Madalyn developed an aggressive form of Graft-Versus-Host-Disease, causing burn-like sores all over her body and a fever of 105 degrees that persisted for days. Even after she recovered and was discharged from the hospital, Madalyn spent the next year taking immune-suppressants to keep the GVHD at bay. Because of the risk to her immune system, Madalyn’s activity and diet were severely restricted.
“But Maddie didn’t know the difference. She was content to play with her grandparents, getting her nails painted, doing arts and crafts, and playing princesses.”
Once they were certain of Madalyn’s health, Stacey and Aaron started planning for another baby. May 8, 2015, Stacey gave birth to Aiden, a healthy little boy. The Weimer home was busy, yes, but full of the normal trappings of life with two young children.
But there were complications yet to come.
“Right before he turned 1, those same spots showed up on Aiden’s body,” Stacey said.
Aiden was diagnosed with the same cancer as his sister, and also was in urgent need of a bone marrow transplant. As with Madalyn, they didn’t have trouble finding a donor match for Aiden, but that’s where their luck ran out.
To prepare his body for the new cells, Aiden received eight days of aggressive chemo. This is standard protocol, but he suffered serious side effects from the chemo. Shortly after undergoing the transplant, his liver began to shut down and his kidneys were in failure. He wound up in the pediatric intensive care unit, where he received dialysis 24 hours a day for four weeks straight.
“That was a very dark time,” Stacey said. “It was touch-and-go. We were so afraid we were going to lose him.”
After a nightmarish month in the PICU, Aiden was released from intensive care. However, he had lost the ability to crawl or even sit up on his own.
“This boy is a fighter, and it didn’t take him long to regain all of his function and even begin walking,” she added.
It has been a year since the bone marrow transplant, yet the experience still haunts Stacey and Aaron.
“People always say, ‘you’re so strong,’ but when it comes to your children, you don’t have a choice,” Stacey said.
For now, Stacey and Aaron are grateful that their children are healthy and thriving. Aiden is all boy – fascinated by dirt bikes, motorcycles and anything with a motor – while Madalyn has grown into a plucky 7-year-old who loves princesses, pink and playing volleyball with her friends.
“They’re just like other kids, but with a very unusual cancer story,” Stacey said.
In fact, they’re among just a handful of siblings worldwide with the same form of MDS.
Until very recently, doctors believed the disease was caused by a gene mutation. Through children like Madalyn and Aiden, researchers have discovered the hereditary nature of their cancer.
“This is what it’s all about for us,” Stacey said. “If we can help kids in the future – if we can encourage other people to join the bone marrow donor registry and raise money for pediatric cancer – then we can make sense of this journey.”
Feb. 28, the Weimers will lend their time and talents to a massive fundraising effort with The Habit Burger Grill in Glendale, 7870 W. Bell Road. The Habit in Glendale – along with the other eight locations in greater Phoenix – will donate 20 percent of proceeds sales for every person who presents a printed fundraiser flyer, available for download at childrenscancernetwork.org/calendar, or on Children’s Cancer Network’s Facebook page.
All funds will benefit the Run to Fight Children’s Cancer, Arizona’s largest race in Arizona dedicated solely to pediatric cancer. The race, presented by Children’s Cancer Network and hosted by Grand Canyon University, will take place March 10 on GCU’s West Phoenix campus.
All funds stay in the community and benefit Arizona families like the Weimers through Children’s Cancer Network and Phoenix Children’s Hospital. Visit runtofightcancer.com for more information.