For a pediatric brain tumor patient, one of the most celebrated measures of success is becoming a survivor. Amelia Hartong of Massillon became a survivor at just 1-year-old and now, age 5, she reminds us all that the best measure of success is happiness.
“Amelia is thriving, and we celebrate it, but her success and another child’s success are going to look different and that’s okay. I think parents need to remember that forward is a pace,” said Melanie Hartong, Amelia’s mom. “Amelia’s determination is one of her biggest assets. She’s not okay with sitting out; she wants to be involved so she finds her own way to do it. It might take her longer and it might look different, but she finds a way.”
Amelia has always found a way to push forward thanks, in part, to her care team at home and at the Showers Family Center for Childhood Cancer and Blood Disorders at Akron Children’s.
After a 4 month wellness visit, Amelia’s parents learned her head was measuring larger than most. Weeks later, scans revealed a large tumor blocking cerebral fluid from circulating in her brain. She was diagnosed with embryonal neoplasm.
At 5 months old, Amelia was diagnosed with embryonal neoplasm, a quick growing brain tumor. Although brain tumors are the most common solid tumor found in children and adolescence, Amelia’s tumor was extremely rare so her treatment plan needed to be aggressive. She had 2 craniotomies, underwent heavy doses of chemotherapy and had dozens of sick days, setbacks and some really scary moments. After her second bone marrow transplant, Amelia’s little body called for a time out.
“She never got a break in her treatment and we were afraid continuing on would take her from us,” said Melanie. “During those really tough days, I would remind myself that there’s someone else going through a harder time than this and to be thankful for her and what we had… Throughout treatment, we always tried to look at the small, positive things like she smiled today instead of ‘why is this happening to us.’ I think it’s important to remember that being positive is a choice.”
Big brother Blake has been a constant source of support for Amelia. He encourages, motivates and celebrates her when she achieves new goals.
For a private family like the Hartong’s, talking about their journey and how their child is thriving when not everyone defines success the same way can be challenging.
“Amelia is progressing, but at a different pace because she has extra things to overcome along the way like hip surgery, hearing loss, gross developmental delays and g-tube feedings,” said Corey Hartong, Amelia’s dad. “We celebrate things like relearning how to stand or licking salt off a chip because she puts a lot of work into accomplishing these things. She recently started saying ‘I love you’ and it’s music to our ears!”
Amelia continues to receive care from specialists at the Akron Children’s Hospital Brain Tumor Program. Here, a variety of disciplines − such as neurology, neuro-oncology, neurosurgery, neuro-psychology, endocrinology and physical and rehabilitation medicine – come together during one appointment to monitor Amelia’s progress and address any short- or long-term effects from her treatment.
“Amelia has a lot of follow-up appointments, so to have 5 all in the same day is beyond helpful. It also helps us avoid appointment fatigue that many families struggle with,” said Corey. “Amelia still has a lot of therapies she goes to regularly, but the expertise and the people at Akron Children’s is what keeps us coming back.”
Sitting up on her own, building strength in her legs and learning to lick salt off chips are all signs Amelia is thriving.
Although the frequency or type of care Amelia receives at Akron Children’s may change over time, her health will continue to be monitored by the Brain Tumor Program until she’s an adult.
“Even after treatment, patients can still experience significant side effects from the therapy they received. These late-effects are not always just physical in nature and can affect multiple aspects of the patient’s life. By working with a team of specialists, our program helps address all aspects of the disease process,” said Erin Wright, MD, director of neuro-oncology at Akron Children’s. “Our hope is that through our comprehensive approach, we can better identify patient changes, improve communication between multiple disciplines and make it easier for families to receive the best care for their child all in one clinic.”
As Amelia continues to gain strength and skills, new experiences are met with excitement and optimism. She’s making friends and actively learning with her peers at preschool and enjoys swimming with her family.
“If you dwell on the negative, it robs you of experiencing the good in today,” added Melanie. “Our goal, as a family, is to help Amelia be the best she can be. If she’s happy and accomplishing her goals then we have succeeded.”
Amelia’s family is thankful for the constant care and support of Amelia’s Akron Children’s care team.
