It’s been a whirlwind 14 months for the Milburn family that no one could have foreseen; a trying test of their emotions, their faith and their trust.
What started in April 2018 with a brain cancer diagnosis for their 4-year-old son, Jonny, ultimately led to a VIP trip to Washington, D.C. There, the family advocated to policy makers on Capitol Hill. The agenda included continued funding for children’s health care initiatives, including Medicaid and specialized graduate training programs for pediatric physicians.
Jonny’s journey started in his preschool class in Salem, Ohio, when a teacher noticed some unusual movement in his left eye. After 2 eye doctor opinions Jonny found himself at Akron Children’s Hospital’s Beeghly campus for an MRI.
While still in the recovery room afterward, the doctor delivered the terrifying news they discovered a brain tumor. And it had to be removed. Jonny was transported by ambulance to Akron for brain surgery.
“Our world had just been rocked,” said Jonny’s mother, Angela. “Initially you go into shock. It’s overwhelming. And you don’t know how to tell all the people who love this child what’s going on.”
12-Hour Brain Surgery
Neurosurgeon Dr. Gwenyth Hughes led the nearly 12-hour surgical procedure the very next day that removed a hockey puck-size tumor from Jonny’s brain stem.
It took a few days – which seemed like weeks – for his parents to start feeling like he would be OK.
“There were a lot of unknowns going into the surgery with it being on his brain and with so many nerves involved,” Angela said. “Before he finally spoke to us he gave us a thumbs up, and that’s become our thing now.”
Jonny spent 10 days in the pediatric intensive care unit and another 40 to start radiation and physical, occupational and speech therapies.
“He had to re-learn how to walk and talk,” Angela said.
Jonny also had a second surgery, this time to install an internal shunt. That was followed by 9 cycles of chemotherapy roughly over the course of a year.
Chemo is now in the past … whew
As of May 2019, the now 5-year-old boy finished his chemo and graduated from all his therapies. He also finished preschool and will be starting kindergarten in the fall at United Local Elementary – without any neurological deficits.
“He played t-ball this year, too, and had a blast,” Angela said. “I am a basket case when I watch him run, but I am so excited to see it because we didn’t know that he would be able to do that again.”
With his recovery going well and because of the fighting spirit he exhibited, Jonny was chosen as Akron Children’s representative in Washington, D.C. for Family Advocacy Day coordinated by the Children’s Hospital Association. There, he and his parents and siblings met with legislators and saw all the iconic capital city sites.
“Jonny and his mother Angela were remarkable advocates,” said Michael Wellendorf, government relations specialist, Akron Children’s Hospital. “Angela did a tremendous job describing the health challenges that Jonny faced. She was equally as gracious in expressing her appreciation for the care Jonny received at Akron Children’s.
“Patient advocates like the Milburns are essential to our efforts to stop cuts to Medicaid, specifically with recent threats of implemented block grant and per-capita cap funding schemes,” Michael said.
First-time in a plane … for the whole family
Getting there was half the fun for the Milburns, which included Jonny, Angela, dad Brian and siblings Daniel and Aurilia.
“It was the first time any of us had flown,” Angela recounted. “One particularly proud parent moment was watching Jonny personally tell his story to Congressman Bill Johnson. Everyone treated us great there and I feel like we were really heard.”
Watch more about their experience in this news report from WKBN on June 20.