Parents prepare for possible end to son’s cancer treatment

By WILLIAM K. ALCORN

alcorn@vindy.com

SALEM

July 9 could be a personal day of freedom for 5-year-old Jonathan Milburn and his parents, Brian and Angela Milburn of Salem.

After removal of a cancerous brain tumor the size of a tennis ball when he was 4, Jonathan, known as Jonny, was in Akron Children’s Hospital’s main campus for 50 days, endured 30 rounds of radiation and nine cycles of chemotherapy, several surgeries and numerous MRIs.

But, on July 9, Jonny will undergo perhaps his most important MRI.

It is the one which will tell the young man, now 5, and his parents and doctors if he is, at long-last, cancer-free.

“It’s a pretty big deal,” understated his mother, whom Jonny stayed near during an interview with the Milburns at Akron Children’s Hospital Mahoning Valley. “It would be the end of treatment for that cancer,” she said.

Magnetic resonance imaging (MRI) is a technique that uses a magnetic field and radio waves to create detailed images of organs and tissues within the body.

While the Milburns wait anxiously for the crucial July 9 MRI, they spent three days on Capital Hill in Washington, D.C., June 24-26, representing Akron Children’s on Family Advocacy Day visiting with various elected officials or their representatives.

The Milburns have nothing but praise for Akron Children’s and its staff.

“If you’re going to go through hell, this is the place to do it. They are good people,” said Brian.

“We went and shared Jonny’s story and the wonderful care he received at Akron Children’s,” said Angela, who visited dignitaries while her husband took care of their other children, Aurilia, 3 months, and Daniel, 11.

“It was very busy but very good. We saw a lot of people in Congress and it was amazing to meet other people who, like us, have overcome some of the worst problems you can imagine,” said Angela.

“We shared Jonny’s story to our elected representatives so they keep the hospital and other families like ours in mind. It’s good to put a face to a number,” she said.

“They treated us like people. They listened to us. It was a great experience,” said Angela.

“It didn’t bother Jonny at all. He talked occasionally and a couple of times he took naps on congressional couches. Rep. Gonzalez (Anthony R-16th) even offered to get him a pillow,” she said.

Jonny’s first MRI was April 4, 2018.

“Originally, we thought he needed glasses because his preschool teacher noticed his eye occasionally turned in,” said Brian.

After visits to two eye care specialists, an MRI was suggested as a cautionary measure, and the tumor was found.

“Everything was a blur after that,” said Brian.

Jonny and his mother were transported by ambulance from the Akron Children’s Mahoning Valley to Akron Children’s main campus.

“Brian raced up Interstate-76 and beat the ambulance to the hospital,” said Angela.

“Parts of this was awful. The fear is real ... it’s all-encompasing sometimes,” she said.

“It was beneficial that we were told the worst-case scenario by the doctors. They were refreshingly frank,” said Brian.

“We didn’t know whether he would be able to walk or talk or swallow. But, we are very grateful it has turned out to be the best-case scenario for us,” she said.

“Jonny gave us a thumbs-up on the third day after the operation,” she said.

“His first words after Day 6, were, ‘Mom, can I have a sucker,’ but I told him he wasn’t allowed to chew. But, he said, ‘Mom I have to. Those were the best words I ever heard, bar none. It gave us reassurance he could get better,” said Angela.

Jonny starts kindergarten this fall, and he is not developmentally delayed, his mother said.

Even if the July 9 MRI reveals Jonny is cancer-free, he will still have check-ups every three months, then every six months and then annually for the next 10 years, said his father.

If the news is good July 9, the Milburn family’s lives will tilt back toward normal in some ways and change irrevocably in others.

“Our new normal was a split family. Jonny and I were at main campus for 50 days. I couldn’t leave the room, and Brian went back to work. It was very hard to be split up,” said Angela.

Brian and Angela say their priorities have changed because of Jonny’s illness.

“Both of us were working full-time trying to make a dream and get ahead. And then something like this happens and you hit a brick wall. It makes you re-evaluate things. Your priorities change,” said Brian.

“It has made us cherish each moment,” Angela said.