Six months ago, Jonny Milburn was running around with his classmates at Winona United Methodist Preschool without a care in the world. When his preschool teacher Mrs. Jenn noticed his left eye seemed to be turning in every once in a while, the Milburns immediately made an appointment to get it checked out but figured they had nothing serious to worry about.
The first eye doctor referred the Milburns to another eye doctor, who then said Jonny needed an MRI just to rule things out. So the Salem family made an appointment for a MRI at the Akron Children’s Hospital in the Mahoning Valley. Little did they know that this April 4 appointment would begin an 18-month cancer battle for Jonny.
MRI reveals a brain tumor
To everyone’s surprise, the MRI showed Jonny had a golf-ball sized tumor near his brain stem and was suffering from hydrocephalus, a buildup of fluid and pressure in the brain. Instead of enjoying a leisurely breakfast at IHOP, he was rushed by ambulance from the Radiology Department at Akron Children’s Hospital’s Beeghly campus to the Pediatric Intensive Care Unit in Akron. There, the family was introduced to pediatric neurosurgeon Dr. Gwyneth Hughes and pediatric neuro-oncologist Dr. Sarah Rush from Showers Family Center for Childhood Cancer and Blood Disorders.
Jonny, Dr. Hughes told his parents Angela and Brian Milburn, would need to have an emergency surgery to remove the tumor the very next day. There would be no way of telling if the tumor was malignant until after it was removed during the surgery. The results of the surgery would take about 10 days.
“That was a long day and really hard to explain to a 4 year old and we didn’t want to show a lot of emotion in front of him,” said Angela. “He still wanted his IHOP and was really upset about missing out. I curled up with him in his hospital bed and we watched movies all through the night. The team at Children’s was phenomenal. They were there with tissues, hands, shoulders, whatever we needed.”
There was a reason the surgery had to take place so fast. Jonny’s life was in danger.
“We had to act immediately because the pressure caused by the hydrocephalus is very dangerous and can cause long term complications,” said Dr. Rush. “The brain stem can herniate and get trapped from the pressure. If the brain stem gets compressed, it can cause death.”
Tumor removed, treatment beings
Jonny made it through the night and hopes were high as Jonny emerged from the 9-hour surgery the next day.
“Dr. Hughes told us she was able to get 99.9 percent of the tumor out,” said Angela. “But she said it looked like she had been able to totally remove the tumor on the post-operative MRI, but she wanted us to know she had to leave a sliver of the tumor inside in order to not compromise his cranial nerve. Jonny also has a shunt now, something he’ll have to have for the rest of his life.”
The Milburns then had to play the waiting game as the tumor was carefully examined for cancer by the pathology department. They also would have to wait and see how the surgery would affect Jonny’s abilities, including his speech and his ability to walk.
The pathology report from the tumor biopsy soon came back malignant with the diagnosis of medulloblastoma, and Jonny soon began treatment with radiation. He received 30 radiation treatments and has just recently started the third of 9 courses of chemotherapy. His treatment will continue for total of 48 weeks.
When Dr. Rush sat down with the family to explain the biopsy results, it was an especially tense moment for the Milburns in what had been a whirlwind week.
“Dr. Rush sat down with us. She said she had good and bad news,” said Angela. “The bad news is that Jonny’s tumor was cancerous. The good news is that it is very treatable and has a high survival rate.”
According to Dr. Rush, 80-85% of the kids diagnosed with this form of cancer survive and the relapse rate is very low.
“It is the most common malignant cancerous tumor of the brain that occurs in children. It unfortunately happens pretty frequently,” said Dr. Rush. “We probably get about 5 or 6 cases a year here at Akron Children’s. It is often a very successful treatment, but it is a hard road for the patient, because they have very little time to recover from brain surgery before undergoing radiation and chemotherapy. It is really tough.”
Jonny spent 50 days hospitalized as he underwent radiation. He had to learn how to talk, eat and walk again.
“Jonny has dealt with this better than anyone else in the family,” said Angela. “He has no preconceived notions of what cancer is or what it means. To him, cancer was just another word. This has been a good opportunity to show what we are capable of handling.”
Jonny recovers like a champ
Aside from losing all his hair from radiation treatments and occasionally stumbling while running, Angela says you would never know Jonny is well into his second chemotherapy cycle. He loves football and watching big brother Danny play for the United Eagles team. He loves visits from the Doggie Brigade and playing with his 2 puppies, Scamp and Scruffy. And he enjoys his therapy at the hospital, where therapists push him to regain his skills in a fun and engaging manner.
“He has been quite resilient,” said Dr. Rush. “Kids his age, that’s how they roll. I always tell parents that you’ll never believe me when I tell you how well these young children can tolerate so much.”
He started back at preschool in mid-September and loves being back with his friends and teacher. He’s a big superhero fan and currently carries a backpack featuring Black Panther. When he’s not able to be at school due to chemo infusions and physical, occupational and speech therapies, he has a special stuffed animal to put in his chair to remind other students that he’s still part of the class.
“We want to keep kids at home and in school as much as possible,” said Dr. Rush. “When he is here at the hospital getting treatment, he has a monkey in his chair. That way, the other kids in his class remember that Jonny is supposed to be there when they see the stuffed animal. It’s not just this empty desk.”
Looking toward the future
And Jonny has an exciting adventure coming up in March.
“The other day he told me, ‘Mommy, you have to eat more so your belly can get big so we can have another baby,’” said Angela. “He’s been granted a wish from the Make a Wish Foundation and we’ve been talking about what wish he should ask for, so he said, ‘Don’t I get a wish? I wish for a baby!’”
What Angela didn’t know then she knows now. She’s pregnant with baby No. 3 due March 17, and Jonny couldn’t be more excited about that news.
“It was like he did actually get his wish granted,” laughed Angela. “I was only 2 weeks pregnant at the time and had no idea that I was pregnant then!”