By Gisele McKnight
Jonathan Young died on a Friday, in his bed, surrounded by a dozen family members who loved him fiercely.
They had literally been by his side for the 14 months of his battle with a brain tumour — his parents, brother, grandparents, uncles, aunts and cousins.
It’s been two and-a-half years since Jonathan, 11, died. While the family attends St. David’s United Church in Rothesay, one of his summers was spent at Camp Medley, and it is there that a memorial will stand to remember the little boy who loved singing, dancing, drama and camp.
A fundraising campaign is underway to build an outdoor amphitheatre so that kids for many years will be able to sing, dance, perform and enjoy the summer camp experience, just as Jonathan did.
The idea came from retired Bishop Claude Miller, who has a long association with Camp Medley going back to his childhood. More recently on a visit to the camp as bishop, he realized the need for an outdoor facility.
“There was a production by the kids on a makeshift stage they’d built,” he said. “When I walked away from it, I thought maybe we needed a little theatre.”
Claude and Jonathan’s grandfather are friends; Jonathan’s parents, Neil and Angela, and Claude’s daughter and son-in-law are friends; and Jonathan’s brother, Adam, and Claude’s grandson are friends.
After Jonathan’s death, Claude thought a lot about him and his time at Camp Medley.
“I was thinking about how much he’d enjoyed camp,” said Claude. “We were all mourning Jonathan’s death. Then I thought maybe his family would be interested in a memorial. I thought about this for more than a year.”
He saw an amphitheatre in the Bathurst area that caught his eye, so he took a photo, and recently, while dropping off his grandson at the Youngs, he brought up the subject and showed them what he had in mind.
“Claude said, ‘There’s a project I’ve been thinking about. I’d like to do it in memory of Jonathan,’” said Angela.
“They thought it would be wonderful,” said Claude.
Next, Claude brought Bishop David Edwards to meet the Youngs and discuss the project.
“I’m very pleased that this project is going ahead. It will add yet another element to our camping ministry,” said Bishop David.
“I’m very grateful to the Youngs for their thoughtfulness with regard to the camp. I know that Jonathan enjoyed his time there and this will be a fitting memorial to him and his interests.”
Architect Greg Murdock is still tweaking the plans, but the hope is the amphitheatre will be built on a concrete foundation, and feature a central fireplace, electricity, lighting and a sound system. It will be wheelchair accessible. Above the fireplace, Claude envisions a plaque to remember Jonathan.
Its uses will include theatre, worship, campfires, skits and music. Its location will be between the last cabin and the river, facing up toward the large central playing field.
“We’d like to have it finalized for this year,” said Claude. “If it was finished by the end of June, that would be wonderful.”
Jonathan at camp
Jonathan was almost 8 when he went to Camp Medley in 2011. His mom allowed him to go because Adam, three years older, would be there the same week, as would a large group of children from their circle of friends.
The week turned out to be a lot of fun for the group, and Jonathan loved camp.
“He liked everything about it,” said Angela. “He was a very social kid. It was really nice. All 10 of them were together.”
Tuck, though, was Jonathan’s favourite part of camp. The daily ritual of visiting the camp’s little candy shop is certainly a highlight for many, and Jonathan loved candy.
Jonathan turned 10 in early August, 2013, and that’s when the headaches began. He got a Monopoly game for his birthday and had to stop playing the game because of a sudden, intense headache.
The family was on vacation in Maine a few days later when the vomiting began, accompanied by more headaches. But it wasn’t all the time. In between, Jonathan was swimming and playing like any 10-year-old.
Then they drove to Ottawa to visit a family member who had cancer, and Jonathan began walking oddly sideways, looking like he might fall over. That got the attention of his father, Neil, an emergency room doctor at the Saint John Regional Hospital.
“Neil gave him the finger test, and his pupil did something weird,” said Angela.
Neil consulted his brother, Graeme, also an emergency room physician, and they decided to go to the Children’s Hospital of Eastern Ontario.
“We were in and out in 45 minutes,” said Jonathan’s mom. “I was sort of worried, but the ER doctor downplayed it. But whatever that eye movement was, it scared me.”
On the way back to New Brunswick, the headaches and vomiting progressed to the point where they thought about stopping at the Dr. Everett Chalmers Hospital in Fredericton. But they talked to a doctor friend who told them to come to the Saint John Regional the next day.
“There was a whole battery of tests,” said Angela.
The MRI told the story, “and all of a sudden, things started happening,” she said.
The medical professionals, many of whom they knew, told them Jonathan had a brain tumor. He was taken by ambulance to the IWK hospital in Halifax almost immediately. And from that day on, grandparents, aunts, uncles, cousins and friends surrounded Jonathan and his family with love, comfort and support.
Two weeks had passed since the first intense headache, and three days later, he would undergo a lengthy surgery to remove the tumour.
“The night before, I thought, ‘I don’t know how I’m going to send this kid off to surgery,’ but he wasn’t scared,” said Angela.
After many hours, the neurosurgeon told them they’d gotten everything except a little piece.
“Neil and Graeme were thrilled,” said Angela. “They said, ‘we’re not out of the woods but we’re through the woods.’”
A meeting with the tumour team and the surgeon a few days later confirmed it was medulloblastoma, the most common cancerous brain tumour in children, and one that’s treatable.
After coming home for the Labour Day weekend, it was back to Halifax for six weeks of radiation treatment. Jonathan, Angela and Neil would leave their home in Rothesay on Sunday, and stay in an apartment Monday to Friday while their son underwent 30 rounds of treatment.
“I cried every day,” said Angela.
The first scan showed the tumour was not entirely gone. Next up was a plan for chemotherapy from December to the following November, starting at the IWK Hospital and continuing in Saint John.
Jonathan returned to school in October, starting Grade 5. Because of his treatment schedule, the school held an early Christmas concert, where Jonathan sang I’m Gettin’ Nuttin’ for Christmas.
“That Christmas, we were really on a high,” said Angela.
All this time, Jonathan had a feeding tube which ran all night and an IV pole in his room. On Christmas Eve, his parents decided he could forego the tube for one night. They watched as Jonathan went to his room, returned with the IV pole, and rolled it into the laundry room for the night.
He wanted to be free, not only of the tube, but of its reminders as well — at least for Christmas.
At March break they had a good report. But as his treatments continued, so did the ravages of both the disease and its remedy — hearing loss, hair loss, nausea, dental issues.
A trip to Toronto
Jonathan’s favourite singer was Katy Perry, and her song, Roar, was one he particularly liked. Perry was on tour the summer of 2014. The Youngs didn’t dare leave Canada, but she had a concert scheduled in Toronto.
Though Neil was reluctant, they decided to surprise the boys with a quick trip to Toronto. In July they visited the CN Tower on day one, attended the concert the next day and then flew home. It is a priceless memory the family cherishes.
In early August, exactly one year after Jonathan’s symptoms began, it was time for another three-month check-up and MRI at the IWK.
“We walked in the room and the neurologist was crying,” said Angela. “The tumour was back, exponentially.”
It was Aug. 13. From the MRI in March to the one in August, the tumour had become aggressive and huge. The doctors needed time to formulate a plan, so “we left that day not knowing anything.”
Chemo began again, but things went downhill rapidly — a drooping face, the loss of mobility, mini-strokes.
Another round of chemo was cancelled as their neurologist and nurses tried to explain, to parents unwilling to give up hope, that their son was dying.
Jonathan’s condition deteriorated rapidly. The Rev. Ellen Beairsto came to the house to anoint him. On Thursday night, Oct. 2, he grew worse.
“There were 12 of us in his room: Neil’s brother, his wife and three kids, my mom, my aunt, all of Neil’s siblings,” said Angela.
Jonathan died the next afternoon, surrounded by those who loved him the most.
Though the budget has not been finalized yet, fundraising has begun for the Jonathan Young Memorial Amphitheatre. People have been handing Neil cheques, and at least one tradesman has already donated his time. If you’d like to participate, contact the diocese by phone (506-459-1801) or visit our website: anglican.nb.ca/giving .