A few weeks ago I ran into a running buddy at the IceCaps FanFest at Mile One Centre. Joy Hart was there with her two sons, Matthew, 11, and Jack, eight. I had only met her boys a couple of times, so I didn’t notice anything different about either of them.
A week later, when I saw Joy again, she told me that FanFest day was the first time Jack had walked without a walker or a wheelchair since last October. She recounted the journey her family has taken since June 2012 to get Jack back on his feet. Here’s the story of a family who went to great lengths to ensure one member bounced back from a scary illness.
Just before school got out in 2012, Jack, who was then six years old, was noticeably limping.
“His left foot was turning in. … He said he didn’t fall or anything. … We brushed it off for a few days,” says Joy.
Then, after spending a few days away from his mother, he came home on June 10, 2012 and the limp was much more pronounced.
“I noticed a big difference in him,” says Joy. “We took him to his family doctor (Jeff White) who sent us to the Janeway right away for an X-ray. We got a call to come see Dr. White on Tuesday afternoon and he told us that Jack had a rare condition called Perthes disease. We had never heard of it. It was all new and overwhelming.”
Perthes is a form of juvenile arthritis characterized by interrupted blood flow to the hip, causing the head of the femur to break down and the hip joint to become intensely inflamed. It’s not surprising that Joy or Jack’s father, Chad Hart, had never heard of it. It is a rare disease affecting approximately one in 1,200 children, the overwhelming majority of whom are boys.
After Jack’s diagnosis things were a bit of a blur for Jack and his family. The following week, Jack saw orthopedic surgeon Dr. Robert Deane at the Janeway.
“Jack went from playing hockey, soccer, baseball, riding his bike to zero activity except for swimming and physio at the Janeway three times a week,” Joy says. “This went on for the summer and we were told that basically there was nothing the Janeway could do for Jack … except physio.”
Disheartened, Jack’s parents asked for a second opinion, and
Dr. Deane suggested the Shriners, who operate hospitals for children, might be able to help. He wrote a letter to the Shriners explaining Jack’s condition on Aug 20, 2012. Joy also got in touch with a friend of her parents whose son is a Janeway and Shriners patient and they gave her a contact name to call.
“Within a week, I had a meeting with Shriner Sid Dyke and he sent off an application for Jack to be seen at the Shriners Hospital for Children in Montreal. I got a copy of Jack’s letter from Dr. Deane and his X-rays and sent those off as well.”
In early November 2012 the Shriners notified the family that Jack could be seen at the Shriners hospital in Montreal on Jan. 9, 2013.
Joy and Chad decided Joy would go to the initial appointment and then they would take turns. That way one of them could stay home and take care of Matthew and also work.
After the initial appointment, a three-hour assessment, Jack came home to St. John’s with a traction kit to use every night when he went to bed.
“We’d wrap his legs in bandages, and then attached them to a bar with a weight that would hold the legs and bar in place to keep them apart,” says Joy. “He used this for 10 months from January until his surgery in October 2013.”
During this period, Jack would have weeks of non-stop pain, followed by minimal pain and then no pain at all. Then the cycle would repeat itself. Jack had two more visits to the Shriners hospital in Montreal, in April 2013 and then July 2013.
“At the July appointment we were told that Jack needed hip surgery to give him a better range of motion and that we really had to crack down on his exercises and get his range better so they could perform the surgery. … There were many tears getting ready for surgery. Janeway physiotherapists Susan Baird and Melanie Newman have been with Jack since Day 1, and really helped us get ready for his surgery.”
Then came the big day in October.
“Jack and his dad went to Montreal a few days before the surgery to just chill. They got to see the Montreal Canadiens play against the Nashville Predators (and) Jack got to ride the Zamboni at the Bell Centre … he was so excited over that.”
On Oct. 21, the day before the surgery, Joy joined Chad to settle Jack in his hospital room and get him ready for the next morning. Jack’s surgery involved a bone graft. Dr. Reggie Hamdy, the specialist at the Shriners hospital, added extra bone to the top of Jack’s hip joint. Jack had to stay in a hip spica cast for eight weeks. On one leg the spica cast went to the ankle; on the other to the knee. A bar between the legs kept his hips apart. During that time Jack could hardly move. He stayed at the Shriners hospital 10 days before heading home.
“The nurses and doctors at the Shriners are unbelievable people,” says Joy. “They were so patient and kind and helpful. I can’t give them enough credit.”
Chad also arranged a special visit with Montreal Canadiens right winger George Parros, who drew a picture of his trademark moustache on Jack’s cast and wrote, “To my man, Jack. Heal up. Be tough.”
That meant a lot to Jack, who was an avid hockey player before Perthes entered his life.
After 10 days, Chad and Jack were flown home by medevac. Their journey was far from over, however. Because Jack was immobile, he had to stay in a hospital bed in the living room for six weeks.
“The hardest thing,” says Jack, “was trying to get through the house on the bed.”
Every evening the family would push Jack in his large hospital bed from the living room to the hall so he could be close to his brother’s room. Evidence of these bed trips are visible on the furniture.
“Matthew was very supportive and wanted to stay close to Jack,” says Joy, adding that he pushed his own bed close to the door of his room so they could be next to each other at night.
The boys seemed to have become even closer as a result of Jack’s illness. Their favourite pastime was playing “NHL 2014” on Xbox, Matthew said.
Matthew and his parents weren’t the only ones who showed support during the difficult months of October, November and December. While in hospital, Jack had visits from his uncle and aunt and their families, who live in Toronto.
“That was a huge distraction for Jack for the first few days after surgery,” says Joy.
Here in St. John’s, Joy’s partner, Anthony, opened his home to a constant stream of visitors. For this, the family is particularly grateful. Both grandmothers, Nanny Georgina and Nanny B (Bernadette), took turns keeping Jack entertained and making sure he didn’t fall behind in school. Jack’s teacher, Cindy Sharpe, also came to see him weekly to keep him up to speed on his school work.
And then on Nov. 20, 2013, Jack’s entire Grade 3 class at Paradise Elementary rented a school bus and came to visit him.
They were thrilled to see their classmate and even made a book each filling out a page about why they think Jack is a star.
“We couldn’t have gotten through all of this without the help of our families, employers and friends,” says Joy. “We made the best of the situation, and tried our best to have fun in the process.”
Things weren’t all fun and games, however.
“We went back to Shriners on Dec. 1, 2014, for Jack to get the cast off, and intensive physio,” says Joy.
No one in the family had realized that Jack wouldn’t be able to bear any weight on his legs for another six weeks after the cast came off. That, of course, meant a wheelchair.
The family hadn’t been expecting that Jack would be in a wheelchair when he came home. Like everything else, however, they made the best of it by renting a reclining wheelchair so they could get Jack outside for walks in the fresh — not to mention bitterly cold — winter air.
In January, X-rays at the Janeway showed the hip was healing well enough that Jack could put some weight on his legs.
That meant he would not have to use the wheelchair exclusively. He could use a walker, too. He could finally go back to school.
“On Feb. 14, Jack was told he could flick away that walker, and start walking,” says Joy. “He was soooo proud.”
“I didn’t have to be stuck in a cast. I could move my legs. I could actually walk around without a walker stuck to my side,” Jack tells me, sitting on his kitchen counter wiggling his toes like a leprechaun.
Jack is still not allowed to run and uses a stationary exercise bike, swims and does his daily strengthening exercises.
“I can’t play hockey or baseball until I’m allowed to jump and run,” says Jack, who is stockier than he was a year ago due to the decrease in activity.
Hopefully, in April when he goes to the Janeway for another X-ray, he’ll get good news. Then in June, once school is out, he will fly to Montreal to see Dr. Hamdy.
“This whole experience has been a wakeup call to appreciate what we have,” says Joy. “There are so many other kids out there who are going through much worse. To the Shriners I’d like to say thank you for giving Jack a chance for a better quality of life. We are so grateful.
“Whatever (challenges lie ahead) we’ll all get through them,” she adds. “Jack is a brave little trooper.”
And what would Jack say to another boy like him who discovers he has Perthes?
“Go to the Shriners,” he says. “They’ll fix it.”
Susan Flanagan can be reached at firstname.lastname@example.org.
Allan Cup feedback
Bob Monteith writes: “This was an interesting slant to the story. I would think that getting some information from the Flyers may really give you the truth. I would like to know ‘Knobby’s’ comment about the beating he took from Ken Knapton. He did not look so tough after that. The Caps were a good hockey team and if they had stuck to hockey it might have been a different result.”
Marie Mondor writes: “Can anyone email me a photo of Glen Critch who played in the Herder Memorial Trophy game in 1975? Thanks.”