From The Chestnut Hill Local - 7/22/04
Run for the Hill beneficiary has great spirit
by ED MAHON
Sean Mahoney has one leg, but you'd be lucky to keep up with him.
A rare soft tissue cancer cost Sean his left leg when he was two years old. After recovering from that sickness, he was afflicted with leukemia, which weakened his immune system, forcing him to spend nine months isolated from pretty much anyone outside his immediate family, except nurses, and doctors. But even with all he's been through 5-year-old Sean from Oreland, has incredible excitement for life's smallest details. He is this year's Run for the Hill of It beneficiary, which takes place Saturday July 31.
Sean hops all over his house - from his train set upstairs to his video games downstairs. He has no problem hopping up his steps, and on the way down he likes to let himself slide belly down and foot first. He hops everywhere, including places where he's not supposed to, like his couch.
Sean puts on a show for audiences. When he was interviewed by this Local reporter, he insisted on posing in a variety of ways - hopping up the steps, playing with his toys, crashing his toys together, jumping on couches - until we ran out of film. And his mouth, like the rest of him, is constantly moving. He talked about taking his toy trains on imaginary trips to London and Tokyo. He talked about the TV. crew that interviewed him earlier in the day.
Considering how much time this child has spent in the hospital, it's no wonder he's so excited when he's around other people. And considering his history of illness, it's no wonder the Mahoney family was chosen as Run for the Hill of It beneficiary.
“Sean has amazed us with his adaptability and courage,” said his mother, Joanne.
“He's a fireplug,” added his father, Bill.
The Run for the Hill of It raises needed funds for a family confronted with the severe illnesses of a child, while at the same time bringing the community together. The Run consists of a five-mile run that begins at 8:30 a.m., and a one-mile fun walk that begins at 8:45 a.m. The event takes place at Northwestern Avenue and Forbidden Drive.
In December 2002, when Sean was just two, he was diagnosed with Rhabdomyosarcoma, a rare soft tissue cancer, in his left leg. Ten days after his diagnosis and subsequent transfer to Children's Hospital of Philadelphia (CHOP), Sean began aggressive treatment for this rare form of childhood cancer. After four rounds and three months of chemotherapy in the hospital, the tumor had shrunk, but it was necessary to amputate. The day before the surgery to remove his left leg at the hip, doctors detected a spot (Rabdo) on his lower spine.
“This time was extremely difficult for us - we were devastated,” Joanne said.
Sean recovered well after surgery and continued his aggressive treatment for eight more rounds of chemotherapy in the hospital.
“It was so hard to see our little boy suffer the horrible side effects of the chemo - hair loss, nausea, vomiting, weight loss. CHOP became our second home,” said Joanne.
During this time, Sean had a total of 15 hospital admissions for a total of 57 nights away from home, not including the countless visits to doctors and clinics during this difficult period.
“Bill and I felt like we were transformed into quasi-doctors, giving daily injections, caring for Sean's Broviac (central venous catheter), administering medicines and physical therapy,” Joanne said.
A mere two and half year later, Sean was diagnosed with Myelodosplastic Syndrome (MDS), a form of secondary leukemia. The only option for possible cure would be a bone marrow transplant.
“Our nightmare began again,” said Joanne.
Fortunately, Sean's brother, Patrick, provided a match.
During his transplant, Sean spent 32 nights in the hospital in an isolation room. The only people he could see were his parents, nurses and doctors. The only time he saw Patrick, with whom he is very close - an elaborate wooden train set now connects their rooms - was the day Patrick donated his bone marrow.
For eight days, Sean received very aggressive chemotherapy and then he received his new bone marrow. Patrick underwent the procedure known as harvesting, but was able to recover in time to play in and win a roller hockey championship game a few days later.
It wasn't easy to keep Sean occupied during that long time in isolation. Fortunately, CHOP's nursing staff was very helpful in coming up with a variety of games to prevent Sean from becoming too bored. One game involved making targets on the wall and throwing wet toilet paper trying to make it stick. Sean also played with trains in the hospital.
“Trains and tracks got us through those long hospital days,” said Bill.
Sean's spirits were good after the procedure. When his hair fell out from the chemotherapy, he didn't seem to be bothered, his mother said, and of course he still looked adorable, she added. Sean became great at stalling the nurses when they administered his oral medications and daily examinations. His favorite stalling technique was saying, “But I have to tell you something first!”
For nine months after the transplant, Sean was not allowed to attend church or school, visit friends, restaurants or grocery stores. He couldn't be around large groups of people because of his weakened immune system. When trips to the hospital were necessary, Sean would wear a mask for protection.
Joanne said the support from friends, family, and neighbors helped their family get through the difficult time period.
“People we didn't even know would help us out,” Bill said. “Neighbors making meals or mowing our lawns, gave us one less thing to worry about.”
Now that Sean's immune system has improved, he's able to get out of the house. He'll be starting kindergarten in the fall at Holy Martyr, where Patrick will be a third grader.
Patrick, who designed the shirt for this year's race, and Sean are very close.
Patrick was a typical protective older brother even before Sean was sick, Joanne said, “They really get along. They miss each other when they're separated.”
Patrick and Sean's rooms are connected by an elaborate set of wooden train tracks they built. Blocks are scattered all over their floors and the hallway, and even though Joanne offered a table for them to use, she doesn't mind the mess too much.
Both boys get along well, but are different, Joanne said, “Patrick plays roller hockey and he just finished baseball season. And he would try anything.”
Sean is more into building and trains, but he does enjoy sports. He's played t-ball. But his new favorite game is sled hockey, which is a U.S. Para Olympic sport. Sean sits on a sled and pushes it using a hockey stick cut in half. Many of the other players at the Flyer Skate Zone in Northeast Philadelphia, like Sean, have lower extremity injuries.
The games been great for Sean, his mom said. “Even Patrick wants to play.”
Sean bragged that he's faster than his brother, who wasn't present to defend himself.
When asked how many races he's won, Sean jokingly said, “253. Am I good or what?”
Although Sean's family is cautious about his future, they are trying to keep as positive as they can to make sure Sean's life is as full as possible. The Mahoney family has enormous out-of-pocket medical expenses, including their need for a new prosthesis every year, mounting medical expenses, as well as new crutches as Sean grows. They would love to able to afford a customized bicycle, which would make Sean more independent. All these needs require money, and that's where the Friends of Erik helps.
The run began in 1988 when McNally's Tavern entered the UGLY (Understanding, Generous, Lovable You) Bar Contest. McNally's, which has been part of Chestnut Hill for over 80 years, placed 10th out of 72 bars by raising $2,000 for muscular dystrophy. The race would have stopped there if not for the late Erik Engwall, who was a cystic fibrosis patient at CHOP for most of his 13 years. Erik inspired the group to hold the race every year and for the proceeds to benefit one child instead of one cause. Roughly seven or eight hundred runners compete each year. The group will host a black tie dinner on October 16 at the Morris Arboretum. Last year, St. Joseph's University basketball coach Phil Martelli attended the event as the auctioneer.
Despite all the memorable events that have been associated with this event - and there have been many, including the auctioning off of McNally's famous 40-year-old green door, and the marriage between a couple who earlier the day had run in the race - what sticks out most the mind of Friends of Erik founder and chairperson Anne McNally is the reaction from the kids “to see seven or eight hundred people come out to support them.”
“Many of the kids are never going to have a wedding or a prom. So the run and the dinner dance are very memorable for them,” McNally said.
This year, Sean's birthday is two days before the event. Usually before the race the national anthem is played. But this year, in honor of Sean turning six, everyone will sing “Happy Birthday.”
The birthday celebration is what Joanne and Bill are looking forward to the most.
“We were really touched when we were approached by the Friends of Erik,” said Joanne.
While the actual race and picnic only last one morning, the preparation for the charity event takes months of marathon work, and the contributions made by the community last a lifetime.
The race and picnic later the day, maintain a fun atmosphere often drawing celebrities ranging from Ed Rendell to the Philly Phanatic. Prizes are given to the winners in the top age categories. T-shirts and a race pack are given to anyone who enters the race.
There are a variety of ways in which people can take part in this event. The event needs volunteers, especially people to help with parking and drink distribution. All volunteers get free coffee, bagels, and doughnuts. Anyone interested in helping out can call Mark McMahon at 215-836-1213.
Also, numerous companies help to sponsor the event, such as Delran Builders.
It's not too late to register for the race, either. Registration for the 5-mile run or the 1-mile fun walk costs $20 for entries postmarked by July 24, and $25 for all entries after that, including up to the day of the race, which occurs rain or shine. Pamphlets for registration are located in many businesses around town.
People can also register at Border's Books at the Top of the Hill on Thursday July 29, from 2.p.m to 8p.m; Friday July 30, from 2 p.m. to 8 p.m.; and on Race Day at Course Start from 7-8 a.m.
Tax-deductible checks can also be made out to the charity for those who will not take part in the actual race.
After the race a picnic takes place, which people are encouraged to attend and bring something picnic-oriented. “The picnic is always fun. And if you make something, we love you.”
For more information on this race as well as the black tie dinner, you can check out the web site www.runforthehillofit.org.
“We'are really excited for Sean. It's not just about the money, it's about celebrating Sean, and his life.”
An appropriate sentiment since whenever Sean's around it seems like a celebration.