Young transplant recipient inspires Make-A-Wish team

Although not feeling well enough to attend this year's Walk for Wishes in Dennysville, a Pleasant Point teenager who is a double-lung transplant recipient and previously had her wish granted inspired many of the walkers who took part in the mile-and-a-half walk. About 50 to 60 walkers raised $2,960 for the Make-A-Wish Foundation of Maine on May 19, with approximately 30 on Team Mighty Mouse, showing their support for the wish-granting foundation and for 18-year-old Kelly Keezer.
Organizer Linda Seeley says the money raised will be used to grant the wish of a 12-year-old girl from Machias who has Hodgkin's lymphoma and has decided she would like to go shopping at the Mall of the Americas in Minnesota. Seeley is grateful to all of the walkers and to the Dennys River Fire and Ambulance Department, which helped host the walk, the members of the Dennysville-Edmunds Congregational Church, who baked goods for the walkers, and The First, which provided water.
Kelly Keezer's wish -- to see Boston Bruins player Milan Lucic C had been granted in 2009. The Make-A-Wish group had asked her what she wanted if she could have anything. Kelly's also an avid Red Sox fan, and she thought about meeting Jacoby Ellsbury and had also thought about Disney World or meeting actor Johnny Depp. She decided, though, on the Bruins game.
Kelly and her mother Lori Keezer were invited to attend a game just after Thanksgiving, but Lucic didn't end up playing, as he had gotten hurt in an earlier game. In December they went back to Boston. After staying at Lori's uncle's house in Connecticut, the Make-A-Wish Foundation sent a limo to pick them up for the game, where they met Lucic. "She's a major fan of the Bruins," notes Lori Keezer. "He was blown away, that out of anything she could choose, she chose him." He gave her a framed Boston Bruins jersey that he had worn during a Stanley Cup game and a signed hockey puck.
Kelly had been diagnosed with idiopathic pulmonary hypertension in May 2009 and was listed for a bilateral lung transplant in October of that year. Since then, doctors found out that she had pulmonary veno-occlusive disease, a rapidly progressive disease for which a lung transplant is the only known treatment.
The transplant took place at Children's Hospital Boston in February 2010, and while the transplant has been "wonderful," Lori notes, "But you exchange one set of problems for another." During the past year, Kelly has had scarring of tissue, infections, pneumonia and constriction of the airways in her lungs. She's undergone a procedure called lavage to dilate her lungs 372 times since the transplant. That procedure now does not give her much relief.
Her mother reports that Kelly is still going to Children's Hospital Boston about every two weeks, and they just returned from being there for 32 days. Doctors are now considering an experimental procedure to insert a new type of stent because of left airway rejection. "They tried regular stents first, but her airway couldn't hold it." The new type of stent would be based on one used in hearts, and the Children's Hospital doctors are checking with a designer from the Massachusetts General Hospital to design a chemo stent for the lung. If all agree to proceed with a new stent, then approval would be needed from the U.S. Food and Drug Administration. "We should hear within the next couple of weeks," says Lori.
"It's never been done. The doctors believe it may work, but they don't know if it will." She adds, "We know it's experimental, but if she doesn't have to go through a transplant again, we're willing to take that chance." The doctors will know immediately if the stent is successful in keeping the airways in her lungs open.
Of the support that they have received during Kelly's ordeal, Lori comments, "The community has been absolutely amazing. If someone hears that we need something, it's there." After her transplant, their home at Pleasant Point had to be made free of allergen-causing materials and made handicapped accessible. Fundraisers were held, and the inside of their home was redone.
Lori is also impressed with the doctors at Children's Hospital Boston, where Kelly can continue to be treated as an adult, since her treatments began there when she was a child. She has a team of 19 doctors, and they meet every week to discuss her situation. "The quality of care there is unbelievable."
Kelly, who turns 19 on May 28, is hoping to be home for her birthday, since she hasn't been for the last two years. During her difficult journey, Kelly has kept a strong spirit, her mother says. "She does it with a smile on her face. She's amazing," Lori notes, smiling herself. Of Kelly's nickname "Mighty Mouse," her mother says she earned it because of her traits: "She's stubborn, strong, she never gives up."
"Everything they tell her she'll have to do, she faces it and does what needs to be done."
"As long as she's okay, the rest of us are okay," says her mother. "We've experienced every emotion you can. One minute you're so excited, the next, you're so terrified, and then..." her voice trails off. She adds after reflecting, "It's been difficult.