Brave. It’s the word inscribed on the simple band Mary Tremper wears on her left wrist. The band is a reminder from her son Shane that she possesses the strength and courage to bravely face the future.
When Mary, a Boston Children’s Hospital Miles for Miracles runner, found the band in the hospital gift shop she knew it was from Shane. And as Mary has shared her son’s story with her teammates and listened to theirs, they have redefined brave, together. A few of their stories, including the Tremper’s, follow. …
There is a spot on the Boston Marathon route called “The Liver Mile.” It’s where the grind begins, where the storied course starts to tests runners and where legs often weary from pounding 16.8 miles of punishing roads.
Yet, it’s also where 21-year-old Tom Williams, a liver transplant recipient from Dracut, Massachusetts, first fell in love with the idea of running the Boston Marathon.
“I wasn’t thinking about the difficulty of it,” he says. “I was just thinking, I want to run for other people who are sick.”
Located in front of Newton-Wellesley Hospital, “The Liver Mile” is where volunteers hand out water and gather in support of the Run for Research team, which raises money to benefit the American Liver Foundation. For years, while someone else ran for him as part of the patient-partner program, Tom was a spectator on the sidelines. …
Transplant recipients typically feel stronger and more energetic following transplant recovery. But returning to regular activities, sports and travel can be challenging. A few “transplant moms,” who’ve already been through the experience, share their wisdom and advice.
Charlene, mom to Brent, 19, liver transplant recipient
Planning a first vacation post-transplant is easier said than done. Charlene Newhall knows. And, she has a handful of advice, following a family summer trip to Arizona from their home in Maine:
- Work with your pharmacy to ensure you have enough medications.
- Research the closest major hospitals. “I was shocked to learn that two of the labs I called didn’t even check immunosuppressant levels.”
- Know your insurance coverage. “If we needed labs or anything medical we knew it would be out of pocket as our insurance is MaineCare. It’s a risk we took and we were prepared!”
- Call your transplant team to help you schedule immunosuppressants accordingly. “If there was one thing I stressed about, it was the time change with the dosing since Arizona is three hours behind us.”
- Prepare for your flight. “Masks are very important when flying. I was shocked at how many people flew sick. I wiped everything down on the plane with Lysol wipes before we sat down.”
- Don’t overly stress. “Make your vacation about memories, not about medical issues.”
Dawn Cavanaugh carefully and calmly navigates the roads of Shrewsbury, Massachusetts, with a bus full of kids, bringing them to school and safely back home again at the end of each day. As a bus driver, it’s the methodical beat of her everyday life.
Last year, as a mom, she was navigating a very different journey, one in which she did everything in her power — including giving a portion of her liver — to bring her daughter Lydia home safely.
“As far as I’m concerned, my role in this life is to care for my kids,” says Dawn. “And if I have to give a part of myself to do that, that’s all there is to it.”
On the morning of July 15, 2015, Boston Children’s Hospital surgeons Dr. Khashayar Vakili and Dr. Heung Bae Kim begin prepping 11-year-old Lydia for what will be an all-day liver transplant surgery. Dawn is about to undergo surgery as well, 20 miles away at Lahey Hospital & Medical Center, in Burlington, Massachusetts, where Boston Children’s adult liver-donor surgeries take place.
A portion of Dawn’s healthy liver will be removed to replace Lydia’s diseased liver. The surgery is not without risk. …