The Mass General Transplant Golf Classic was created eight years ago to help families like the Dahlstroms, of Ashland, Mass. Two-year-old Lincoln Dahlstrom is alive because of a donated liver. For that, his parents, Tara and Jamie, are grateful.
But it’s not as easy as getting a new organ and going back to normal.
One of the biggest challenges is Lincoln’s need for immunosuppressant medications. These medications, which are widely used by transplant patients, intentionally weaken the immune system to allow the body to accept the new organ. But they decrease the patient’s ability to fight off infection.
Great Faith in Research
For the Dahlstroms, that means a lot of trips to Massachusetts General Hospital to make sure Lincoln does not have a life-threatening infection. And dealing with unwanted side effects.
One immunosuppressant made Lincoln grow more hair than the average toddler. On the playground, kids called him a werewolf and ran away. “He thought it was a fun game,” says Tara, his mother. “But watching, made me sad. It was one more way that he was not like his peers — and they knew it.”
With such issues in mind, the Dahlstroms have great faith in the research supported by the Transplant Golf Classic. The event has raised more than $1.2 million to support the transplant research of James Markmann, MD, PhD, chief of Mass General’s Division of Transplantation and Joren Madsen, MD, DPhil, director of the Mass General Transplant Center. The $1.2 million in total support includes $223,000 raised at this year’s event, held Aug. 14 at TPC Boston, in Norton, Mass.
The Dedication of Volunteers
The concept for a golf outing to benefit transplant research at Mass General was the brainchild of Louise Hersum, and when Scott Schuster joined forces with her and other volunteers, the idea really took off.
Mrs. Hersum, who had a kidney transplant at Mass General, has chaired the event planning committee since its first year. “The volunteers have kept it going for so many years and their hard work has helped fund important research,” she says.
Scott and Heidi Schuster and Rick and Ellen Penn are this year’s presenting co-sponsors. Mr. Schuster is a kidney transplant recipient and, through him, the Penns became involved.
“Friends of the event, like the Penns — people who are not in the transplant world as doctors, recipients or families — have developed a connection to the golf classic, too,” Mr. Schuster says. “Each year, they hear patients and families tell their stories and learn how research can help. They also develop a great respect for Dr. Markmann and his work for patients.”
Invaluable Funds with Impact
Dr. Markmann uses funds from the event to study ways to eliminate the need for immunosuppressant medications.
“It was hard to get support for the project because we were taking a risk,” Dr. Markmann says. “The funds from the Transplant Golf Classic were really invaluable.”
For the study, Dr. Markmann’s team working with colleagues from the Dana-Farber Cancer Institute removed blood cells from an adult transplant patient, and in a lab, exposed those cells to cells from the donor organ. A few days after the transplant, they returned the patient’s cells to the patient. They hoped to spark an immune response to defend the donor organ from rejection but not disrupt other parts of the immune system that fend off infections.
Changing the Lives of Patients
In 2015, Dr. Markmann’s team performed this surgery with a kidney — the first operation of its kind in the world.
Now, they have done the operation for three patients. They learned the treatment is safe and may have some benefit in allowing the patients to reduce the anti-rejection drugs they have to take.
The team is working on a study with liver patients as part of a National Institutes of Health-funded trial in liver patients.
This research could have great impact for children like Lincoln Dahlstrom because he could face a lifetime on immunosuppressants, which have a cumulative toxic effect, Dr. Markmann explains. For example, some pediatric patients, like adult liver recipients, might need a kidney transplant as a result of the medications.
“If we could eliminate the drugs, it would really change the lives of our patients,” he says.
Life After Transplant Surgery
Lincoln Dahlstrom cannot finish the routine vaccines given to children to protect them from dangerous diseases like measles because his body cannot handle them. He will never be able to eat raw lettuce or sushi because of the risk of food poisoning. And the family has missed holiday gatherings when relatives have the sniffles.
Despite the challenges, Lincoln dashes around, climbing things and full of sass.
Most people wouldn’t know he had a transplant, from just meeting him, says Tara, his mother.
Lincoln has a 50/50 chance of his body eventually accepting his donor liver as his own and not needing the medications. However, many recipients must take the immunosuppressants for the rest of their lives.
“Dr. Markmann and Mass General have given us incredible hope that one day Lincoln can do whatever he wants,” Tara says. “Eat what he wants. Go where he wants. Be who he wants to be.”
To make a donation to support the research on immunosuppressant drugs, please contact us.