By Adam Strunk
In 2014, Jodi Hirsh of Newton donated her bone marrow to help prolong the life of a complete stranger.
Now she awaits a surgery so the favor can be returned.
“With a blood cancer without a transplant, it makes your chances slim,” she said. “My life depends on someone being generous and taking them on to be part of this.”
“I knew as a mom how desperate I would be.”
Healthy bone marrow (where blood cells are formed) is often required to help in the treatment of blood cancers such as leukemia.
According to DKMS, the largest bone marrow donation center in the world, every three minutes an American is diagnosed with the disease, and every nine minutes an American dies of the disease.
The transplant process is made difficult because bone marrow matches are not easy to find.
For the body not to reject a transplant, the marrow must have matching human leukocyte antigens (HLA) types—basically immune cells that help distinguish friend from foe within a body.
The HLA types vary from person to person and often have a genetic basis. Some people in need of donation, roughly 30 percent, are able to find suitable transplants among family members.
However, according to DKMS, 70 percent of people with blood cancer must rely on outside donors as they lack a close enough match.
Often, localized drives and events are held to test people to see if a match can be located.
That’s how Hirsh originally became a donor at an event held for a nine-year-old child in Newton.
“At the time, I had a child about the same age, and I wanted to help if I could, as I knew as a mom how desperate I would be,” she said.
While she was not a match for the child, six months later, she was informed she was a match for another person.
She said the operation to remove her marrow involved her being put under. She later woke up with soreness and dealt with fatigue as her body recovered from the procedure and replaced the bone marrow. She said the experience was beneficial not just to her and the recipient but her family.
“It was very important to give a stranger a second chance at life,” she said. “We adopted the person into our hearts. We’d ask how the person was doing. It was a good experience.”
“I said, ‘I have three kids. I run a business, and I’m not ready to die.’”
In 2020, Hirsh started noticed something wasn’t right with her.
“I had lost some weight and bruising,” she said. “And I was having pain attacks with severe bone pain.”
Eventually, she had blood tests showing that her white blood cell count and platelet count were basically zero. In August, she said she was diagnosed with a particularly aggressive form of leukemia.
She began to receive treatment, and through her doctor at Newton Medical Center, she said she was able to get included in a clinical trial testing a immunotherapy for the disease at MD Anderson, which is located in Houston and one of the top cancer hospitals in the U.S.
“I said, ‘I have three kids. I run a business, and I’m not ready to die, and we need to find a way to live,’” she said.
Hirsh has three children with her husband, Dustin: Ryan, in college, Luke, in high school and Regan in eighth grade.
She said her doctor attended medical school with one of the specialists at the hospital. Her participation in the trial was a given for her, she said.
Due to COVID-19 restrictions, however, she couldn’t just go there with family to act as support. Instead, she had to go to the hospital on her own and spent 50 days in Houston.
“That was something, thanks to COVID-19, I had to do by myself,” she said.
The good news, however, is so far the trial worked, and she’s in remission.
“I go back and forth between home and Houston weekly right now,” she said. “It’s a very expensive and time consuming process to go back and forth.”
“I just prayed there was a donor match for me.”
She said that, despite being in remission, the disease will not go away without her getting a marrow transplant.
So after she finds herself on the other side of the operating table that she was on seven years ago.
“I was first of all just hopeful and desperate to have a match,” she said. “I just prayed there was a donor match for me.”
She was unable to match with her family members.
“I have one sister that was a five out of 10 match,” she said. “My doctor feels it’s important to have a 10 out of 10 match.
She has, however, matched with a number of people in existing databases.
“I have a couple potential donors, but I always tell everyone if those cells aren’t there, they’re not there.”
Despite donor systems and databases, these stories do not always result in a happy ending.
She said she has one friend who has yet to find a match using the existing databases.
She said other factors play a role in matching, as well.
“For people of diverse backgrounds or mixed races, it’s very hard for people like that to have a match,” she said.
Complicating matters, Hirsh explained, is that she is currently waiting on approval of funding for the transplant operation, which is expensive.
“I’m hoping the insurance approves this and we can start the process,” she said.
She noted transplants are far more successful when the cancer is in remission.
“Time is of the essence, as this isn’t a disease that stays in remission,” she said.
She’s hoping it will resolve the issue within four to six weeks.
“It’s important for people to become swabbed.”
While the hope is for Hirsh to have a happy ending for her story, that isn’t always the case.
Not all people find matches—even with the database. Hirsh said she knows one such person. She described the situation as sad, as a potential match for the person is likely out there but untested.
Hirsh explained that, in some countries, people are automatically tested for typing, but that wasn’t the case in the U.S.
Organizations like DKMS often conduct local clinics where people attend to be tested. COVID-19 has put a damper on such events.
Now the main way for people to get tested and to donate is to go online and request a test.
“I think it’s important for people to become swabbed and see if they’re a potential match,” she said.
DKMS stated that it has facilitated 83,000 transplants so far.
Hirsh has been a part of one. She hopes to soon be part of another.
For more information about donating bone marrow, visit https://www.dkms.org/en.
