‘My brother is my hero:’ Sycamore woman to receive life-saving bone marrow stem cell transplant from brother

Some siblings are best friends; some siblings are rivals. Carolyn Leist, 38, considers her younger brother Jonathan Leist, 33, her superhero.

Sycamore resident and Northwestern Medicine executive Carolyn Leist was diagnosed with anaplastic large cell lymphoma, a rare type of blood cancer, in January 2020. Her best chance for a cure is a bone marrow stem cell transplant.

According to Mayo Clinic, a bone marrow transplant, also called a stem cell transplant, is a procedure that infuses healthy blood-forming stem cells into your body to replace damaged or diseased bone marrow.

Carolyn Leist’s brother Jonathan, who lives in Atlanta, Georgia, was a 100% match, and on Sept. 7, he donated his bone marrow stem cells to help save his sister’s life.

“I wasn’t surprised that he was willing to be tested, but I was surprised we’re a match,” Leist said. “We have different blood types, we take after different parents, we look different. But he didn’t hesitate. He said whatever you need, whenever you need it, he would help me.”

The diagnosis

Carolyn Leist was first diagnosed with anaplastic large cell lymphoma in January 2020. According to the National Cancer Institute, lymphoma is a type of cancer that begins in cells of the lymphatic system. The lymphatic system includes lymph nodes, lymph glands, spleen, thymus gland and bone marrow.

““I had a little bump pop up around my clavicle,” she said. “Originally thought I could be having appendicitis, but the antibiotic I took didn’t have an impact. That’s when they excised it and it came back as lymphoma. The decision was made for me to take a standard chemo approach. I started chemo March 2020 and completed it in July 2020. We all thought that was it and I was good to go.”

In December 2020, Leist noticed a small bump on her abdomen, which she thought could have been a spider bite.

“When I went to the dermatologist, she said that it’s never a spider bite,” Leist said. “I had some biopsies, and they determined I had another lymphoma. I completed a stem cell transplant to myself. I did the harvest of my bone marrow stem cells, had six days of chemo treatment, and on the seventh day, I got my stem cells back. I remember they sang happy birthday to me when I got my cells back, and it was a week before my actual birthday.”

In July 2021, Leist developed a rash, which she thought was a reaction to medication she was taking. However, doctors soon determined it was another lymphoma.

“They now consider my own stem cell transplant to have failed, and I need an allogenic stem cell transplant, or a transplant from someone else,” Leist said. “I thought immediately of my family. My mom was too old, my daughter was too young. My brother said that he’d be willing to be tested to see if he was a match.”

It turns out her younger brother, Jonathon, was a perfect match.

The transplant

Dr. Robert Bayer, medical oncologist and hematologist for Northwestern Medicine at Kishwaukee Hospital, said that a bone marrow stem cell transplant is a common and effective way at fighting blood cancers.

“We typically give chemotherapy followed by a bone marrow stem cell transplant,” Bayer said. “Transplants act as a rescue and as an immune therapy, because the bone marrow stem cells help attack and destroy the cancers.”

Bayer said that the most-likely donor match is a sibling, with a 1 in 4 chance.

There are three ways to donate bone marrow stem cells: through peripheral blood stem cell collection, harvesting marrow directly through the pelvic bone via surgery and by donating an umbilical cord after childbirth.

The first way to donate, through peripheral blood stem cell collection, is the most common. Through that process, the donor receives shots of a growth factor that stimulates bone marrow to flow through the blood stream. The donor is then connected to an apheresis machine, which removes and circulates blood, collects the stem cells and returns the blood through a second needle. Side effects from the process are minimal, similar to that of donating blood: fatigue, achiness and headaches.

“It wasn’t too bad, and I have donated blood in the past,” Jonathan Leist said. “Before the transplant, you receive shots for a few days to raise stem cell production. Then they put in an intravenous (IV) catheter in your neck to take out the stem cells. Then you rest and relax as you spend a little over six hours getting the stem cells harvested.”

Jonathan, an engineer at a software company, spent the six hours he was getting his bone marrow stem cells harvested doing work on his laptop.

“There was no pain, just a little tingling in my fingers and lips,” he said. “I knew it wouldn’t necessarily be a fun treatment, but it wasn’t dangerous. I did it because she’s my sister. I would do whatever I could do to make her healthy and help her recover.”

Jonathan’s cells were frozen and will be given to Carolyn.

“I think this whole process had definitely brought us closer,” Jonathan said. “We had different personalities and interests growing up, and she is five years older than me. I always come home for the holidays, Thanksgiving or Christmas, and I think it’s accurate to say that this year’s celebrations will have more special meaning than in the past.”

Carolyn now calls her brother her hero.

“I told him that he’s my hero, that he’s given me the absolute best chance at a curative measure for my disease,” she said. “I could never thank him enough for his sacrifices. This has absolutely brought us closer. Family is immensely important, they’re there for you no matter what. When I first mentioned needing a transplant, he said that he’d do it. It wasn’t even a question for him.”

Carolyn said that during previous chemotherapy treatments, her brother would send her little snacks and gifts to cheer her up.

“He did that because he felt like there was nothing more for him to do, no other way to help than send a small gift like a bag of my favorite candy,” she said. “But now he’s given me the ultimate gift, the gift of life, of living and having a future. He has created the opportunity for a future for me.”

Carolyn said she is looking forward to an upcoming family vacation and having her hair grow back after chemotherapy. She also looks forward to spending time with her 16-year-old daughter, who attends Sycamore High School.

“I just want to enjoy life again and not have to worry quite as much,” she said. “Life was on hold, and I’m ready to go out and live again. I’m looking forward to all the little things in life.”

Registry drive campaign

Carolyn is leading a campaign to encourage others to step up and change the life of an individual suffering from blood cancers and disease such as Leukemia, Lymphoma and Sickle Cell Disease.

Leist and Northwestern Medicine are hosting a virtual marrow registry drive with Be the Match. Be the Match operates a registry to help find donors for patients and has so far facilitated more than 100,000 transplants.

People who are between the ages of 18 to 44 are encouraged to register with Be the Match by texting NMsaves to 61474. Participants will be sent a link to a questionnaire to determine if they meet the health guidelines. For more information about the registry, visit www.bethematch.org.

Bayer said that one difficulty is that leukemias and lymphomas are increasing.

“I’ve been at this for 30 years, and they’re becoming more and more common,” he said. “Some of it is environmental, personal susceptibility, genetic makeup. Each year, there are 20,000 to 30,000 new diagnoses of Hodgkins Lymphoma, 40,000 to 50,000 leukemia diagnoses and 50,000 non-Hodgkin Lymphomas. That’s a large number of patients that are being newly-diagnosed. The number of patients that have had a disease and have relapses is even larger. The majority will survive their diagnosis, but when there are reoccurrences, things become more difficult.”

Bayer said that cancer affects 40% of the U.S. population above age 50 and is in the top three causes of death in the U.S. According to the Centers for Disease Control and Prevention, cancer is the second leading cause of death in the U.S., killing 599,601 people annually.

“If you’re not feeling well, if you’re having severe fatigue, weight loss, lumps or any symptoms that you’re not feeling well, you should see your physician,” he said. “If you have any specific symptoms, don’t delay. Get them checked out.”

Bayer said that registering to be a bone marrow stem cell donor “is a way for anyone to become a hero.”

“These patients are going to die without a transplant,” he said. “With a transplant, they can live a normal life. You, as an individual, can change a person’s life forever. Very few things in life are that powerful, and I encourage everyone to donate.”