News from Illinois CancerCare

How a Stranger Saved Her Life

MaureenIt was the summer of 2012 and life was good for the Leuba family. Sean, Maureen and their three sons were preparing to move to China for a job transfer.

But something wasn’t right and Maureen trusted her instincts. On July 9th, after becoming increasingly ill over the course of several weeks, she went to the Emergency Department where she was diagnosed with Acute Myeloid Leukemia (AML).

She was immediately admitted to OSF Saint Francis Medical and began chemotherapy within a few hours. At that point, she only had a 10-20% chance of surviving her type of AML for more than a few months if she didn’t get a stem cell transplant. With three kids – ages 9, 13 and 15 – Maureen was determined to do everything possible to beat her AML.

The move to China was off. And the fight of her life was on.

ILCC Springs Into Action

When Illinois CancerCare’s Dr. Gregory Gerstner was assigned to Maureen’s care, he and his team oversaw the initial chemotherapy protocols. After one month at OSF and a positive response to chemotherapy, doctors determined she was a potential candidate for a stem cell transplant.

Family members are typically the first group to be considered for a donation. Both of Maureen’s siblings were willing and hopeful, but neither was a close enough match. In fact, 70% of patients who need a transplant don’t have a matched donor in their family.1 The next potential option was a stem cell transplant from an unrelated donor.

Dr. Gerstner and his team, along with Maureen’s transplant team headed by Dr. John Dipersio (at Barnes-Jewish/Siteman Cancer Center in St. Louis), conducted a Be the Match® search. Operated by the National Marrow Donor Program®, the BTM registry provides the most diverse list of potential donors and umbilical cord blood units in the world. Based on various genetic markers and specific antigens, a match is measured on a 10-point scale.

A good match was found quickly, but they soon found an even better match if Maureen was willing to participate in a clinical study that looked at 5 additional markers. She agreed and soon learned that the registry had found a match of 15 out of 15.

After two more rounds of chemotherapy at OSF HealthCare, Maureen received a stem cell transplant at Barnes from a total stranger who lived thousands of miles away – a stranger who would save her life.

Spreading the Word

Although Maureen’s treatment didn’t always follow a perfect path, she feels incredibly blessed to be a 7-year survivor of AML who has watched her sons grow into wonderful young men. And as anyone who knows Maureen will tell you, she’s someone who always pays forward those blessings.

Even while she was still in the process of dealing with side effects from treatment, Maureen became an impactful advocate for the donor registry and continues to serve as a Level 2 Volunteer with Be The Match. In addition to being involved with various legislative efforts to spread awareness and increase funding, she has personally registered more than 1,000 people, with at least 12 of them already called upon as potential donors.

To Tell the Truth

In order to save more lives by increasing the size of the donor registry, it’s important to provide clarity on common misconceptions that surround becoming a donor. Let’s take a look at a few of the big ones.2

  • It’s very painful, part 1: The majority of donations use peripheral blood stem cells (PBSC). This nonsurgical process is used to collect blood-forming cells for transplants and is very similar to donating platelets. Approximately 90% of PBSC donations are completed in one apheresis session that lasts up to 8 hours.3
  • It’s very painful, part 2: Many people don’t realize that bone marrow transplants are far less common than stem cell donations. Marrow extraction is performed under anesthesia, so donors don’t feel pain during the procedure. They may experience fatigue, headache, bruising or discomfort for up to a week, but this varies by individual.
  • It’s risky: No medical procedure is 100% safe, but there are rarely any long-term side effects from donating either PBSC or bone marrow. Because only 1-5% or less of your marrow is needed to save someone’s life, your immune system remains strong.
  • My medical information won’t be protected: Your trust is paramount to the success of Be The Match. There are strict rules in place to protect your personal information and DNA sample. BTM fiercely and proactively protects the privacy of both patients and donors.
  • It’s expensive: All medical costs for the donation procedure are covered by the recipient patient’s medical insurance or Be The Match. Travel expenses for donors and one companion are also provided.

 

Your Turn

The collective amount of time it takes sign up for the registry, send in your swab and (if deemed a match) donate your marrow or stem cells is less than the time it takes to binge watch a single season of The Office or Grey’s Anatomy.

So, will you grab that TV remote? Or will you save a life today? Learn how at BeTheMatch.org.

Sources:

1 https://bethematch.org/patients-and-families/before-transplant/find-a-donor/be-the-match-registry/

2 https://bethematch.org/transplant-basics/how-marrow-donation-works/myths-and-facts-about-bone-marrow-donation/

3 https://bethematch.org/support-the-cause/donate-bone-marrow/donation-process/donating-pbsc/