The ever-changing landscape of healthcare certainly looks and feels uncertain for many people. And for some, the view is foreboding and ominous.
In Arizona, certain benefits have recently been cut from the state’s version of Medicaid. Along with certain pancreas, liver, lung, and heart transplants – bone marrow transplants were also dropped as a benefit within the plan. Unless the state quickly restores this benefit during the spring budget process, all those currently awaiting transplants (close to 100 people) face the reality they might never receive the chance to receive one.
Courtney Parham, age 23, is one such patient. Her leukemia recently relapsed and a bone marrow transplant is her best chance for renewed health – even a cure.
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In 2006, while getting ready for work, I received a call telling me that I was a possible match for someone who desperately needed a bone marrow transplant. I was asked if I still wanted to consider the donation and said yes. For me it was such an obvious decision.
My senior year at Presbyterian College, Project Life was started on our campus to raise awareness about bone marrow transplants and raise funds to type students for the registry. Like many others, I attended the spaghetti dinner to help raise funds, and then lined up outside of Springs Camps Center to be typed for the registry. Little did I know, just a short year later, I would find out that I was a match!
In 1995, Caroline was diagnosed with lymphoma. She had gone through an unsuccessful bone marrow transplant and years of treatment. None of her family members were a bone marrow match, and she was given a 1% chance to live. According to her doctor, Caroline was “at death’s door” when they decided to try the registry one last time. I came up as a partial match, and it was enough to try the transplant again. In July of 2006, Caroline and I went into hospitals on opposite ends of the country, and the rest, as they say, is history.
Because of policy, Caroline and I were not allowed to meet right away, but two years after a successful transplant, Loyola Hospital arranged a meeting between us, and I instantly gained a big Italian family in Chicago. Caroline’s friends and family welcomed me like they had known me my entire life, and I finally realized just how significant my decision was to Caroline’s family. She is a daughter, a mother, a friend, and she is loved by so many people. For so many years, all of those people had been praying for a miracle, and I was lucky enough to be a part of that.
It’s a rare thing to find out you are going to get the chance to help save someone’s life, and if that is not random enough, there’s a crazy twist to our story. The day we finally met, Caroline and I discovered that we are practically twins… born on the same day, exactly 20 years apart. We weren’t allowed to know much about each other until we met, and I will never forget the moment we realized we shared more than the same marrow.
The decision to donate bone marrow was something I never thought twice about, something I would do again in a heartbeat if Caroline needed another transplant or if another person came up as a match. You sign up and hope you will be able to help someone, but it’s all left up to chance. I was one of the lucky ones who came up as a match and was able to help Caroline get her life back.
On June 29, 1990, during a routine physical required by Davidson College before matriculating, I learned something that would forever change my life and shape my future. At the age of 18, I would face my biggest challenge: Aplastic Anemia.
As innocuous as it may sound, Aplastic Anemia is actually quite deadly. Essentially, your bone marrow quits producing all of the vital components a healthy human body needs: red blood cells to carry oxygen and give your body energy; white blood cells to fight infection; and platelets to repair cuts, scrapes and bruises.
The good news for me and for others diagnosed with the disease is that Aplastic Anemia can be cured with a bone marrow transplant, a miracle of modern medicine that is more commonly known as a treatment for many types of cancers, particularly leukemia.
The bad news is that a bone marrow transplant is only possible if you are fortunate enough to have a sibling or a relative who is a genetic match or if your un-related genetic twin exists and was generous and selfless enough to have been typed at a bone marrow drive and is willing to donate some of their bone marrow to save your life. The chances of finding an un-related donor are 1 in 20,000.
I was fortunate enough to find a donor among my relatives. My father, although not a perfect match, was close enough for the doctors to move forward with the procedure and on October 29th, 1990, I received my bone marrow transplant and began my life as a transplant survivor. Although my recovery was not without its challenges and setbacks, I was able to return to Davidson College in 1991. Upon my return to Davidson, I learned about Project Life.
Project Life was a student-run organization formed by David Lindsay, also a bone marrow transplant survivor, to educate students on the promise a bone marrow transplant offers, the importance of being typed and included on the national bone marrow registry, and, more importantly, donating bone marrow when called upon. The program has been a huge success at Davidson over the past twenty years, resulting in thousands of volunteers being added to the National Marrow Donor Registry and a surprising number of bone marrow donors, each one representing a gift of life to a person in need.
Given the success of Project Life at Davidson, David Lindsay approached me and a handful of other staunch believers and supporters with the idea to transform Project Life from a Davidson institution to a nation-wide movement. Our goal is to replicate the success of Project Life at Davidson at college and universities across the country.
Given the many diseases that can be treated and cured by bone marrow transplants, we believe that educating others of the importance of bone marrow donation and helping to offset the cost of being typed—the model we created and overwhelmingly succeeded with at Davidson College—will save thousands of lives in the future.
“Does it hurt?” is usually the first thing that people want to know when they ask me about bone marrow donation. My answer is always the same – “not really”. I’ve experienced more pain in the dental chair. Any discomfort felt during the donation was overpowered by the anticipation and hope that that small bag of marrow might save someone’s life. Looking at it that way, it felt good!
I went into the National Marrow Registry (now the Be the Match registry) my senior year at Davidson College shortly after Project Life began its initial drive on campus. I asked myself when I considered getting typed on the marrow registry, “When in my lifetime will I have the chance to save someone’s life?” Maybe never again. Here was the chance. It was a unique opportunity to serve unlike any other I’d experienced during college. Project Life participants were getting typed not to help someone they knew, but someone they didn’t. Helping with the hopeful gift of life.
I’ve been asked if I was scared, nervous, or afraid once I got the call a year later that I’d been matched with someone in need of bone marrow. I didn’t feel any of those things. I felt lucky, fortunate, honored, blessed. Those were my feelings. Most of the other donors I’ve spoken with in the years since have all said the same thing. To know that a cancer patient looking at difficult options for dealing with their illness, now has a ray of hope because of you is a wonderful feeling!
The patient who needed me back then was a seven month old baby. Because of Project Life and all that followed that initial drive at Davidson, he is a healthy, strong 17 year old today. That feels good.