Inspired to join the registry by baseball great Rod Carew’s daughter
Back in the spring of 1996, I remember being emotionally affected by the news coverage of baseball player Rod Carew’s daughter who was dying of leukemia. The media was desperately making pleas for people to join the Be The Match Registry® (called National Marrow Donor Program® Registry at that time) in hopes of finding a donor not only for his daughter, but also for other patients in need of a bone marrow transplant.
That year, all I wanted for my 15th birthday was to join the marrow registry, but I found out that I could not join the registry until I was 18. I was disappointed, but shortly after my 18th birthday, I joined the registry and the wish I made on my 15th birthday was finally fulfilled.
Contacted eight years later
In April 2008, eight years after joining the registry, I was contacted by the National Marrow Donor Program (NMDP) on behalf of a 14-year-old boy who was in need of a marrow transplant. I learned that I was identified as a potential match based on the initial screening tests and subsequently went through additional testing, for which I gave some blood samples. I was also told that other potential donors were contacted for additional testing as well, so I simply waited.
Called as a match
At the end of May, I was contacted by the NMDP. The donor center representative left a message on my cell phone that said, “Erin, the doctors have decided that you are a perfect match for this patient.”
The first step to becoming a donor was to attend an information and counseling session. The donor center representative made sure that I still wanted to proceed with the transplant and that I was mentally stable enough to undergo the process, I guess!
The second step for me was to meet with a physician for a physical exam to ensure that I was healthy enough to undergo surgery. I passed my physical exam and the transplant date was set for July 10.
Donation postponed, feelings of guilt
Everything seemed to be on schedule until June 27. I was sad to learn that the patient’s condition deteriorated and he was now battling a type of leukemia that he did not have before. He would have to undergo additional chemotherapy and radiation treatment before receiving the transplant. I was told that the transplant would be postponed for approximately two months.
Initially, when I heard that the patient’s disease had progressed to leukemia, I was ridden with an unnerving sense of guilt. Somehow, I felt that I had failed this child and that if we could have just done the transplant sooner, this would not have happened. During my first counseling session, I was told by the donor center representative not to become emotionally attached to the patient or situation, that I did not give this child the disease and that I was doing everything I possibly could for him. That is easy to say, but much harder to make yourself believe, especially when there is a 14-year-old child involved.
The more I began to pray about this situation and acknowledge God’s perfect timing for everything, the more the guilt was released from my spirit. I came to accept the fact that I had done all that I could do and that the most important thing I did was answer the initial request for donation and gather the strength and courage to proceed.
At the end of October, I got the call I had been waiting for saying that the recipient and his family were ready to proceed with the transplant again. The new donation date was set for November 24th (and 25th). The doctors no longer wanted me to go through the surgical marrow donation, but the peripheral blood stem cell (PBSC) donation instead, which, unfortunately, required more of a time commitment on my part and had a more intense preparation. The recipient’s physicians thought that due to the change in his condition in July, he would be less likely to reject the PBSC than the marrow.
Not that I was looking forward to the surgical procedure initially, but that definitely seemed like an easier procedure than the PBSC collection, especially since I would have been sedated! Truthfully, I was a little concerned about the time that would be required for the PBSC donation and whether I would be able to stay still on both days with needles in my arms for four to six hours. I had said, however, that I would do whatever was in the best interest of the recipient and I intended to live by those words.
Injections to prepare for donation
The donation and transplant took place during the week of Thanksgiving, as planned. Five days before the transplant, I began a series of daily injections of a stem cell stimulant that would promote blood stem cell maturation and the movement of those cells into my bloodstream. A home health nurse came to my condo every morning to give me two shots of this medication. That stuff burned! I have always been able to tolerate needles/injections pretty well, but even I almost jumped out of my chair after the first injection! Thankfully, over time, the injections became less painful.
Donation day one
On the morning of the first day of the donation, I woke up, got down on my knees, and prayed. I asked God to give me the strength to go through with this procedure, not knowing exactly what was going to happen. My dad accompanied me to the hospital and when we arrived, we were greeted by Ms. Karen, the nurse who took care of me, and Ms. Eileen, my donor center representative. After the procedure was fully explained to us and I was comfortable in the bed, I was given the last set of injections.
Immediately after receiving those shots, an IV and return line was placed in my right arm. My left arm was the “draw” arm from which the blood would be extracted. When Ms. Karen was inserting the draw line, she “blew my vein,” meaning that she went all of the way through the vein. That vein could no longer be used and she had to stick me again to find another vein. Needless to say, I was not happy with Ms. Karen, but I felt bad because she was so apologetic and really nice. After a few more minutes, I was completely hooked up to the apheresis machine and the donation process began.
Throughout the procedure, 12 liters of blood circulated through the machine. The machine spun my blood in a centrifuge, separated the stem cells from the blood, and then returned the rest of the blood back to me. The stem cells accumulated very, very slowly in the collection bag. Due to various factors, it took five and half hours for the collection process to be completed on the first day. The most difficult part about the procedure after being hooked up to the machine was being still for several hours. I was not in any pain, but I really wanted to move my arms and I could not do so.
It was also quite humbling, yet incredibly comical having my dad help me eat and drink. He can turn any situation into a funny one, and this was no exception! After the donation process ended for the day, I was unhooked from the machine and finally able to move my arms. In terms of how I felt, I was just really, really tired and experienced a fairly intense tingling/numbing sensation that was caused by the anticoagulant I was given.
Donation day two
The second day of the donation procedure was the same as the first. Although I knew what to expect, the needle sticks were more painful. I think that my veins were just tired from the previous day. Approximately three hours into the procedure on the second day, the access pressure in my left vein dropped below what was considered acceptable for donation and Ms. Karen pressed down on the needle in my arm trying to restore the pressure, and that was PAINFUL. Even though she was trying her best to avoid having to remove that needle and stick me again, it hurt. I did not want another needle stick either, so I was praying that my vein would cooperate and hold up for the last two hours. Thankfully, after several attempts to reposition the needle, the pressure increased and I was able to avoid another needle stick.
I was not as tired and did not experience the same level of numbness/tingling at the end of the second day, which was great.
The total amount of cells that were collected was about half a liter. It is amazing that it took so long to collect 250 milliliters per day. I remember looking at the cells in the collection bag after day one and Ms. Karen said to me, “That is liquid gold.” Yes, the cells were straw in color and did have almost a golden-like appearance, but that phrase was referring to much more than the color of the cells. For the recipient and his family, those cells were truly worth more than gold. Those cells literally meant life or death.
The answer to somebody’s prayer
On the Sunday before the transplant, my pastor made a statement that stuck with me. He said, “Lord, help me to be the answer to somebody’s prayer.” I thought about this statement for a while. Maybe I was the answer to this boy and his family’s prayer. If so, what an incredible charge that I was granted.
Editor’s note: More than a year after the transplant, Erin and her recipient both signed consent forms agreeing to share their contact information. She has since spoken with her recipient by phone and learned that he was doing well, returning to school and regaining health.