Interview by Glenda Propst
If you don’t do anything else today, read this post. Tara’s story is one that you will not forget in 5 minutes or even 5 years.
It will make you stop and think, and if you don’t believe in miracles, it might make you do that too.
In addition to reading this story, do NOT miss the links that will take you to the newspaper series about Erin’s race, Tara and Erins’ first meeting and the rest of the story. After that, I hope you will give serious thought to being a bone marrow donor too.
What prompted you to become a bone marrow donor?
I first heard about bone marrow transplants during my childhood. One of my brother’s Little League teammates, Andrew, was a leukemia patient. Our families were friends, and watching their family battle the disease made a huge impact on me. I found it kind of miraculous that something from inside one person’s bones could save the life of someone else with cancer. In college I finally had the opportunity to register as a potential donor and I jumped at it.
How long was it after you signed up before you matched a patient in need of a bone marrow transplant?
I’ve actually matched two different patients! The first time was about a year after I registered. I was confirmed as a match for a then 3 year old boy with leukemia, but as it turned out, I was not needed to donate.
The second time I matched was in 2000, about five years after I registered. I got a letter in the mail telling me that I was a potential marrow match for a 30 year old woman with Acute Myelogenous Leukemia, and asking me if I would consent to further testing to confirm the match. The testing was just some blood work. Once I was confirmed as a match, I was asked to set up an appointment with the donor center. They gave me a lot of information about the two different collection procedures and answered all my questions. They also gave me a complete physical to make sure that I was healthy and that donating would not have any risks for me. The donor program was really helpful and continually reminded me that I was under no legal obligation to donate and that I was allowed to back out at any time. For me, backing out was never an option…I didn’t think it would be fair to the patient to be told she had a donor and then for me to back out! The donor program also made it very clear that there was no cost to me or my insurance to donate. All the expenses were already covered.
How long was it between the time that they found the match and you had to have the procedure done?
I got the original letter that I was a potential match in mid-August, 2000. I was confirmed as a match within two weeks and donated for the first time on October 10 and 11, 2000. Much of that timing depends on the need of the patient and the availability of the donor, so it can vary from case to case. The donor program told me that they would work around my availability. I worked hard to be available as quickly as possible. In our case, my recipient had a very aggressive subtype of AML, so time was very important.
Were your employers supportive of the time that you had to take off work to do the procedure?
My employers were incredibly supportive all three times that I donated for my recipient. My donor center was several hours away by car, so I had to take off time not just for the donation procedures, but also for the physical and to sign papers. At the time, I was a live-in nanny for a family with two small children. They didn’t even hesitate to give me the time off, paid, to do what I needed to do. They understood that someone else’s life was at stake and believed, as did I, that our own schedules could be flexible for that!
Did you have second thoughts after you got “the” phone call?
Not once. Some donors might. It is not uncommon for matched donors to have a lot of questions and fears based on lack of information or myths they’ve heard about donating. The donor coordinator and her staff did an excellent job of easing any concerns and explaining everything to me. It was never once a question of whether or not I would donate…I knew I would.
One question I had was how to explain the procedure to my 5 year old charge. A neighbor had scared her by mentioning “a really large needle” and we wanted her to not be afraid for me. I called my donor coordinator and she sent me a copy of an age appropriate coloring book that explained the whole thing for my charge. It helped her to understand that the whole procedure was safe for me and why it was important for me to do it.
Did you know the person you were donating for?
No. Matching an unrelated recipient is completely anonymous for both parties involved. Laws vary from country to country on when, or if, the recipient and donor can know each other’s identities. In the US, federal law requires that the two parties be kept completely anonymous for one year from the date of transplant. A donor is only allowed to know the age, gender, and illness of the potential recipient. After that, if both parties agree, the NMDP will put them in touch with one another. In the meantime, however, donors and recipients are allowed to exchange cards and letters through the program. These are screened so that any information indentifying the person or their location is kept out. However, there is no requirement for contact, so either side can choose not to participate in communication.
What was the procedure like?
It was pretty easy and reasonably painless. There are two collection procedures. The first, and the one most people are familiar with, is the traditional bone marrow collection. This is a minor surgical procedure done while the donor is under general anesthesia. Special needles are used to withdraw the marrow from the back of the pelvic bones. It is usually an outpatient procedure with no overnight hospital stay for the donor.
The second collection procedure is called Peripheral Blood Stem Cell Collection, or PBSC collection. This is the procedure I did all three times that I donated for my recipient.
Don’t get this confused with the hotly debated issue of embryonic stem cells, as it does NOT involve those. As adults, we have adult stem cells in many parts of our bodies, including in our blood stream. These stem cells are what a marrow transplant is after. Since marrow is stem cell rich, that’s where they’ve been taken from. Now, however, PBSC collection offers a way to get those stem cells without surgery for the donor.
For 5 days before the collection, a nurse came to my house and gave me injections of a drug called Filgrastim. This stimulated my marrow to produce many more stem cells than I needed and those stem cells ended up in my bloodstream, making my blood stem cell rich. To collect those excess stem cells, needles attached to tubing were inserted in both of my arms and hooked up to an apheresis machine. The machine pulled my blood from one arm, spun it in a centrifuge to separate out the stem cells, then re-warmed my blood and sent it back to me via my other arm. The stems cells were collected in a plastic IV bag. (They’re pink, by the way!).
Depending on the need of the patient, a donor will sit for this collection for one or two days, for up to 6 hours each day. In some cases, instead of collecting this way, the donor can have a central venous line inserted in his/her femoral vein. This is basically a port that is surgically placed just for the collection. I had this done for my first and third donations. The surgery was super simple, I just had local anesthesia so I was awake for the placement. The removal of it is not a surgical procedure, they just pull it out and put pressure on the site!
It sounds kind of scary with all those needles, doesn’t it? In reality, it is really easy and painless to do! The worst part, when they use your arms, is that you can’t move your arms…so you’re stuck there and have to rely on everyone else to scratch your nose for you, or hold your drink for you, or whatever you need doing. But other than that,all you do is lay there…it’s almost boring and I slept through good chunks of it every time! I was back at work chasing my youngest charge…a very active two year old…the next day.
Did you ever hear from your recipient?
I did hear from her. I even met her! Three weeks after the first transplant, she sent me a card through the NMDP. In it, she wrote “Thank you for giving me a second chance at life, and with my baby girl.” I remember getting that card and sharing it with my employer…we both stood in the kitchen with tears pouring down our faces. She even took it to her office to show people! In February, 2001, I was contacted and asked if I would be willing to donate a second time. Even though it was their busy season at work, my employers told me “Go when they need you!”
During the second procedure, my donor coordinator pulled out a letter that my recipient had just sent. It was nine pages long! In it, she told me who she was…a cop, a musician, a person of faith, and a mother. She also detailed for me her illness. She wrote, “Did you know two lives were saved?” She was 24 weeks pregnant with twin girls when she got sick with an extremely aggressive leukemia. Her family was told to prepare for three funerals. A couple of days later, she went into labor. Her first daughter was stillborn, but her second daughter came out fighting. “I knew she would make it,” the letter said, “And she has!” She included a picture of her daughter and wrote on the back of it, “This is Clara.” I don’t think there was a dry eye in the donor center when that letter was being read to me.
A few months later, in June, I was contacted by the NMDP asking if I would consent to donate for a third time. This is not common, and donors are under no obligation whatsoever to agree to further donations. For me, however, it was a no brainer: of course I would donate again! I had that baby’s picture, and I knew she needed her mamma. That weekend, after the phone call asking me to donate again, I was at a party for a boy that I had taken care of since he was a baby. It was his 14th birthday/8th grade graduation/Confirmation party. Several of his dad’s relatives drove in from Ohio. A couple of them were questioning me at length about my experience as a donor. I had finished telling them about the first donation when one of them asked me, “Was the transplant a success?” I told him that my recipient was just getting ready to go back her her job as a police officer when she got sick again. He and his wife exchanged a glance and he asked me if I knew who this person was. “No,” I told him. “I’m not allowed to know. But when I pray for her, I pray for Clara’s Mommy.” His wife gasped and said, “Oh my God, that’s Erin!!” It turns out, they knew my recipient!! I could not believe it, it seemed too surreal. In an even bigger coincidence, the very next day the Cleveland Plain Dealer was starting a six day, front page series of articles about Erin and her leukemia battle.
I got up super early the next morning and found the website for the Plain Dealer. I still didn’t fully believe it. See, at that point, I thought I might not ever get to meet my recipient. Our one year marker was in October, but I was leaving the US in August to spend two years doing mission work abroad. I knew, since I’d been asked to consent to a third donation, that her chances at survival were not stellar. So when I found the first installment of the article series online and saw that all the details matched the details she had given me in her letters, I just bawled my eyes out. I immediately sent an email to the journalist. I think I wrote something along the lines of, “Please don’t think I’m some internet psycho! I’m Erin Jones’s stem cell donor. Can you please tell her thank you for the picture of Clara and that I’ll write to her soon?” and I included my contact info. I got a phone call that night from a very excited journalist. She wanted to be absolutely sure I wasn’t a prankster, so she asked me what gift I had sent with the first donation. (That hadn’t been published yet!) I told her I sent Erin two pins…an angel and a bumblebee. She quickly asked me if I wanted to meet Erin. I absolutely did, but only if Erin also wanted to meet.
The next day, I got an email from Erin’s husband. Just as I finished reading it, an IM window popped up…from them. Erin suddenly realized that she could call, too. “Wait” she wrote, “I can just call you right now!” and my phone rang minutes later. We made plans to meet just a couple of weeks later, after she and her family returned from a vacation.
What was it like to meet Erin in person?
It was incredible. I was so nervous, what if they didn’t like me? I even called her before I drove down there to ask her what she was wearing so I wouldn’t be over or under dressed! It was July 16, 2001…Clara’s first birthday. I had no idea what to expect. There’s no protocol for something like this, no script to follow or procedures to adhere to. It is just a lot of emotions. I spent the three hour drive going over the whole experience in my brain and trying to imagine what the rest of this day would be like. I was walking up the walk to Erin’s parent’s home when this petite dynamo of a woman threw the door open to greet me. Erin threw her arms around me and in that moment, the whole experience became suddenly, implausibly real. It’s hard to explain. But suddenly, the person who I’d only imagined before was here, in front of me, hugging me and thanking me. I was still reeling from that when Erin’s mother, Diane, hugged me. Meeting Erin made it all very very real for me. But meeting her mother put it all in a whole new perspective. Up until then, donating had seemed like such a small thing. And it really was a small thing…for ME. You don’t have to do anything to be a donor…you just have to be the match. You can be a complete jerk of a person and still match someone, you know? Once you match, you just have to show up. You don’t have to put any real effort into it other than laying there. So it felt like such a small thing to do. But when Diane wrapped her arms around me and began to sob, “Thank you. Thank you. Oh my God, Thank you.” over and over, it made me realize: This was no small thing for them. This was everything to them. Erin wasn’t just some random “30 year old woman with Acute Myelogenous Leukemia.” She was a wife, a sister, a mother…but first, she was someone’s daughter. Someone’s beloved child who had almost died and by some biological coincidence cells from inside my body meant that she was alive that day. That was no “small thing” for her family.
Would you do it again?
I would do it again in a heartbeat, without question or hesitation. It is so very simple to do. You don’t have to be good at anything. You don’t have to have a special skill or talent or a certain level of education to be a marrow donor. All you have to do is be the match. Being a match is beyond our personal control, it’s a biological coincidence. You match, you show up, and you lay there. It’s really that easy and just a day or two of your time. But for someone else, it can be the difference between living or dying.
How has being a bone marrow donor changed you?
Being a marrow donor taught me that my existence on this earth has a purpose beyond my own corner of the world, beyond my own loved ones, beyond my own dreams and abilities…and that this is true of all of us. Regardless of beliefs, appearances, choices, circumstances…every person is valuable and has purpose simply because they exist.
Yes, I am still involved! I’m still in the registry as a potential donor, of course. Recently, the NMDP renamed the donor registry as Be The Match. I am an Ambassador of Hope volunteer with the Detroit branch of Be The Match and I am on the Leadership Committee. I help recruit and register new potential marrow donors at marrow drives in my area and I help out, when I can, in whatever ways they need. Recently, this gave me the chance to participate in a very special event: A first time meeting between a bone marrow transplant patient and his marrow donor! The donor traveled from Texas with his wife and three small children. Since I’m a professional nanny, I was asked if I could help watch the three children during the meeting and press conference. Since this was to happen during my normal work hours, I asked my employer if I could take my charges with me. She was completely supportive. I asked another nanny, April Krause, to come with me because I thought that six children ages 4 and under in an unfamiliar and not-child-friendly place might be a little crazy. We had a fantastic morning! I brought a bag of toys, books, crayons, paper, and snacks. The children were all fabulously behaved, we were even able to take all six of them into the press conference and keep them quiet and occupied. We got a lot of great compliments from the people who saw us with the children. It was fun to show off our nanny skills, and it was amazing to see another donor and recipient meet each other.
What is the need for marrow donors?
The need is great and constant. About 30% of patients who need a life saving marrow transplant will find a marrow match within their own families. The rest of them, about 6,000 people on any given day, have to rely on the hope that a complete stranger will be willing to give them this gift. My recipient had three siblings, but none of them was a match for her. There is an extra need for minority donors. Because a marrow match is a genetic type of matching, patients are most likely to find a match within their own cultural group.
Bone marrow transplants are not done lightly…if someone needs a transplant, it really is a matter of life or death for them.
What does someone need to do to become a donor?
They need to join the registry!! It’s very easy to do and there are two ways to do it: online or at a marrow donor drive.
With both ways, there is a form to fill out. This will ask you who you are, how to contact you, and some secondary contact people. They ask for this information because once you join the registry you are on the list of potential donors until you turn 61 years old. Chances are, you might move or change contact information between now and then…but if you end up matching a patient, they need to reach you quickly! The form will also ask some basic health questions and some question about your cultural background. Once you’ve filled out and signed the form, the test is a simple cheek swab test. There are no needles involved! There are four swabs. You’ll use two on each side of your mouth, swabbing the inside of your cheeks. It takes a few seconds and then you’re done! You’ll get a marrow donor card in the mail in about 4-6 weeks. Then, you just wait to be a match!
To order a kit online, you can go to http://www.bethematch.org/ . It costs $52 to order the kit. Some people balk at this, but please understand…it actually costs about double that to run the lab work and HLA typing to put someone on the registry. This is the ONLY time any donor or potential donor is asked to pay for anything. About once a year, if there is funding, the NMDP runs a massive nationwide donor drive. During those weeks, the kits are free.
If you prefer to register in person, you can keep an eye out for donor drives in your area. http://www.marrow.org/JOIN/Join_in_Person/index.html
I’m also VERY excited to announce that I’ll have a table and registration kits available, free of charge, at Nannypalooza 2009!! Conference attendee’s will be able to register in person that weekend thanks to the generosity of the Detroit area Be The Match program.
www.cleveland.com/erinsrace (whole article series about Erin)
http://www.cleveland.com/erinsrace/index.ssf?/erinsrace/more/erin7.html ( the article about meeting Erin)
Be The Match/National Marrow Donor Program
http://www.bethematch.org/ or http://www.marrow.org/
Nanny Support Group Tara founded
http://www.michiganpronannies.org/ (michigan professional nanny association)
News story about Texas man meeting his donor
http://www.karmanos.org/view_news.asp?id=631
Tara Lindsay has been taking care of other people’s children for over 25 years. She attended Central Michigan University where she studied Special Education, Early Childhood and then pursued a degree in Public Health Education and Health Promotion. After finishing at CMU in 1996, Tara recognized her deep love for the work of nannying and chose to pursue it as a full time career. She has cared for children of all ages, stages, and developmental ability level as well as worked with a variety of family types.
From 2001-2003 Tara did mission work at an orphanage in the rural Honduras.
After she returned home to Michigan, she joyfully reentered the career she loves. Tara currently is a full time, live out nanny for an Oakland County family with a preschool age boy and toddler twin girls.
Tara is a co-founder and Co-Director of MPNA. In addition, she serves on the national Board of Directors for the Association of Professional Nannies and also answers questions on the websites “ASK NANNY”. In her free time, Tara enjoys a variety of other volunteer activities, scrap booking, singing, sporting events, and social activities.