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My Marrow Donor Experiences

 

At the end of June 1997, I recieved a call from the National Marrow Donor Program Registry with which I’ve been registered with for 4 years. To register, I had to give 2 tubes of blood for them to do a partial profile. They said that someone in need of a bone marrow transplant had scanned their database and I came up as a partial match, "Would I still be interested in donating??" . Since that question, I’ve been on cloud nine!!! :) At that point the NMDP turned the management of my case over to the local Red Cross. I had to go down and give 8 tubes of blood for them to do a full match. You generally get a match from within your ethnic group. They look at possible getting a family member to match up first, but no one in that family matched up. Out of 3,000,000+ on the Registry, I was the only match. The match isn’t done by blood type. There are massive indicators that need to match up for a transplant to take.

A week later they called and said I was a ‘perfect match’. A 3 1/2 year-old girl who has Osteopetrosis was going to be the recipient. Osteopetrosis is a disease where the Osteoclast in your marrow isn’t reabsorbing the bone as it grows inward. Her bones were growing shut. Like my husband says, the minute I heard it was a little girl, it was a signed deal. We had to wait a week for her doctors and parents to OK it that they wanted to continue. Another long wait. I did a lot of searching on the WEB and in the hospital library for info on Osteopetrosis. There were just a handful of cases documented. I was able to find a support group on American Online of donors and recipients. While searching the WEB for info on transplants, I found she would be receiving my immune system and my DNA. The DNA part really caught me off guard, I didn’t know this. Recently there was a teenager in Beaufort, SC with straight blond hair. After her transplant she started growing wavy brown hair. On August 3rd, the Marrow Manager came over to the house to lay out all the details of what was to happen to me and the little girl. She has her own manager. That way my manager is only concerned about my welfare and there is no conflict of interest. My husband, daughter, and mother were there. We watched a video that explained everything, then we went through it bit by bit. I was like, Alright!!! Let’s go, I’m ready! I was given the option of participating in research being done. They took more blood from me and the girl. This was so they can test different drugs to see if any might make the transplant take better or to fight off a diesease called Graft Versus Host Disease, which she did come down with after all. I’ll explain this later.
I had to get doctor appointments set up for a complete physical, Pregnancy Test, EKG, chest X- Rays, and blood work. I also had to do an Anesthesia consultation. When the lab got the request for blood work they were shocked. They had never drawn that much blood on anyone before. It took 11 tubes of blood. I came within a hair of passing out. All the test came back OK . There is a history in my family of heart problems, but they were willing to except the possibilty.
Tuesday, August the 26th was a very real low point for me. The R.C. called to say they had checked my off as clear to go and that the little girl started 10 alternating days of chemo/radiation that morning. I just wanted to cry all day long. I guess it was good that I was at work or I think I would have broke down and cried. I was under strict orders to do nothing that was dangerous and to stay away from anyone who was sick.. Once she started chemo/radiation there was no turning back. Even as I type this, the tears and emotions are welling up again. This has been a very emotional few months.
On September 4th Mom drove me to Jacksonville. My husband Tony and daughter Shannon came down that night.
The R.C. marrow manager also went down. She took me to meet the doctor who would do the surgery so I could ask any questions I had. On the 5th, I went into surgery and did OK. Since she was so small they needed just a small amount. They made two incisions about this long, _ , at the top of the glutimus-maximus muscles, about two inches out from the spine on both sides. If it had been an adult, I would have had 2-3 incisions on each side, no stitches though. Through the holes they inserted an apparatus to drill into the hip bone. Then they inserted a syringe into the bone to draw the marrow out. Right after the surgery the R.C. took off to deliver the marrow. It has a 23 hour lifespan. I had no complications other than the fact that they went through the glutimus-maximus and it made getting up veerryy hard. It wasn’t until 11pm that I decided I had to try to get up on my own. I went home the next day. I was lucky enough to get the next week off of work with sick pay. It took until about Monday for me to start getting out of the house to drive. People who don’t have strenuous jobs like I do are usually able to go back to work on Monday. If your job is strenuous, the R.C. will contact your employer and ask if they will give you the time off with pay as a dontation. A lot of times they will.
There are standards set up for the communication between recipient and donors. The recipient has a right to their privacy and it’s up to them whether to communicate or not. Rarely do they not want to write to thank you and let you know how they are doing. I was asked if I wanted to get the 30, 60, 90, 120 day updates from her doctors. I was only told that it was a 3 year-old little girl with Osteopetrosis. After 1 year they will decide if they want to give me their names and I, if I want to receive it. I bought her a little music box and wrote a letter to her Mom and Dad. The R.C. reads all letters to be sure I haven’t put any indication of who I am. Then they send it to her R.C. for them to look it over. Then it was sent to her.
My R.C. manager has worked with this Transplant Team before so they called her a couple of days later. Under normal circumstances you wouldn’t get these little updates as I’ve been getting. They said the next morning her coloring was coming back. They said they would walk into the room and the mom would be reading my letter over and over. The music box got decontaminated so it could be put in her bed.
Last week I received a letter that the Mom had wrote, it doesn’t say anything about her progress. The R.C. called a few days later with the 30 day update. She has developed Graft Versus Host Disease. When someone receives a new body part, their body might try and reject it, this is their immune system trying to fight off foreign matter. What’s happening with her is my immune system is going in and saying her whole body is foreign and is trying to fight it. They have now put her on antibiotics.
On October 9th she went into Intensive Care. She now has internal bleeding and isn’t doing good. The R.C .says don’t give up hope. They say when adults start going down hill, it’s hard for them to make a come back. With children they can turn around much easier. Their internal organs haven’t gone through all the years of abuse from drinking, bad diet, and other detrimental habits. I hope it’s a good sign that I haven’t heard from them in the past 10 days. I guess I’ll just have to continue to pray for her recovery.
This has been such a wonderful experience and everyone who finds out about it keeps asking how she’s doing. They can’t helped but be touched by the whole thing. I know two people have gone down to the R.C. and signed up since the start of this. I hope in reading this, a seed has been planted in some of your minds that will lead to your getting onto the Registry. This is really a personal matter and everyone has their own feelings on it. The thought that led me to get on the registry was, There might be someone sitting in the hospital dying, waiting to find a match and I’m the only one who would match up. It took almost 1 ½ years for that thought to get the best of me. I’m glad I gave in and did it. The thought I’d like to leave you with is this, Why wait until you die to give the Gift Of Life? .


April update: She is not doing well at all. She has developed GVH Disease. A little bit of this is good, you want the new marrow to attack the old marrow and take over. Her case is extreme. They said we'll just have to wait for a mircle to happen or the end to come. The transplant team said that if any little girl could make it, it'd be this one. She has been such a fighter. I major factor in her progress has been the constant attention of her mother, she has been with her daughter day and night. I went to the Catolic Church where my daughter goes to school to say a prayer to Mary to protect this little girl and to help the family through whatever God has planned for them.

May update: We are unclear as to why, but they started taking her off of all meds. All I can wonder is did they think it was near the end for her and were discontinueing treatment?? Once the meds started clearing out of her system she started getting better. She was just having reactions to the meds.

My Red Cross representive had a chance to stop at the hospital where she was. He says shes a little butterball!!! That's good, I worried about the fact that she weighted only 25 pounds. They say she is well enough that they are going to try to move her to a Children's Unit. Found out that the mom is Korean. This was a real surprise due to the fact that matches very rarely cross ethnic lines. I guess she had enough of her dad's genes for us to match.

June update: Today is June 22nd, 1998 and it's my 39th birthday. I got a great present today .
The news from Red Cross says, SHE HAS GONE HOME!!!! They found that she could get treatment if she needed it in her hometown. I won't get the monthly updates anymore from the Red Cross though, I'll just have to wait on a letter from Mom. (Got a letter on June 25th, the only new info was that she had been through 3 Code Blues while in the hospital.)

September 18, 1998: I received the personal information on "my little girl" a few days before her September 5th anniversary. I've waited until now to call because I really just didn't know what to say and I was a bit nervous. Her name is Jean and she lives about 3-4 hours south of me. I wasn't expecting them to be so close to us. My Red Cross representative, Jeffrey Koenreich, had the honors of also being Jean's Marrow Drive Manager. Jeff has never had to work both sides of a transplant and he had to be very careful to not leak to either side that he knew who the other side was.
The Red Cross is blessed to have him, he puts his heart and soul into his work. Jean's mom, Quie, was so happy to hear from me. Quie is from Korea. She says Jean is real active and enjoying pestering her two brothers. The boys are now having to defend themselves by saying, "But Mom, Jean did it!!!". Quie feels that Jean's eyesight is improving slightly. Where she use to feel around and touch, she now scoots straight to the cabinet and starts taking things out. Since she still has a Trechea tube in, she can't really speak to say that she sees. Quie wonders if the change of the bone structure hasn't maybe released some pressure off of the optic nerves. At this time she is 4 years and 3 months so they are going to have to do some training on her speech. Jean's hair is changing from a reddish-brown to a darker brown. Quie says Jean is more active now than before the transplant and she has a hard time keeping up with her. Jean is also more outgoing and getting into any and everything. It was nice to finally talk to the mom. I've been real impressed with the love and devotion of this mother. She stayed with Jean each night to tend to her, the transplant was done in Tampa. The dad was home with the two boys and tended to their country store. They would visit the hospital every other weekend.

I hate to admitt that I haven't checked on Jean in a few years.  Everyone has different emotions during this process.  Mine is one of being affraid to get attached and then loosing her.  I will check back in once I get the courage to call her.

 

 

cjjoiner77 cjjoiner77 46-50 3 Responses Jun 13, 2009

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What a great story! i have always wanted to do this in honor of my best friend, Caroline who died in 6th grade from cancer. ( i am only 13 and in 8th grade, so it wasnt to long ago) It turns out i found a place that would accept kids 13 and older! The thing is i have a huge fear on needles! I cant stand them! I just worry that that will stop me! But your story is truly amazing! It would be a honor to say to your kids one day i saved this little girls life! I hope that he is doing well! <br />
<br />
Thanks,<br />
Kylie

Thanks for the reply. Even if you don't get called, just doing the drive is sharing the message. Someone can hear it on the radio, mention it to a friend who just happens to have been thinking about doing it. Everyone who takes part passes it on. I too would hope that your efforts will match someone up down the line. A lot of times a drive for a specific person might not find them a match, but someone else who been searching the registry could match up. <br />
<br />
Thanks again, Cathy

What a fantastic story! Thank you so much for sharing. <br />
I joined the registry many years ago, but have never been called. I also organized a Marrow Donor drive through my employment and was absolutely shocked and overwhelmed at the number of people who turned out to sign up. They were beating down the doors hours before we were to open and in the end, we signed up over 400 people to the registry. Many people cried when they found out they were not eligible to donate. <br />
I don't know if I'll ever be called, but I hope that someone was saved by one of the people we signed up. <br />
Thank you again!