Losing a part of me

I just received some sad news and wanted to share it:

The Leukemia patient who received my stem cells passed away last month.

Back in March of 2001, before I -- or anyone else, really -- was blogging, I had a very unique opportunity to donate stem cells. Here's a lengthy summary that I wrote last year for a friend of mine who asked about it:

When we were in college, there was a sponsored drive to get people registered in the Bone Marrow registry of the National Marrow Donor Program (NMDP). Normally, it costs money to get your blood drawn and typed for the registry but since this was a sponsored drive, it was free.

Skip ahead a few years, I'm out of college and working for Staples...

One afternoon, I got phone calls from both my mother and my mother-in-law saying that the Dana Farber Cancer Institute in Boston is trying to get in touch with me. (Since I'd been in college when I got into the Marrow registry, they had my college dorm address, but I'd listed my parents and Rachel's parents as emergency contacts -- so that's how they tracked me down.)

I called and they told me I was a potential match for a cancer patient. They needed me to come into Dana Farber Cancer Institute (attached to one of the hospitals in Boston) for additional bloodwork to confirm that I was a match. I think I went in twice -- once for the bloodwork, and the second time for a complete (free) physical exam.

After all that (probably about 3 weeks have passed total), they told me that I was a match for a 57-year old male with Acute Myelogenous Leukemia (AML). His doctors were requesting that I donate Peripheral Blood Stem Cells (PBSC) -- basically an alternative way to get the same stem cells that are found in bone marrow. They explained that PBSC transplants were still considered an experimental procedure by the FDA, so I had to sign that I'd agree to participate in the study. They explained that this is the way it would work:
I would come in a few days before the transplant to get an injection of filgrastim. It's a medication that they normally give to cancer patients to increase their stem cell production, but that for PBSC donation, it works really well to get more stem cells into the bloodstream of the donor. They also told me that healthy people sometimes reported bone pain and other side effects from filgrastim (although cancer patients usually report feeling better when they got it).

Anyway, they told me I'd have to come in for five consecutive mornings to get a filgrastim injection. On the fourth and fifth day, they would hook me up to a pheresis machine for 5-8 hours per day to collect the stem cells. The pheresis machine is the same one that's used by people who donate platelets -- basically, they draw blood from one arm, put it through the machine to extract the stem cells, then put the rest of the blood back into the other arm.

I remember they asked me to be very certain that I wanted to go through with the procedure before agreeing. Once I agreed to go through with it, they would start the cancer patient on a course of chemotherapy to kill off his cancerous stem cells (in preparation for giving him my own) -- and that if I changed my mind at the last minute, the patient probably wouldn't survive. Obviously, I agreed and they scheduled me for my filgrastim injections and scheduled the patient to receive the transplant.

I had pretty severe side effects from the filgrastim injections -- fever, nausea, bone pain. It felt like having the flu and being really sore. After the first couple days, I stayed home from work and had lots of Gatorade and chicken soup, pretty much spending the whole day in bed or lying on the couch.

The collection procedure wasn't bad. I've donated blood before so I could handle the needles. I had to lie on a gurney the whole time while I was hooked up to the pheresis machine -- I think it ended up being about 6 hours, for two days in a row. I had my own TV and they had a bunch of movies, plus lots of snacks. Several of my friends who worked near the hospital dropped by to visit throughout each day.

They don't allow donors or patients to share any personally identifiable information for 12 months -- so all I knew was that the patient was a 57-year old male. They wouldn't tell me where he was, but they did say that he'd receive the stem cells the same day I donated them. (well, the second day I was hooked up to the pheresis machine)

Although you can't share information, NMDP does allow the donor and recipient to exchange letters anonymously. In fact, they even censor the letters to make sure you don't say anything that could give away your identity. I sent a letter, and received several letters from the recipients' family. Since the matching traits are genetic, I guessed that the patient was probably of Eastern European Jewish ancestry -- several of the things in his family's letters also tipped me off. (Turned out, I was right)

Anyway, 12 months later, we finally did exchange contact information. His name was Marshall Kahan and he lived with his wife in Southern California. They have 2 kids and several grand-kids. He is a retired school-teacher.

We've kept in touch. Last year, I went to San Diego for work (and brought Rachel with me) and Marshall and his wife, Toby, met us and took us out for lunch. It was pretty amazing to meet him. His recovery has been remarkable -- I guess it's pretty rare to recover fully from AML. As of March, he'll be 6 years cancer-free. We still keep in touch via email -- in fact, they're on the distribution whenever we send out pictures of Seth. :)

So that's the big story. Oh, and since the PBSC procedure was considered experimental, they asked me to come in for bloodwork at 6 months, 1 year, and every year thereafter to prove that there are no lasting effects to the donor. I kept up with it for a couple of years, but after a while I told them I didn't think it was necessary anymore.

I'm sure you can find more about PBSC on these here internets if you really want to know...

Marshall died July 27th of Epstein-Bar syndrome, complicated by his weakened immune system. His daughter sent me a very kind email to share the sad news. Marshall lived six and a half years cancer-free, evidently a remarkable recovery.

Being a donor was an amazing experience. Imagine how much more likely people would be to donate blood (or platelets) if you got a thank-you letter from the recipient's family, explaining how you helped to save their life. Powerful.