I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).

The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?

This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.

I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.

Labels: Emru, minority donors, New York, NMDP

For people who only know Emru through this blog, he and I live in Montreal, Quebec, Canada.

Today, another Quebec native, Diane Hébert, passed away. She was the first recipient in the province of both a heart and lung transplant. I remember in my early teens seeing her face on the television and in the papers. She made news with her story, and went on lead a normal life, write an autobiography, Second Chance, set up a foundation promoting organ and tissue donation that also supports patients awaiting donation (including those awaiting bone marrow), and live for 23 more years, leaving this world at 51.

I panicked last month when I noticed my organ donor sticker on the back of my Medicare card had worn down so it was hardly readable. My new sticker arrived in the mail last week with my new card, to my relief.

Her efforts made organ donation acceptable in Canada, and very much so in Quebec, which has the highest number of organ donors per capita. People became aware that lives could be changed for the better with their gift.

While bone marrow and stem cell donations are only provided by living donors and one must consent to be added to a different registry, her efforts had an impact on how people feel about helping one another in this manner and made them realize how meaningful it is to give someone a better chance of survival even in the direst of circumstances.

In the title, I include Diane Hébert's transplantation year as her "birth date." It marks the beginning of her second chance at life.

Labels: Canada, organ and tissue donation, Quebec

On Wednesday it was noted that my hemoglobins were a bit low, so on Thursday I had to get two blood transfusions (my 25th and 26th, for those keeping count; my 37th and 38th overall). As I've mentioned before, the whole procedure is actually quite boring. This one was more so because (a) the clinic was completely full, and (b) there had been a mix-up with my cross-match, which meant it had to be looked for, determined to be missing, and then redone. Even though I got there at the respectable hour of 9:00 a.m., I didn't leave until 5:00 p.m.—a new record.

The time was passed by reading two Invincible trade paperbacks, watching two episodes each of Battlestar Galactica and How I Met Your Mother, reading a few articles in Interactions (an Association for Computing Machinery publication on human-computer interaction, or HCI), and listening to a Studio 360 podcast. Oh, and napping as best as I could.

It really is a lot of effort to do nothing all day. I went home and ended up falling asleep early.

Anyway, earlier in the week we loaded up the car with all of my immediate family (except my sister, who was at work) and drove down to Ottawa to consult with transplant specialists to get more information and decide which way to go in terms of my transplant. My original thinking had been to undergo a fourth chemotherapy treatment that would use different drugs in the hope that it just might put me into remission, as bone marrow transplants have a better chance of success if the patient is remission.

However, after speaking at length with the doctor, it seems that this isn't the best way to go. It's felt that these chemo drugs won't have a great chance of getting me into remission, a sentiment shared by several of the hematologists at the hospital (including my doctor) and myself. I already knew that, but was willing to go for the long shot. The specialist's experience, however, suggests that it would be better to get the transplant while I'm in the best shape possible—that is, as healthy as can be aside from the leukemia—rather than ravage my insides in the hopes of getting into remission.

What it comes down to is that any choice I make is a risky one; I just had to choose which path is, in the long run, the least risky. After thinking about it for a little while, I decided to go for the transplant as soon as possible, without being in remission. We haven't sorted out all the details yet, but assuming my schedule, the Ottawa Hospital's schedule and the donor's schedule all sync up, I should be undergoing the transplant procedure in late July or early August. I'll be spending the weeks leading up to that preparing in a variety of ways (more on that later) and trying to get myself in the best shape possible, through a careful combination of diet, rest and exercise. I'm also hoping to enjoy a bit of the annual Fantasia film festival, especially as it's probably the last film festival I'll be able to attend for 2008.

Labels: Emru

From Pakistan Daily:

A Hounslow woman is facing a race against time to find a bone marrow donor from the Asian community that will save the life of her leukaemia-stricken niece.

Determined Monica Grewal, 37, has made an emotional plea for people to come forward and help six-year-old Rianna Deol get her desperately-needed transplant.

But because individual genetic make-up is so varied, her best chance of a match is from someone of the same ethnic background - and only 4 per cent of donors on the Anthony Nolan Trust's bone marrow register are Asian.

Mrs Grewal has urgently called for potential donors to join the register at a special clinic between midday and 4pm tomorrow (Sunday) at Saks Hair and Beauty Salon at the David Lloyd Club, Southall Lane, Hounslow.

Labels: bone marrow donor clinic, bone marrow drives, UK

From the Main Street News:

As Booth receives what may be a life-saving transplant of bone marrow Thursday, July 3, they’ll be holding a blood drive in his honor at New Hope Baptist Church.
The American Red Cross blood drive, set from 2:00 p.m. to 8 p.m., has two purposes. One is to honor Booth while helping the Red Cross meet its blood needs. The other is to raise awareness of the National Bone Marrow Registry that helped Booth find a donor.

“They will just test people with a mouth swab and see if they’re interested in donating bone marrow,” said Stowers, who added that there is no charge for the screening.

“We hope to have at least 50 people,” said Stowers. “Of that, I would expect 35 to be able to donate. I’d like to shoot for a hundred. You don’t have to be able to donate blood to be a bone marrow donor, and people could make a donation to the Red Cross or sign up for the bone marrow registry.”

New Hope Baptist Church is located at 211 Stapler Drive, at the corner of U.S. 441 and Old Kings Bridge Road a mile south of Benton Elementary School.

Labels: bone marrow donor clinic, bone marrow drives, Georgia, US

I got this a little late. From the Press-Telegram:

[Krissy] Kobata's rare condition is compounded by the lack of a bone-marrow match, which doctors say is now an urgent need. Kobata's family is of mixed heritage - Japanese and Caucasian - which has made it more difficult for her to find a donor match. Kobata's brother, her only sibling, is not a match.

Kobata's family and the Asians for Miracle Marrow Matches, an affiliate of the National Marrow Donor Program, have arranged for bone-marrow drives in Los Angeles County, including Long Beach.

The only drive that hasn't passed a yet is this one:

Southeast Japanese School and Cultural Center, 14615 Ridley Road, Norwalk; July 26, 3 to 8 p.m., and July 27, 2to 6 p.m.

Labels: bone marrow donor clinic, bone marrow drives, California, US

Pat Pedraja is a young man on a mission. Pat is seeking to educate people about the bone marrow registry and register more people, especially minority donors. In Canada, it is free to register. In the US, if it is free, it is because someone else paid for the typing costs already. Someone contributed money or raised a lot of funds to ensure people would be able to register.

Unlike Canada, the US runs bone marrow drives, which are a proven method for recruiting a large number of people and diversifying the registry. Pat pledged to recruit 2007 people for 2007, and ended up recruiting over 6500 people in over 30 US cities in 3 months. This year, he is back on the road again, driving for donors.

Pat does not require a donor, but this 13-year-old 2007 CNN Hero has lived with leukemia since he was 10 years old. Pat writes:

Your vote will make a difference!
HI, it's Pat from Driving For Donors!

I need your votes for these 2 awards. To me it's about more than winning a contest, it's about saving lives! I have registered over 10,000 new marrow donors and helped find 4 life saving matches for people in need! The more people that hear about my work and register as marrow donors the more lives we can save!

I need the help of adults and kids too! Can you please take a minute to vote and pass this on to everyone you know so they can help me as well!
Teen Choice / Do Something Award voting is for 13 to 19 year olds so (if YOU'RE NOT) please forward this to your kids and ask them to vote! If I'm the top vote getter, I'll be on the TEEN CHOICE AWARDS (with Miley Cyrus) and receive $100,000 for Driving for Donors! That can save a lot of lives!

Vote everyday until August 1st!

CLICK HERE to vote for Pat for the Teen Choice Do Something Award!

Labels: bone marrow drives, minority donors, NMDP, US

This is a bit convoluted, but it's the only way to explain the last few weeks, and what's to come. Please bear with me.

Four weeks ago, my medical life was relatively simple. I only had to take three or four pills a day: one pantoprazole tablet, which helps keep my reflux in check (I developed the reflux problem during my third round of chemo), and three pills of desmopressin per day, which moderates my diabetes insipidus (i.e., it keeps me from running to the bathroom twice an hour).

A week after that, things changed a little. We'd confirmed the donor, and were going to figure out the next steps soon. However, I'd also been retaining water, and my whole body was a bit bloated. My doctor said it was probably due to the desmopression, so she recommended diuresis to solve the problem. That meant going off the desmopressin and basically peeing the excess water out.

A week after that, the water retention problem had mostly gone away, though I was experiencing some of the constant thirst I'd had back in December, and of course I was running to the bathroom a lot. Meanwhile, my doctor noticed my white blood count was elevated, and said we'd want to get that under control before we started any new chemo.

Oh yes, about that chemo. This fourth go-round would use two completely different drugs that would attack the leukemic cells differently, and hopefully put me into remission. There is, of course, no guarantee, but my feeling was that since a transplant while in remission has a much greater chance of long-term success, it was worth a shot. So I slowly started taking desmopressin again to regulate the peeing, and was prescribed Hydrea to help keep my white blood count in check (it was elevated) in preparation for the chemo. I was also prescribed my old friend, Allopurinol, which counteracts excess uric acid.

Two weeks ago, I noticed that while both my feet were still kind of swollen, the left one was more so. And it was a bit less comfortable. Still, it wasn't drastic. I just kept elevating my feet, and taking minimal desmopressin—just enough to keep my sleep from being interrupted at night.

Eventually my right foot returned almost to normal, while my left foot seemed to be expanding. Furthermore, what started as a minor tingling in my shins seemed to be becoming more problematic—standing up meant a sudden pain in near my knee that slowly moved toward my ankles, almost like it was flowing. It made it hard to walk at first, though massaging my foot and walking made it easier. Oh, and the area around my calf was tender.

During my last checkup, my doctor mentioned that the Ottawa Hospital is one of the places that performs transplants on people who aren't in remission. We thought that was wonderfully convenient, as Ottawa is just two hours away and of course we'd still be under the Canadian healthcare system. However, after she looked at my foot and I explained my pains, she ordered an ultrasound for the next day, just to make sure it wasn't deep-vein thrombosis (DVT), essentially a clot that was blocking circulation. Just as a precaution, I was injected with a blood thinner. (For some reason, they couldn't use my chest catheter. I took the shot in the stomach, which hurts a lot less than you'd think.) Oh, and since my white blood count went up by 50% (!!!) my Hydrea dose was upped by 150%.

The next day was the ultrasound. Guess what: no clot! After a bit more examination, my perplexed doctor figured it might be cellulitis (no relation to cellulite, although my foot—then extremely and painfully fat—might have suggested otherwise). So for that I was prescribed Duracif, an antibiotic.

So here's my new daily drug routine:

- 1/2 an hour before breakfast: 1 pantaprazole tablet, five Hydrea capsules, and 1 desmopressin tablet (sometimes half a tablet, depending)
- at breakfast: 1 allopurinol tablet, 2 Duracif capsules
- at dinner, 2 Duracif capsules
- before bed, 1 desmopressin tablet

What fun! At least my foot is gradually deflating, and the pain has diminished considerably.

Anyway, the day after the ultrasound we heard from the transplant specialist in Ottawa. Seems he has some concerns about my forthcoming chemo treatment; he feels that those specific drugs, should they not put me in remission, are likely to cause complications on a transplant.

This poses something of a dilemma. The best chance of a successful transplant (one that cures the leukemia and the monosomy 7, but also one that I survive) is one that is performed while I'm in remission. But of course, the very reason I need the transplant—the monosomy 7—makes it hard for me to get in remission. The chemotherapy treatment we've been considering has a slim shot at succeeding, but as I said before, I'd been thinking that I'd rather take the chance and hopefully get a shot at getting in remission. However, now, as I understand it, undergoing this chemo and not getting in remission will actually put be more at risk compared to getting a remissionless transplant—however, getting a transplant without being in remission is already considerably riskier.

Tomorrow we meet with the doctor(s) in Ottawa to get more details and discuss options and probabilities. And then I distill all this knowledge and make the most important decision I've ever had to make it my life.

I hope this explains why, when people congratulate me about finding a donor, I say that things are far from over.

Labels: Emru

Emru and I get a lot of questions via email, phone, Facebook, and in person. I will be present on Saturday June 28 and Sunday June 29 to give a brief talk and take part in a question and answer period. This is a great chance to get a lot of information in a very short time and get your concerns addressed.

Saturday June 28
12:00pm -2:00 pm
3:00 pm-5:00 pm

Sunday June 29
3:00 pm-5:00 pm

Concordia University
De Seve Cinema
1400 de Maisonneuve West
Montreal, Quebec
(near Guy-Concordia metro)

Topics to be addressed:

- What are bone marrow, stem cells, and why would someone need a donation
- Myths surrounding bone marrow donation, and the actual donation process
- Why most people requiring a bone marrow transplant will require an unrelated donor
- How to register in Quebec and other regions
- How matching works, why so many people are needed and why ethnic background is a factor
- Shortages in certain donor pools and other issues

You can also add the event on Facebook and send it to your friends.

Labels: Canada, minority donors, Montreal

A few hours ago I was sitting in a radio studio for Université de Québec à Montreal's CHOQ-FM, where I was a guest on their Les Contes à Rendre spoken-word program. My friend Yasmin Hudsmith invited me to tell a story related to my cancer, and I ended up throwing out my first two efforts (a light-hearted look at the weeks leading up to my diagnosis and a more somber reflection on mortality and the people left behind) and quickly wrote the one I ended up using on the air, a tribute to one of my fallen cancer buddies.

I'm still in the process of editing the audio for the permanent Heal Emru archives, but I thought I should point you to the recording of the original broadcast in its entirety. If you understand French (I had the only spoken English segment), the whole hour is worth a listen. You can find today's airing at http://www.choq.fm/archives-contesarendre-19069-0.html#archives; either download the MP3 by clicking the really tiny "Téléchargement" link above the mass of text, or listen online by clicking the small play icon slightly above it. I start talking about 5 minutes in.

Update: You can now listen to the clip directly from Heal Emru by clicking here.

Labels: Emru

Today's bone marrow clinic in Huddersfield, UK was deemed a success by organizers attracting 53 people. This is the first clinic inspired directly from the challenge of Adrian "Sudders" Sudbury to educate people about bone marrow registration and donations in the short time he has left to live, after being treated unsuccessfully for two different types of leukemia (he is the only known person to have two forms simultaneously).

Two more drives will be occurring in July.

If you live in the UK or are an ex-pat, you may also be interested in signing the official 10 Downing Street e-petition before July 23, 2008 to fulfill Adrian's wish to see the basics of bone marrow donation and registration taught to teenagers in school as part of the curriculum. Please sign it only if you are from the United Kingdom.

Sign the petition

Labels: Adrian Sudbury, Anthony Nolan Trust, bone marrow donor clinic, Huddersfield, UK

On June 19, from 2 to 8 p.m. there will be a bone marrow drive in Montreal at the YWHA on Westbury. It is sponsored by Gift of Life to aid two men in the local Jewish community.

Donations are welcome, as the family must pay out of pocket since this is being done by a US registry. You have the privilege of getting swabbed for free, but please try to pay what you can, even if it is only a few dollars, because in the end, someone is paying for it.

Please note that this drive is not sponsored by Hema Quebec, who does not run bone marrow drives. Your name will go onto the National Marrow Donor Program database in the US, but if you are ever found to be a match, they will contact the appropriate registry.

No matter what registry you are on, please remember to keep your address information up to date.

To register any time in Quebec, go to Hema Quebec's website and download their consent form, or call (514) 832-5000 ext 279 and ask for a consent form to be sent directly to you. Read it, fill it in and send it back. You will be contacted to make an appointment at your convenience, where you will provide two vials of blood for typing.

Labels: bone marrow drives, Canada, Gift of Life, Montreal

It all started a month ago—on May 13, to be exact.

My mother and I had gone to the Maisonneuve-Rosemont hospital—where I would most likely get a transplant if I found a donor, and the place where quite a bit of research in bone marrow stem cell transplants takes place—to meet with a doctor to discuss some questions we had. Questions such as, what if I had to resort to a haplocompatible (half-matching) donor? And what if I couldn't get into remission?

We met first with one doctor, who we filled in on details about my experience so far. After a short wait, he reappeared with his colleague, and before he addressed our questions he went over some other details about my case, and almost incidentally mentioned that a potential donor had been found.

"Wait a minute," you're asking. "That far back? Why didn't you say anything?" The key is in that one word: potential. Finding a potential donor means everything has lined up in terms of HLA typing so far, but further tests need to be done to determine complete compatibility and suitability. (Just a brief explanation about compatibility: Only the first six HLA markers are recorded when someone registers to be a donor. The remaining four markers need to be verified as matches as well.)

I used to joke that so far as I'm concerned, all donors are potential until I actually have stem cells being pumped into my body. There's some truth to that, as there are any number of reasons the donor wouldn't have panned out. It could have turned out they didn't match all ten markers. Further testing could have revealed that they had some disease they didn't admit to or didn't know about. Or they simply could have changed their mind about donating. This is why we didn't want people to stop the search—because nothing was guaranteed.

On June 4, we got better news. The person turned out to be a perfect match. Tamu wrote a press release, and within hours we were deluged by congratulatory phone calls and e-mail.

In a perfect world, the next few steps would be easy: I'd get into remission and undergo the transplant. Unfortunately, we don't live in a perfect world, as I've been having trouble getting into remission in the first place. Starting next week, I'll be undergoing a fourth chemotherapy regimen, one that targets the leukemic cells in a different way than the previous three treatments. (A nice side benefit: I can do these treatments as an outpatient, so no lengthy hospital stays just yet.) If I'm lucky, this new method of attack will put me in remission and we'll start the transplant procedure—assuming, of course, the donor doesn't back out.

But what if I'm unlucky? This isn't an idle question, but a distinct possibility. The monosomy 7 that necessitates the transplant makes it harder for me to get and/or stay in remission. So this is where things get interesting. If I'm not in remission, then a transplant becomes a far riskier procedure; the stats I've heard so far put the success rate at 1 in 4, tops. Moreover, the folks at Maisonneuve-Rosemont don't do transplants on patients who aren't in remission, which would mean I'd have to travel out of province for treatment.

Finding a donor is great, but the adventure's not over yet. Not by a long shot.

Labels: Emru

This is Michelle. She is in her 20s, just got married and has been living with leukemia. She needs a bone marrow transplant and requires an unrelated donor. Project Michelle has helped increase her chances and highlighted the shortage of Asian donors in the registry.

So far, Project Michelle has helped register 8000 people at bone marrow drives. Why don't we do these in Canada? Someone remind me, please.

Labels: bone marrow drives, California, minority donors, NMDP, US

Carolyn Tam and other Chinese patients require new Chinese registrants to add their numbers to the worldwide registry. There are not enough Asian and Pacific Islander registrants.

Carolyn lives in Toronto, Canada, and she is the same position as many - no matches in the registry. Yet. It's up to people to decide that they are going to register or at least continue to spread the word about her.

Bone marrow drives are run by neither the OneMatch Registry nor the Hema-Quebec Stem Cell Registry in Canada. A special arrangement has been made with the Elizabeth Lue Bone Marrow Foundation for the Gift of Life registry, based in the US, to run bone marrow drives north of the border for Carolyn, which will benefit all present and future patients.

June 14: Vancouver

Vancouver Chinatown
S.U.C.C.E.S.S.
28 West Pender Street

Richmond
Buddha's Light International Association
#6680- 8181 Cambie Road

Burnaby
CCM Canada
2nd floor 4533 Kingsborough Street
(Crystal Mall)

June 15: Toronto

Downtown Toronto
UNIVERSITY SETTLEMENT HOUSE
10am - 4pm
23 Grange Road

Scarborough
SCARBOROUGH FINCH YEE HONG CENTRE
10am - 4pm
60 Scottfield Drive

Richmond Hill
RICHMOND HILL CHINESE COMMUNITY CHURCH
1pm - 4pm
9670 Bayview Avenue

Mississauga
MISSISSAUGA YEE HONG CENTRE
10am - 4pm
5510 Mavis Road

Personally, I would love to run more entries with the label "bone marrow drives" and "Canada" in the same sentence. Supporting this drive, regardless of background can send a clear message to Canadian registries that bone marrow drives need to be rethought and reinstated.

Labels: bone marrow drives, Canada, Gift of Life, minority donors

There's a bone marrow drive on Saturday in Brooklyn. An African-American congregation is holding a bone marrow drive. The church is an important element in African-American culture, and was the hotbed of the Civil Rights movement, among other great revolutions of thought. The tradition continues.

Powerful Praise Tabernacle
708-710 Myrtle Avenue
Brooklyn, NY 11205
(718) 422-1170

Labels: bone marrow donor clinic, bone marrow drives, minority donors, New York

From hapihour.org:

WHAT: In-n-Out: The Drive to Increase Asian American Registered Bone Marrow Donors

WHEN: Saturday | June 14, 2008 | 10 am - 3 pm

WHERE: Chinese for Affirmative Action, Community Room
The Kuo Building
17 Walter U. Lum Place
San Francisco, CA 94108
COST: Free

To RSVP and to show your support, please visit our Facebook Event and/or our Evite.

Labels: bone marrow donor clinic, bone marrow drives, California, minority donors, US

From the Ledger:

In order for Liam to be cured, he needs a bone marrow transplant.

To find a match for him, Mulberry United Methodist Church will be having a blood drive/bone marrow screening from 9 a.m. to 6 p.m. on Saturday.

Labels: bone marrow donor clinic, bone marrow drives, Florida, US

From the Connecticut Post:

To aid Lemos — and others in need of a transplant — the Vasco da Gama Portuguese Cultural & Civic Center, 355 James St., Bridgeport will host a bone marrow donor registration from 10 a.m. to 2 p.m. Sunday.

Labels: bone marrow donor clinic, bone marrow drives, Connecticut, US

Two more Project Michelle marrow drives, courtesy of Peachies.net:

ABC Supermarket
Sat, May 31, 10am – 4pm
6970 Bolsa Ave., Westminster, CA 92683

Cerritos Farmer’s Market, Cerritos Town Center
Sat, May 31, 8am – 12pm
Park Plaza Drive, Cerritos, CA 90703

Labels: bone marrow donor clinic, bone marrow drives, California, US