I haven't tweaked the menu or the sidebar yet, but I wanted to let people know that we're still listing upcoming bone marrow drives and other events (charity races, art exhibitions, fundraisers, etc.). For the sake of clarity and ease of use I've moved everything to a Google calendar, which you'll find on our Events page.

Our list of events currently includes things going on in the US, UK and New Zealand up until September 21, with new items from around the world entered every day as we find out about them. Check in regularly and often.

Labels: bone marrow donor clinic, bone marrow drives

Before I can fully explain Tuesday night at the hospital, I have to tell you a few things.

First, something that a few people reading this know: I have long had the ability to sleep—easily and completely—anywhere. And I mean anywhere. In the past I've slept across three rickety chairs barely suitable for sitting, in a rickety bus travelling on a road that even pothole-hardened Montrealers would find daunting, and on an abandoned tennis court in the Adirondacks. (Last year I even fell asleep standing up, but I think those circumstances were a little extreme.) Honestly, the only person who can match me in this area is my mother. It's a great asset for travelling.

Second, as others reading this can attest, I can sleep through anything. Once I'm asleep, I'm asleep, and no amount of sirens, shouting, or room-shaking loud music can wake me. This is why that whole incident back in February with the disoriented hospital roomie who was shouting at the top of his lungs for help didn't affect me at all.

Third, sleep itself is more difficult these days. Between my chest catheter (it's no fun rolling onto the clamps' pointier ends) and my injured shoulder, it's hard to find a comfortable position to sleep in—never mind the need to keep my fat left foot elevated, on top of that. Add to that my night sweats, which are getting worse along with my body's decreasing ability to manage its temperature, and, well, you get the picture.

All of these things came to a head on Tuesday night. When we talking about that night, the first thing my mother mentions is the poor disoriented woman who was screaming for two hours. That was the least of my concerns, as I was able to sleep through a fair bit of it. The problem was getting comfortable enough to get to sleep and stay asleep. Not only was I sleeping on a narrow gurney, it was cold in emergency (at least to me), which made it hard to balance my need for cover with my need for ventilation to keep the sweats at bay. Being attached to an IV pump and the newly minted upper back pain made it worse. When I could get to sleep, I couldn't stay asleep. When I came back from the bathroom in the middle of the night at one point, I thought, "That damn gurney might actually have beaten me." Late I woke up gasping after a particularly bad attack of the night sweats, changed my clothes, and came to the realization that i was actually afraid to try to go back to sleep.

I eventually did, and despite one minor sweat incident, managed to sleep in two two-hour chunks. But although I felt better in the morning (good enough to navigate the hallways and elevators and pay my hematologist a visit), I didn't really have a good night's sleep and tried to avoid lying in the gurney. When I got ready for bed at home later that night, I actually said, "Thank God, a bed"—something I have never uttered in my entire life.

It would be nice if this story had a happy ending. It kind of does, as I was released with five days' worth of look-at-the-size-of-those-things antibiotic tablets, and the pain in my back went away. But sleep is still increasingly problematic. It has nothing to do with the hospital stay, but it's a nightly reminder. And that's just no fun.

Labels: Emru

Monday night in emergency is something of a blur for me, because I didn't get a good night's sleep at all. It was very cool in the room, so I was fidgeting as I alternated between being too hot and too cold. Also, I was constantly being visited: I had a blood culture taken when my fever spiked at 39 degrees, I was visited by my hematologist before she left work as well as my old CEGEP buddy when his shift ended (at midnight!), nurses came in to get my vitals every few hours as well as an early-morning blood test, a nurse with an awesome tattoo (as far as I could see—I was too tired to ask him about them) came in to do an EKG, and one of the doctors I knew from my last stay, who happened to be doing her rotation in emergency, stopped by. Factor in the late arrival of my desmopressin, which had me making a few extra visits to the bathroom, and you can see why everything was a little messed up.

I did get an hour or two of sleep in at the end, and when my eyes opened I realized I didn't feel quite as out of it as I had on Monday. Then I sat up quickly and felt a sharp pain in my upper back that sent me right back down. It seemed I had slept in a funny position, and the sudden shift didn't help. Ow.

Gingerly, I got myself into a sitting position and found that I was actually able to sit up and read a magazine, something I was totally incapable of the previous day.

Vicky came by to relieve my mom of her shift, and brought me some fresh clothes. We waited to find out what was happening with me, and discovered that they were waiting to admit me, if only they could find a free bed upstairs. Eventually, once it was determined that I wasn't neutropenic, I was moved to a different unit within emergency (the green unit) which was smaller and far quieter overall, but didn't have any separate rooms—so I got to hear the conversations and occasional plaintive cries during those few times I was awake. Eventually my mother came back to relieve Vicky and, after a few puzzles and a short walk, I settled in for the night's sleep.

Labels: Emru

So here we are, on Wednesday afternoon. A few hours ago, I finally got home from what I had hoped would be a short hospital visit.

What happened? Well, I arrived at the hospital Monday morning feeling weak, after having spent all of Sunday in bed, pretty much too weak to move and occasionally drifting into a mild fever. Vicky had spoken to the oncologist on call (who happened to be my hematologist) and she said if I didn't improve, to come in the following day.

So I did. My nose was stuffed, my throat was sore, my head ached, my chest hurt and although I could walk or talk neither was something I wanted to do for too long. Vicky, my parents and I got to the hospital and I headed straight upstairs for a vitals check and blood test, with a note that I should get a blood culture if I had a fever.

I should mention here that blood cultures are standard for fevers; if you saw that picture of me in the Gazette in March, I was having one done at the time. Blood cultures are blood tests used to check what, if any, bugs have gotten into your system. Just in case the fever is brought on by an infection in the chest catheter, there are three groups of blood draws. One from the each line of the catheter, and one from the arm. I hate blood cultures for two reasons: (a) it takes days to get the results, so you're on pins and needles wondering what you've got, and (b) I hate getting stuck in the arm.

So anyway, I didn't have a fever, but I muttered that I knew I was gonna get stuck sooner or later. After seeing my hematologist (who noted that some of my sinusoidal area was ever so slightly tender), I was directed to get a chest X-ray and a sinus X-ray. Vicky and I went downstairs, registered, and sat in the waiting room.

And then suddenly, everything went weird. My balance went a little off, and it looked like I was seeing the world through a mass of light purple blobs. It slowly started to get worse, and I mumbled something as I slowly started to list to starboard. Vicky asked if I was okay and I mumbled something else and then she asked if I needed a stretcher. I sat up, and realized I couldn't stay vertical for very long. I said yes, propped my head in my hands, and waited.

A gurney was brought in short order, and I managed to walk the three or four steps needed before sitting and then quickly lying down.

What I didn't realize then was that I'd be in a gurney for most of the next 48 hours.

It came to my turn for the chest X-rays, so I was wheeled in and felt good enough to stand for them. I lay back down in the gurney and was wheeled over to the room for sinus X-rays. While waiting for the technician, Vicky and I sat on the gurney and joked about the fact that the door marked "Always Leave This Door Closed" was usually opened, with the room used as a shortcut between two parallel hallways. I felt okay (well, no worse than a few hours earlier) when I sat down for the first X-ray, but in the few seconds before the next everything went wonky again and I had a quick lie-down while I caught my breath. After the second X-ray, I got back in the gurney and pretty much stayed there until I was wheeled back upstairs and climbed into another gurney and waited for my doctor to show up and look at the films.

When we had left the house that morning, my mother had mentioned that I might consider the possibility that I'd have to be admitted. I did, but I didn't really want to think about it. I figured I either had a cold or my white blood count had finally become elevated enough to be problematic. It turned out neither was the case. The X-ray technician's conclusion was mild pneumonia, and the very first thing that went through my mind was that it was pneumonia that had killed my grandfather exactly fourteen months earlier.

The hope was that I would be admitted to my old ward, but they were full to the brim so I was sent to emergency until space could be found, preferably in isolation since the blood results hadn't come in yet and there was suspicion I might be neutropenic. I ended up in the red unit (emergency has three units: red, green and blue), in room 12: as it turns out, a psychiatric room. Psychiatric as in the bed already in the room had straps on it.

By now it was approaching 5:00, and my mother elected to stay overnight with me. It turned out that my E.R. doctor was none other than an old classmate from my CEGEP days (he clearly stayed in sciences, unlike me). I ate dinner when it arrived, ran through another blood test and some more Q&As, tried unsuccessfully to read a bit of my magazine (I was too weak to hold it up and the room was too cold for my hands to remain exposed anyway), and called it a night.

Labels: Emru

Was going to take a moment out to write yesterday about my two blood transfusions on Friday (#27 and #28, for a total of for transfusions overall), and how I coped with the boredom by watching four episodes of Avatar: The Last Airbender and catching up on my Coverville music podcasts. (Best cover of the lot: Jimi Hendrix's All Along the Watchtower. Most, um, odd: Paul Anka's Eye of the Tiger.) It was surprising that I needed the tranfusions at all, as I felt quite energetic. But numbers don't lie, and my hemogloblins were low.

Anyway, the reason I didn't write about this yesterday is that I spent all day in bed. I woke up with a sore throat, a stuffy nose, a mild fever, and the sensation of my brain loosely floating in my skull and occasionally banging against the sides. So now we're off to the hospital, and I get to miss the last two films I wanted to see at the Fantasia film festival. I'm not sure which irks me more.

Labels: Emru, transfusions

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, transfusions

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 Gridley 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