April8th
Social media fuels desperate search for life-saving stem cell donors – Globe and Mail, April 4, 2012
media fuels desperate search for life-saving stem cell donors
Through creative uses of social media, the number of
Canadians who have signed up with the stem-cell and bone-marrow registry
OneMatch
By ANDRÉ PICARD,
Public Health Reporter
David Geneen suffers
from a rare blood disorder that, without treatment, will result in deadly
leukemia.
So he decided to
throw a party. "It was a festive and warm affair, a great success," said Mr.
Geneen, a retired luxury-car dealer.
But it was no
ordinary party.
friends and strangers recently showed up at Holy Blossom Temple in downtown
Toronto on a Sunday afternoon, and almost everyone aged 17 to 50 – a total of
428 people – underwent a CSI-like swab.
That's because Mr.
Geneen, 64, has exhausted drug treatments and now needs a transplant of stem
cells – which are be harvested from blood or bone marrow, and have to be a
perfect match. The partygoers who underwent a cheek swab were, in fact, joining
OneMatch, a registry for unrelated stem-cell and bone-marrow
donors.
There are now almost
320,000 Canadians who have signed up with OneMatch. The number has exploded in
recent years, thanks to community-based activities and the ability to order swab
kits online, both driven by creative use of social media. While the stem-cell
and marrow registry has been around since 1988, it was rebranded OneMatch in
2007 and only started actively soliciting donations in the last couple of years,
after pressure from families.
The Facebook page
David Geneen Bone Marrow Drive, caught the eye of Daniel Zuckerman so the
17-year-old offered up his band to provide entertainment at the party. Then, he
and the other members of Truthful Lies got swabbed, a quick and painless swipe
with a Q-Tip along the inside of the cheek.
"I never heard about
this kind of donation before but it's a cool concept," he said. His data will
now go into a OneMatch registry and be part of a network of databanks that
include 18 million people in 44 countries
Massive numbers like
that are required because stem-cell matches are determined according to DNA
markers on white blood cells called human leucocyte antigens. There are 10 HLAs
and, ideally, all 10 should match for the donor and recipient to minimize the
risk of a transplant being rejected.
"It's like trying to
find someone with the same fingerprint as you," said John Bromley, national
public-affairs manager at OneMatch. "It's the proverbial search for a needle in
a haystack."
At any given time,
about 900 Canadians are awaiting a stem-cell transplant. Only about one-third of
them will manage to find a match.
One child who defied
the odds is 22-month-old Reese Hawkins, who suffers from a form of leukemia. The
family of the Pictou, N.S., girl learned just last month that OneMatch had
located a donor. In fact, they found three potential donors – two live donors
abroad, and one donor to a cord blood bank.
Reese is now at the
Hospital for Sick Children in Toronto, where chemotherapy began yesterday, and a
stem-cell transplant is scheduled for April 12. She then must remain as an
outpatient for 100 days – likely in Halifax – to deal with complications and
ensure the stem cells are engrafted.
Kora Hanrahan,
Reese's mother, said they are overwhelmed but overjoyed at the prospect of a
life-saving transplant.
"All I know is that
a mom made a decision to donate her baby girl's umbilical cord and that's going
to save my girl's life," Ms. Hanrahan said.
"Reese's donor will
never ever get to know what they've done for us but we owe that person
If the odds weren't
astronomical enough already, matches rarely occur outside racial groups because
each ethnicity has inherited haplotypes, a combination of DNA and location on
chromosomes. In the United States, the odds are 1 in 20,000 to 1 in 100,000 for
a match from a stranger and significantly higher for ethnic minorities.
Practically, in a multicultural country like Canada, that means the need to
build a stem-cell bank collected from members of numerous ethnic
"Our main thrust is
diversity," Mr. Bromley said, noting that currently, 76 per cent of the
registrants in the database are Caucasian.
But other
initiatives like South Asians for Life and the Other Half Chinese Stem Cell
Initiative have sprung up and recruited potential donors on a large
scale.
The latter conducted
drives last Saturday in Vancouver, Calgary, Toronto and Montreal and netted
4,616 new potential donors. Susan Go, co-founder of the Other Half, noted that
of the 966 Canadians waiting for stem-cell transplants, 32 are of Chinese
When someone needs
stem cells, their first best hope for a match is immediate family members.
Still, fewer than 25 per cent find a match.
Candace Weimer, 38,
of Green Lake, B.C., was a lucky one – if you dare describe her ordeal as lucky.
In the spring of 2005, the super-fit personal trainer was feeling increasingly
rundown and frustrated by the changes in her body. "I looked like a chicken
hawk: I had skinny legs and a big abdomen," she said with a
Tests revealed that
she had myelofibrosis, a disorder where the body slowly destroys its bone
marrow.
Her brother was a
match so he became the donor. The process was easy: He underwent apheresis, a
process that is similar to giving blood, except that blood is drawn, the
stem-cell-rich platelets are extracted and the red and white cells are returned
to the body. "It wasn't a big deal. He sat in a chair for two hours, they drew
some blood and he saved my life," Ms. Weimer said.
Receiving a
stem-cell transplant, however, is a much more taxing ordeal. First, it is
necessary to shut down the body's immune system so the body will not reject the
foreign substance, stem cells. That is done with chemotherapy, which Ms. Weimer
described thus: "They chemo you to the brink of death." Then the patient's
immune system is suppressed with drugs for 100 days until the stem cells take
and the immune system is rebuilt, cancer-free.
Like most stem-cell
recipients, she experienced a host of complications. Infection twice brought her
to the brink of death. Bacteria lurking in her knee caused a blood infection
that was almost fatal; another infection brought her to the brink of death a
second time. The medications she required, such as steroids, also destroyed the
bone in her hip (necessitating a hip replacement), and has caused permanent
damage to an eye.
"Was it all worth
it? Oh God, yes," Ms. Weimer said. "That was the best-case scenario. Without the
transplant, I was dead."
To donate stem
cells, visit www.blood.ca or phone 1-888-2-DONATE
umbilical cord blood bank in Canada's future
Ottawa and the
provinces have just decided to invest $48-million over eight years to create a
cord blood banking system, one that should be up and running within a year.
is one of the few G20 countries without a public umbilical cord blood bank.
provinces have decided to invest $48-million over eight years to create a cord
blood banking system, one that should be up and running within a
The umbilical cord,
which connects a baby in the womb to its mother, contains blood that is a rich
source of stem cells. The cord is usually discarded along with the
placenta.
In the coming years,
however, there will be an effort to systematically collect umbilical-cord blood,
particularly from babies who are aboriginal or of mixed race – groups for whom
it is nearly impossible to find stem-cell matches.
"Canada has unique
mixed-race ethnicities and aboriginal populations. That's why we're going to be
targeting those folks in particular," said Sue Smith, executive director of
OneMatch Stem Cell and Marrow Network at Canadian Blood Services, which will be
managing the cord blood bank.
The program will
begin in Ottawa in the spring of 2013, then expand to Vancouver, Edmonton and
Toronto in 2014. (Quebec already has its own cord bank.) Collection kits will
also be distributed to hospitals and birthing centres where there are high
number of aboriginal births.
Cord blood can be
collected in-utero, just after the baby is born but before the placenta is
delivered, or ex-utero, extracted before the umbilical cord and placenta are
discarded. The blood will then be sent to a laboratory in Ottawa or Edmonton
where stem cells will be extracted, tested and cryopreserved in a special
Canada's cord blood
bank will be linked in a database to 44 others around the world, where there are
already more than half a million samples.
Currently, there are
a handful of private cord blood banks that allow parents to store their child's
cord blood for personal use, should the need ever arise. This service costs
upwards of $1,000.
There are no fees
for the public cord bank and the stem cells will be freely available to any
patients who are a match, domestically or
internationally.
March31st
Cancer journey inspires book's author – Cariboo Advisor, Williams Lake, BC, March 28, 2012
Link here (Page 5) of the Cariboo Advisor –>
http://www.facebook.com/l.php?u=http%3A%2F%2Fissuu.com%2Fcariboo_advisor%2Fdocs%2Fcadn120328_a%3Fmode%3Dwindow%26viewMode%3DdoublePage&h=8AQHG0vhDAQFkP4sctWwQdPXS1dJ47S3r_dpR1y_O_CKWRQ
March28th
Healing with Hearts and Hands session – Rosetown, Saskatchewan
Candace will be facilitating a Healing with Hearts and Hands session in partnership with the Dare To Care cancer support group in the Rosetown, SK area on May 29, 2012 from 11 am to 2:30 pm.
If you know a cancer patient or caregiver in Rosetown or one of the surrounding communities who might benefit from a two hour session with others who are feeling isolated as a result of their diagnosis or treatment of cancer, please have them register with Armella Rollheiser for the free session: Ph: 882-2278 or e-mail: a.l.rollheiser@sasktel.net.
For more information on the session, please contact Candace at cweimer@sasktel.net.
February23rd
Cancer Bridges Website – connecting patients and caregivers to resources.
Posted in: Cancer Websites
Cancer Bridges (cancerbridges.ca) connects Alberta cancer survivors with the resources they need to make the rest of their life the best of their life.
The Cancer Bridges website is meant for Albertan cancer patients and their caregivers, but has great information for cancer patients outside of the province as well. This new website offers a connection to a network of people who are also going through unbelievable times, cancer research, survivorship resources, and myth busters to surviving cancer.
Cancer Bridges Website —–> http://www.cancerbridges.ca/
February16th
The Storybook Ball – Ronald McDonald House – Northern Alberta, Canada
Posted in: Events, The Author
Candace was one of four Canadian authors that were chosen to write a children's book for the Northern Alberta Ronald McDonald House located in Edmonton, Alberta to help children and their families cope with unexpected family illness.
The children's book will be launched at The Storybook Ball on Sunday, March 4, 2012, in Edmonton. For tickets to the event, or to purchase a book, please contact Jen at: 780-439-5437.
For more information on The Story Book Ball, link here – > http://www.rmhnorthernalberta.org/users/folder.asp?FolderID=7448
The Ronald McDonald House® Northern Alberta provides a home away from home and
support for sick children and their families. Since opening in 1985, the purpose
of the House has remained the same: keeping families together while the child is
being treated for illness in a compassionate and comfortable, home-like
Kyla McMullin – a true cancer survivor.
My name is Kyla McMullin.
I felt compelled to write to you
after finishing your book last night.
Like you, the world dropped in on me
this year. I gave birth to my first baby, the most beautiful baby girl you
could imagine, on February 21st of this year. 3 days later, I was diagnosed
with Hodgkins Lymphoma. With a few ups and downs, 1 cesarean, 3 surgeries, a
melanoma scare, serious infection (including 1 week in isolation away from my
newborn), I have been successfully done treatment as of Sept 19th, and I am
completely inspired to live a new life.
Like you, I documented my
journey in the form of a journal/blog, and im in the process of hopefully having
it published, for the same reasons you published your book. To give back, and
to give HOPE. I did not start reading your book, until my journey was complete
(so far so good). I am so glad I waited, because I read your story with such
honor for how you handled your situation, and I feel that although our journeys
were very different, we handled each situation in a positive light. And within
your inspiring words, I could still hear the silent fear and ache in your
deepest thoughts (or perhaps I was just feeling this for myselft). Regardless,
your book was very valuable to me, and I want you to know that you are paying it
forward, so thank you.
I specifically enjoyed your section about using
humour (not everyone can understand this). I specifically remember standing in
line at Costco on a Saturday, as patiently as any person can be at Costco. I
was rocking a pink scarf on my head, and amongst the stares, I kept thinking to
myself "can't these people tell that my days are numbered!!" A bad joke indeed,
but humour brought much light to my situation. I find it easiest to laugh at
things that hurt the most…it truly helps.
Candace, I really wanted to
email you just to say thank you. As I am beginning what I feel to be the most
difficult part of the cancer journey so far, treatment is done, and I am
sporting the new hair of a twelve year old boy…I am so thankful for all of the
blessings I have recieved in the last year, but I am trying to piece life back
together, in a different way it seems. The hard part, having changed so much
and perhaps not feeling the same change from those closest to me (not sure if
you went through this). I know I am only able to control my life, but I
struggle to re-enter an unchanged world after having all of what is truly
important exposed to me on the deepest levels (and I am still suprised at just
how simple it is).
So again, that is why I just wanted to tell you
And hopefully one day you can read my book
(I believe it is meant to be), and you will allow me the honour to pay it
forward as well.
Kyla McMullin
February3rd
Surviving with a brain tumour. Amazing story from Christina in Nova Scotia, Canada.
Hello Candace,
I am a daughter of your friends.
They gave me your book for Christmas. It was inspirational and insightful,
thank you for sharing. I am always intrigued about people's cancer journeys as
every single one is so different. As tough and sometimes horrible a cancer
journey is, I think a lot of people get to find out and realize how strong they
really are.
I have been doing well. My brain tumour is still stable and
low-grade [diagnosed in 2006 with an inoperable brain stem tumour], it's just a
silent passenger I have to live with. My husband and are [now] living in Nova
Scotia. Life is good. I recently got hired for one of my dream jobs, since the
tumour prevents me from being a firefighter.
But I just wanted to say hi,
Cheers, Christina
Brain Tumour Foundation of Canada: —-> http://www.braintumour.ca/
January13th
"I found so many things about your story compelling….
I loved your honesty. I loved how your heart shone through as you were describing so many things. I can't believe the time
and quality of your responses to so many of your friends and how totally unselfish you were throughout the journey. I don't
know what kept you going some days, and believe that your positive attitude and
willingness to always look forward contributed to your success.
You are truly an inspiration. I am so glad that you wrote this book. You talked about all the things that as a caregiver people are afraid to ask. I lost my Dad to pancreatic cancer in 1997, and his stoicism will always be remembered." Laurie Murray, Brandon, Manitoba, CANADA
December13th
A Tale in the Telling, by Katherine Fawcett – Page 23, Leap Magazine,Winter 2011 (Alberta Cancer Foundation)
A Tale in the Telling (page 23, Leap magazine) highlights Candace's cancer journey as part of way cancer patients deal with their experiences, great and small.
Leap Magazine, Winter 2011 link – > http://myleapmagazine.ca/2011/12/winter-2011/
Alberta Cancer Foundation link -> http://albertacancer.ca/Page.aspx?pid=641
The Alberta Cancer Foundation is more than a charity—
it's a movement for cancer-free lives,today, tomorrow and forever.
It's a movement of those who know a cancer-freefuture is possible and who won't settle for "some day."
It's a movementof Albertans who stand with those who have no choice but to stand up to cancer.
It's a movement of those who know somethingcan be done and are willing to do it.
For those facing cancer today, in honour of those lost to cancer, and for generations to come,we promise progress.
December8th
Royal Inland Hospital, Kamloops, B.C. – Book Signing
The book signing at Royal Inland Hospital in Kamloops on Thursday, December 15 had many amazing people drop in to share their stories about cancer. Thank you to everyone who made the time to say "hi".
Royal Inland Hospital link:
http://www.interiorhealth.ca/health-services.aspx?id=284