Support my cousin JoMing in his Ride to Conquer Cancer

Please support my cousin JoMing in his Ride to Conquer Cancer this June.
Act Now.

Chinese-Canadians respond to stem-cell call

BY PAMELA FAYERMAN, VANCOUVER SUNMARCH 30, 2010
The number of Chinese-Canadians registered as potential stem cell donors has risen 75 per cent after simultaneous one-day events in Vancouver and Toronto this past weekend.

“We made history. It was the largest one-day stem cell drive event we’ve ever had,” said Sue Smith, executive director of the Canadian Blood Services’ OneMatch Stem Cell and Marrow Network.

The drive, held Saturday at Richmond’s Aberdeen Centre, and in Toronto, saw a total of 4,025 people lined up to get the inside of their cheeks swabbed so cells containing DNA could be collected, typed and entered into a national registry.

Stem cell transplants are used to treat — and even cure — those suffering from blood cancers and other disorders involving benign or malignant conditions.

Chinese-Canadians make up only two per cent of the Canadian registry of unrelated stem cell donors while Caucasians make up 82 per cent. That means that it could be almost impossible to find a donor when a Chinese patient needs one since the best chance of finding a match is within a patient’s own ethnic group. First nations, South Asian and Southeast Asians are also poorly represented in the national and international registries.

Smith credited media coverage and volunteers in community groups for the success of the one-day campaign, which boosted the registry of Chinese donors by 75 per cent. In Vancouver, 1,900 individuals were registered during the event and in Toronto, 2,100 people were added. Said Madellina Lau, co-chair of the Vancouver event and mother of a woman who died last year from leukemia (before a stem cell transplant): “It is so heartwarming to see how much our fellow Chinese-Canadians care for Chinese patients searching for stem cell donors.”

Smith said the Vancouver turnout far exceeded expectations. And now the blood service hopes other ethnic community groups will match the success of Chinese organizations. “We’re working on partnerships with other community groups like South Asians for Life, the Health Association of African Canadians, Aboriginal Nurses of Canada, Filipino and many other ethnocultures,” she said.

Dr. Clay Smith, director of the Leukemia/ Bone Marrow Transplant program of British Columbia and chair of the Tumour Group Council of the BC Cancer Agency, said all the efforts are critically important to patients.

“Frankly, there is a need for representation for all ethnic groups other than those who are descended from European background where donor representation is now pretty good.” There are more than 14 million registered adult volunteer donors in [about] 69 donor registries around the world.

pfayerman@vancouversun.com

© Copyright (c) The Vancouver Sun

Stem cell match saved life: Man

Stem cell match saved life: Man.  Vancouver native pushing campaign for Chinese donors
– metronews.ca

Fairchild TV interview of Mama

Watch Mama tell you why it is very urgent for us all to become a registered stem cell donor. (Cantonese)

3/27 STEM CELL DRIVE

Its getting close.

REGISTER NOW.  SPREAD THE WORD!

Event leaflet is downloadable here – 327 Flyer.

Thank you in advance.

Sincerely,

Patrick

Mama’s Interview on Omni News to promote upcoming 3/27 Stem Cell Drive

零六年十二月一次例行身體檢查, 變成了華裔女子譚家宜惡夢的開始-醫生證實她患上血癌. 羅穎心報道. (2010-03-04)

http://www.omnibc.ca/news/webstories.php?language=5&id=2336

I am so so proud of my Mama.  Truly an inspiration to us all.

Patrick (Son of Madellina, Brother of Carolyn)

Jenny from UK needs your help

Jenny has recently been diagnosed with Leukemia, and she needs a bone marrow transplant to survive.

Below is her appeal letter sent out by herself via email.

Please help SPREAD THE WORD, and REGISTER NOW.

Sincerely,

Patrick

———-

” My name is Jenny Wilkinson and I am a member of Wirral Council’s Accountancy Finance Team.  I have been diagnosed with Leukaemia and the treatment to help save my life is a Bone Marrow Transplant.

Due to my Chinese background, I was shocked to find out the odds of finding a suitable donor worldwide is 1 in 100,000.

If you are interested or you may know of anyone who maybe interested in being a donor; have parents who are both Chinese in origin and is age 18-40 or 18-49 if you are a blood donor, please call the Anthony Nolan Trust on 0303 303 0303, or visit www.anthonynolan.org.uk. Donating is a simple procedure and does not require surgery.

There will also be a Bone Marrow Awareness Event on Saturday 6 February 2010 at West Kirby Concourse from 9.30am-4pm. A mouth swab will replace the simple blood test for assessment.

Please could you forward this email to anyone you know that would be interested in helping.

Thank you for all your help.

Jenny”

兩歲小芊柔危在旦夕

【專案組張美琪報道】兩歲女童梁芊柔,患上罕見的急性「再生障礙性貧血」,骨髓無法製造血小板、白血球和紅血球,要靠藥物治療續命,若情況未有好轉便須進行骨髓移植。芊柔病情反覆,父母透過網誌發出愛的呼喚,冀盼無私者捐出合適骨髓,燃點起女兒生命。(more)

Merry X’mas & Healthy New Year from Mama

Support my friend Helen Lam run with the Leukemia Society

Thank you so much for helping my friend Helen Lam with her fundraiser to Leukemia and Lymphoma.

Please visit her fundraiser website:
http://my.e2rm.com/personalPage.aspx?registrationID=671781

Facebook page:
http://www.facebook.com/event.php?eid=154675097467#/group.php?gid=94118891034

She is really proud to be part of the Nike Woman Marathon and to have a chance to make a difference.

She is also hosting a coming event on Sept 5th, its a club night at Aubar, so if you know anyone that is interested, please let her know!

Helen Lam
+1.778 889 6084
helenlam33@gmail.com

Thanks.
Patrick

Thank You From The Family

00_image003

http://www.facebook.com/album.php?aid=78530&id=773524929&l=f38da159da

追思會促圓譚家宜心願. 籲更多華人登記捐幹細胞

追思會促圓譚家宜心願.籲更多華人登記捐幹細胞

本報記者

 

    血癌病患譚家宜在與病魔搏鬥兩年半後,於上周四在北溫獅門醫院(Lions Gate Hospital)過世,得年38歲。曾為譚家宜及家人提供多方幫助的萬錦市天主教中華殉道聖人堂於昨晚舉辦追思彌撒,讚揚她短暫而充實的一生,並呼籲社會特別是華人社區幫助完成譚家宜的心願,登記成為志願幹細胞及骨髓捐贈者,拯救其他病患的生命。

    出席追思會的譚家宜叔父譚啟綱表示,譚母劉慕平及哥哥Patrick目前在溫哥華打理定於下周四(五月七日)舉行的譚家宜葬禮。他們一方面為失去家宜而傷心難過,另一方面亦為家宜終於可以擺脫病痛折磨,返回天國感到釋懷。他們知道在多倫多有很多關心他們一家的朋友,在家宜生前及去世後向他們表達問候,他們對此表達謝意。

    譚啟綱表示,家宜的一生雖然短暫,但充滿勇氣和力量,特別是以自己的努力喚起社會對骨髓捐贈的認識和支持。她的人生是有意義的,她取得了我們活著的人尚無法企及的成就。作為她的親人感到無比驕傲。他表示,家宜的家人除感謝各界長期來的協助,也希望華裔人士繼續參與捐贈幹細胞及骨髓登記,而這也是譚家宜的遺願。

譚家宜葬禮下周四溫市舉行

    譚家宜於2006年12月作例行的身體檢查時,意外發現患上急性骨髓性白血病(Acute Myeloid Leukemia) ,並於同年接受化療,之後她的白血病又在去年4月復發。

    因為全球只有30萬華人登記成為捐贈者,僅有5%的機會找到合適的幹細胞。多倫多小麗莎骨髓基金會及王裕佳醫生等發起全球華裔幹細胞登記行動,得到加拿大華人團體的熱烈響應。總計在多倫多及溫哥華的活動中,共收集到超過2,300個樣本,隨後活動又移至香港和美國進行,反應也十分熱烈。此後還曾透過接觸英文媒體,並設立互聯網設網站http://www.SaveCarolyn.com,呼籲捐贈者登記捐骨髓。雖然譚家宜最終有找到合適的骨髓樣本,但由於她已接受第三輪化療,身體非常虛弱,未能進行移植手術。為就近療養,譚家宜在今年一月自多倫多搬至卑詩北溫居住。她最後不敵病魔,於上周四下午平靜離世。

    出席追思彌撒的王裕佳醫生表示,他日前剛剛與在溫哥華的家宜母親通過電話,在四周前家宜由多倫多搬住卑詩之前,他還有同她一起吃飯,此後還通過電郵聯絡。王裕佳醫表示,在為家宜尋找配合的骨髓配型期間,有三千多位華裔人士登記成為志願骨髓及幹細胞捐贈者,有數位與家宜情況類似的病患因此找到合適的骨髓。家宜雖然離世,但她間接挽救了其他病患者的生命。王裕佳表示,加拿大目前正在籌建臍帶血庫,未來它將成為更有效的挽救生命的方式。而華人社區不日亦將展開捐贈臍帶血的推廣教育活動。

譚家宜的遺願

ct-and-sa-at-wedding-copy身為母親的已經竭盡全力,身為女兒的已經全力以赴,身為朋友的已共度一段難忘的歲   月。大家的心都在震動,感歎生命的脆弱無常。雖然家宜在紅塵裡的出現與離開是如斯的短暫,她的精神,勇氣,鬥志卻永遠紮根於我們腦海之中!我們實應以她為榮。

若我們節哀,她的靈體思維便會變得穩定。若我們看破生死,她便可突破陰陽。若我們放下悲傷,她便可超脫痛苦,飛越天界,不再輪回受苦。請不要為家宜的離去而傷感。請助我實踐她的遺願,保持幹細胞捐贈的推廣,拯救無耐的華裔血癌病患者。家宜臨終訴說,血癌並非絕對的絕症,乾細胞並非絕對的難求,但時間是絕對的殺手。

馬利蘭州移植告吹後,家宜不甘在多倫多坐以待斃。她言行一致,三日內移居溫哥華。先喜柳暗花明,在溫找到佩對作移植。後悲化療後,心臟過弱,力不從心,移植再道告吹,終踏上人生最後的旅程。

雖然家宜往生極樂,但過去一年自願者對推廣幹細胞捐贈所付出的勞力並無白費。加國血庫豋記網站的官方語言,歷年只有英語法語。現已加入漢語。加國血庫測試綿花捧歷來有限額管制,故去年我們雖付現金向美國購買及求助。現在加國血庫無限量免費供給綿花捧以支持推廣活動。

請再一次鼓勵你身邊的家人親戚朋友,付諸行動,豋記為幹細胞捐贈者,救救仍在死亡邊緣爭扎的華裔血癌病患者,給他們一生存希望,讓他們能與家人繼續一起生活。

譚家宜母親
2009/4/29

MEMORIAL SERVICE detail

Order of Service

Visitation

May 6, 2009 (Wednesday) 5:00pm to 8:00pm
Richmond Funeral Home
8420 Cambie Road, Richmond, BC, Canada V6X 1K1
Tel: +1 (604) 273-3748

Memorial Service

May 7, 2009 (Thursday) 10:00am
Richmond Funeral Home
8420 Cambie Road, Richmond, BC, Canada V6X 1K1
Tel: +1 (604) 273-3748

Crematorium

May 7, 2009 (Thursday) 11:45am
Vancouver Memorial Crematorium
5505 Fraser Street, Vancouver, BC, Canada V5W 2Z3
Tel: +1 (604) 325-8251

Lunch Reception

May 7, 2009 (Thursday) 1:00pm
Kirin Restaurant
200 Three West Centre, 7900 Westminster Highway, Richmond, BC, Canada V6X 1A5
Tel: +1 (604) 303-8833

*It is Carolyn’s wish to minimize black clothing at the service.  White is preferred.

 

Donating to the Leukemia Cause

Canada

The Leukemia & Lymphoma Society of Canada
This is the charity that Carolyn did her marathon for back in 2007.  She raised C$15,000 for them.
Please click here to donate online, and remember to specify “In the Memory of Carolyn Tam”.
Or you can send a check payable to “The Leukemia & Lymphoma Society of Canada” to 310-1682 West 7th Avenue, Vancouver, BC, Canada V6J 4S6, with return address, and remember to write “In Memory of Carolyn Tam” on the back. A receipt will be sent to you in return.

Hong Kong

The Hong Kong Bone Marrow Donor Registry
Please send your donation check made payable to “Hong Kong Red Cross” with marking of “In the memory of Carolyn Tam (#555599)” at the back of the check, to “Hong Kong Red Cross Headquarters, 33 Harcourt Road, Hong Kong”. If donation receipt is needed, please also mark your mailing address at the back of the check.

 

Sending Carolyn Flowers

Fannie’s Florist Limited
Pre-arrangement with this florist in Vancouver has been made so that you can place your order by phone or email and have the flowers delivered to the funeral home.
It can be reached at +1.888.303.3927 or by email at info@fannieflorist.ca.

Please provide the following information:
a) This order is for Carolyn Tam
b) Budget (C$100 and up)
c) Credit card info

Carolyn is now in peace.

ct-and-sa-at-wedding-copy

1970 – 2009

At 3pm on April 23, 2009, Carolyn was set free from the suffering of this world, with her Mother & brother, Uncle & Aunt by her side.

The past two and a half year has been such a physical and emotional roller coaster for Carolyn, her family, her friends,  and everyone who became part of her life during this time.

Miracles happened when there were seemingly no hopes.  Dreams were dashed when they were the only chance you’ve got.  Friends were made.  Lives were saved.

Its over now.  And Carolyn is now at a better place.

Funeral will take place in Vancouver, Canada on May 7th.  If you would like to attend, please RSVP by clicking here for funeral detail, or visit www.SaveCarolyn.com in the coming week.

For most of you who will not be able to attend, please do this for Carolyn one last time by forwarding the following link to five close friends, and making sure everyone of them become a bone marrow donor.

http://www.SaveCarolyn.com/be-a-donor/

Sincerely,

Family of Carolyn Tam

New Year. New Home. New Hope.

New Year.

The original plan was for my Uncle Lawrence from Vancouver to spend a month in Baltimore to help Mom out before and after the transplant.  When things fell through and we had to return to Toronto, my dear Uncle insisted on spending the month in Toronto anyway to help out and spend Christmas and New Year’s with Mom and I.

It may be mundane at times – three adults with no particular daily schedule except to Princess Margaret Hospital for check ups every other day, but it was sweet and it was precious family time that I’ll always be able to look back at to marvel over the love they have for me. 

We had people over for Chinese hot-pot on Christmas night, and the three of us rung in 2009 with Maria and Tony (West Side Story) on TV.

In the first week of the New Year (a week or so before Uncle Lawrence’s scheduled return to Vancouver), there was still no concrete next step on the horizon – we were waiting for OHIP’s response to our re-application for funding a different procedure at a different hospital in the States.  Assuming that it would take more than a few weeks to hear back from OHIP, and with Chinese New Year around the corner on Jan 26th, we started wondering:  Is it realistic for Mom and I to fly to Vancouver to ring in the Year of the Ox?

New Home.

Very few hospitals in North America offer Haplo-transplant for patients in remission, and even fewer would do it for someone who is not.  Fred Hutchison in Seattle is one of the few who has a protocol for not-in-remission Haplo-transplant, but their program can only take a couple of patients at a time and could not take me right away.  City of Hope in L.A. is the other possible treatment centre, but my blast cells are up to 40% and are now in the peripheral blood, so there is a chance that I may not be eligible for the protocol.  There were a lot of unknowns.  It seemed that it would be mostly waiting for answers in the immediate months, and should I get lucky with either hospital, they are both out West anyway.

So we started wondering again:  If  Mom and I were to just go for regular check ups twice a week while we waited for “The Plan” to materialize, can we do that in Vancouver with family and relatives around to help out?

On Monday Jan 5, 2009, I shared our thoughts about Vancouver with my Hematologist.  By the following Monday, with the help of Uncle Lawrence, we packed up my entire apartment for storage.  And by Tuesday Jan 13, the three of us were on the plane West bound.

The day after our arrival I made my first visit to the Hemotology Daycare Unit at Vancouver General Hospital who was monitoring my blood levels and physical condition thewhile we waited in Vancouver.  Unfortunately for me, I soon developed a fever due to an infection at my Hickman line site, so the line was removed right away and I spent everyday of the first two weeks in Vancouver between the hospital for anti-biotics and home in bed.

On Jan 26th, with the help of a combination of painkillers and the strength of the Ox, I made it out to Chinese New Year/ my dear friend Susana’s B-day dinner with a huge smile and a bigger appetite!

p10002832

New Hope.

When we left Toronto on Jan 13,  I left believing that being closer to family and relatives both physically and mentally were what Mom and I really needed, in order to continue down this in this uncertain journey.  Even though I did not know when or whether things will turn out for the better or worse, I trusted that whatever is supposed to happen will happen.

On Wednesday Jan 28th, I went to my new Hematologist at VGH for a post-infection check up.  Afterwards, he told me that VGH has had considerable success with mismatched cord blood transplant.  ‘Mismatched’ means the donor’s stem cells does not match all of the recipient’s antigens, which you have to match 6 for cord blood transplant and 10 for unrelated donor transplant.

Then completely unexpectedly, he told me that they have identified a couple of 4 out of 6 antigen-matched cord blood units for me!!!!  Although first I have to go through a round of chemo to try and put my leukemia back in remission, and if all goes well, then we hope to proceed with a transplant this Spring!

Cord blood transplant, like haplo transplant, is relatively new compared to unrelated donor matched transplant.  There are certainly different opinions about about their long term success rate.  But I right now, I am starting to feel like there may be hope again (which trust me was hard to dig up after coming home from Johns Hopkins).  Not to mention of all places, Vancouver is The Ideal location I want to have the transplant being closer to family and relatives.

It’s been a week since I’ve been at the hospital for my re-induction chemo, and is expected to stay approximately 1 month.  Hopefully, it will successfully bring me into remission, so that I will be eligible for transplant in the Spring!

Miss you Toronto!

And thanks for taking me in Vancouver!

 

 

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Support my friend Heather’s run with the Leukemia Society

Please Sponsor Heather Lloyd

Click here to access her Pledge Page for an online donation

Event Date:

Chinese Community Asking You to “Be The One” 華人社區請求你參與「就是你」(Be the One)捐贈幹細胞

Local Chinese Group Launch Month Long Stem Cell Awareness Campaign

For Immediate Release

華人社區請求你參與「就是你」(Be the One)捐贈幹細胞

本地華人社團啟動長達一個月的幹細胞認知運動

加拿大的OneMatch幹細胞及骨髓網絡(OneMatch Stem Cell and Marrow Network)很高興和加華幹細胞協會(OtherHalf Chinese Stem Cell Initiative)合作,公佈展開一個提高意識運動﹐目的在爭取更多華人在加國及全球登記成為幹細胞捐贈者。這運動的焦點環節為221日假萬錦廣場(3255 Hwy. 7, East)舉行的提高意識活動(Awareness Event)

需要幹細包移植的病人,包括癌症、淋巴瘤(lymphoma )、骨髓瘤(lymyeloma)、其他免疫系統及基因紊亂症患者,當中只有三成可以在自己的家人中找到吻合的幹細胞,其餘七成病人則要倚靠沒親屬關係捐贈者的慷慨支持。由於在同一種族人士當中找到吻合幹細胞遠較不同種族為高,所以OneMatch幹細胞及骨髓網絡需要有更多不同族裔的捐贈者登記。在任何一刻,最少有600名面對生命危險的加拿大病患者需要接受幹細胞移植手術。

OneMatch幹細胞及骨髓登記處的行政總裁Sue Smith表示:「透過和加華幹細胞協會合作﹐OneMatch及加拿大血液局(Canadian Blood Services)彰顯及結集社區的力量﹐以身作則成為一個領導榜樣,不單止令為社區內有需要接受幹細胞移植的病人更易找到幹細胞配對,同時全球的華人社區亦可受惠。」她亦表示﹕「我請求其他不同族裔社群跟隨這個例子,與OneMatch並肩合作,向我們的共同目標邁進﹐令OneMatch幹細胞及骨髓登記冊上所有不同族裔的登記人數都同時增加。」

不但要幫助加拿大的華人﹐同時也要幫助全球的華人﹐這是加華幹細胞協會的聯合主席Susan Go發起這次捐贈運動及提高意識活動的主要原因。「華人社區再不能自滿地抱著『這不會是我』的態度﹐尤其是當華人在OneMatch網絡的登記比例偏低的時候。作為一個社群﹐華人現在就要有所行動﹐集合全社區的力量盡力增加華人在加拿大和全球的登記數字。」

在未來四星期﹐加華幹細胞協會籌備了多項活動﹐包括推出網頁http://www.chinesestemcell.ca﹑在Rogers Centre 1232425日的農曆新年活動中設置資料攤位、在YouTubeFacebook上開展針對年輕人的招募活動﹐以及221日在萬錦廣場舉行提高意識活動﹐提醒社區捐贈幹細胞的迫切性。

如果你有興趣成為可救人一命的捐贈者,今天便請登上www.onematch.ca加入OneMatch﹐或致電加拿大血液局1-888-2 DONATE (1-888-236-6283)
關於加華幹細胞協會

現時在加國約有10名加拿大華裔病人正等待非親屬幹細胞捐贈,在全球幹細胞捐贈資料庫超過12,000,000個捐贈登記中,只有少於500,000個登記者是華裔。加華幹細胞協會由一班來自不同背景的市民創辦﹐希望把這個逼切情況告知廣大華裔社群。我們和加拿大幹細胞仲介OneMatch合作,目標是令更多華人到幹細胞登記處登記。憑借OneMatch、病人、不同社區組織、醫務專家及傳媒專才的幫助﹐我們舉辦提高意識運動﹐致力解除幹細胞的謎團﹐以及教育公眾有關捐贈常識。我們衷心希望得到華人社區支持﹐以及鼓勵到所有華裔加拿大人到OneMatch登記成為幹細胞捐贈者。我們希望大家認識到如果能救到一個生命﹐感覺會是多麼良好。就是你(Be the One) ﹐請你挺身而出﹐成為拯救生命的另一半( the Other Half)

加拿大血液局/OneMatch
加拿大血液局是一個全國性、非牟利慈善機構,專責管理加國除魁省以外所有省份的血液及血液相關產品的供應。加拿大血液局同時監察OneMatch幹細胞及骨髓網絡,以及在全國領導器官及組織的捐贈與移植。加拿大血液局負責運作40個固定的收集中心﹐以及每年超過19,000個捐贈站,加拿大血液局的營運資金由各省及特區的衛生廳提供,聯邦政府透過加拿大衛生部(Health Canada)負責監管血液管理系統。更多詳情,可瀏覽網址www.blood.ca
Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.


Toronto, January 22, 2009 – Canada’s OneMatch Stem Cell and Marrow Network is pleased to partner with OtherHalf – Chinese Stem Cell Initiative by announcing an awareness campaign aimed directly at increasing the number of Chinese stem cell registrants in Canada and throughout the world.  The campaign will culminate with an Awareness Event at First Markham Place, 3255 Hwy. #7, East, Markham, Ontario, on February 21st.

Patients needing stem cells transplants include those suffering from cancers, lymphoma, myeloma and other immune and genetic disorders. Only 30 per cent of them can typically find a match within their own family, while the other 70 per cent must depend on the generosity of unrelated donors. Because the likelihood of finding a match is far greater within one’s own ethnic group, more donors from diverse backgrounds are needed to sign up for the OneMatch Stem Cell and Marrow Network. Equally, at any given time at least 600 Canadian patients facing life-threatening illnesses are in need of a stem cell transplant.

“By partnering with groups such as OtherHalf – Chinese Stem Cell Initiative, OneMatch and Canadian Blood Services, recognize and embrace the power of community; to lead by example by making stem cell transplants more readily available for patients not only within their community, but within Chinese communities around the world,” confirms Sue Smith, Executive Director, OneMatch Stem Cell and Marrow Registry.  “I ask for other diverse groups to follow this example and work together side-by-side with OneMatch towards our collective goal of increasing all diversities on OneMatch Stem Cell and Marrow Registry.”

Helping the Chinese community not just in Canada but around the world is at the centre of Susan Go, Co-chair of OtherHalf – Chinese Stem Cell Initiative’s reason for holding the campaign and awareness event.   “As a community we can no longer be complacent thinking, ‘it will not be me’ when clearly our community is underrepresented on the OneMatch Network.  As a group we needed action now from all parts of our community to make sure we have done everything within our power to increase the number of Chinese registrants here in Canada and around the world.”

There are many activities the group has planned over the next four weeks from the launch of http://www.chinesestemcell.ca, an information booth at the CNY Rogers Centre event on Jan. 23, 24 and 25 and youth focused recruitment activities on YouTube and Facebook all centred around promoting the immediate need and the February 21st Awareness Event at First Markham Place.

If you’re interested in becoming the one match to save someone’s life, join OneMatch today by logging onto www.onematch.ca or calling Canadian Blood Services at 1 888 2 DONATE (1 888 236-6283).

About OtherHalf Chinese Stem Cell Initiative

Currently there are about 10 Chinese Canadian patients waiting for unrelated stem cell donors in Canada alone.  Out of over 12 million donors registered in the Bone Marrow Donors Worldwide database less than 500,000 of these registrants are of Chinese origin.

OtherHalf—Chinese Stem Cell Initiative was started by a group of concerned citizens from diverse backgrounds who wanted to make this dire situation known to the Chinese public.  In collaboration with OneMatch, the Canadian stem cell agency, our goal is to increase the number of registrants of Chinese origin in the stem cell registry.  With help from OneMatch, patients, various community organizations, medical experts, and media specialists, we are conducting awareness campaigns to deflect myths and educate the public about stem cell donation.  It is our sincere hope that this will motivate the Chinese community to champion this initiative and encourage all Chinese Canadians to register as stem cell donors with OneMatch.

We would like people to think how good they would feel if they could save a life… BE THE ONE.  Be the ‘other half’ to save a life.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.


About Canadian Blood Services/OneMatch

Canadian Blood Services is a national, not-for-profit charitable organization that manages the supply of blood and blood products in all provinces and territories outside of Quebec. Canadian Blood Services also oversees the OneMatch Stem Cell and Marrow Network, and provides national leadership for organ and tissue donation and transplantation. Canadian Blood Services operates 40 permanent collection sites and more than 19,000 donor clinics annually. The provincial and territorial Ministries of Health provide operational funding to Canadian Blood Services. The federal government, through Health Canada, is responsible for regulating the blood system. For more information, please visit our Web site at www.blood.ca.

CONTACT:

Amy Tam, Co-chair

Susan Go, Co-chair

Email – info@chinesestemcell.ca

(416) 760-6181

John Bromley, ABC

Communications Manager, OneMatch Stem Cell and Marrow Network

(416) 313-4438

Waiting for a match

Waiting for a match

Local launches stem cell campaign to save her life
January 23, 2009 05:50
Brian Towie/Metro Toronto – Other Half co-chairs Susan Go, left, and Amy Tam get the word out about Chinese stem cell donations at a press conference in Toronto Thursday. The Chinese stem cell initiative group will appear at the Rogers Centre this weekend during Lunar New Year celebrations.

Shu Yi Fung knows how important and difficult it is to find a stem cell match to help cure her leukemia.

The Chinese-Canadian has been waiting for a donor for the past year and a half, in order to undergo a bone marrow transplant.

But with no match found among her siblings she faces a less than 10 per cent chance of finding a match, like other people of Chinese origin awaiting the procedure.

Comparatively, Caucasian patients have an 80 per cent success rate. That’s because ethnic Chinese are direly underrepresented on worldwide donor networks.

In fact, less than 500,000 (or 4.2 per cent of Chinese) are registered, dramatically reducing the chances of doctors tracking down a match for transplant patients.

That’s why Fung hopes her fellow Chinese can help by registering with OneMatch, a national stem cell and marrow network.

“It would be a very precious gift for us during our Chinese Lunar New Year,” Fung said in a statement at a press conference.

“I’m appealing on behalf of all leukemia patients to all you healthy people.”

It’s a state of affairs that Other Half — Chinese Stem Cell Initiative, a group of concerned Chinese-Canadians spearheading this campaign, wants to change.

Partnering with OneMatch, the group is working to get the word out on how important it is for Canada’s Chinese community to register on OneMatch’s database.

Susan Go, co-chair of Other Half, says there are challenges to getting the urgency of its message out among the community.

“We realized that there are certain unique barriers we need to address right away,” she says.

“First of all, Chinese Canadians don’t think there is an urgency in this matter. Secondly, people are afraid to join the registry because they think that donating stem cells is a very painful process and risky to their health.”

Still, Go says Chinese-Canadians are people who unite when there is a problem to solve — and she’s confident they will answer this call for help.

“Our hope is that every Chinese who hears this message will take that step to register with OneMatch,” she says. “Just think how good you would feel if you could save a life.”

For more information, visit http://www.onematch.ca/ or http://www.chinesestemcell.ca/.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.


Chinese Stem Cell Initiative

A wonderful organization called “Chinese Stem Cell Initiative” has recently been formed with the singular mission of increasing the number of registrations of Chinese origin in stem cell registries worldwide.  Our family is so touched by this, and the wonderful people behind its formation.

Please take a look at its website.

Be A Donor.  Spread The Word.

Sincerely,

Patrick

————-

http://www.chinesestemcell.ca/

Our Mission

“To increase the number of registrants of Chinese origin in the stem cell registry worldwide.”

Our Message

There are over 12 million donors registered in the Bone Marrow Donors Worldwide database. The Canadian stem cell agency, OneMatch, is a member of that network. Less than 500,000 (or 4.2%) of these registrants are of Chinese origin.

Currently there are about 10 patients of Chinese origin waiting for unrelated stem cell (bone marrow) donors in Canada. Caucasian patients needing stem cell transplants have about 80% success rate in finding unrelated matched donors. However, Chinese patients have less than a 10% chance of finding unrelated matched donors, which means that more than 90% of the patients are not able to have the life-saving stem cell transplants they need. This is because Chinese are grossly under-represented in the worldwide stem cell registry.

OtherHalf—Chinese Stem Cell Initiative was started by a group of concerned citizens from diverse backgrounds who wanted to make this dire situation known to the Chinese public. In collaboration with OneMatch, the Canadian stem cell agency, our goal is to increase the number of registrants of Chinese origin in the stem cell registry. With help from OneMatch, patients, various community organizations, medical experts, and media specialists, we are conducting awareness campaigns to deflect myths and educate the public about stem cell donation. It is our sincere hope that this will motivate the Chinese community to champion this initiative and encourage all Chinese Canadians to register as stem cell donors with OneMatch.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.


Volunteers needed for Stem Cell Drive in Toronto in Feb 2009

event_chinese_newyearYOUR HELP IS NEEDED.

The Chinese Stem Cell Link Group, in partnership with Canadian Blood Services’ OneMatch Stem Cell and Marrow Network, will be hosting a Stem Cell Drive on Feb 21, 2009.

To promote the Drive, there will be an information booth at the Chinese New Year Show at the Rogers Center, and volunteers are needed on Jan 23, 24 and 25 to hand out flyers at the booth and answer general questions from the patrons.

Each volunteer will receive a FREE ticket to the show and a $10 meal ticket (per day of the shift).  Volunteers are also entitled to a maximum of two additional tickets at a discounted rate of $12.50 each.

To participate, please click on the link below and fill in the Online Volunteer Registration Form http://www.eskynet.com/stemcelldrive.htm and you will be contacted before January 16th to confirm a date.

For details about stem cell donation, please visit www.OneMatch.ca

If you have any further questions, please email Simon Chow at simonchow123@gmail.com

Thank You in advance for your participation.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.


Gift of Life – A potential donor identified!

WE ARE ALL EXTREMELY EXCITED AND PROUD TO FIND OUT THAT ONE OF THE REGISTERED DONORS AT OUR SUMMER DRIVES HAS BEEN IDENTIFIED AS A POTENTIAL DONOR!!!  Below is the notification from Gift of Life:

On Jun 22, 2008 you volunteered to join the Gift of Life Bone Marrow Registry at a recruitment drive held at the Chinese Martyrs Catholic Church. We are thrilled that you made the important decision to be a part of this life-saving resource for patients around the world!

You have been identified as a potential match for a 6 year old boy suffering from Inherited Immune Systems Disorders needing a bone marrow transplant.

As you can imagine, time is critical for the patient who is awaiting the transplant, so it is very important that I speak with you as soon as possible in order to explain the next steps in the donation process. Please contact me as soon as possible by phone at 800-9MARROW or e-mail me at hseidman@giftoflife.org to arrange a time to speak.

Thank you very much, and I look forward to hearing from you soon!

It truly is a gift of life for someone in need.  

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Brother of leukemia patient in China changed his mind on day of donation – 捐骨髓日哥變卦 弟網上懇求生機

【明報專訊】按照原來的計劃,身患白血病的張成友將於春節前在北京接受骨髓移植,可原本答應為他捐獻骨髓的哥哥卻在手術前突然改變主意。張成友日前在網上發帖,懇請哥哥捐獻骨髓,給自己生的希望。

《京華時報》周六報道,張成友今年32歲,老家在河北遷安,大學畢業後留京工作已有10年,目前為西門子(中國)有限公司醫療部工程師。

2007年1月,因身上出現血點,張成友被確診為M5急性髓係白血病。接受了6個療程的化療後,張成友回老家休養了一年。去年9月,他的病情復發。

張成友說,患病後,他一邊接受化療,一邊通過中華骨髓庫尋找配型相合的骨髓捐獻志願者。張成友的哥哥也接受了HLA配型,結果為「半相合」。

骨髓移植大概得4、50萬元人民幣。張成友說,得知他患病的消息後,公司同事為他捐款7萬多元,公司領導還答應為他解決部分費用,加上自己借一點,錢基本上夠了,手術原計劃于春節前進行。

張成友哥哥上月28日從老家來京,住進304醫院做骨髓移植的術前準備。張成友表示,次日一早,醫生準備為哥哥做體檢時發現,哥哥已不辭而別,手機也處於關機狀態。

張成友隨即返回遷安,登門尋找卻不見哥哥,打他手機也不接。嫂嫂後來打來電話說,擔心手術成功率太低並對自己身體有影響,哥哥已不願捐獻骨髓。

張成友元旦在網上發了一個名為《哥哥,我想活》的帖子,希望哥哥打消顧慮捐獻骨髓,給他生的希望。

張成友哥哥周五中午在電話中表示,他和張成友的配型只是「半相合」,僅符合手術的最低要求。他擔心手術成功率太低,且自己身體一直不太好,患腰椎間盤突出已有多年,擔心手術對身體有損害。更讓他為難的是,他的妻子對此堅決反對,甚至以離婚相要挾。

據主治醫生閆蓓表示,「半相合」,手術成功率肯定比「全相合」的低,因為抗排異反應更難,所以手術費用也會更高。但目前來說,已沒有別的選擇。

血癌男��发帖求兄捐骨髓(图)

32 year old Cheung Sing-Yao, a medical engineer in Beijing, was first diagnosed with acute leukemia in January 2007. 

A perfect unrelated marrow match was identified in Jiangxi at that time, however Cheung could not afford the approximate cost of $500,000 Yuan for the transplant, and therefore went through 6 rounds of chemotheraphy instead to try and put his leukemia in remission.  Which lasted for about a year, and ultimately relapsed in September 2008.

According to Cheung’s oncologist, a marrow transplant is Cheung’s only hope now for long term survival.  Unfortunately, the unrelated donor in Jiangxi has retracted their participation to be a marrow donor, leaving Cheung’s older brother, who is a half match (or haplo match), his only hope.

Cheung’s co-workers raised approximately $70,000 Yuan.  Cheung borrowed  from the bank, and Cheung’s employer agreed to pay for the balance so that a transplant can proceed before this Spring. 

Cheung’s brother travelled from their home village to Beijing to start the pre-transplant physical exams.  However, on the morning of Dec 28th, 2008,  he evidently changed his mind, left the hospital without notice and kept his cell phone turned off since.

Cheung repeatedly tried to reach his brother to appeal his decision, but was unable to get through in person or by phone.   On Jan 1,2009 , Cheung posted his appeal on a blog hoping to reach his brother through the internet.

Through a phone interview on Jan 2, 2009, Cheung’s  brother, a primary school teacher, told a local reporter that the success rate of a haplo transplant is relatively low compared to a transplant from an unrelated perfect match, and he was concerned that the donation process would affect his already ailing back.  He also told the reporter that his wife would divorce him if he went through with the donation. 

According to Cheung’s oncologist, the donation process definitely will not affect Cheung’s brother’s health in any way.  And even though the success rate of a haplo transplant is lower than a perfect unrelated match, time is of the essence for Cheung right now and a transplant of his older brother’s half-matched marrow is Cheung’s best hope for survival.

While Cheung and his parents continue to hope that his older brother will change his mind soon, Cheung’s step-sister has recently submitted her blood for an HLA typing, and the Chinese marrow registry continues to search for a perfect unrelated match for Cheung.

Our love goes out to the family and friends of Valerie Niles

January 2, 2009 at 12:00 AM EST

A 36-year-old leukemia patient who fought the Ontario government to have a stem-cell transplant funded in the United States won her case – but died before she was able to obtain the treatment, prompting calls for an investigation.

Valerie Niles’s last few hours of life were spent in an Ottawa hospital bed with her mother’s hand on her heart until its final beat on the clear, cold morning of Dec. 22.

Her death marked the end of an 11-month battle with acute myeloid leukemia, but also with government. Ms. Niles and her oncologists garnered a coveted spot for a special stem-cell transplant treatment in Seattle; she was accepted, but the Ontario Health Insurance Plan refused to fund it in August.

Although Ms. Niles, who spent much of her life in Toronto, eventually won her case on an appeal, by then seven weeks had passed and the earliest treatment opportunity was in November. Shortly before she was to leave for Seattle, she developed a complication, rendering her ineligible for the treatment, her best shot at survival gone.

“If I had gone in August, I would be in recovery now. It was OHIP’s refusal to fund our case that caused the delay,” Ms. Niles said in a telephone interview from her Ottawa hospital room five days before her death. “… I feel they did it just to save money. They do it to weed out the weak.”

Ms. Niles’s case raises disturbing questions about Ontario’s out-of-country process, which has already undergone one review after cancer patient Suzanne Aucoin of St. Catharines, Ont., was denied funding for treatment she received in the United States.

Although that external review is complete, problems persist, not only for Ms. Niles but another patient, Susan Caiger-Watson. Like Ms. Niles, she was denied similar treatment in Seattle, won on appeal but then developed a complication, making it impossible for her to obtain treatment. She died on Aug. 24, leaving behind husband Chris Fraser and daughter Sophie, 11.

“It’s one thing to fight a deadly disease but when you have to fight the system at the same time, that’s doubly deadly,” Mr. Fraser said. “You would think that after one sacrifice the lesson would be learned.”

Perry Brodkin, a health lawyer in private practice who was the sole lawyer for OHIP from 1973 to 1991, read Ms. Niles’s case and said evidence from her oncologists was overwhelmingly in her favour.

“This case cries out for a brand new investigation of OHIP’s prior approval process,” Mr. Brodkin said. “It’s not working if they deny funding in a case like this. Are we going to put another patient’s life on the line with this OHIP approval process?”

He also called on the coroner to investigate whether the government’s denial of funding and the subsequent delay was a contributing factor in Ms. Niles’s death, which he labelled a travesty.

Ontario’s out-of-country pre-approval process is seen as a medical safety valve for patients. For treatment to be approved, the procedure must be unavailable in Ontario, cannot be experimental and should be deemed medically appropriate. However, patients can have out-of-country treatment funded even if it is available in the province if there is a delay that would cause irreversible tissue damage or death. The patient’s physician must fill out part of the form.

Ontario’s Health Ministry says it has increased the number of patients approved for out-of-country funding.

In the 2002-03 fiscal year, 2,083 patients were approved for out-of-country care. From April 1, 2007, to March 11, 2008, a total of 6,132 patients had their treatment approved, according to government figures. (Those numbers do not include the referrals of emergency neurosurgery and cardiac patients sent to the United States for care.)

The number of people denied out-of-country treatments has also increased, although not nearly as much. In fiscal 2002-03, 225 patients were denied funding through the program, compared with 388 patients who were denied from April 1, 2007, to March 11, 2008.

After four rounds of chemotherapy failed to provide a remission for Ms. Niles, oncologists recommended she go to the Fred Hutchinson Cancer Research Center in Seattle, where a cancer-busting regimen of chemotherapy, total body irradiation and a radioactive monoclonal antibody that targets leukemia cells were provided.

Without this treatment, it was undisputed that Ms. Niles would die within a year, according to the decision of Ontario’s Health Services Appeal and Review Board, a panel that hears from patients who have been denied funding for out-of-country treatment.

In refusing her case on Aug. 19 last year, OHIP said the treatment is not accepted in Ontario as appropriate for a person in the same medical circumstances.

Ms. Niles saw the denial as the government “playing the odds and that’s disgusting.”

Even obtaining public documents on Ms. Niles case was riddled with obstacles. Although Ms. Niles did not ask for her name or documents to be restricted at the review board public hearing, the exhibits and efforts to contact her were achieved only after a lawyer became involved on behalf of The Globe and Mail.

Lorri Puil, an Ottawa-based physician scientist who also does medical advocacy, spent two months researching the case for Ms. Caiger-Watson’s appeal at no cost and was also involved with Ms. Niles’s case.

“I’ve seen patients who are dealing with a life-threatening disease, they’re trying to do the best they can with it and all of a sudden they are hit with the fact that their provincial government won’t pay for their treatment,” Dr. Puil said. “And so they get into this bureaucracy they shouldn’t have to deal with and are put through an extraordinarily painful process.”

Indeed, Mark Minden, medical oncologist and senior scientist at Princess Margaret Hospital and the Ontario Cancer Institute, who spent a full day of his own time testifying at the appeal of Ms. Niles, said the legislation to obtain out-of-country treatment can be prohibitive, especially when it involves cancer cases.

“I saw the legislation as not being very fair,” said Dr. Minden, who holds the Philip S. Orsino Chair in Leukemia Research at Princess Margaret. “I think it was denying people treatment that was potentially lifesaving.”

Dr. Minden said that if Ms. Niles had gone to Seattle, she had a 20- to 25-per-cent chance of survival at three years, compared with 10 to 15 per cent if she received treatment in Ottawa. The Seattle treatment would cost roughly $500,000 (U.S.).

He stressed that novel therapies to treat patients like Ms. Niles are expected to be available in Ontario this year.

With the Seattle treatment no longer possible, Ms. Niles went to the Ottawa Hospital, where she was to have a stem-cell transplant; her brother, Judd, a perfect match, was her donor. However, after two days of intensive chemotherapy, she developed complications and stopped breathing.

A newlywed, she leaves husband Jean-Marc Salvagno of Belleville, who owns a French bistro. “She was so full of life,” he said.

Yesterday, he was retrieving her ashes.

“Bureaucracy seems to have a lot to do this,” said mother Marianne Niles, 66, who is holding a private memorial of family and friends today. “She was good to go in the summertime. The doctors tried so hard; they all worked so hard for her.”

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

 

 

 

 

 

Have a magical Christmas from Carolyn and Madellina!

2008-christmas003

 

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Carolyn returns to Toronto – 家宜暫返多倫多

mingpao-sat-supplement-dec2020081

 

採訪、攝影:陸君樂
圖片提供:譚家誼

原定於今天(12月20日)在美國巴爾的摩(Baltimore)John Hopkins醫院,接受弟弟骨髓的血癌患者譚家誼,因為身體狀況不適宜進行移植,最後需要折返多倫多,目前仍未知下一步有什麼選擇。

本刊曾嘗試聯絡家誼,但她表示現階段並未準備接受訪問,但亦多謝傳媒們的關心,並希望透過我們把以下信息傳遞開去:
……我希望這次報導不只是交代我的最新情況,但亦再次提醒公眾,骨髓移植只限於同一族群,希望大家不只是看我的故事,更會透過登記成為骨髓捐助人來支持亞裔血癌病患者。

過去兩周我們在John Hopkins做了數個移植前的檢查和測試,他們發現我的骨髓內仍然有癌細胞的跡象,加上我的Blood Level不斷下降,令我不能進行Non-myeloablative Haplo Transplant。

現時我們還未知道下一步應該怎樣走……我是否又要做化療?我的心臟是否太弱,連標準的骨髓移植都不能做?如果我需要再次落美國做移植或其他手術,OHIP又會否繼續負責其開支?

眼前雖然仍有很多不明確因素,但我們一家亦因大家的支持而十分感動,亦因此有力量繼續走下去。

 

………it is important to me that the next report is not just an update on my situation, but to remind the public again, that marrow transplant is limited within one’s ethnic group, and I hope that people will not just read our story but support all Asian leukemia patients, now and in the future, by Taking Action and registering to be a marrow donor right away.
 
We spent the past 2 weeks at Johns Hopkins doing various pre-transplant testings, through which they found traces of leukemia cells in my marrow, plus my blood levels have been dropping consistently, which rendered me ineligible for the Non-myeloablative Haplo Transplant. 
 
At this point, we really don’t know what the next steps are – Do I need more chemo? Has my heart become too weak for standard Myeloablative Haplo Transplant?  Will OHIP still cover me if another hospital in the States would take my case?

There are a lot of unknowns right now, although my family and I are very touched by all the well wishes we have received and will continue to draw strength from the support from the community. 

 

 

Thank you and Take care,
Carolyn

 

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Carolyn’s transplant cancelled – 譚家宜移植骨髓夢碎

http://www.mingpaotor.com/htm/News/20081218/tfa1.htm

<明報專訊> 兩周前赴美國巴爾的摩Johns Hopkins醫院,準備接受骨髓移植手術的華裔血癌患者譚家宜(圖),出發前滿懷重拾健康的希望,不料檢查結果發現體內仍存在癌細胞,最終無法進行手術的她,於上周六返回多倫多的家中。

遭受沉重打擊的譚家宜難免感覺失望,她昨日透過電話表示,現階段她的身體狀態無法接受記者的訪問,但就會電郵一封聲明給《明報》,透露她此行由於(化療後)體內仍然存在癌細胞而無法進行手術,以及她希望對公眾透露的信息。

記者昨日聯絡到譚家宜﹐她的聲線聽來無比疲累,譚家宜表示,她和母親目前正身處醫院,不方便講話的同時,亦希望記者理解她目前身體狀況仍未有接受訪問的準備,亦表示「不知下一步該如何辦」,隨後譚家宜依約給記者電郵來一封個人簡短說明。

「對我來說最重要的不僅是向公眾報告我的近況,還要提醒大眾,亞裔骨髓捐贈者的樣本數量仍然相當有限,希望在這個聖誕期間,大家不僅是閱讀我的故事,同時亦能採取積極行動登記樣本,支持所有的亞裔血癌患者。」

「過去兩周,我們在Johns Hopkins醫院進行了各種骨髓移植的前期檢查,檢查發現體內仍然存在癌細胞,表明我不符合做骨髓移植手術的條件。」

「在這一刻,我們真的不知道下一步該如何做:我是否需要做進一步的化療?我愈來愈脆弱的心臟,是否還能承受在別的醫院做骨髓移植手術?假如美國別的醫院能做這個手術,安省OHIP能否仍舊資助我的手術費用?」

“It is important to me that the next report is not just an update on my situation, but to remind the public again, that marrow transplant is limited within one’s ethnic group, and I hope that people will not just read our story but support all Asian leukemia patients, now and in the future, by Taking Action and registering to be a marrow donor right away.
 
We spent the past 2 weeks at Johns Hopkins doing various pre-transplant testings, through which they found traces of leukemia cells in my marrow, plus my blood levels have been dropping consistently, which rendered me ineligible for the Non-myeloablative Haplo Transplant.
 
 
At this point, we really don’t know what the next steps are – Do I need more chemo? Has my heart become too weak for standard Myeloablative Haplo Transplant?  Will OHIP still cover me if another hospital in the States would take my case?

There are a lot of unknowns right now, although my family and I are very touched by all the well wishes we have received and will continue to draw strength from the support from the community.”

譚家宜於11月29日在母親和友人的陪同下赴美國巴爾的摩Johns Hopkins醫院,準備在明日接受弟弟的骨髓移植,雖然弟弟與她的骨髓配對率只有五成,但院方將配以藥物等技術來提高配對成功率,該院進行這類手術的平均成功率達八成半,去年更達97%。而Johns Hopkins醫學院及醫院在美國都是首屈一指的。

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Carolyn on Pearl Report

Pearl Report, an English TV journal from Hong Kong, explains and de-mystifies the whole process of bone marrow or stem cell donation.  Local doctors and Leukemia patients, including Carolyn, are interviewed for their different perspectives.  Thank you for Naomi, our smart and hard working cousin, for putting this together.  Watch.

Carolyn off to US for transplant – 家宜赴美求醫

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採訪、攝影:陸君樂
圖片提供:明報資料室

當你閱讀這篇訪問時,多倫多血癌患者譚家宜(Carolyn)已經和家人身在美國巴爾的摩(Baltimore),準備12月20日,在John Hopkins醫院接受弟弟的骨髓移植。去年這種移植手術在同一所醫院的成功率達97%,但家宜仍需留院觀察3個月,最壞的情況便是出現排斥,家宜便會內臟衰竭。
但在John Hopkins醫院進行移植前,家宜亦要再做五日化療和一日電療,確保體內沒有癌細胞。「所以這幾個月『有得食好食』,因為做完(化療及電療)多數會發燒、感染,一定有段時間無胃口。」
 

她坦承害怕死亡,不過亦沒有去想太多,而且在這大半年,她已經經歷過不少人的關心,特別是自4月以來,多倫多、溫哥華及香港等社區不少人都為她奔走呼籲,這是很多人亦沒有機會經歷的。如果過了這一關,她亦計劃成立基金及參與癌症知識宣傳工作回饋社會。

在記者前的家宜看來精神奕奕,但其實由今年4月至今,她又已做了3次化療,最輕時5呎6吋的她只剩105磅。

血癌有如計時炸彈
「對上一次(化療)是九月中,現在精神好了些,但感覺到身體比以前弱了。如果一天找不到合適的骨髓作移植,根據醫生的意見,血癌是永遠有機會復發,就如計時炸彈,所以美國此行是冇得選擇的。但我在Princess Margaret醫院的主診醫生幫我爭取到OHIP的資助,因為在加拿大做不到同類型手術。不過其實這不算手術,因為毋須開刀。」

John Hopkins醫院自2003年開始為血癌病人做這種幹細胞或骨髓移植,平均成功率達八成半,去年更達97%。「弟弟的和我的骨髓配對率雖然只有五成,但院方會配以藥物等技術來提高成功率。不過移植後三個月都需要留院觀察,因為如果有排斥通常會很快便出現,最壞的情況是我的內臟器官不接受弟弟的幹細胞,那時我便可能因腎或肝衰竭而死。」

超市職員亦問候
家宜亦坦言會驚最壞的情況出現,「但不會去想,亦沒有計劃這些『如果』出現怎麼辦,因為有太多可能的情況,如果去諗這些事情是諗不完的。」雖然目前仍未找到與自己配合的骨髓,移植後亦有一定風險,但家宜從沒有怨天尤人,「這樣說可能很老土,但這幾個月我覺得很感恩(blessed),因為唔出事唔知咁多人關心自己。

「例如早前落John Hopkins做檢查,有個好朋友,Susanna專程從溫哥華飛過來陪我和媽咪一起駕車落去,驚我駕車太久太累。當然最多謝我的媽媽和弟弟,但亦有很多auntie、uncle,甚至我媽咪早前去超市買肉,都有職員向她問起我的情況。另外,One Match(加拿大的幹細胞及骨髓資料庫)現在終於有中文版,亦多得王裕佳醫生的據理力爭,這將不止幫助我一個,亦會幫助到更多其他有需要的病人。」

雖然這次南下有OHIP保險,但只包醫唔包藥,「其實就如在加拿大做手術一般,只要是醫生寫紙開的藥都要另外購買,當然不會包其他開支如住宿或弟弟的機票。」由如現時經濟環境不佳,在香港工作的弟弟亦沒有申請假期,只是連續兩個周末飛往巴爾的摩,第一次(這個周末)為了驗身,19日的周末則是為了做幹細胞移植。記者即時想到的是合共近$3000的兩張港美來回機票,但家宜的反應卻是體貼弟弟的健康,「咁飛法,很傷身。」

短期柏文坐地起價
原來巴爾的摩因為有John Hopkins這所名醫院,不少人前來求診,所以短期租屋的市場亦坐地起價,完全無價講,家宜她們在那裏租一個已裝修的柏文四個月便需要$16000(加幣)。

「如果發燒或感染,需要買藥物,例如抗生素,OHIP亦唔包,而我每次做完化療都會有這些情況出現,因為白血球會降到零,抵抗力全無,所以難以估計這方面的開支。如果在多倫多買那些藥,大約每個月$7000。說實話,現在我張張信用卡已『碌爆』。」由於治病所費不輕,所以www.savecarolyn.com 網頁最近都增加了一個捐款欄。

「可能不少人都會覺得我好慘,但我經歷過這麼多別人的關心,相信很多人亦沒有機會經歷,我已經覺得很幸福。而且在4月之後,不少教會亦致電給我們,說會為我們祈禱,亦有朋友帶我們去佛堂。6月的募捐亦籌得25萬,One Match亦多了3000多個樣本,這些事情都令我十分感動。」

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Stem Cell Awareness Day- Richmond Public Library, Richmond B.C.

Date: 2008/12/07
Time: 1:00-4:30pm
Venue: Richmond library (7700 Minoru Gate, Richmond)

In an effort to recruit more volunteer stem cell donors from varied ethnic communities, Canada’s OneMatch Stem Cell and Marrow Network has begun to offer services in languages other than English and French.

Today, more than 600 patients across Canada require a life-saving for cancers such as leukemia, lymphoma and myeloma, as well as for other immune and genetic disorders. Currently, there are 237,000 people registered as stem cell donors in Canada and only 17% are non-Caucasian.

S.U.C.C.E.S.S., Canadian Blood Services and Richmond Public Library will be hosting a Stem Cell Awareness Day on Dec. 7 (Sunday) to recuirt more Chinese donors

Fee: Free
Contact: 604-408-7274 ext. 2071
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