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

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

My Personal Experience as a Bone Marrow Donor – Brian E. Beattie

My Personal Experience as a Bone Marrow Donor – Brian E. Beattie

Brian E. Beattie
Last Modified: December 5, 2002

Brian Beattie in 2002 Canadian Flag
Dear Reader…

The following may be used to promote the bone marrow registry program world wide but must not be altered in any way shape or form. My name and email address must accompany my “diary.”

My only hope is that this will draw more people into the registry and as a result of this hopefully save the lives of those who need a bone marrow transplant.

Sincerely,

Brian E. Beattie

Not to be altered or reproduced in any shape or form without the written permission from the author,

Brian E. Beattie
140 McCurdy Drive
Kanata – Ontario
K2L-2Z6
Canada

January 1990

I attended a bone marrow information session at the Ottawa General Hospital in Ottawa, Ontario Canada. The information session involved a brief overview of the bone marrow program, a question/answer period and a take home information booklet. Shortly afterwards I signed the permission form to get involved in the bone marrow program. At this point a small blood sample was taken from me. (December 1990)

February 1991

I had my HLA typing done and the first four antigens A + B was recorded on the national registry (for me this happened at the Ottawa Red Cross). The process was painless – just a few small vials of blood were required, 10-15 minutes and I was out of there.

December 1993

A request came into me that I was a possible match for a bone marrow harvest.

January 1994

I was requested to come to the Ottawa Red Cross to have a DR test performed. Shortly afterwards I was notified that I was not a match but the results of my blood tests would be kept on the computer.

June 1994

I was informed that I may be a possible match for another patient. I had honestly forgotten about the registry and to be called caught me off guard. I spoke with someone from the Red Cross who asked me if I could come in a week later to have a blood test performed (MLC).

ONE WEEK LATER

I came into the Ottawa Red Cross to have a MLC test done. I was told that it would be three weeks to three months before I would hear a result on whether I was a match or not. I thought about it constantly and down deep I had a gut feeling that I would be a match but didn’t get to excited in case I proved not to be a match.

July 1994

I remember this one exactly. Three weeks to the day and 8:20 a.m. the bone marrow co-ordinator at the Ottawa Red Cross called me at work and asked if I was sitting down (by the way I was). They informed me that I was a match for “my patient”. The next few moments were hard to describe, sort of a mixture between a real high to complete bewilderment. It was extremely hard for me to concentrate on work the remainder of that day as my mind was going 100 miles per hour wondering who the patient was, where do they live, what will my surgery be like, what is the patient feeling, all these questions…. I wanted to get things rolling right away so I called my wife at home to see if she could bring our three children to the baby sitter that same afternoon so we could meet with one of the doctors from the Ottawa Red Cross. Later that afternoon I along with my wife attended the meeting and they (Doctor and bone marrow co-ordinator) answered any questions we had. We also viewed a short promo film which included a small segment on the actual surgical procedure.

THREE DAYS LATER

I went to my doctor and there had a complete pre-harvest workup which included – two chest x-rays, blood work, urine analysis, a complete physical and an ECG. The purpose of this physical is to ensure the donor can safely go through the surgery with a general anesthetic. The results of these tests were picked up the next day by the bone marrow co-ordinator of the Red Cross. At this point I felt like I was caught in a whirl wind as many things were starting to occur at the same time.

ONE WEEK LATER

I went to the Red Cross again where they removed 15 vials of blood from me that would be sent to the hospital of where “my” patient resides. These samples would be tested further to ensure a match with that of the patient. At about the 11th vial I started to have this hot flash, it felt as if someone were holding a torch over my body. During the next few moments I had nurses throw cold compresses about my head and shoulders. Although I was very embarrassed it felt good to be cooled down. The nurses had everything in control and told me that this happens now and again and not to worry about it.

TWO HOURS LATER

After my visit to the Red Cross I went to the Ottawa General Hospital for (yes you got it… more blood work) I was by now wishing I had a valve installed on the inner side of my arm. They also did a urine test. After a few moments of bouncing from nurse to nurse I met with one of the two surgeons that would be performing the harvest. I also met with the bone marrow co-ordinator from the Ottawa General Hospital at this time she answered any further questions that I had, they also hold me my date of when the surgery would be held. My surgery date would be 23 days from today!

TWO WEEKS LATER

I went to the Ottawa Red Cross and gave one unit of my blood that would be given back to me while I was in the recovery/day care unit on the day of my surgery. During this donation “my oil light came on again” this was now as previous embarrassing. I felt like crawling under the chair that by now they had me lying in.

From the date that I was informed that I was a positive match to the date of my surgery I can honestly say that I thought about the bone marrow program and “my” patient several dozen times a day. I wanted to tell everyone that I spoke with, matter of fact if you ask my work colloquies they would probably say that’s all I spoke about. My friends and family also heard the same probably more as I was telling them all about the dreaded disease that now is starting to be tamed-Leukemia.

As a user of email and access to the Internet I had access to several newsreader groups from which I obtained a wealth of information. The most valuable information on the “net” came from a monitored news group called BMT-TALK, (Bone Marrow Talk). I sent out a query on the email asking if anyone was a donor or about to become a donor. This was really neat as within hours I had a response from a lady who lived here in the Ottawa-Carleton area and also was about to become a B.M.D. (Bone Marrow Donor). This was amazing as this news posting goes world wide and the chance of locating someone in my own city was neat ! We wrote to each other telling of our experiences as we went through the workup process, separate but together via e-mail.

24 HOURS BEFORE SURGERY

Well here I am only 24 hours and I’ll be the donor on the table. I am now starting to get nervous. About 5:30 p.m. I receive a call from the Ottawa General Hospital asking me to be at the hospital at 6:50 a.m. the next morning. I am not to eat or drink anything after midnight – I think I can handle this request. For a good part of the night I toss and turn then finally drifted off to sleep…

September 8, 1994 – The Big Day !

Well this is it. The result of what I am about to do may possibly save the life of someone who I do not know. My wife and I got up this morning at about 5:50 a.m. Now since I can’t eat or drink anything because of my 8:00 a.m. surgery I shower and was all set to go at 6:15. My wife, God bless her, felt my nervous excitement and optioned not to eat breakfast.

We arrive at the hospital at 6:30 a.m.(twenty minutes early). We check in at the admissions office and then proceed to the day surgery unit where we wait in the near dark waiting room. After about 15 minutes of nervously flipping through magazines the nurse came out and asked me to come in and get changed into the hospital “greens”. I was then assigned my bed, the Nurse who was assigned to prep me was simply wonderful. I was still nervous my wife and I said a short prayer together for me and for the patient who the following day would receive my bone marrow via intravenous (I.V.).

At about 7:45 a.m. the porter showed up to bring me to the operating room. On the way I spot the bone marrow co-ordinator from the Ottawa Red Cross who was himself waiting to get into the “greens” as he was going to be video taping my operation. This video would later be used to assist those who like myself were positive matches and would be going through the donation procedure.

7:50 a.m. and I’m laying on the stretcher outside the operating room waiting for the anesthetist to show. As I strain my neck to sneak a peak through the window of the operating room I see a beehive of activity, my stomach is now a ball of nerves. Finally after a few more minutes (which feels like hours) I am wheeled into the operating room. The room appears smaller than I envisioned it – actual size maybe 12×15 ? What I do notice first is the anesthetic machine and the tables and tables of surgical instruments. Within minutes of being wheeled into the room one of the nurses puts an I.V. line into my left hand – painless. Another is placing heart monitor pads on my chest and left side of my back, while she is doing that another is placing a blood oxygen clip on one of my fingers on my left hand. Talk about being wired for sound ! I now hear a beep-beep-beep from my heart monitor – If I didn’t know any better I would say one of the nurses was playing Nintendo… The bone marrow co-ordinator from the Ottawa Red Cross calls out my name from across the room. He started video taping me as soon as I entered the operating room, this video for me is something that I will provide me lifetime of memories and the Red Cross a educational tool.

The nurses and surgeons are all there, I count 11 total. I’m starting to get very drowsy now and it is really hard to find the urge to drift off – but I am determined to give it my best shot (as can be seen in the video). The anesthetist gives me a small drink of very bitter antacid, YUCK ! The next few seconds are a blur but I hear the anesthetist telling me to breathe the oxygen and GO TO SLEEP! What happened next ? Lights out baby… that’s it… I was outa there !!

The next thing I remember is I have an extremely sore throat and a mask of some sort on my face. Not knowing where I was I was babbling not understanding what I was saying but still speaking. I remember seeing the bone marrow co-ordinator briefly but then drifted off to sleep. I didn’t know it but I was in the recovery room and the operation was over – successful but sore.

Wow, I can hardly wait to view the video.

I was in the operating room from 8:00 to 9:00 a.m., then wheeled into the recovery room from 9:00 to 10:00 a.m., then off to the day care unit where I started out earlier in the morning.

The time now is 10:00 and I am feeling much better, less groggy but a little sore in my lower back. I still have the I.V. in my left hand which is accepting my unit of blood that I had given at the Red Cross a week earlier. It took about three hours to transfuse me and while I am in my bed the bone marrow co-ordinator shows up with a goodie bag.

My wife at this point takes over the video camera as I am presented with some parting gifts from the Red Cross (I feel like a game show contestant). I am given a couple large Red Cross note pads, a coffee mug, a T-shirt and heavy duty sweat shirt with a really neat logo of a heart and two faces looking at each other each in differant colors.

I left the hospital at about 3 p.m. (the same day) and headed home. Once I got home I went to bed and slept until early evening, got up for about 1.5 hrs and then off to bed again where I slept until mid morning the next day. I got up (very slowly) and walked about realizing this was not as bad as I thought it was going to be.

Over the next several days I’d be lying if I said I didn’t hurt. It was quite painful – BUT thank goodness for those little yellow pain pills. “Take a trip and never leave the house”. Part of the pain was a stabbing pain that felt like an electric shock going down my right leg. This all pretty much disappeared after about the one week time frame – just some stiffness hung around (this I figured just to keep me humble).

ONE WEEK POST OPERATIVE

One week later I am pretty much back too normal – I still have a feeling of stiffness in my hip joint area. I wonder who the patient is, where do they live and most of all I wonder how is he/she doing? You have to put this all in perspective and say what I am going through is nothing to what “my” patient must be going through. I am back to work eight days post operative and have only taken the extra time as I have an excellent employer.

THREE WEEKS POST OPERATIVE

I am back to work – I find that my energy level dwindles off during the mid afternoon but with each day post operative I find myself getting completely back to normal. Matter of fact I would if asked (the Red Cross removes my name from the active list for a period of one year) give bone marrow again without any hesitation at all.

I put this diary together and finally after 22 days post operative I feel completely normal. I’ve posted this on the Internet not for my glory but to encourage those of you who have not yet signed up on the national registry. Contact your local Red Cross for more information.

January 1995

I just found out in a letter that I received from the parents of my bone marrow recipient that “my patient” is a 6 year old girl and doing well (at 100+ days post operative). This is the highlight of my year and I look forward to the day when I might get to meet her. At this time I have written a letter to “my patient’s family” and “my patient”. I hope all is well for her and her family ?

April 1995

Today I contacted the Red Cross here in Ottawa for an update on the little girl and received very sad news. Apparently she relapsed back into active Cancer (two months ago). As per the contacts at the Red Cross she is undergoing more chemo sessions. They are unable to give me a current up to date status on the little girls condition.

This news was very hard for me to comprehend. My feelings are that of confusion, anger, followed by sadness and a sincere feeling to reach out to that family (wherever they might be) and help them in any way possible.

My prayer is that God will reach down with His loving arms and wrap this family in a protective layer of love and understanding.

July 1995

Today I was contacted by the Red Cross and they told limited information. The little girl is at home in “stable” condition – no other information was provided. I wonder how she is doing, what part of North America she lives in and what plan of action her doctors are planning to take. (These and about 10,000 other questions).

September 8th, 1995

One year post operative and I finally get my name placed on the active bone marrow registry. My patient is attending school and and apparently doing well considering she has relapsed. She is undergoing conventional methods of cancer treatment at this time.

Since this was my one year anniversary I gave the Red Cross permission to release my name and address to my patient as well as place my name back on the unrelated bone marrow registry “active list.”

November 03, 1995

Received a call from the bone marrow co-ordinator in Ottawa saying that they had heard from the Vancouver, Canada co-ordination center. I was given the name and address of my patient. She is now seven years old and lives in Texas, U.S.A.

When I was given her name and address it all of a sudden hit me that this to me was no longer an anonymous little girl but someone’s precious gem. I would love to meet this little person and her family some day. Maybe they would like to visit Canada’s capital and enjoy the goodness that God has given us all. Maybe some day…

January 09, 1996

Today I received a wonderful letter – actually it was two in one. One was a hand written letter from “my patient”, the other was from her Mom. The nicest part was a photo of her – what an angel !

January 12, 1996

I got up enough courage to call her home telephone. You know it’s strange, for the past year I constantly thought about the moment when I could get in touch with her and her family and when the actual moment arrived I was scared. Did they want to hear from me ? Was I intruding upon them ? The phone rang once, twice then……

An answering machine – RATS ! ! !

So I left a short greeting along with my name and telephone number.

This happened on Saturday morning.

January 17, 1996

I did not hear back from the family and I have two days to decide on whether to make a trip to Texas for a visit or stay put here (with lots of SNOW-SNOW-SNOW and COLD-COLD-COLD). You see right now there is a big seat sale on the Airlines (Canadian Airlines and Americian Airlines) but I have to buy the tickets before January 19 to get in on the sale. I called the family at about 6:15 p.m. today and her Mom answered the phone. To say the least my tongue was tied and I hardly knew what to say. I spoke with her Mom and Dad and boy do they have a southern drawl – real neat!

January 19, 1996

Well today I arranged a flight for a family of five (Myself, my wife and our three young children) – what an adventure – what a holiday. Everyone in my family is looking forward to it – especially the children who have never been out of Canada must less out of our Province. The idea of being on a plane is something they have never experienced. We fly from Ottawa to Toronto then Toronto to Dallas on the 19th of February. We have friends in Plano, Texas and although we have not firmed up plans yet we already have friends there and our “new” friends. Part of the new family is now “Blood related” as she has my bone marrow. Neat eh ! The only thing that is hurting us about going to the U.S.A. is the value of the Canadian dollar – now only worth about .60 cents or in other words the U.S. dollar is worth $1.40 in Canada. Oh well – it will be worth it all regardless of cost.

February 06, 1996

Called to my bone marrow family in Dallas to let them know what day and time we would be flying down. What came next cannot be described as nothing less than tragic. The little girl age 7 passed away on February 1st. I felt the loss as if it were one of my own children. I spoke with her Mom and Dad and they still expressed an interest to meet us – the feeling was mutual. They will be meeting us at the airport and that I’m sure will be a difficult time for both families.

Mid February 1996

We arrived in Dallas after a long hard flight from Ottawa, Canada.

When we left it was near minus 30 – when we arrived in Dallas it was 95 degrees. We spent several special times together over those10 days. We also spent many days by ourselves and put over 1200 miles on the rental car we were using. It was really hot – it turned out that the day we arrived it was the start of a major heat wave. Each day was 98 degrees or hotter (the hottest got up to 103 degrees). The last day we stayed dropped to the normal low of near 32 degrees. What a change! The flight back home was very, very rough and long. A lot of people were sick because of the air turbulence. We flew Dallas to Toronto and Toronto to Ottawa. After arriving home at 11:00 p.m. Ottawa time

I noticed that we were missing one bag – the bag that held all our souvenirs and the kids special things that they picked up while at a rodeo. I called the American airline we flew and they said “oh that’s too bad, I then guess it’s gone”. I then called the Canadian airline and they said they would do their best. Two hours later I got a call saying my bag turned up on another flight from Dallas into Toronto and that they would bring it out that same evening (in a driving snow storm). Talk about great customer service!

March 10, 1999

I’ve received several hundreds of emails and personal letters from kind folks from all over the world. my contact with the family has been once in the past two years. I would like to have more but if this were meant to be I again say that don’t lift up Brian Beattie but this little girl’s family in your daily thoughts and prayers.

I would like to thank those who helped me through this interesting procedure. The people at the Red Cross in Ottawa, Ontario Canada. The nurses, surgeons and staff at the Ottawa General Hospital. My wonderful wife and children and last but not least Jesus Christ to whom I and my family have given our lives to.

Sign up today ! You never know, you just may end helping save someone’s life ! Would I do it again – you betcha, in an instant.

Brian E. Beattie
Kanata, Ontario – Canada
K2L-2Z6
Email: brian-beattie@sympatico.ca

Not to be altered in any shape or form without the written permission from the author, Brian E. Beattie

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


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!

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

 

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

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

mingpao-sat-supplement-dec062008-001

mingpao-sat-supplement-dec062008-0021

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
stem-cell-awareness-day-dec-7-2008stem-cell-awareness-day-dec-7-2008b

Sing Tao Newspaper 譚家宜赴美將接受新療法.與胞弟進行骨髓移植

img200811290454540

■王裕佳醫生(左起)、譚家宜、劉慕平為家宜終於找到了希望而慶賀。本報記者攝

http://www.singtao.ca/tor/2008-11-29/1227952497d1461417.html

譚家宜赴美將接受新療法.與胞弟進行骨髓移植 配對率50% 醫院成功率達85%

[2008-11-29]
本報記者

多倫多華裔血癌患者譚家宜(Carolyn Kar Yee, Tam)的治療出現轉機,美國一間醫院進行一種骨髓移植的最新技術—Haplo-Transplant(單倍體-移植),使家宜可以和其親弟弟之間進行骨髓移植,雖然雙方的配對率只有50%,但美國這間醫院的成功率卻達到85%。家宜和母親昨日露出了久違的笑容,她們將即日赴美,相信等待家宜的將是一個健康的未來。
一直幫助譚家的王裕佳醫生解釋說,家宜之前一直希望找到100%配對的骨髓,所以在全球範圍的陌生人當中尋找,因為愈是配對成功率就愈高,但大半年的尋找沒有任何結果。譚家也曾考慮過讓家宜的弟弟提供骨髓,但兩者的配對程度只有50%,「加拿大醫院大都採用傳統的骨髓配對方式,在這種情況下,親屬之間如果配對率為50%,手術的成功率就很低,我估計不到四成。」王裕佳表示,正因為此,譚家人之前一直沒有讓家宜的親弟弟提供捐贈,因為覺得手術太過風險。
王裕佳醫生表示,但是上個月事情突然出現了轉機,家宜在多倫多瑪嘉烈公主醫院(Princess Margaret Hospital)的主治醫生向她們提供了一個新情況,位於美國馬里蘭州Baltimore市的Johns Hopkins Hospital醫院,近年採用了一項新的骨髓移植技術—Haplo-Transplant,主要是針對50%配對率的親屬骨髓捐贈者,手術效果顯著,去年該醫院共做了68例該手術,其中66例都存活下來。
絕望中看到希望
家宜的母親劉慕平表示,這個新的技術讓她們全家在絕望中看到了希望,因此決定立即動身前往美國,她們今日就將開車去美國,家宜的手術日期定在12月19日,在那之前,弟弟將從香港前來為姐姐提供骨髓。「她們姐弟感情很好,弟弟幾次從香港飛來,為姐姐的捐贈呼籲。」

她表示,因為Haplo-Transplant是世界上最先進的技術,因此手術費高達50萬美元,但非常幸運的是,安省醫療保險(OHIP)願意負擔所有的手術費。劉慕平對此表示非常幸運,她說,「家宜大概是第一個送到加國以外的地方進行骨髓移植手術的人,因為以前沒有類似的例子,而該手術又還在試驗階段,因此OHIP起初不願意承擔這筆費用,多虧了家宜的主治醫生一次又一次的與OHIP方面交涉,最終獲得了成功。」
劉慕平表示,除了手術費外,她們也得承擔藥品和住房飲食的費用,估計也要花費3至4萬元。因為這個手術不用住院,所以她們打算在外租一間房子,大概會在美國那家醫院呆3至4個月,然後會回溫哥華定居,因為那裡親友比較多。

胞弟救血癌姊 譚家宜赴美做幹細胞移植

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左起﹕王裕佳醫生﹑譚家宜和其母親劉慕平合照。(孔偉民攝)

http://www.mingpaotor.com/htm/News/20081129/tbc1.htm

【明報專訊】早前向加國華社和不同族裔呼籲捐出幹細胞 樣本﹐盼醫治血癌的多倫多華裔女子譚家宜﹐現獲得胞弟譚家強捐出幹細胞移植,並有50%合適機會﹐定於今日啟程前往美國馬利蘭州的Johns Hopkings Hospital進行Stem Cell Haplo Transplant幹細胞移植手術。

譚家宜本人和她母親﹐及長 期協助譚家宜尋找合適幹細胞的王裕佳醫生﹐3人均對今次手術成功深具信心。王裕佳昨日聯同譚家宜﹑其母親劉慕平會見傳媒。譚家宜表示經為她治療血癌的瑪嘉 烈醫院醫生建議﹐前往美國以進行Stem Cell Haplo Transplant幹細胞移植手術盛名的Johns Hopkings Hospital進行上述手術﹐她說捐出幹細胞給她的是在香港的胞弟﹐他會於稍後前往當地醫院與她會合﹐她會在當地停留約4個月。

譚家宜指是次手術費用獲得「小麗莎基金」資助和安省OHIP承包費用﹐但其他費用包括食住交通費及醫院外以藥單購買的藥物﹐則需自行支付。

她說手術後會返回多倫多瑪嘉烈醫院繼續由專科醫生跟進病情﹐而她則會分別在半年和一年後再到Johns Hopkings Hospital覆診。她特別感謝王裕佳醫生過去多月對她病情的關懷﹐和社區人士對她的支持。

王 裕佳表示﹐Stem Cell Haplo Transplant幹細胞移植手術是可醫治血癌﹐但進行此種手術條件是捐出幹細胞人士必須是進行手術者至親﹐他指過去多年在Johns Hopkings Hospital進行Stem Cell Haplo Transplant幹細胞移樹手術﹐成功率高達85%﹐加上譚家宜年青相信康復會更快﹐故此他們對是次手術十分具信心。

他說雖然加國魁省有醫院亦可進行上述手術﹐但輪候時間極長﹐而譚家宜現在的健康狀態是最佳時候進行手術﹐加上又獲悉其胞弟捐出的幹細胞有逾50%合適機會﹐因此譚家宜到美國進行手術是合適時候。

譚家宜母親劉慕平感謝各界人士尤其是華社﹐過去長時間協助女兒尋找合適移植幹細胞﹐她呼籲華人繼續捐獻幹細胞樣本﹐好讓一些需要幹細胞移植的血癌病患者﹐獲得合適幹細胞而可重獲新生。

市民欲進一步了解有關血癌患者譚家宜資料﹐可瀏覽網頁www.savecaroly.com。

醫生籲伸援手 「捐骨髓非常安全」

(星島)11月29日 星期六 05:30                                                                  

(綜合報道)

(星島日報    報道)香港專業教育學院    前講師吳志韜因早前移植的骨髓纖維化,而急需再次移植骨髓。香港大學    血液及腫瘤科講座教授梁憲孫醫生指,香港每年亦約有二百名跟吳志韜一樣患有血癌    的病人需進行骨髓移植,但當中卻有五十至七十人未能找到合適的骨髓,甚至因等不及進行手術而撒手塵寰。梁憲孫強調捐骨髓非常安全,呼籲港人伸出援手。

  向內地台灣    找合適骨髓

  香港骨髓捐贈基金資料庫於一九九一年成立,梁憲孫指,骨髓庫現約有五至六萬名捐贈者資料,他指,現時有少數捐贈者的骨髓初步與吳志韜脗合,但仍需多個步驟才能確定是否適合移植,他們亦會到內地及台灣的骨髓庫,為吳志韜尋找合適的骨髓。

  每年約一千血癌新症

  梁憲孫透露,香港每年約有一千名血癌新症,當中約二百人需進行骨髓移植。不過,他透露每年只有一百三十至一百五十人能進行手術,「有的未找到骨髓,有的病情惡化得太快,等不及手術已過世。」

  他指,雖然已就捐贈骨髓進行了十多年宣傳教育,但仍有不少人不願意捐骨髓。

  他強調捐骨髓非常安全,市民可到紅十字會    輸血服務中心登記,進行抽血檢驗。記者 李雪麗

譚家宜赴美手術

todaydailynews

Update: It’s time for Plan B

Before I give you my update, I want to send our love to the family and friends of Emru Townsend and Hector Arenas.  These guys were amazing individuals and fought an incredible fight and they will forever be in my heart.

I want to congratulate Graham Barnell and his family on returning home to Melbourne after months in Seattle for a double cord blood transplant.  Graham and his wife, Samantha, are paying for the treatment ($500,000+ USD) out of their own pockets and I appeal to all of you to pleeeeease help support this family’s brave journey to save Graham’s life by donating towards their medical fund.

I want to cheer on Michelle Maykin and her husband Van, who are away from home for a double-cord transplant in Seattle’s Fred Hutchison. Michelle’s incredible strength and positive attitude have been always been a source of inspiration and reminder for me to stay strong each time I feel like I couldn’t handle this anymore.  I wish for nothing but all of Michelle’s “I want’s” to come true as soon as possible!

Also a cheer to Dr.Guha and his family who are also away from home for an unrelated match transplant in California’s City of Hope.

As for me….

Me, my Mom and my childhood friend, Susana, from Vancouver just spent all last week in Baltimore, Maryland to meet with the transplant team at Johns Hopkins Hospital.

One appointment with one doctor, ended up being multiple appointments throughout the week with 2 different doctors, various coordinators, blood tests for me and Mom and having to find an apartment for when we go back Dec 1 to stay.

Aside from information overload, having to find an apartment within a few days, and notwithstanding the circumstance…..I am really glad I got to take this road trip with Susana and Mom – we also took a side trip to Washington DC.

Me and my whole family will be going back to Baltimore on Dec 1. My brother Patrick will be traveling back and forth between HK and Baltimore during the whole month of Dec, and my Mom and I will be staying there for 3 months.

The goal now is to have a Non-myeloablative Haplo-transplant before the Holidays – this is a transplant of Patrick’s stem cells since we did not find an unrelated donor match and Patrick is a confirmed 50% match.

Johns Hopkins has been doing this since 2003, and the chances of developing severe Graft-vs-Host-Disease is around 6% and the survival rate is 85%, although with my age I was told the odds are even better.

The flip side of this protocol is that the relapse rate is higher than traditional Myeloablative haplo-transplant.  However, they say as long as I don’t completely clash with Pat’s cells, we can do a Donor Lymphocyte Infusion (DLI) which is sort of a mini transplant if I relapsed and they have proven results that this subsequent infusion will get the job done

Although we didn’t end up finding a match for me, I still feel really lucky and blessed to have received the amount of support I did, and to have made a lot of new friends along the way.  I hope what we accomplished this past Summer is only the beginning, that you will join me and many others in continuing to spread the word about the dire need for new marrow donors within all ethnic communities, and I hope all our efforts will become that much needed silver lining for other leukemia patients in the future.

TOGETHER, WE CAN DO IT.

Click here for your local Registry’s link.

I will have internet access at the apartment in Baltimore, so do feel free to drop me a line via email, Facebook or this website, and I will post updates whenever possible.

Thank you all, and don’t worry, because I’m confident I will be home before you know it!

Canada’s OneMatch to offer services in Chinese

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November 3, 2008

In an effort to recruit even more volunteer stem cell donors from varied ethnic communities, Canada’s OneMatch Stem Cell and Marrow Network is pleased to announce it is beginning to offer services in languages beyond English and French. As a first step, services in Chinese will be made possible thanks to partnerships with the Elizabeth Lue Bone Marrow Foundation of Toronto, and AILIA (Association de l’industrie de la langue/Language Industry Association) … more.

為了呼籲更多不同族裔的志願人士加入捐贈幹細胞行列,加拿大的 OneMatch 幹細胞及骨髓網絡宣佈,開始以英語和法語以外的語言提供服務。我們衷心感謝在合作夥伴多倫多小麗莎骨髓基金會和語言產業協會(AILIA /Association de l’industrie de la langue/Language Industry Association)的大力協助下, 率先使用中文提供服務 … more.

Nov 3 2008 is Canada’s National Stem Cell and Marrow Awareness Week

Of the 237,000 Canadians currently registered on the OneMatch Network, 83% are Caucasian and 17% are from Canada’s many diverse ethnic groups.

At any given time, OneMatch is searching for stem cell matches for about 600 Canadians. 40% of which are non-Caucasian.

Fewer than 30% of patients will find a compatible donor from a family member. The remaining 70% rely on the generosity of an unrelated donor.

Most patients are more likely to find a donor in their own ethnic group.

Upon receipt of your registration online (at www.onematch.ca) or by mail (of completed forms downloaded from www.onematch.ca), a representative from OneMatch will be in touch by phone within 2 business days.

Samples are no longer collected through blood tests but with a buccal (cheek) swab kit mailed directly to your home with clear instructions and a return envelope.

Donor eligibility is between 17 to 50 years old

REGISTER TODAY.  SPREAD THE WORD.  SAVE A LIFE.

This is why we need your help. Please watch.