Message from Yvan

Hong Kong, the 27^th of May 2013

Yvan, a young French Caucasian, an athletic father of two young children and resident in Hong Kong for 20 years, was diagnosed with Acute Leukaemia early April 2012. His only hope for survival was an urgent successful bone marrow transplant. The chances to find a match were slim and the Hong Kong registry for Bone Marrow has only 60 Non-Asians registered on average every year. His friends’ drove a campaign that brought over 2,050 persons to the Hong Kong Red Cross to get tested for a match in June. The results were incredible and similar drives spurred in Tokyo, Macau, Shenzhen, Beijing, Shanghai, Chengdu and Singapore.

Here is Yvan’s message.

“Dear Friends,

I wanted to reach out to all of you that are somehow connected to me and my family whether I personally know you or not. I can’t ever remember a year passing by so quickly. It is a year since the onset of my acute Leukaemia and seven months since the bone marrow transplant which seems to be holding up. I am blessed that an anonymous donor was a match for me and I can still be here today with my wife and children by my side.

I can’t thank all of you enough for paying attention, spreading the word, offering to donate, getting blood tested, and sharing words of encouragement; and other things I will never truly be aware of. The human chain of caring people was a formidable movement that enables me to write to you now. 

My thoughts go to other patients, some my neighbours, who have or haven’t been so fortunate and few that didn’t make it that far. What you did helped them as it will help future patients.

I am learning to accept how long, painful and unsteady the recovery is, yet common in post-transplant cases, with constant setbacks and a tiresome inability to predict anything beyond a day.

But here I am, alive and grateful, which is more that I could have hoped for in the most difficult times. And that’s pretty good already.

So to you, for your humanity, friendship and support,

with my profound gratefulness,

Yvan”

Campaign site http://bonemarrowhk.blogspot.hk  or www.facebook.com/#!/events/456841777678633/

Hong Kong, le 20 mai 2013

Début avril 2012, Yvan, jeune français sportif et père de deux jeunes enfants, résidant à Hong Kong depuis 20 ans, avait été diagnostiqué avec une leucémie aigüe. Son seul espoir de survie impliquait une greffe de moelle osseuse urgente. Les chances de trouver un donateur compatible sont infimes et le registre de Hong Kong n’avait en moyenne que 60 non-asiatiques enregistrés annuellement. Ses amis avaient mené une campagne de don qui a conduit 2.050 personnes à se présenter à la Croix-Rouge de Hong Kong pour se faire tester en juin. Des résultats incroyables sans compter un élan similaire dans les villes de Tokyo, Macao, Shenzhen, Beijing, Shanghai, Chengdu et Singapour.

Voici aujourd’hui le message d’Yvan.

« Chers amis,

Je voulais envoyer un message à tous ceux avec qui moi et ma famille sommes en quelque sorte liés, que je vous connaisse personnellement ou pas. Je ne me souviens pas d’une année qui soit passée si vite. Ma leucémie aiguë a commencé il y a un peu plus d’un an et nous sommes sept mois après la greffe d’une moelle osseuse qui semble se mettre en place.

Un donateur anonyme ait été compatible grâce à qui je peux encore être aujourd'hui ici, avec ma femme et mes enfants à mes côtés.

Je tenais à vous remercier pour, avoir proposé de faire un don ou une analyse de sang, avoir rassemblé et informé autour de vous, partagé des mots d'encouragement; et plus encore dont je ne suis pas vraiment conscient. Cette chaîne humaine de gens généreux a été un mouvement formidable qui me permet aujourd'hui de vous écrire.

Mes pensées vont à d'autres patients, certains mes voisins, qui ont ou n'ont pas eu cette chance d’avoir trouvé un donneur compatible et ne sont plus. Ce que vous avez fait les a aidé et aidera les futurs patients.

Je commence à peine à accepter le chemin instable d’une guérison longue et douloureuse mais typique des cas post-transplantation, avec des reculs constants et une incapacité accablante de ne pas pouvoir prédire quoi que ce soit au-delà d'une journée.

Mais je suis là, vivant et reconnaissant, ce qui est plus que je ne pouvais espérer dans les moments les plus difficiles. Et c'est déjà bien.

Avec ma profonde gratitude pour vous, votre humanité, votre amitié et vos soutiens

Yvan »

Campagne de don http://bonemarrowhk.blogspot.hk  or www.facebook.com/#!/events/456841777678633/

Happy New Year of the Snake, from the Man himself...

Happy New Year of the Snake, from the Man himself...

Dear Friends,

For the past 9 months, I have been the recepient of your continued support and encouragements. With the New Year, I'm happy to send you too my best wishes for 2013. Health, joy and peace of mind to all of you whatever may come during this time!

This is quite late for New Year wishes but as French say, it's still January so it's alright. Also, being in HK gives us this calendary overlap which is a gift to procrastinators like me. The Year of the Snake is just moving in, so I'm still early...

Apologies for having been rather quiet lately. Been busy trying to get rid of a virus. Spending over a month in hospital over Xmas and New Year holidays being knocked out by drugs was not the kind of recovery I was expecting so I was pretty grumpy too. But the beast seems like it's being tamed and due to some mild Graft vs Host disease, I am back on steroids so I'm feeling much better! Even felt like a restless hamster the first day! It was 4:00 am the next day when I finally exhausted the wheel and went to sleep. So, I'm really hoping to go home soon, continue my recovery and see more of you.

All the best for 2013 and the Year of the Snake. All will be well.

YC

One door closes, a window opens

Latest news are somehow mitigated... The BM transplant was successful, but it woke up a normally benign and dormant virus, so additional treatment are still needed.

Waiting for YC's immune response to strike back, we would like to share with you that wonderful article written by his wife:

NEW BEGINNINGS

Was it T.S. Eliot who said “What we call the beginning is often the end...the end is where we start from”?
As I look towards the New Year, this notion of closing a door to open another, has begun to resonate with me more profoundly than it has ever had.
In mid April 2012, my husband was diagnosed with Acute Leukemia and given only 4 months to live unless a bone marrow donor was found. There was no match in his family, no match amongst our friends, no match in the Hong Kong Red Cross.
7-months, 7 rounds of chemotherapy, one overseas donor, and one transplant later, he is finally home, though still fighting off an infection caused by his body’s rejection of the bone marrow. It is normal, we are told. So we remain hopeful.
But it has changed everything.
And it changed everything because I learned so much.

I learned that my children are strong.
Last weekend, as I hung out with my kids, I am struck by how they have dealt with their father’s illness and all its implications. Their initial fear was heartbreaking, but through the months, I see their resilience kicking in. At only 10 and 6 years old, they have managed to find the patience to deal with absentee parents; and an understanding that they have a role to play in keeping the family going.
That’s a lot to ask of kids. But I feel proud, and relieved. Proud that my kids are strong, that maybe how we raised them contributed to this strength; and relieved that my parenting skills couldn’t have been all bad if they turned out they way they have!

I learned that I have good friends.
How many people have the opportunity to “test” the depths of their friendships? While I would never wish this on anyone, I count myself lucky to have witnessed the lengths they will go to help us. Through their willingness to tap their personal and professional contacts, my husband was under the care of a top oncologist in Hong Kong; we had access to the top cancer researcher in the US for advice and consultation; we even received a personal call from the General Manager leading pharmaceutical company informing us of new drugs.
Their tireless campaign to encourage Caucasian donors was so successful that the HK Red Cross received more registered of Caucasian donors during the 2-month campaign period that they had over the last 10 years.
People who did not know us were willing to give a part of their body, undergo a surgery, to help. Our bone marrow match finally came from a donor in Germany, named only as “Donor 2191453”. Watching his/her bone marrow drip into my husband’s body, I felt an overwhelming surge of gratitude and humility.

I also learned that whatever happens, life will carry on.
I had always been a positive person. But life did get to me, and I did focus too much on the unimportant minutiae. At the risk of sounding like a Hallmark greeting card, I approach the New Year with a greater appreciation for life’s simple pleasures.

I walked passed a cafe the other day - it was the same cafe I passed almost every day on the way to work. I had never gone in, thinking it silly to pay for expensive coffee. But on this day, there was a sign on its window and it said, “Life’s too short to drink shitty coffee.”
How true.
And the coffee was great! 

Wife in transplant plea for cancer-hit guitarist

The fight is not over!
Let everyone around you know about the bone marrow registration, including... your Maid!
Well, yes, Philippinos have Leukemia too, but not enough registered donors, so let your maid know, and it may help to save Mr. Perez.

The following article was published in "The Standard"

Wife in transplant plea for cancer-hit guitarist
Mary Ann Benitez 
Friday, October 19, 2012

A Filipino musician desperately needs a bone marrow donor after a third relapse of late-stage cancer, with his British wife urging the Filipino community to help save him.
Rocky Perez, a bass guitarist who has lived in Hong Kong for 10 years, is receiving chemotherapy at Queen Mary Hospital for Stage 4 non-Hodgkin lymphoma that was diagnosed in June last year.
Perez and his wife, Debra Jones, were told a bone marrow transplant is essential for his survival, but there is no match in the Hong Kong Bone Marrow Donor Registry and other such registries worldwide.
Jones, head music teacher at South Island School, said last night: "He's feeling very sick at the moment because the chemotherapy they are using on him is very strong. It has to be as it is his third relapse. Right now, he's feeling grim."
She added: "The only way to stop these relapses is to get the bone marrow transplant.
"But we've searched all the international registries and there is absolutely nobody out there who is a match for him."
There is no such registry in the Philippines and even in countries such as the United States with a large Filipino population just a small percentage of them are on the registry.
"We've drawn a blank there as well," said Jones, adding her husband only has half-siblings and are not a good match.
Jones, a Royal Welsh College of Music and Drama graduate who used to work in London as a music teacher, and Perez, 35, met in Hong Kong and married eight years ago.
They have three boys together, aged seven, five and two.
For the past decade, Perez has worked full-time at Spicy Fingers in Wan Chai and Sticky Fingers in Tsim Sha Tsui.
Jones and volunteers will be distributing flyers on Sunday as part of their donor campaign.
It is hoped the campaign will add at least 5,000 Filipinos to the registry "in the hope of finding a match for Rocky but those names will remain on file and stand to benefit other Filipinos with similar diseases worldwide."

Kuddos for Germany!

While the Oktoberfest is at its peak, Germany deserves special Kuddos for something else that their (delicious) beer; Germany is the undisputed Nº1 in Bone Marrow Registered Donors.
With 5.62% of their population aware and willing, this is from far the most generous country in that matter, far ahead of Nº2 USA (2.22%) and UK (1.3%).

And today, this is thanks to a German anonymous donor that Y. is given a second chance.

Gazillion of Danke Schön!

D-Day: This is IT!

Our sincere apologies to those who came to this blog to get information, and didn't find any update.
It has been a long wait with many ups and downs, and the constant changes made it difficult to publish anything. It seemed that everyday was made to contradict the previous one.
But now, this is IT, from the man, Mr Y himself!!!

"Dear All,
After yet another little planning twist, the bone marrow has arrived in HK a bit earlier than expected and the transplant is now scheduled for this evening. I am not sure whether this is going to be the end, the beginning of the end of another stage in a longer recovery but I do know however that this is where I want to be. I am happy to proceed and confident in the outcome.
During this process, I will have a deep thought for all of you who have supported me during these long months. I feel previliged and immensely grateful.
I look forward to see you all very soon.
Love,
Y"


Wow...

Delay No More!

Ouch! The HK Bone Marrow Registry
lanyard is no sunscreen, Dude...

If you wonder what that can possibly be...


That is the sunburned neck of one of the great team of volunteers who have been roaming the beaches where Dragon Boat races took place in Hong Kong.
With blazing sun alternating with pouring rain, nothing could alter the determination of those generous individuals.

Very noticeably, our call for action has largely grown outside of the French community: People from all nationalities have come to participate, or are showing us their brand new donor cards with a heart-warming grin.

We are now well on the way to pass the 2,000 mark, but only a week to go for this campaign, and that's 5,000 that are needed, so Delay No More!

Do Jeh, Xie Xie, Thank You, Merci Beaucoup!

1,500!

The Hong Kong Red Cross has officially published that by the end of yesterday this campaign had reached 1,491 registered donors, out of which 1306 Non-Asians.
So, by the end of today we should have reached over 1,500 registered donors for Hong Kong only.
This is startling... Thanks to all who care!

Cumulative number of registered donors since Friday June 1, 2012

Now, how far can this go?
Should we rest on our laurels?
Well, one of Yvan's repeated plea was that this campaign should not be just for him, but for all the people that are waiting in anguish for a match.
So, for those who have already registered and joined our Facebook event, please click on FB's "invite friends" button, then you have to manually click each check box. Very tedious, but that's the only way to spread the word quickly before the cut-off date. In advance, thank you for your patience.

A call in Breton for the Global Village

Thanks to social networks we have been able to spread the word at light speed not only in Hong Kong, but all around the world: China, Japan, Australia, France, USA,...

On the other hand, Yvan's family is originated from west of France, so they have launched a call for registration... in Breton, the Celtic language spoken in Brittany:

Mignoned, Breizhiz eus ar bed a-bezh,

Yvan a zo ur Breizhad eus Lambal, 42 bloaz eo, e 2 vugel a zo 6 ha 10 vloaz.

Dibaoe miz Ebrel emañ en ospital e Hong Kong paket gant ur c'hleñved grevus tre ar leukemiezh foeltrus. Ar spi nemetañ da saveteiñ anezhañ a zo un imboud meleg askorn.

Dav eo kavout un den a c'hell e roadenn bezañ degemeret gant Yvan, ant deoc'h o deus klasket er familh dija, met n'o deus ket kavet. Setu perak e lakomp hor spi e familh ar Vretoned.

Dav eo deoc'h mont e darempred gant an ESF (établissement français du sang) tostañ eus ar gêr ha vo displeget deoc'h penaos ober.

Titouroù amañ da-heul.

Trugarez vras deoc'h evit ho kenskoazell.

Familh Yvan.

That's so very cool!

Now, is an interesting paradox: as bone marrow is concerned, there are greater chances of a match in a close community, so a donor could be found next door to his birthplace.

In the meantime, the millions of years of human migrations and genes mutations have created an astonishing scattered puzzle, and "potential" matches have been spotted, in Germany, US, Brazil... (to be confirmed!)

So, at micro and macro levels, let's echo this call for action in the Global Village!

Yvan, I dare you to run with those sneakers ;))

SCMP June 17, 2012 / Page 5 "Hong Kong" section

Registration Form

For those wandering how complicated the registration can be, here it is for your information.
Couldn't be anything easier, right?
(Click on the thumbnails for full size view)

An incredible multi-cultural push

Definitely we will no longer be able to keep track of everything that is happening...
In a matter of days, the word has spread. Initially confined mostly within the French circle, the other communities are now responding at incredible speed.
Let it be said that Messieurs Les Canadiens were the first to relay our action, but since the Austrian, German, Swiss, Italian, Australian, Dutch, Japanese, Spanish, British, have joined the band wagon.
But also many schools, religious groups, companies, chamber of commerce, clubs, sports clubs (triathlon, rugby, football, running, paddling, tennis, cricket...), magazines, shops, restaurants, are now jumping in, eager to beat the odds.
We are loosing count, so for all those who are not listed here, please accept our apologies.
Gazillions Thanks to ALL!

World Blood Donor Day

Today in fact is the World Blood Donor Day which themes “ Every Blood Donor is a Hero!”It is important to note that, although the Blood and Bone Marrow programs are partially funded by the HK Hospital Authority, a seizable part of the cost is on the Red Cross' shoulders.
So, although generally shy to ask, they welcome every financial donation too:
https://donation2.redcross.org.hk/onlinedonation/user_donation.asp

SCMP Health Post

5% of 1.21%...

SCMP Article

The South China Morning Post published today this article:

Call for donor registration @ HK Stadium

1,500 leaflets distributed at HK Stadium

A ring of volunteers friends spent their day distributing leaflets and rose awareness through one to one contact at the entrance of the HK Stadium for the Chartis Cup Rugby event.Under heavy thunderstorm then a grueling sun, nothing could alter their determination...
Thanks to all!

Call for donor registration @ UFE

During the UFE (Union des Français de l'Etranger) annual dinner, an official announcement was made by  the Deputy Consul General Mrs. Agnès HUMRUZIAN.
The FAS (Fonds Associatif de Solidarité" also committed to give its support to this campaign.

First 200 Registrations!

This morning we have been notified by the Hong Kong Bone Marrow Registry that 200 non-Asian people have registered since the end of May.
Given that their regularly average is usually no more than 5 per month, that represent 3,5 years of registration in less than 10 days...
That's promising and we deeply thank those first 200.
However, compared to HK's expatriate population this is ridiculously small!
To give a real chance to any Caucasian leukemia patient that's several thousands that we need to reach.
Together, let's do it!

Call for donor registration @ InterNations

Under the impulse of some of its very active members, InterNations has echoed our pledge during their last meeting Friday, 8th June 2012 @ Duetto.
With a steadily expanding community of long-stay expatriates in Hong Kong, the bone marrow donor registry is simply not growing accordingly, with an average of only 5 new non-Asian donor every month...
The InterNations attendees were very receptive to the information, and many have promised to register without further delay.