In May 2013, Joon was diagnosed with acute leukemia, and since then has been undergoing treatment in Geneva. Her recovery depends on stem cells transplantation. The page below was established at that time to help identify a compatible donor.
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Joon’s Story…
Who is Joon ?
Joon was born in 1995 in Northern Vietnam, and we first saw her beautiful smile at a maternity hospital in Haiphong when she was one month old, when she joined our family and became part of our lives. Joon grew up around the world with her traveling family; first in Laos, then in Bangkok, New York, Vienna, and most recently back in France. She is bi-lingual in French and English, and finished her secondary studies last year at the French ‘high school’ in Ferney-Voltaire near the Swiss border, where she earned her French Science baccalaureate with honors. She started her university studies in sciences and physics last September in Geneva.
Joon is full of enthusiasm for life: she is fascinated by science and quantum physics and looks forward to working as a research scientist; she expresses her creativity through drawing and projects, plays the piano, and has made many memorable meals for friends and family. Even her meals are small works of art. Joon is always working on a project: planting a garden, knitting, plastering and painting to remodel her bedroom, and even now is making beautiful origami creations for the nurses at the hospital. (to read more about Joon, click here)
What is happening to her?
In May, Joon was feeling tired and sick. The doctor didn’t find anything wrong, but ordered blood tests. The results came that very afternoon, and Joon was immediately hospitalized at the university hospital in Geneva. Her lymphoblast level was at 137 000, while patients are considered at risk starting with levels of 50 000.
Joon has acute lymphoblastic leukemia –Philadelphia Chromosome positive.
Joon immediately started chemotherapy. She is in a sterile room, but some visitors are allowed. The chemotherapy makes her quite sick: nausea and vomiting, and muscular pain in her face and body. Thankfully, she is able to tolerate a medication called Tramal that helps with these symptoms. She spends her few free hours in the afternoon watching movies or talking to visitors.
Her treatment:
- A thirty-day cycle of “light” treatment (ongoing)
- Assessment and two weeks of recovery during which she will be able to leave the hospital if her immune system allows it.
- A thirty-day cycle of “heavy” treatment.
When this second cycle finishes, she will have to undergo a stem cell transplant. Because of the genetic mutation—the Philadelphia chromosome—she has no chance of recovering without a transplant after this second round of chemotherapy. This transplant needs to take place in December.
Our challenge and our request: Finding a compatible donor
We must find a donor whose blood stem cells are compatible with Joon’s.
Since Joon is an adopted Vietnamese child, there are no compatible donors from within her adoptive family. (The probability of compatibility between random individuals is very rare: one chance in a million.) To find a compatible donor for Joon, we must find a donor whose genetic profile is as close as possible to hers.
For this reason, the best chance of finding a match is from within the same ethnic group as Joon. Unfortunately, there are very few Asian (and in particular Vietnamese) potential donors enrolled in the international stem cell donor registry, although sadly, there is a high incidence of Joon’s disease in this community.
How to help us and how to help them?
- Sign up on the national register of your country to become a potential donor, by contacting your closest donation agency (see links on the right column to find your nearest center). Procedures can vary from country to country. Your registration will help Joon if we are lucky enough that you two are compatible. You might also be helping another person of the same ethnic group who has a similar condition.
- Spread the message! Especially in Asian and Vietnamese communities. The more people who register, the better the chance to find a match for Joon. Your message might be the one that inspires the person who is a perfect match for Joon to register.
Signing up on the national register: who and how?
Who can become a donor?
Anyone and everyone can volunteer to become a donor and thus give a patient a better chance of recovery.
To become a donor, one must:
- be in good health
- be 18 or older, and younger than 55 during registration (this limit depends on the country: for example, in some countries one must be younger than 51 and in others up to 60)
- Fill out a questionnaire and take a blood test or a swab test
Wherever you are in the world, your donation can save a patient no matter where they are. Your stem cells can be rapidly transported anywhere in the world.
How to become a donor: a simple, two-stage procedure and the potential to save a life
- Preliminary stage (points 1-5): Information and registration (see the list of national registries on the side menu).
- Selection stage (points 6-9): If and only if there is a match. Today, a match is found for about one in a thousand persons registered.
There are two types of donations, stem cell transplant and bone marrow transplant, and procedures and practices vary by country.
- Provide blood stem cells through a process called ‘apheresis’: A few days prior to the procedure, the donor receives several injections to increase the production of bone marrow stem cells. The necessary cells are then extracted from the bloodstream through a cell-separating machine during a four-hour session. Only one or sometimes two sessions are necessary to retrieve sufficient cells in the bloodstream. The sessions take place in transfusion centers.
- Bone marrow sample: More rarely, samples must be retrieved surgically. Bone marrow is extracted with a syringe from the pelvic bone. The operation is done under general anesthesia and thus takes place in a hospital.
Risks associated with these procedures are minimal. Please see the sites at right for further details and statistics.
Stem cell and bone marrow donation within the international registry system follows three fundamental principles:
- anonymity between donor and recipient;
- the voluntary aspect of the procedure;
- there is no cost for the donor, and no payments from the recipient to the donor.
It works!
Blood stem cell donations helps treat and heal many blood illnesses such as leukemia. You can find inspiring testimonies and stories from both donors and recipients on sites such as Be the Match and A3M.
Thank you for your time and support for Joon and for others afflicted by leukemia and other blood sicknesses.
TEAM JOON 
Salut Joon!
On ne se connait pas mais je partage totalement ce qui t’arrive : il m’est arrivé la même chose l’année passée. J’ai été atteint d’une leucémie myelloïde aïgue et traité par 6 séances de chimio et une greffe de moelle à l’hôpital de Genève (la greffe a été effectuée en Avril 2013). Tout comme toi je suis vietnamien et j’étudie également en sciences à UniGE.
Je ne sais pas si tu as besoin d’aide, de conseils ou de quoi que ce soit, mais sache que je suis à ta disposition si tu veux parler ou si tu as de quelconques questions concernant la greffe. Je sais que les médecins t’informent bien sur ce sujet mais je pense que c’est toujours une bonne chose de pouvoir parler à quelqu’un de ton âge qui est aussi passé par là, ça te permet d’avoir une vision différente de celle des spécialistes. Je suis même prêt à venir te voir directement aux HUG si tu en as besoin (j’habite à Ferney, c’est pas loin pour moi).
En tout cas je te souhaite tout de bon pour la suite et j’espère sincèrement que tu vas trouver un donneur. Tout ma famille s’est déjà enregistrée sur la base de donnée internationale et fait de la pub aux USA pour encourager les asiatiques à s’enregistrer, donc si l’un d’entre eux est compatible avec toi tu le sauras très vite.
Bonjour,
Merci pour votre message et vos encouragements que nous avons transmis à Joon. Cordialement
Encore MOI!!!!
Seriez vous d’accord pour photographier les lieux où vous avez collé des affiches. Je serai curieuse de pouvoir découvrir de part la planète les endroits où notre appel est affiché…qu’en pensez vous?
Bonjour,
Après une inscription par internet, j’ai été convoqué dans la semaine suivante à l’EFS (établissement Français du sang) de Caen (Basse Normandie).
Petit hic, je venais d’avoir une petite infection j’ai donc du attendre d’être tout à fait remise, j’ai appris par la même occasion qu’on ne peut venir donner si l’on est sous traitement antibiotique. Ce qui était mon cas, vraiment pas de chance, je n’avais pas pris d’antibiotique depuis 25 ans! J’ai réalisé que cette précaution n’est valable que pour les donneurs de sang, non pour les donneurs de moelle mais j’avais coché les deux cases….
Bon enfin, nous avons pu convenir d’un rendez vous. Me voilà sur la route un peu inquiète sur la quantité de sang demandée…
Le médecin qui m’a reçu a été ultra pédagogue. Je suis eurasienne contrairement à ma nièce Joon qui est 100% viet. Je suis donc “une perle rare” dixit le Dr. Remarque qui m’a ravi je l’avoue…
Si je suis convoquée pour un don, cela signifiera que je suis forcement compatible, les premiers tests se faisant en labo en mélangeant les cellules donneur/receveur. Les combinaisons métis sont ultra rares, si ma clé ouvre la serrure alors cela veut dire que quelque part j’ai trouvé mon “jumeau biologique”. Ce qui me laisse rêveuse.
Je ne pourrai donner qu’à une personne d’une corpulence inférieure ou égale à mon IMC (indice de masse corporelle). Dans mon cas il faudra que mon jumeau ne se soit pas trop empiffré de glace et de MacDo étant plutôt légère.
Tout ceci m’a conduit à la Salle de don, grand espace clair pourvu d’une quinzaine de fauteuils. Ce jour là peu d’affluence 2 donneurs de sang et moi sur mon fauteuil en attente…
Une minute le temps de remplir deux tubes, de me faire un joli pansement…3 gâteaux après, je repars…en me demandant si quelque part sur cette planète j’ai un jumeau biologique et à quoi peut il bien ressembler…
A vrai dire je serai curieuse de savoir quelles réflexions cela provoque chez les autres personnes ayant fait cette démarche?
NAthalie
Hello,
I have some Vietnamese contacts in the Geneva community that may be of help to you. Could you please send me an email address so that I can provide you with their contact details? I do not wish to publish their personal details publically. Thank you very much for understanding, and all the best.
Hello. thanks for your message. I replied to you just now via email. Regards
DKMS has launched a campaign throughout its network to recruit stem cell donors for Joon. A dedicated registration page has been established on their web sites.
People living in Germany can register as potential donor through DKMS DE: http://www.dkms.de/joon
People living in the UK can register as potential donor through DKMS UK (Delete Blood Cancer UK):
http://www.deletebloodcancer.org.uk/joon
If you live in the US, a similar page is also available on the Web site of DMKS Americas (Delete Blood Cancer), established in the US to increase and diversify the donor registry.
http://www.deletebloodcancer.org/joon/
In Poland, please see: http://www.dkms.pl
Through these links, it takes only five minutes to register as a potential donor.
Hi Patrick,
I am Vietnamese and currently live in the US. I used to live in Germany for 10+ years, however. The US has placed restrictions on blood donations from people who used to live in Germany between 1980 and 1990 due to mad cow disease cases. Do you know if these restrictions also apply to bone marrow donations? How else can I check if I am a match?
Hi,
thanks for your message.
I know there might be restrictions and they vary by country. I am not aware of the specifics. Also the restrictions applying for blood donation and bone marrow donation might be different. But the best would be to contact the closest center where you live in the US, if you have not done so already. Here is the link where you will find all the centers in the US:
http://bethematch.org/Join/Join_in_Person/Donor_Centers.aspx
With best regards
Hi Bao, no you can apply, I am french living in the US, and I was able to register 2 years ago when my husband got sick!
Chúc anh Joon mọi điều tốt lành. Em sẽ đi quảng cáo câu truyện của anh trên Facebook.
Cảm ơn Joanna rất nhiều về sự quan tâm và sẵn sàng giúp đỡ Joon bằng cách chia sẻ các thông tin về em.
Bạn có thể tìm và dẫn chiếu tới tất cả các thông tin cần thiết về Joon cũng như cách để trở thành người hiến tặng tế bào gốc trên trang blog này cũng như trên trang Facebook TeamJoon (https://www.facebook.com/TeamJoon?fref=ts).
toi muon giup do JOON hien toi dang song o cong hoa sec nhung toi chua biet lam bang cach nao? de co the kiem tra va xet nghiem mau de cuu co be hay dt 00420776253446
In Czech Republic, you can contact:
Czechia-Czech BMDR [CS] / Czechia CORD [CSCB]
Institute for Clinical and Experimental Medicine (IKEM)
Videnska 1958/9
14021 Prague 4
Czech Republic
TEL: +420-2-6136-1011
TEL: +420-2-6136-2348
FAX: +420-2-6136-2370
Email: cscr-prague@ikem.cz
Website: http://www.darujzivot.cz/
Website: http:///www.czechbmd.cz
Bonjour,
je suis cambodgienne et j’ai 33 ans. Je souhaite d’être volontaire à ce don. Je serai en France entre le 22 juil à 30 sept. J’ai déjà contacté le centre de Paris, malheureusement, on m’a dit que je dois m’inscrire au liste des donneurs potentiel dans mon pays résidentiel. Donc, ca veut dire que je ne pourrai le faire qu’à partir du 02 oct 2013.
Bon courage pour la Joon et sa famille.
Malyne
Bonjour Malyne,
En effet, on ne peut pas s’inscrire en France si l’on ne réside dans ce pays – et c’est le cas pour tous les autres pays. Je ne suis pas sûre si le Cambodge a un fichier de donneurs, si c’est là où vous habitez. En tous cas, le Cambodge ne fait pas partie du registre international. Mais vous pouvez aider Joon en parlant de son histoire autour de vous et en encourageant vos amis asiatiques qui habitent dans des pays qui font partie du registre international (liens disponibles sous la page de ce blog: Agissons maintenant).
Merci pour vos mots d’encouragement à Joon.
Marjolaine
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