This is a guest post from Joon’s father, Patrick.
Just a few weeks ago Joon was diagnosed with acute leukemia, and since then has been in hospital undergoing treatment. Her recovery depends on the identification of a donor whose blood stem cells are compatible.
Joon Gremillet-Nguyen is a young French woman of Vietnamese descent, currently a university student in Geneva, Switzerland. She was adopted in Vietnam when she was few weeks old. She turned 18 in July.
In May she was diagnosed with acute lymphoblastic leukemia –Philadelphia Chromosome positive. At the end of her chemotherapy treatment, towards the end of September, she will have to undergo a stem cell transplant.
Since Joon is an adopted Vietnamese child, there are no compatible donors from within her adoptive family. 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.
And the second problem for us is that Viet Nam is not a participating country of the Bone Marrow Donors Worldwide, which means that the Center in Switzerland coordinating the search cannot tap into the profiles of donors in Viet Nam. Therefore, it is more likely to find a match for Joon among Vietnamese living abroad. For this reason, we are most grateful to organisations like Cheekswab for relaying this call for help.
More info about Joon can be found on the blog: http://teamjoon.net
Nina Polvanich Louie, a young wife and mother of Thai and Chinese descent from California, is in desperate need of a bone marrow donor following her diagnosis of Stage 4 Lymphoma in September of last year. Her time is running short as doctors have determined that the cancer has spread to her brain and she must find a bone marrow match within 5 weeks.
There’s a very strong push in California and throughout the country to find Nina a marrow match, and given the timeline it’s possible to have expedited marrow processing by labeling the kit “VINIYA” in the promo section. Friends and family are putting a call out to unregistered Asian Americans throughout the country to join the registry as soon as possible, whether online or at a local drive.
If you’re in Southern California the Nina Needs You facebook page is active with drives taking place in the LA area.
One day I hope to not have to write any more of these drive announcements. For every new person who joins that day gets one day closer.
Join the Registry for Janet Liang Now
Janet Liang is a UCLA graduate student who was diagnosed with Acute Lymphoblastic Leukemia (ALL) in 2009. I don’t know her personally, but I linked to her website in the Links and Organizations section of this site because I came across it while looking for other bone marrow initiatives. Through helpingjanet.com, Janet has used her diagnosis to reach out to and educate thousands of people about the need for minority donors. In a matter of two years her outreach has helped to register more than 6,800 bone marrow donors. It’s seriously a staggering number. To give a frame of reference, I set the goal for cheekswab at 300 donors this year. I’ve registered 82 so far.
In the last two days I’ve received two separate emails about Janet, as recent developments concerning her health have created an outpouring of support across the Internet. I was directed to this blog post that she wrote on December 26, entitled “I’m Dying. Again.”:
Last week, I was notified by my hematologist/oncologist that I’ve unfortunately relapsed and will need a bone marrow transplant. And tomorrow (December 26) I will be heading back to the hospital for a month of high-dosage chemotherapy.
I’m writing to ask you as my friends and supporters to be a part of my Helping Janet family. Now more than ever will I really need to count on you for your help. After this intense round of relapse chemotherapy, my oncologist wants to move forward with conditioning chemotherapy and a stem cell/marrow transplant, but not without a perfect match. This is crucial for my survival, and I truly appreciate your support during these difficult times.
When I read it, I freezed up immediately. I felt my heart beat faster and my face begin to flush. She had said the single word that I have completely eliminated from my vocabulary for the last 5 years, no matter the context:
Continue reading “Janet Liang and the “R” Word”