Rest in Peace Barry Pham :(

I just learned on Janet Liang's blog that a very young patient, just 16 months old, has passed away after a transplant failed.

Little Barry Pham was a patient that I was aware of but not completely familiar with. Janet had kept herself up to date on his condition as they both suffered from the same type of leukemia: acute lymphoblastic leukemia classified “bi-phenotypic” in nature.

Janet implores in her blog post that if you live in these areas to please consider attending these drives to register to become a potential donor in the National Marrow Donor Program, or sign up to be a volunteer and help recruit donors a these events:
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Midwest:

Carthage, Missouri on August 6th and 7th 2010

1900 Grand Avenue, Carthage, MO 64836

9:00 am to 9:00 pm

For more details about this particular drive and how you can help, please contact Ted Nguyen, the Vietnamese Outreach and Recruitment Coordinator for A3M, at tnguyen@A3Mhope.org

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Northern California:

San Jose, Grand Century Mall on August 14, 2010

1111 Story Road, San Jose, CA 95122

11:00 am to 3:00 pm

For more details about this particular drive and how you can help, please contact Annie Doan, the Vietnamese Outreach and Recruitment Coordinator for AADP, at annie@aadp.org

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Says Janet:

"It is actually best if you are able to crumple up your sleeves and volunteer an hour or so of your time to recruiting marrow donors to join the registry. All you need to do is contact those coordinators I’ve listed above, and I assure you that they will get back to you as soon as they can. Sitting behind a computer screen and pressing a button to share this is fair enough in the internet community, no doubt, but sometimes it all comes down to face-to-face persuasion to save someone’s life. I can’t think of a better person today that we should to do this in honor of than little Barry.

For more information about his courageous story, please visit his website at: www.savebarry.org"

Jasmina's Memorial Service

For those who wish to participate, here are the details for Jasmina's memorial service and viewing posted today on her online journal:

Industria Studios
Sunday, January 31
775 Washington Street
New York, NY 10014

There will be a service for friends and family from 2-3pm.

From 3-5pm there will be an open casket viewing for the public.

In lieu of flowers and to show continued support please make any donations to
One For Jasmina,
P.O. Box 295, NY, NY 10276,
www.OneForJasmina.com and click on the "How to Help" tab.

Rest in peace little angel.

Jasmina Passed Away Tonight :(

Jasmina was only 6 years old when she passed away Jan. 27, 2010. Here she is with her beloved kitty Lucky.

In the space of 1 year Jasmina was diagnosed with Leukemia on January 20th, received a mismatched 9/10 marker transplant in June, then relapsed in September 2009. With the help of supportive transfusions, medicine and more chemo by the third week of October her bone marrow biopsies came back as 0% Leukemic cells. At the end of November Jasmina was rushed back to the hospital suffereing from a swelling of her brain caused by a medication she was taking combined with high blood pressure. By the end of the December the Leukemia was back.

On New Years Eve Thea, Jasmina's mom, found out her Leukemia had split and had become two different types of Leukemia AML and NK. Less then three weeks later the Leukemia had mutated to AMML which is not treatable in post transplant patients.

Jasmina and Thea

Last weekend her online journal said she was having a great time:

"Jasmina had a really nice weekend. She and Isabelle went to see the Tooth Fairy movie on Friday and then Jasmina and Thea ate dinner at a friends house. Saturday Jasmina made delicious strawberry pizza with a friend. On Sunday, Isabelle, Wim and I hung out with her for a few hours. She was happy and in good spirits. Thea's friend brought her adorable puppy, Ruby, over to play with Jasmina and Lucky (her cat). Lucky wasn't so thrilled with this arrangement, which Jasmina found hilarious. It was really nice to hear her laugh so hard."

On Monday, just one day later, Jasmina spiked a fever. On Tuesday x-rays confirmed that she had pneumonia in both lungs. In her weakened condition it was just too much for her little body. The pneumonia didn't respond to the antibiotics and as her breathing became more labored she was moved to ICU. As her lungs began to fill with fluid it became apparent that there was to be no miracle for Jasmina, no happy ending. She was held by her mother and surrounded by loved ones who touched and comforted her. On Wednesday at 7:55 CST Jasmina passed away. Rest in peace little angel :( My thoughts and prayers are with you, your family and friends.

Jasmina lived with 3 kinds of Leukemia, shingles, graft vs. host disease, diabetes, posterior reversible encephalopathy syndrome, high blood pressure and a myriad of conditions and complications caused by the leukemia and the treatments that were saving her life. Through it all she smiled, she laughed, she comforted her mother and enjoyed her life as best as she could. She was easily far more courageous then most of us could ever hope to be in the same circumstance.

It was just a few short weeks ago on December 6th that Jasmina was in the Oval Office of the White House meeting and talking to President Barack Obama thanks to the Make a Wish Foundation. She wanted to talk to the President about helping kids with Leukemia. It was the experience of a life time and in her 6 short years she changed the world. Jasmina helped to raise so much awareness about the need for more people to join the National Marrow Donor Program and received lots of publicity that she put to good use to help spread the word. One of the drives held in her name located a donor for another patient in need. Literally thousands of people joined the registry hoping to help save this precious little girl.

I don't even remember how I found her website but one day last year, shortly after Tami became sick, I stumbled upon it and immediately began checking back, following news articles, even saw new stories about her on tv by chance, and found her online journal where all that she endured and conquered was written down for her many friends and supporters to follow her progress as she fought for her life.

Jasmina's story can be read on her Caring Bridge Journal. CLICK HERE to read her journal day by day. If you register you can even offer condolences to her mom and loved ones in her guestbook.

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If you would like to join the National Marrow Donor Program to try to help another patient in need:

PLEASE CLICK HERE to order a home test kit online

Or CLICK HERE to use the zip code locater to find a live drive near you

Michelle Maykin is in Peace

Michelle and her husband Van just a couple of weeks ago while she was still healthy enough to enjoy a weekend getaway to Carmel.

At 27 years old and after fighting two long, hard, courageous years against her treatment resistant Acute Myeloid Leukemia, Michelle is now at peace.

It is with the heaviest heart and a lot of tears that I want to share the sad, sad news that Michelle Maykin has passed away. Those of you who read Tami's blog on a regular basis will remember Michelle from some past posts we've created.

• Project Michelle is a success for patients needing a donor
• Graham is Gone and Michelle's Prognosis: 4-6 Weeks
• PLEASE HELP: Michelle's Need is Critical

This was Michelle before Leukemia took control of her bone marrow and took over her life. Can I just tell you that I HATE CANCER!

On June 29th Michelle's husband Van posted on her blog that the doctor had told Michelle earlier that week that she had 4-6 weeks left. For days after I am certain that hearts broke all around the world for this very special girl, her devoted husband Van, her adoring family, her best friend Mabel and everyone lucky enough to have known her. Three weeks and five days later, surrounded by their love, Michelle passed away and was finally released from all of her pain and suffering.

When I first found the Project Michelle website in February there was so much hope that she was going to take back her life and was going to have her future.

This photo with her mom says it all. There is Michelle with Leukemia looking absolutely gorgeous. I've said it before but I'll say it again that Michelle's beauty was through and through, not just skin deep. It radiated from within her and touched and changed the whole world making it a better place for anyone fortunate enough to know her. And thanks to her blog and website people will continue to meet and know Michelle for decades to come.

Michelle, Van and Marshawn.

Realizing she had only so much time left, her family and best friends took her on a weekend retreat just over 2 weeks ago in Carmel, CA. There they stayed in a beautiful house alongside the Pacific coastline tucked in the forested hills. The following photos are from a slide show on her blog that she wanted to share with her readers...

Michelle's view of Carmel, CA

To read her blog it seems like everyone knew this would be a final trip and an opportunity to be together in the most normal of circumstances for perhaps the last time. I think this photo epitomizes Michelle so well. Full of life, upbeat and celebrating the good parts even while being forced to deal with the bad.

Michelle was alway surrounded by love whether at home or in the hospital. She had her family, friends and because she was so willing to go public with her story, to share and to educate, she also had strangers all around the country and world who knew her and were all pulling for and praying for her.

Michelle and her pup Marshawn

Michelle and Van.

As a direct result of Project Michelle's donor drive recruitment efforts with the Asian American Donor Program over the past 2 years since her diagnosis:

• 4 donors have been matches for patients in need and have donated their stem cells!

• 15 others are in the process of being tested to be donors.

• 110 individuals have been identified as possible matches for patients in need.

Michelle's legacy will forever be one of never giving up hope and saving the lives of others. The cancer may have taken her life but it didn't take her spirit. Michelle was fighting to the very end. Her best friend Mabel says in her blog that right up to the end she was cracking jokes, making everyone else laugh.

To honor Michelle please help to spread the word to others you know about the Marrow Donor Program particularly those of Vietnamese and Chinese descent. Educate them, explain to them the need and donation process. Ask them to register to become a potential donor. I am absolutely certain that wherever she is, Michelle will smile each time another person joins the registry.

They can learn more at Tami's Website or at the www.AADP.org so please send them one or both links.

In Remembrance of Carolyn Tam

When I first learned of Tami's diagnosis I also learned about Carolyn Tam from my friend Evonne Wong. Evonne directed me to Carolyn's blog and it was there that I first got the idea to build Tami her website and blog.

After reading Carolyn's blog I read the sites and blogs of other patients like Project Michelle, Team Matthew, Team Krissy and more. And though I didn't personally know any of them I felt connected after reading their highs of attaining remission and the lows of their diagnosis' and relapses.

So even though I never personally knew Carolyn, it saddened my heart greatly this morning when I received word via her Facebook Group that she had passed away 2 days ago because her match was never found. Carolyn fought a long hard battle that I hope one day, nobody will ever have to face.

Can you imagine if every eligible person in this country joined the registry? Instead of taking 2 years or more to find a match, people could be matched in 2 weeks. Countless lives would be saved. It may sound idealistic but if everyone were willing to register and donate that could be the case for so many people in need.

It is an outright tragedy that Carolyn was not saved. She should have been saved. I wanted to create a memorial page for her on Tami's site because I feel strongly that her life is one that needs to be recognized out of respect for who she was and the hard fought battle she faced.

CLICK HERE to visit the remembrance page for Carolyn on HepingTami.org.

4/26/09 Edited to Add:

I just received a message this morning from Patrick, Carolyn's brother. I am stunned and so appreciative at the same time that he has offered to send us all of the information they have accumulated over the course of 2 years to help us fast track our efforts to help Tami. I say I'm stunned because Carolyn just passed away a few days ago. But I quickly realized that it takes someone who has been through this process to realize that time is not a luxury to be wasted. Any patients best chance of recovery is to receive a transplant while their body is still strong enough to recover from the procedure itself. So thank you Patrick for reaching out to Tami so quickly after learning about her need.

I've also received some messages from Chris, Carolyn's friend, asking people to please don't quit Carolyn's Facebook group now that she's passed away. The groups efforts will continue as her legacy and they will continue in her honor to register new donors to help others in need. If you are on Facebook and want to support them CLICK HERE to join Carolyn's group.