And What Followed...

Thursday, July 30, 2009

Remember Michelle

I am very sad to relay the news that Michelle Maykin passed away last week. She was an incredible girl and an enormous inspiration for so many. Despite her struggle, she truly remained positive and and loved life til the very end.

Please remember her and her beautiful spirit by signing up on the marrow registry. And today, try to hug, forgive or love someone just a little bit more than you usually would... for Michelle.

With sadness and love,



This message from Glenn Agustin from A3M:
It is with deep sadness that I'm telling you about Michelle Maykin's passing last Friday. Diagnosed in February 2007, Michelle and the efforts of Project Michelle has since registered close to 20,000 people! Their novel efforts of outreaching via various forms of media awarded Project Michelle the NMDP's Excellence in New Media Award in 2008. Michelle's positive spirit and superhuman strength has touched and will continue to inspire the lives of patients, the NMDP staff, and strangers all over the world. Please keep Michelle and her family and friends in your thoughts and intentions.

Friday, July 10, 2009

Stacie Tamaki

I'm reposting this from Stacie Tamaki's entry on Tami's Blog. I was so moved by what she wrote, that I wanted to share. Please keep spreading the word.


Saturday, July 4, 2009

Graham is Gone and Michelle's Prognosis: 4-6 Weeks

I share the news of Graham and Michelle with you not to make you sad, but to make you mad. Mad that neither were ever able to find a marrow match. Mad because Leukemia is a treatable disease and yet people die from it each day simply because there aren't enough people who have joined the National Marrow Registry, not just here in the U.S. but in Asia and Worldwide. Please don't forget people like Graham and Michelle... People who have suffered through so much illness, pain and recovery only to finally be told that there is no hope for them.

Graham Barnell and His Family May 2009

For the second time this week I spent the wee hours of the morning in tears. Several nights ago I learned that Graham Barnell, husband, father and Leukemia patient, had passed away. I met Graham through his Facebook Group after he first joined Tami's FB Group. I was one of many of his online friends who received a message at 2:49 a.m. on July 2nd breaking the sad news that he had "Passed away peacefully, surrounded by family and friends."

And early this morning I read Michelle Maykin's blog only to learn that she is almost out of time.

Last Monday she posted a post titled: How do you know when to stop fighting? Due to Tami's transplant taking place on Tuesday I hadn't made the time to check on Michelle the way I normally do so I was stunned. I literally felt my heart sink as my body began to tremble right before the tears came as I read that even with one medicine that is safe for her to take to slow her cancer, last week her doctor estimated that she has 4-6 weeks left.

Except for her loss of hair, she doesn't even look sick.

Western medicine has nothing left to offer Michelle when it comes to a cure. Her Leukemia has proven to be chemo resistant and no marrow match has been located. There are no treatments left whose benefits and possible effectiveness outweigh the terrible and possibly fatal side effects they may create. Both she and her husband Van were crushed. But despite being completely aware of the odds, Michelle is still not giving up. She is turning to Eastern remedies: herbal medicine, practicing Qi/Chi Gong, and sticking to certain dietary restrictions as her "last fight."

If Eastern medicine can result in major improvement or another remission and a marrow match is found NOW Michelle could still have a chance at not 4 to 6 weeks of life but 4 to 6 DECADES! She is only 27 years old :(

I love this picture of Michelle and Marshawn

Both Michelle and Graham participated in a clinical trial receiving double cord blood transplants at the Fred Hutchinson Cancer Research Center using the stem cells found in infant's umbilical cords. Cords used to be disposed of after a delivery but now we know that there are many reasons to save this stem cell rich blood source. Michelle's remission was about 5 months before she relapsed this spring. Graham suffered through and survived the most severe type of Graft vs. Host Disease and was then stricken with a terrible and persistent fungal infection only to succumb to a chest infection.

If either had found a 10/10 adult stem cell match their odds would have been better. A cord blood transplant is not an ideal match. But when no adult match has been found and the patient is out of time, it buys them some time. Imagine if during Michelle's remission a match had been located and she was able to receive a transplant by now.

Just last month Michelle's friends threw her a cancer "intervention" inspired by a particular episode of the TV Show How I Met Your Mother.

I post this because even though Tami received her 10/10 marrow match and transplant I feel the need to remind everyone that most patients do not. Most patients lose their battle when their 27 or 39 or 44. Many leave behind young children and husbands and wives, grieving parents and heart broken friends.

Statistically the odds are that only 30% of patients in need will find a marrow match and receive a life saving transplant. That means 70% of people won't find one and will die.

But that's something we can all help to change. Please continue to spread the word about all you've seen Tami go through and all you've learned here on her blog and website. Please tell people about Tami's website so they can learn more too. Please don't step back now that Tami's need has been met. We really need everyone to help us spread the word so that others who still have some time left, others like Michelle who need and deserve a miracle, can be saved.

If you want to send Michelle a message of support you can do so on her BLOG by leaving a comment on one of her posts.

Posted by Stacie (Tami's cousin)