4 Year Old Devan is Searching for a Marrow Match

I just found out about 4-year old Devan who has high-risk Acute Promyelocytic Leukemia (APL) a rare type of leukemia. Devan needs to receive a bone marrow transplant within 10 weeks. Being 1/4 South Indian and 3/4 Northern European, Devan falls into the category of mixed ethnicities that is more challenging to match because for every patient in need, their best chance of locating a match is within their own ethnic group. If you are of two or more ethnicities it usually means needing to find a donor who shares the same ethnicities.

There is still no match for him in the global adult stem cell/bone marrow database. A provisional, partial cord blood match has been located for Devan but his best chance of a successful transplant is to locate a 10/10 match. A partial match can be successful but the odds are not as good as with a full leukocyte match. If you are of South Indian descent and especially if you are of Indian and Caucasian descent please consider joining the marrow registry in the hopes that you will be Devan's match. You can learn about the two donation methods by CLICKING HERE. Visit Devan's Website by CLICKING HERE

Joining the registry is just a registration form and 4 cotton mouth swabs that you rub on the inside of your cheeks. Devan is just one of thousands of sick patients searching for a marrow match so that they can have a chance at having a future. Of the approximately 6000 Americans searching for a match each day because they are suffering from blood cancers like Leukemia and other blood conditions like Aplastic and Sickle Cell Anemia, 70% will not find a match in time. You can help. You might be a match. You might be able to help save a life.

Please CLICK HERE to locate an in-person marrow drive using your zip code

Please CLICK HERE to order a mail-back test kit that will be sent to your home

Rest in Peace Nick Glasgow

This morning I woke up to learn that Nick Glasgow is no longer with us. From his blog:

Nick Glasgow passed away yesterday after a courageous and, in many ways, historic battle with leukemia. His mother Carole, whose loving support for her only son was constant and unwavering since his original diagnosis in March, was with Nick throughout his final days at home.

Here is a video of Nick and his mom Carole from earlier this year while he was in the hospital. To see Nick smiling and even laughing a little may give you a connection to him if you didn't know him in person. I know it did for me.



Following his transplant, about a month after Tami received hers, Nick's experience was similar to hers. He also had a 10/10 anonymous donor match from an altruistic and generous stranger, mucositis and GVHD. But his treatment resistant, acute myeloid leukemia came back just 2 weeks ago and there was nothing left to be done to help him. :(

Diagnosed on March 16th it was on June 16th that two 10/10 donors had been located and passed confirmatory testing as suitable donor matches for Nick. He received his transplant in early August.

For me the question that keeps popping up in my mind is: What if he had received his transplant sooner? What if the day he was diagnosed a match was already in the registry for him, and instead of 4+ months it took 4 weeks to confirm his match and transplant? Would earlier treatment help to save more lives? If all patients could receive their transplants before their cancer or condition has a chance to deteriorate their overall health, could more be saved? If Leukemia patients could avoid the rounds and rounds of chemo to attain remission to buy them time while searching for a match I believe their chances of surviving would increase. That's just my opinion but I'm pretty certain if I asked a doctor they would confirm my suspicion.

So we will continue fighting the fight for Nick and others who, despite their suffering and courage, didn't survive. We'll continue raising awareness of the need for people of mixed ethnicities to join the registry (along with everyone else) in his name. I am already certain that of the thousands of people who registered to help Nick, some of them will go on to help save others

Helping to get more people to join the registry is something we can all do. Do it for Nick. Share his story. Ask your family, friends, co-workers and people you meet to join the registry in Nick's name. We can all help to save others even if we aren't ourselves, a patient's match and donor.

Join at www.BeTheMatch.org

For minorities and those of mixed ethnicities please join at www.AADP.org

Edited to add: I just received a message to the members of Nick's Facebook Group. One bit of it I wanted to share with all of you:

One thing the Leukemia did not rob was Nick’s determination, joyful spirit, and strength. Though he was uncomfortable and in plenty of pain, Nick was still joking around with friends and family and still determined to walk to the bathroom and sit at the dinner table every evening. He also chose to lessen his pain medications, because he preferred to have a clear head than to be pain free. Nick truly was a fighter!

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)

Another Success Story

I love to write about the success stories and this sure is one of them. Jasmina Anema, 6 years old, was diagnosed with leukemia and needed a stem cell transplant. She was extremely lucky to find a donor within five months and it appears her body is accepting the stem cells with no negative reactions!! Singer, Rihanna has followed Jasmina's story closely and said that luckily miracles do happen. The New York Daily News featured Jasmina's story.  There is also an awesome picture of Jasmina with Rihanna!

You can read Jasmina's entire story here.  She has been such a courageous and wonderful role model.  We wish her the absolute best with her stem cell transplant.  She will need rest and will have to be indoors for next six months but then her normal life can resume!  

Posted by Wendy. Learn more about her in this blog post

Website for Cancer Patients and Caregivers

Looking for an awesome website for cancer patients and caregivers alike?  Try the website Surviving Cancer Whole.  Obviously being diagnosed with cancer is a scary and emotional experience. However, caring for a loved one with cancer can be just as scary and emotional.  A strong support system is a must for patient and caregiver.  A website is a convenient way to talk to others in similar situations without having to leave your house.  Joining the website may be your first step to surviving cancer both physically and emotionally.