Update on Tami - 11 months post transplant!

Well there are all kinds of things for m to report to you and almost all of them are really good news! YAY!

1) The one year anniversary of Tami's stem cell transplant is next month!

2) If all goes well at her anniversary recheck she is planning to go back to work the week after 4th of July weekend if her doctor's give her the all clear.

3) Unfortunately Tami is experiencing another mild case of Graft vs. Host Disease. Her doctors are treating it by putting her back on an immunosuppressant drug.

4) While at her anniversary recheck she is planning on signing the confidentiality release in the hopes of being able to directly contact and/or meet her donor someday. In order for that to happen her donor will have to have signed a similar release. Only after both parties have signed the release will the National Marrow Donor Program help facilitate direct interaction between them.

I was chatting with my mom the other day and we are hoping that her anonymous donor will sign his release so that our family can thank him personally for being willing to be a donor and helping to save Tami's life. All we know is that at the time of Tami's transplant he was a 33 year old Asian man who lives in the United States.

In other news Tami is driving again and her hair continues to grow back in. In recent weeks she has also felt stronger for the first time in over a year. She has started doing pilates this week in place of physical therapy to help get her strength back. She says her instructor is a physical therapist so she really knows her stuff :)

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

Be The Match on YouTube

Visit Be The Match's new YouTube channel at www.youtube.com/bethematch. There you will find videos about patients, donors, the donation process, and more.

You can help spread the word about the marrow donor program by posting the latest videos to your blog, Twitter and Facebook accounts!

Bravo's 9 by Design Supports Bone Marrow Registration

Do you watch the Bravo tv show "9 By Design?"

Their next episode airs on Tuesday May 11 at 10:00 PM on Bravo. It's a show that follows the husband and wife property design and developers as they work on multiple projects throughout the season.

I'm sharing this with you because part of the next episode will feature a fundraiser that was held for little Jasmina Amena. The hosts of the show, Robert and Cortney Novogratz, were personal friends of Jasmina before she passed away and are still friends with Jasmina's mom Thea. Because of what happened to Jasmina, Robert and Courtney were able to create a feature on their program to help spread Jasmina and Thea's message: To raise awareness about Leukemia and the need for more people to join the registry as willing donors.

You may remember reading about Jasmina here on Tami's blog in the past. She was an adorable and courageous little girl who got to meet President Barack Obama just weeks before she passed away. CLICK HERE for to read the memorial blogpost I wrote about Jasmina.

I am an official SMART volunteer for Be The Match

Stacie here: At the end of last year I was contacted by a representative from Be The Match (The National Marrow Donor Program) who informed me that they had noticed the volunteer advocacy work I had been doing online to help my cousin Tami and other patients who needed to find marrow matches to save their lives.

They had noticed there were many people like myself, out there doing their own thing to raise public awareness about Be The Match. So they wanted to create a program that would offer us up to date information as well as an actual liaison at Be The Match who could assist us in our online advocacy efforts. Great! I need all of the help I can get.

I was asked to a part of a focus group that would help to develop information for the program over the course of several weeks. I joined the group, answered lots of questions, then they took that information and developed the "Social Media Action Response Team" program and I'm very excited to say that I am now an official "SMART" Volunteer for Be The Match. You can read about the volunteer program in their BLOG by CLICKING HERE.

The journey I have taken into being a volunteer advocate over the past year has been more heartbreaking than joyful but ultimately even through the sadness it is rewarding because even though many of the patients I wish had found matches in time didn't, it doesn't mean that the effort to help them was wasted. In fact the patients themselves are usually the first to point out that even if a match isn't found for them, they know that people who joined the donor program to try to help them, might someday help another patient in need, and that means the world to them.

Yesterday was a bittersweet day.

Rob Harder is a young man who was entering the prime of his life in 2009 having just graduated from college. Early last year he was diagnosed with an Aggressive T-Cell Lymphoma. He set up a blog, a Facebook Group (which is how I met him) and shared his story with the world. Yesterday his family posted on his Facebook Group that he is nearing the end of his battle and on his behalf, bid his friends and fans farewell. (ETA: Rob did pass away that same evening. May he RIP)

At almost the same moment that Rob's family posted that he was not in pain and surrounded by his loved ones, who want to be there to comfort and love on him as he passes, little 8 year old Natalie Nakatani's family posted on Facebook that she had finally received her bone marrow transplant yesterday and now has a chance at surviving the Acute Myeloid Leukemia she suffers from. You might recall from a previous post that her doctors had given her less than 6 weeks to find a match before they felt it would be too late, when, with I think less than 2 weeks left, an international donor match was found for her in China.

What has become normal for me is simply fielding some questions to the proper places that can help those in need. For instances a few weeks ago I received a desperate plea for help from a man in Europe who was told there was no hope for a transplant for his condition because the cost was too prohibitive and another inquiry from someone here in the U.S. who wanted to set up a donor drive for their sick cousin. I was able to direct both of them to the proper agencies who could help them. The man in Europe I found a group that might be able to get him into a clinial trial offering some hope and more time with his family. The woman in the U.S. I was able to direct to both Be The Match and DKMS to help her set up a donor drive.

So emotionally it is often hard on a good day and absolutely heartbreaking on a bad day. But I believe if more people get involved and if more people are willing to donate their stem cells or marrow to a stranger in need, we can turn this whole thing around and begin saving more patients instead of watching them wait and wait for a marrow match that never comes or is found too late. The donation process has become very straightforward using a newer method 75% of the time called Peripheral Blood Stem Cell donation (PBSC) where the stem cells can be harvested through your blood instead of marrow being extracted from the hip bone. CLICK HERE to learn more about the 2 donation methods.

Each of us can make a difference. We can be willing to donate our marrow or stem cells to a patient in need and/or help encourage others to join the marrow registry. Please contact me if you have any questions at all. I'm happy to help find you some answers.

Shaquille O’Neal Supports Be The Match

Read about Taylor on the Mid Dekalb news website by CLICKING HERE

Press Release from Be the Match:

Shaquille O’Neal has teamed up with Be The Match to challenge Americans to “Be the one to save a life.” Starting today, three public service announcements will hit the airwaves and the Internet to help the thousands of patients like Taylor John who need a marrow transplant.

Unlike most 15-year-old girls, Taylor isn’t eagerly anticipating her 16th birthday. She has severe sickle cell anemia and a marrow transplant is her best hope for a cure. But there is no matching donor in her family or currently on the Be The Match Registry. And because of the progression of the disease, doctors say Taylor may run out of time if a match isn’t found before her 16th birthday, which is this August.

Taylor and thousands of other patients are counting on the Be The Match Registry, whose 8 million volunteer members stand ready to become marrow donors. While many patients do find the life-saving match they need each year, more donors are needed, especially those from racially and ethnically diverse communities.

You can be the one who helps save a life. Take the first step by joining online at BeTheMatch.org.