Helping Tami - How Registering your Bone Marrow Can Save a Life

I Am Desperate for Your Help

noreply@blogger.com (Tinygami) — Wed, 25 Jan 2012 07:36:00 +0000

I was stunned this morning to discover that Janet Liang, a 24 year old Leukemia patient I became friends with two years ago, had posted a new video on Youtube saying her doctors have told her she only has two months left to find a bone marrow match or it will be too late.

Janet in remission last year and this week after being told she's running out of time.

How can you help?

1. If you aren't already in the bone marrow registry please JOIN NOW. Registering is pain free and donating almost is.

2. If you are in the registry and are contacted please donate. A shocking percentage of those contacted decline to donate when told they are a patient's best match.

3. I know a lot of times we look away because a problem feels too immense or we feel too helpless to do anything about it but there are lots of things you can do to help Janet:

Email the link to this video http://youtu.be/qSCyz8F_kuo to everyone you know.
Blog about her. To learn more about Janet visit her website at: http://www.helpingjanet.com/
Tweet about or retweet this post
Join her Facebook Group for her latest updates: http://www.facebook.com/helpingjanet
Print and post the PDF Flyer and tear away tags to help motivate others to help
Print, post and share the QR code to this video <img src="http://qrcode.kaywa.com/img.php?s=8&d=http%3A%2F%2Fyoutu.be%2FqSCyz8F_kuo" alt="qrcode" />

Janet desperately needs her story to go viral. Please help me share it to save her life.

Please watch this Youtube video titled "Finding a Perfect Match for Janet - Her Personal Plea." While she says she hasn't lost hope she tearfully opens with her fear of dying and that she doesn't have much time left. Janet was first diagnosed with Leukemia in 2009, achieved remission in 2010 and relapsed just before Christmas in 2011. I try to imagine how that would feel and it makes me want to help as much as I can, any way that I can, so I am reaching out to you hoping you will help me, help Janet.

Please print Janet's flyer and hang it wherever you can.

Print and post the PDF Flyer and tear away tags to help motivate others to help.

Tami Met Her Donor Scott at a Be The Match Fundraiser

noreply@blogger.com (Tinygami) — Sat, 31 Dec 2011 00:32:00 +0000

I am thrilled to be able to post a heartwarming update about Tami, who most of you know because of the www.HelpingTami.org website I built for her when she was first diagnosed with a blood cancer similar to Leukemia callled Myelodysplasia in Feb. of 2009.

First I was able to report an anonymous match had been found. Then that her transplant had taken place. Then came the one year anniversary of her transplant. After one year the donor program allows donors and recipients to learn each other's identities if both parties are willing. So Tami met her anonymous donor Scott via the telephone and email in September of 2010 and we were able to see the face of the person we all felt such gratitude towards! Now here we are two years past her transplant date, she is still in remission and she was able to meet Scott in person less than a month ago!

Marrow Donor Scott Kikiloi met his recipient, my cousin, Tami Schwartz at the Hawaii Bone Marrow Donor Registry’s "Thanks for Giving" Hair and Fashion Show Luncheon at the Hawaii Prince Hotel on November 20, 2011.

Tami said:

I was honored to be invited to the 2011 Hawaii Bone Marrow Registry Fashion Show fund raiser in Honolulu to meet my stem cell donor Scott Kikiloi. Little did I know in February 2009 when I was diagnosed with Myelodysplastic Syndrome (MDS) it would lead my family to Honolulu to meet Scott, his wife Punahele, and his parents and extended family.

In June 2009 during my transplant, I wondered who this giving person was. After 14 months of waiting to find out, I received a letter with Scott’s identity. I immediately contacted him and found out he was everything I imagined. I have been fortunate to get to know Scott and his wife Punehele through email, Skype, and Facebook this past year and was very excited to finally meet them in person. When we finally got to meet at the fund raiser, he was everything that I expected him to be. It was a very emotional day for all of us.

Scott had joined the National Marrow Donor Program Registry back in 1996 when he learned about a little girl in Hawaii named Alana Dung who needed a bone marrow transplant.

Not only did we get to meet Scott but meeting Alana Dung's parents, Stephen and Adelia Dung was very hard. To think that their family lost their little girl but that her memory has continued to help over 100 people from the various donor drives that were held for her."
When Alana Dung was diagnosed with Acute Myeloid Leukemia in 1994 there were 16,500 Hawaii residents who had registered to donate their marrow to patients in need. As word spread about Alana's diagnosis the state reached out to help her. Over 30,000 people joined the National Marrow Donor Program Registry in Hawaii to try to help Alana.

I've been told that once Alana's need became public you couldn't walk down the street without seeing a marrow donor drive taking place at schools, businesses, malls, special events and at churches. . . Everyone wanted to help. Sadly, after receiving a transplant in the summer of 1996 Alana passed away a few months later after suffering a relapse.

Along with the Alana Dung Research Foundation her parents created, part of Alana's legacy is that over 100 patients have been given a second chance at life by finding a donor from amongst those who registered to help her. Someday that number will certainly be in the hundreds or even thousands as each new day brings new diagnoses and new patients all around the world who will continue to benefit from those who joined the registry to help this precious little girl.

"The timing of this event during the Thanksgiving season made me think more and more how thankful I am for Scott’s gift and hopefully our message can reach more people to sign up for the National Bone Marrow Registry to help give the gift of life to others as Scott did through the Alana Dung registry in 1998. I cannot thank Scott enough. Spending time with Scott and his family showed me what great, giving people they are. Scott and I talked about anything we can do to get our story communicated to others to encourage them to sign up for the Bone Marrow Registry will hopefully help others in the future. I know just from the stem cell drives that were held when I was diagnosed have at least three people to date who have been donors and another two that have been called to be possible donors.

Mahalo to Scott!

Next are excerpts from Scott's point of view from The Gift Of Life Through Marrow on Midweek.com by Yu Shing Ting:

"Kikiloi, 36, says he has no regrets on becoming a donor, but admits it was not an easy choice at first. He just needed a better understanding of the process. He also had a lot going on at the time with a “pretty demanding” job at Kamehameha Schools as cultural assets manager, and working on his Ph.D in archaeology at the University of Hawaii.

Scott donating his stem cells by PBSC to help Tami.

There also was a trip he was planning to the Northwestern Hawaiian Islands for his dissertation on two of the islands there, which was not easy to coordinate. “I would be on these islands in the middle of the ocean for about a month to survey the site and get samples,” explains Kikiloi, who grew up in Kaneohe and lives in Manoa. “It’s really rugged, difficult islands to live on (about 300 miles away), so I needed to be in good health. If there was an accident or if you needed medical attention your life could be at risk."

Scott, his wife, parents, sister and brother in-law.

“But for me, I tend to help people. I thought about it, and if I was the only match, I’m not going to leave someone hanging like that. It just came down to that it was something I felt I should do, and I ended up doing the donation a few weeks before the trip.”

“I’d like to encourage people to join the registry,” says Kikiloi. “(For me) it was definitely worthwhile. Being able to save someone’s life is an honor and a privilege.”

Adelia Dung spoke as Tami watched from the stage.

The top image above is Tami and Scott with their families attending the Luncheon.

The lower image is of her family with Roy and Annie Yonoshiro. Roy works at the Hawaii office of "Be The Match" the National Marrow Donor Program and Annie is a volunteer there.

I've actually spoken to both Roy and Annie by phone when Tami was first diagnosed and I was doing as much research as I could to learn how to help her. It's really neat to now have "faces" to piece together with my memories of speaking to them by phone. Annie and Roy helped to coordinate Tami's attendance at the fashion show and are dedicated advocates to helping more people like Tami find the life saving matches they need by growing the Hawaii bone marrow registry with more potential donors.

A poster for the event itself.

Scott, Tami and Paul

And a special thanks to Tami's cousin Paul Mow for allowing the use of his photos in this blog post.

While Tami's happy ending continues to unfold there are still approximately 6000 American patients searching for a match every day and thousands more world wide. Just like Scott you can help one of them if you are a match.

Joining the registry is virtually pain free and donating usually almost is. WIth the new PBSC method of stem cell donation it isn't nearly as painful as most people seem to think it is. Discomfort, if there is any at all in most cases is mild and short lived. You can learn more about the two donation methods by CLICKING HERE.

IN THE UNITED STATES

If you live in the United States please go to the Be the Match website and enter your zip code to locate a live drive in your area.

Or CLICK HERE to order a test kit that will be mailed directly to you.

ALL OTHER COUNTRIES

There is also a list of international marrow donor programs at this link on my Marrow Drives website.

Please contact a program near you to locate a live drive or registration location. In most countries testing is simply swiping the inside of your cheeks with 4 cotton swabs while in some a simple finger prick for a blood sample is all that is needed.

Alice's Bucket List and How You Can Help Her

noreply@blogger.com (Tinygami) — Thu, 09 Jun 2011 16:53:00 +0000

Alice is a 15 year old British girl who in three short days has become internationally famous because of her Alice's Bucket List blog. Why would a 15 year old girl need a bucket list of things she wants to do before she dies? Because she has terminal cancer. Alice is suffering from Hodgkin's Lymphoma, a cancer of the lymphatic system, and may have only weeks left to live as much of her life as possible.

Yesterday and this morning Alice was trending on Twitter because someone tweeted to trend on Twitter was one of her bucket list wishes. But as the International Business TImes and Guardian.co.uk pointed out this morning, something got lost in translation. To "trend" on Twitter (meaning be one of the most popular topics being talked about and shared on Twitter) just for the sake of trending wasn't really her goal.

In actuality her wish was to broadcast an appeal for people to register and join their national bone marrow donor registries. Reaching people "To make everyone sign up to be a bone marrow donor" is at the top of her budket list. She even donated herself, to herself, two years ago and says "it really didn't hurt at all."

Says Alice in her blog post on June 9th, 2011:

"I'm excited about the things I am going to be doing, but the biggest thing has to be all the people who are joining bone marrow donation schemes because of me. I read on someones post that it is really painful. Well, mostly bone marrow is taken as cells via a needle and I have had it done. I was 13 when I had my first transplant and because they used my own cells, I had to have them taken out (they call it harvested) and then stored and put back in some months later after more chemo. I'm not just saying this, but it really didn't hurt at all. I had a tiny bruise from the needles and that was about it. I was a bit tired too but I'm always tired so that may not have been the cells.

So, I was never begging and I don't need any money but I do love to get your messages and I hope you'll follow my blog and keep leaving me a message. I will take a camera with me wherever I go and I'll post photos of everything I do. In return, you can keep asking everyone you bump into to join the bone marrow donation schemes in your country."

To join the marrow registry:

In the UK Alice recommends the Anthony Nolan UK Blood Cancer Charity.
In the US you can visit Be The Match to order a home test kit online or learn where local drives are being held using your zip code.
Internationally you can see if your country has a registry by visiting a site I created called Marrow Drives.org

And just an FYI: Many of the national registries combine to form the international donor pool where over half of all matches world wide are found. How does it work? Donors donate where they live and the marrow or adult stem cells are flown to the patient's treatment hospital for the transplant. (My cousin Tami in Washington state received her stem cells from her anonymous donor in Hawaii.)

Please honor Alice's wish by joining your local registry and encouraging others to join if you can't or are already in the registry.

If you want to donate money to a cause the only option Alice has mentioned is to support her sister Milly in the Race for Life run sponsored by Tesco and Cancer Research UK.

Alice I am so sorry that you are sick and I hope you are able to make most of your dreams come true. Have fun this weekend at Take That! And thank you for helping to raise awareness about the marrow donor registry. I'll be reading your blog from now on and will help as much as possible to publicize your list.

Here are some of the things Alice wants to do with the time she has left:

To make everyone sign up to be a bone marrow donor
To swim with sharks
To go to Kenya (I can't travel there now but I wanted to))
To enter Mabel in a regional Labrador show
To have a photoshoot with Milly, Clarissa, Sammie and Megs
To have a private cinema party for me and my BFFs
To design an Emma Bridgewater Mug to sell for charity
To stay in a caravan
To have a purple Apple ipad but I'm not really allowed to put that on here and mum is trying to borrow one
To be a dolphin trainer (I can't do this one either now)
To meet Take That
To go to Cadbury World and eat loads of chocolate
To have a nice picture taken with Mabel
To stay in the chocolate room at Alton Towers
To have my hair done if they can do anything with it
To have a back massage
To go whale watching

Houston, TX this Saturday: Roger's Second Annual Blood Drive and Fundraiser

noreply@blogger.com (Tinygami) — Thu, 24 Mar 2011 00:00:00 +0000

It's that time of year again, the second annual Roger Contreras Blood Drive and Fundraiser. Roger had the same blood cancer (MDS) that my cousin Tami had.

That's Roger and his sister who donated her stem cells to help cure his blood cancer.

Saturday, March 26, 2011
10:00 am - 6:00 pm
Gabby's BBQ Restaurant
4659 Telephone Road & 610
Houston, TX 4659

Gulf Coast Regiional will be there to receive blood donations. Donors will receive their choice of a T-shirt. Please note: The blood bus will not be open from 1:00 - 2:30, so that they can process the first 4 hours of donations.

Some of Roger's Current Medications

This is a also a fundraiser to help cover some of Roger's ongoing medical expenses, particularly his prescription medications that are helping to keep him alive. So, at the same location, BBQ plates will be catered and served by Gabby's. The donation is $6.00 pre-paid and $8.00 day of event. It will include a BBQ Sandwich, side order & drink (w/refills)

Pastries will also be offered for a small donation.

This is True Grit. Roger was up with a walker less than 24 hours after his second hip replacement on March 1, 2011.

Please come out and enjoy the day and say hello to Roger who just recently underwent his second hip replacement surgery necessitated due to complications from the stem cell transplant he received two years ago. His Graft vs. Host Disease required a lot of steroids to control which subsequently damaged his bone marrow causing the marrow in his hips to die. It was a painful condition and the only treatment was to remove his hips and replace them with artificial hips. As if he hasn't been through enough.

Joe Lee Sanchez wiII playing what you like to hear from noon until 3:30 on the outside deck.

If you have any questions or would simply like to make a donation, please contact Roger at (832) 496-1453

Donations can be made via Paypal to txplumber@gmail.com or call him for a mailing address. (Roger has been unable to work for 3 years now and with mounting medical bills you can imagine how much stress the lack of funds is putting on him and further complicating his recovery.)

If you live in Houston please come out! If you don't live in Houston please share this info with others who do. Thanks for any help and support!

Buy Uggs Online and $20 will Help Marrow Transplant Patients

noreply@blogger.com (Tinygami) — Mon, 14 Feb 2011 18:29:00 +0000

Thinking you'd like to buy some UGGS but need a little motivation to make the purchase?

If you order them now through www.ComfortShoeShop.com and enter "Gift of Life" in the message box (for a limited time) for each pair purchased, $20 will be donated to Gift of Life.

You may recall Gift of Life is a Marrow Donor Program Registry that recruits potential donors who are ultimately included in the Be The Match National Marrow Donor Registry.

View all styles of Womens' Uggs on the Comfort Shoe Shop by CLICKING HERE

Black History Month and the Need for Black Marrow Donors

noreply@blogger.com (Tinygami) — Fri, 04 Feb 2011 08:55:00 +0000

Please don't think because you're not Black, this post doesn't apply to you. It does. It applies to all of us.

In honor of Black History Month, $75,000 is what Nordstrom is willing to sponsor when you register to be a Marrow or Stem Cell Donor by using this particular link to the Be The Match Website from February 1st – 28th, 2011. The cost to process each registrant is about $100 and Nordstrom has partnered with Be The Match to sponsor up to $75,000 of testing for one month. This is in an effort to increase the number of potential African American and Black donors to "Be The Match" aka the National Marrow Donor Program.

Why Register to be a Bone Marrow or Stem Cell Donor?
Because there are so many people suffering from potentially fatal blood diseases like Leukemia, MDS (like my cousin Tami) and Sickle Cell Anemia. For many, a bone marrow or adult stem cell transplant is their only chance at surviving their illness.

Because matches are made through chromosomes called leukocytes, not blood, matches are usually found when the patient and donor belong to the same ethnic group.

Sounds simple enough until you learn that only 7% of Be The Match Registry's 9 million members are of African American/Black descent. This means most Black patients have a very slim chance of finding a match in the registry yet they suffer from Sickle Cell Anemia at a higher rate than other ethnic groups.

Marrow Donor Erma Hightower and Stem Cell Donor Patrick Abdul

One thing that upsets me is when people are quick to dismiss the lack of ethnic diversity in the donor registry as "not their problem." It's a short sighted way to look at a very complex issue. For starters, no ethnic group, not even Caucasians, who find a match 80% of the time, find a match every time. That means 20% of Caucasian patients will not survive because a match wasn't found. If you're an ethnic minority or you're of mixed ethnicities your odds of finding a match are far less. Your odds are 30% or less a match will be located.

So even if you're thinking you're not Black so you can't help, you would be wrong. The odds that you'll know someone (family member, friend or colleague) who is stricken with a disease like Leukemia or a life threatening form of Anemia at least once or several times in your lifetime, are higher than you probably realize so encouraging others to join the registry today could save someone you care about later.

Add to that that occasionally, matches are found between people of different ethnic groups and that will hopefully be reason enough to at least consider becoming a potential donor and/or helping to recruit others to join the registry.

Photos from the Nordstrom Website

I've been in the registry since 1995 and have never been a match for anyone yet. I hope I am someday. I would donate in a heartbeat. From all accounts I've read online side effects from donating marrow (from the hip bone) or PBSC (stem cells donated through aspheresis like plasma) range from none at all to mild stiffness or nausea. Little to no discomfort to possibly save a life? Yup, I'd do that.

CLICK HERE to learn about the almost painless PBSC (Peripheral Blood Stem Cell) donation method about marrow donation from the back of the hip (pelvic) bone.

CLICK HERE to Register to be a Marrow or Stem Cell Donor through Nordstrom's generous program to grow the Marrow Donor Registry. You could save a life.

A Happy New Video Featuring Marrow Donor Recipient "T-Rex"

noreply@blogger.com (Tinygami) — Wed, 05 Jan 2011 18:10:00 +0000

Want to join the fight? Be The Match bone marrow donors save lives. Learn more on Be The Match's YouTube Channel: www.youtube.com/bethematch

News story about Tami and her donor Scott

noreply@blogger.com (Tinygami) — Sun, 14 Nov 2010 09:37:00 +0000

CLICK HERE to read the entire article

The Wish Upon a Wedding Shining Star Award

noreply@blogger.com (Tinygami) — Sat, 13 Nov 2010 21:30:00 +0000

Hi Everyone, this is Stacie (Tami's cousin who posts for her in this blog and keeps the Helping Tami website up to date) here. Some of you may not realize that for the past 13 years I have been self employed working in the Northern California wedding industry. Wish Upon a Wedding (a wedding wish granting non-profit that gives weddings to terminally ill patients) wanted to recognize the volunteer efforts individuals within the wedding industry make in the hopes their stories may encourage more people to get involved in volunteerism.

The Shining Star Award

The Shining Star award is their way to thank and pay tribute to the professionals who, by their demonstrated commitment and example, inspire others to engage in volunteer service. The Board of Directors of the Northern California chapter of Wish Upon a Wedding selected three individuals to recognize.

Recently I attended the Blissful Wishes Ball. I, along with my colleagues Gustavo Fernández (who created Hogs for Kids and volunteers for Now I Lay Me Down to Sleep and Rich Amooi (who supports Second Harvest Food Bank and Humane Society of Silicon Valley) were all given recognition for our commitment to community service, volunteerism, and the advocacy work we do. We were told one of us would be awarded the Shining Star award at the gala...

And I'm very honored to be able to say I was given the award for the work I've done supporting Be The Match (The National Marrow Donor Program) through my www.HelpingTami.org and www.MarrowDrives.org websites. Thank you so much to founder Liz Guthrie and the Board of Directors for the recognition. When you do volunteer work you don't expect anything back so it means a lot that others feel what I am doing is worthy of such an honor.

Here's the thing though, to me this really is an industry award meaning I feel it recognizes most of my friends in the wedding industry including Rich and Gustavo. While some of us may have created ways to support causes or we volunteer to help existing organizations on a regular basis, almost all of my friends donate their time and services several times a year to their friends, colleagues, local schools, non-profits, foundations and engaged couples who can't always afford the wedding they deserve. There are also many unsung heroes in the special events industry who donate their time, energy and money to help others but choose not to publicize what they do so I want to share this award with all of them as well.

If you've never volunteered before I encourage you to consider finding time in your busy schedule to help others. Whatever your strengths and passions are there is most likely some non-profit, foundation or community service organization that would appreciate your help. From granting wedding wishes, to helping at a bone marrow donor drive, mentoring programs, hospitals, hospices, soup kitchens, food banks, animal shelters, literacy programs, building houses, community gardens and fundraising there are countless way you can reach out and help others who, for one reason or another, aren't able to help themselves. www.VolunteerMatch.org is a great place to start. Just go to their home page, drop in your zip code and a list of local organizations that need your help will pop up. It's that easy to find out who needs you.

If you would like to help me by supporting Be The Match please visit Helping Tami.org to learn how you can become a marrow or stem cell donor. It was through the generosity of an anonymous donor that my cousin's life was saved. You might be able to help save a life too.

A Critical Need for Black Marrow and Stem Cell Donors Exists

noreply@blogger.com (Tinygami) — Fri, 12 Nov 2010 01:29:00 +0000

There are currently 23 Black patients waiting for an unrelated stem cell donor in Canada. Many more are waiting worldwide. With the help of international searches, maybe 4 of these 23 Canadians will find a lifesaver. To give you a better idea of the need if these 23 patients were Caucasian, 15-16 would be able to find matches within the international registry as opposed to 4.

Also needed are people of mixed ethnicities meaning if you are Black and Caucasian, Asian, Hispanic, Latino, Native American or any other ethnic combination your participation in the donor program is desperately needed as patients of mixed heritage have an even harder time finding a marrow or stem cell match. Their chance of finding match is even less than 4 in 23.

The range to begin effective matching is 10,000 - 20,000 potential donors. The optimal number of Black donors in Canada is 70,000 - 80,000. As you'll see below the actual statistics are currently less than 2000, a fraction of the range needed to effectively find a match for Black patients in need.

By The Numbers 2010:

New black registrants in Canada between Oct 2009 and 2010: 211
Total Black registrants in Canada in October 2010: 1644

New black registrants in Quebec between October 2009 and 2010: 3
Total Black registrants in Quebec in October 2009: 65

By The Numbers 2009:

New black registrants in Canada between Oct 2008 and 2009: 217
Total Black registrants in Canada in October 2009: 1433

New black registrants in Quebec between October 2008 and 2009: 38
Total Black registrants in Quebec in October 2009: 62

Where to go in Canada to learn how to join the donor program:
In Quebec: http://www.hema-quebec.qc.ca/
In Canada: http://www.onematch.ca/
In the United Kingdom: http://www.aclt.org/

In the U.S. you can register through http://BeTheMatch.org. If you are a match for a Canadian patient your stem cells can be harvested here in the U.S. and flown to Canada, or anywhere in the world, to help save a patient's life. The truth is that with the exceptions of South Africa and the island of Martinique, most of the countries and islands that where Black ethnic groups are predominate do not have marrow registration organizations (this includes most of Africa) so it's crucial for people of Black ethnicities who want to help and live in countries that do have registries to join them and become part of the international donor pool.

I keep a list on the Helping Tami.org website where you can see if the country you live in has a registry. CLICK HERE to view the international list of registries.

My friend Tamu posted these Canadian statistics on Facebook today. Tamu lost her brother Emru to Leukemia on November 11, 2008. There is a critical need for marrow and stem cell donors but particularly donors who are Black as they are grossly under represented in the national and international marrow registries. This means people from all Black geographic regions including people from Africa and the West Indies (Jamaica, Haiti, Trinidad and Tobago, and Barbados) are needed to be potential donors to patients in need.

Long Beach Be The One Run Nov. 6th

noreply@blogger.com (Tinygami) — Tue, 26 Oct 2010 21:38:00 +0000

Long Beach, CA – Long Beach will host Be The One Run™ on Saturday, Nov. 6, 2010 at Shoreline Village at Marina Green Park. With a 5K, 1K Fun Run, and Tot Trot, Be The One Run is a perfect family activity, and people of all fitness levels can participate. The public is encouraged to participate by registering for the race, fundraising and/or volunteering at the event.

Every year 10,000 patients with disease like leukemia, lymphoma and sickle cell anemia need a marrow transplant but have no donor match in their family. They depend on Be The Match® to help them find a potential marrow donor and receive the transplant they need. For many, a marrow transplant is their best or only hope for a cure.

Every step participants take helps patients receive the marrow transplant they need, when they need it.

Be The One Run, Long Beach raises funds to add more members to Be The Match Registry®, increasing the chances that more patients will find a match.

Register today for the Be The One Run or support a runner or walker with a contribution. Visit BeTheOneRun.org to register, fundraise or to volunteer during the event.

Race Does Matter

noreply@blogger.com (Tinygami) — Fri, 22 Oct 2010 19:20:00 +0000

I spent my childhood being taught that race doesn't matter and my entire adult life (up until 2009) believing that it doesn't. Believing that "seeing" people only as a color or race was somehow equivalent to discriminating. But when it comes to bone marrow and stem cell transplants, race does matter. More specifically there are certain HLA markers in our DNA that determine whether or not our marrow can be a match for a patient in need of a transplant to save their life. And these matching markers are usually found within ethnic groups.

Since 70% of the thousands of patients in need of a transplant won't find their matches within their immediate family, being willing to donate to a stranger in need also matters. Caucasian patients have an 85% chance of finding an anonymous match in the registry while minority ethnic groups have less than a 30% chance. So race matters. More people from every minority ethnic group and people who are of mixed ethnic groups are desperately needed to join the donor program. Because of the rigorous transplant and recovery process most transplant recipients are children and young adults. To see them lose their lives when they are just getting started is heart breaking.

Nick Glasgow was only 28 years old when he passed away.

The one year anniversary of Nick Glasgow passing away is approaching. After facing almost impossible odds of finding a match in the National Marrow Donor Program registry, because he was part Caucasian and part Japanese, Nick and his family and friends launched one of the largest and most successful donor drives I have personally witnessed. They found Nick not one but two perfect 10/10 matches. Sadly, the cancer was too strong and reoccurred, the transplant failed and Nick succumbed to the Leukemia leaving his family and friends far too soon. He was only 28 years old :(

His family and friends have continued to honor his legacy by doing their best to enlist more donors into the Be The Match registry. They are particularly interested in asking people of mixed ethnicities as people of all mixed ethnicities are severely under represented in the donor registry. If you would like to become a potential donor there are many donor drives that take place around the Bay Area each week.

To find a drive nationwide please CLICK HERE to visit Be The Match.org

This weekend you can register to become a Life Saving Stem Cell-Bone Marrow Donor at the Great Mall in Milpitas, CA

Saturday, October 23, 2010
11:00 AM - 3:00 PM
447 Great Mall Drive
Milpitas CA 95035
The drive will be located at the 4b entrance at the mouth of cut-through near the food court.
_________________________________

To view more details about any of the following Bay Area drives hosted by the AADP CLICK HERE

October 22 2010 Skyline College, San Bruno
October 23 2010 Great Mall, Milpitas
October 23 2010 Chinese Software Professional Association, SJ (PRIVATE)
October 24 2010 San Jose Gurdwara, San Jose
October 24 2010 Navratri Hungama
October 24 2010 Dia de los Muertos Festival, Oakland
October 26 2010 Smart Modular, Newark (PRIVATE)
October 26 2010 UC Berkeley, day 1, Berkeley
October 27 2010 UC Berkeley, day 2, Berkeley
October 27 2010 Boston Scientific Corp.,San Jose
October 28 2010 UC Berkeley, day 3, Berkeley
October 29 2010 Japanese Community Youth Council Halloween Party, SF
October 30 2010 Mexican Neighborhood Shopping Center, San Mateo
October 30 2010 Cumberland Daly City Church, Daly City
October 30 2010 Mexican Neighborhood Shopping Center, San Mateo
October 30 2010 People’s Baptist Church Health Fair, Oakland
October 31 2010 Tzu Chi winter health fair, San Jose
November 02 2010 De Anza College, day 1, Cupertino
November 03 2010 De Anza College, day 2, Cupertino
November 04 2010 De Anza College, day 3, Cupertino
November 05 2010 Milpitas Police Department
November 07 2010 Presbyterian Church, SF
November 08 2010 CCSF, day 1, SF
November 09 2010 CCSF, day 2, SF
November 12 2010 Milpitas Police Dept, Milpitas (Open to public)
November 15 2010 AT&T, San Ramon (PRIVATE)
November 15 2010 AT&T, Pleasanton (PRIVATE)
November 16 2010 Stanford University, day 1, Palo Alto
November 17 2010 Stanford University, day 2, Palo Alto
November 30 2010 Santa Clara Valley Water District, San Jose
December 05 2010 St. Elizabeth Catholic, Oakland
December 27 2010 West Coast Chinese Christian Conference
December 28 2010 West Coast Chinese Christian Conference

Dine at Chili's on Monday Sept. 27th, 2010

noreply@blogger.com (Tinygami) — Fri, 24 Sep 2010 23:06:00 +0000

www.createapepper.com
Dine at Chili's on September 27 and all profits go to St. Jude Children's Research Hospital®.

I know where I'll be eating on Monday. Dining for a cause! This is Chili's nationwide (and in Puerto Rico) fundraiser for longtime charitable partner, St. Jude Children's Research Hospital(R) in an effort to raise $50 million in 10 years to support the St. Jude mission of finding cures and saving children.

Introducing Tami's Stem Cell Donor!

noreply@blogger.com (Tinygami) — Tue, 21 Sep 2010 20:19:00 +0000

I'm sure you've all wondered at least once or twice: Who is Tami's donor?

This is Scott, the person who gave Tami a second chance, literally saving her life, by donating his stem cells to her. Scott joined the marrow donor program registry in 1994 and was quite surprised when he was contacted in May of 2009 and told he was a potential match for a patient in need.

Statistics held true. It's said that most patients will find a match within their own ethnic group. Scott is part Japanese but also part Native Hawaiian and Chinese. And even though he is multi-ethnic, he was a perfect 10/10 match for Tami who is of Japanese descent.

Scott's story about how he became involved in the National Marrow Donor Program began years ago with a little girl, stricken with Leukemia, named Alana Dung. In his own words by email he said:

I can't help but think how crazy it is, that if I didn't see Alana Dung's donation poster at campus center at University of Hawaii at Manoa when I was 19 years old, I would have never gone up to the donation booth and registered. Fast forward now 15 years and it has made a difference. How incredible.

Adelia Dung hugs daughter Alana.
Photo by Alvin Chung from the Star-Bulletin

Little Alana Dung lived in Hawaii, had Leukemia and was 3 years old when she passed away after relapsing following a bone marrow transplant from an anonymous donor in Taiwan. Her family has since created the Alana Dung Foundation "To encourage research efforts by providing financial support to worthy research organizations and individuals throughout the world for clinical studies and research directed at improving the quality of life for sick children, improving treatment and preventing disease" as her legacy.

I actually heard about Alana when I was working on creating Tami's donor drive effort. When Alana's parents were told she would need a marrow transplant the state of Hawaii literally rose up to save her. Over 30,000 people joined the registry in 2 months time. That is a phenomenal number based on both the total quantity and speed the registrations were gathered in. Of the 30,788 people who joined the registry to try to help Alana, one (Scott) would go on to help Tami overcome Myelodysplasia by donating his stem cells to her 15 years later.

Mokumanamana and the "Tourist" Hawaiian Islands

Scott, a doctoral candidate in archaeology at the University of Hawaii, says the timing of the donation request posed a potential conflict. He was about to depart on a field work expedition to Mokumanamana (aka Necker) Island, (a very small, remote and inhospitable island) many miles from the Hawaiian tourist destinations most of us are familiar with.

After talking to trusted friends and family members Scott ultimately followed his desire to help others in need and decided he wanted to give the donation. But he was concerned about the timeline and wanted to give the donation as quickly as possible so he would have more recovery time before leaving on a 21 day "Survivor" like research marathon on Mokumanamana Island .

Doctor's had first considered a bone marrow donation rather than a stem cell donation for Tami but due to Scott's upcoming field work, and the possibility of lingering soreness at the donation site if he gave marrow, Tami's doctors decided to do an adult stem cell donation instead (aka PBSC or Peripheral Blood Stem Cell). This meant that Scott took a medicine called filgrastim for several days to stimulate the marrow production in his bones, causing stem cells to be released from his bone marrow into his bloodstream to be harvested.

Stem Cell Donation Day!

While the Be The Match website says:

PBSC donors can expect to experience a headache, or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection. Most PBSC donors report that they feel completely recovered within 2 weeks of donation.

Scott said the only side effect he experienced was that he was tired the rest of the day and slept a bunch but felt almost normal by the next morning.

Scott's fiance was at his side the entire day. He said it was great to have her there because he was supposed to keep his arms outstretched and clench two tennis balls, one in each hand, to help his blood circulate. So when his nose and face itched, she scratched it for him.

From Hawaii to Seattle... Scott's Stem Cell Donation arrived at Fred Hutchinson for Tami's transplant. This is how the majority of transplants take place, with the donor and patient living in separate cities and even countries. The stem cells can be flown to the patient's location so even international donations are extremely common and now comprise at least 50% of the transplants that take place.

You may recall that Tami's Transplant Doctor said that she received a "very good dose of stem cells." When Tami told Scott this he laughed and said they kept him on the apheresis machine (a type of centrifuge that separates the stem cells from the rest of the blood) for 8-9 hours. I've read most people are on the machine for around 4 hours at a time and may be asked to donate over the course of 1-3 days. He said they kept looking at him and he was doing so well and felt so good that they kept him on apheresis for twice the normal amount of time. The machine works by removing blood from one arm, running it through the separating machine, storing the stem cells and returning the rest of the blood back into the donor's other arm.

Post Donation with Nurse Betty at the outpatient clinic.

Says Scott:

Giving bone marrow/or stems cells is a really important thing to think about on so many levels. It's a part of your body, the very essense that creates blood and life in you. The donation process is also complicated by the fact that the recipient is anonymous. Very little information is given about the person to protect their privacy. It makes it very hard though to connect in a meaningful way to the person and struggle, and really assess what your true feelings are about the situation...

I think on a really basic level my first instinct is to help people, so I decided I had to try and do this before I left on my trip...

Scott and his family.

To finally have a face and a name and know that Scott is the person who saved Tami's life was quite overwhelming. I felt ecstatic and elated then broke into tears when I first saw him in a photo. It was like gaining a new family member but no one had a baby or got married. Such an unusual circumstance.

Our family can never thank Scott enough for his altruism and compassion. We would like to thank him for giving Tami back her health and her future. With the deepest gratitude I also want to say thank you for giving her back to her friends. She means so much to so many people, many of whom I've met in person, spoken to on the phone or have emailed with since her diagnosis. The way everyone has reached out to help her from her colleagues (past and present), neighbors, childhood friends and even people who don't know her but feel connected to her through her website and blog, has been overwhelming at times, in a great way. We realize and appreciate that it's because Tami is such an incredible person that so many people have made such incredible efforts to help her along this past year and a half.

Someday I'm certain I'll be creating a blog post with photos of Tami and Scott meeting in person for the first time. Until then, please continue to let others know about this blog and Tami's website. Please encourage them to consider joining the National Marrow Donor Program. Like Scott, they may one day be able to give someone the gift of life. How many of us are ever afforded such an opportunity? I joined the registry in 1995 and am still waiting for my phone to ring.

When I asked Tami if she wanted to include a personal message to Scott in this blog post she said absolutely. And here it is:

September 21, 2010

Dear Scott,

In February 2009, when I was diagnosed with Myelodysplastic Syndrome (MDS), I first asked what MDS is. I had never heard of the disease and we didn’t have a family history of the disease or leukemia. My doctors informed me that they’re not sure what causes the disease, but what they did know was the only way to cure the disease was to undergo a stem cell or bone marrow transplant. When I began to research the disease, I couldn’t believe it. I also couldn’t believe when the doctors said that I would need to find a donor and that the statistics for matching people of Asian descent was low. I thought how would I ever find anyone? I still to this day was amazed that three matches were found for me. I remember the Seattle Cancer Care Alliance Hospital (SCCA) letting me know that two of the three people were contacted but the best match was the first, an Asian male in his 30’s in the US. When I received my transplant last June 2009, they told me that the stem cells had to be flown into Seattle so I knew the donor wasn’t from Seattle, which has a large Asian population. To this day, I thought it will be someone in California.

So, June 30, 2010, one year post-transplant, I requested the form to fill out to learn the identity of my donor. I still remember the paperwork that I was given at the SCCA warning me that I may not ever know the identity as some people don’t reveal who they are. They also warned me that the person may be so different from me and wouldn’t want to be contacted. The only thing I thought is that I’m filling out the form and taking the chance that I would get to meet the person someday that saved my life. All I ever wanted to do was to thank him for giving me another chance.

Well August 27th was an amazing day for me. I received the letter from the SCCA informing me my donor was you and that you were from Honolulu. I thought I can’t just call you out of the blue so I’ll email you first hoping you would respond. You did. I then called you that night and you were everything that I imagined the person could be all these months. I could tell you are an extraordinary, considerate, and thoughtful person with a heart of gold. These past days emailing back and forth have been amazing and all I can say is that I can’t wait to meet you, your fiancé, and family in person. My family and I are looking forward to spending time with you in Honolulu. I'm hoping that more people can read our story and will hopefully generate more donors like yourself. I still can't believe its been 15 years since you donated at Alana's drive.

Thank you so much for the gift of life and for becoming a special person in my life.

Tami

And a few more people who wanted to say thank you to Scott! They include some of Tami's incredibly supportive colleagues, friends of the family, and some of my friends here in California and nationwide. I'll be creating a "Thank You Scott" photo album so If you would like to send a thank you picture to add to it please make one and email it to photo@helpingtami.org

Some of Tami's colleagues who, no joke, may be some of the most, if not the most supportive colleagues ever! Not only did many join the registry on her behalf, they held fundraisers, brought food by the house and did all kinds of things that made things easier for her and her family during this very difficult time. And it wasn't just her local colleagues who pitched in. It was a huge amount of love and concern from employees nationwide who reached out and did all they could to support her.

More of Tami's Colleagues

Friends at Flextronics

Family friends who wanted to thank Scott personally...

And a friend who recently moved to the islands giving a classic Hawaiian greeting!

Click Image to Enlarge

Besides asking me how Tami was doing each week, many of the people in this photo joined the registry on Tami's behalf and many helped out (hands on) with the donor drive effort here in California. Beside me are my friends Jewel and Chuck Savadelis who shot the PSA video at the donor drive at the Tech Museum last year. Maureen in the front left volunteered at the same drive. George, to the right of Chuck actively supports the Leukemia & Lymphoma Society. Loretta (peeking out from the center of the back row), Keith (third from the right in the second row), and John (to the right of Keith) all helped to produce the What's up Wit' That episode about Bone Marrow Donation that won the Wave Award last year and aired nationally on Public Access TV. And Keith, Loretta and John all volunteered at the Tech Museum donor drive. You can see John holding a sign in the video and Loretta sitting at the swabbing table.

People who know me well know I have a bunch of dog loving friends who I met years ago on Dogster.com. They were really a pillar of support to me when Tami was first diagnosed and throughout the time since. Over the years they have become like family to me and they in turn took an interest in Tami's illness as if she were their family too. In tribute to Scott they made these pictures to thank him for donating his stem cells to Tami...

Ming and Dottie. Dottie's owner thought for sure the photo would be of Ming calmly posing with his sign on and Dottie reaching over and eating Ming's sign. LOL

Rosie says Thank You Scott!

Daisy's owner, Wendy, was the person who helped me to maintain this blog back when we were posting every day with updates about how Tami was feeling and doing. Wendy has been a longtime member of the National Marrow Donor Registry and has been contacted on several occasions as a potential donor. So far she has not had the opportunity to make a donation to a patient in need as better matches were located in two instances. Sadly, the one patient she was the best match for became too sick to receive a transplant.

And this is my pup Kitai who was very happy to pose for this picture.

So Thank You to Scott from all of us! The debt of gratitude is immense and can never be truly expressed. We look forward to one day thanking Scott in person for his selflessness and hope his story will inspire others who have been afraid to join the marrow registry to go ahead and sign up. Maybe they will also be able to save a life someday.

CLICK HERE to learn how you can join the marrow donor registry in person or using a mail in test kit!

An update from Anh who also suffers from MDS

noreply@blogger.com (Tinygami) — Wed, 15 Sep 2010 19:10:00 +0000

Friends,

My family and I want to thank you for all of the love and support you have shown us over the last year. Words will never be able to adequately express our gratitude.

An update and good news are in order.

With regard to my health, last summer’s bleak situation has significantly improved. I am responding to medication, my blood counts are up, and I have not needed a transfusion since January. I am working my full office schedule and going to the gym every day. Even though I still have MDS, the future looks positive.

While we have not found a match for me, the work we have undertaken together has been nothing short of remarkable. We have added approximately 10,000 new donors to the National Marrow Donor Program’s Be The Match Registry. Every one of these donors gives hope to those who need a transplant now, and to those who may be diagnosed with a blood cancer in the future. In fact, we know for certain that three people we registered have matched and donated to persons needing a transplant. That means we have saved three lives in addition to potentially many more in the future!

Our efforts have attracted the attention of the media, in particular People Magazine. I was flattered to have been recognized by People as one of their “Heroes Among Us.” Through October 8, the magazine is conducting an online vote for its “Hero of the Year.” The winner will receive a $10,000 donation from OnStar to be directed to the charity of the winner’s choice. If we win, we would direct the money toward further donor registration efforts. You can vote as often as you would like (no registration necessary) at www.people.com/readerhero.

Simply put, I am not a hero -- we are all heroes. We are all heroes for registering ourselves and encouraging others to Be The Match for someone in need. Together, let’s continue to save lives and provide hope.

With all best wishes,

Anh

Read the entire People Magazine article about Dr. Anh Reiss by CLICKING HERE

Michelle Maykin Memorial Donation Protection Act (SB 1304)

noreply@blogger.com (Tinygami) — Sat, 04 Sep 2010 04:20:00 +0000

Cross posted from Team Matthew's Blog:

Call for HELP/ACTION!!! Please help out by passing this message along to your friends and family.

The California legislature recently passed the Michelle Maykin Memorial Donation Protection Act (SB 1304), which is a great victory for its supporters who told their state representatives of this Act’s importance. Now, we need your help in asking Governor Schwarzenegger to sign this bill, which would require all California employers to allow paid leave to anybody who donates their marrow. Until now, work obligations or inability to obtain the necessary time off were one of the largest causes of donors being unavailable to give marrow. The legislation includes the following provisions:

All California employers will be required to grant an employee a leave of absence up to five days to donate their marrow to another person

Any period of time taken from work to donate marrow will not be considered as a break in continuous service for the purpose of his or her right to salary adjustments, sick leave, vacation, annual leave, or seniority.

During any period an employee takes leave to donate, the employer shall maintain and pay for coverage under a group health plan for the full duration of leave.

An employer may require an employee to take up to five days of earned but unused sick or vacation leave for bone marrow donations, unless doing so would violate the provisions of any applicable collective bargaining agreement.

Please tell the Governor to quickly sign this important legislation, as for every person who called to donate but are unable to, there is a patient who is less likely to receive a life saving transplant. You can send an email to him at http://gov.ca.gov/interact#email or contact him at:

Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-558-3160

Below are some possible talking points that you can include in your letter to the governor. Include them but, if possible, you should also make your message personal. Tell the Governor what marrow donation has meant in your life and why you believe that this legislation is important. This chance to share your story is a very convincing message to the Governor.

Talking points:

I support the Michelle Maykin Memorial Donation Protection Act, SB 1304, because it will reduce barriers to marrow and organ transplantation by increasing the likelihood that a matched donor is able to donate.

Each year, 10,000 people are diagnosed with life-threatening diseases such as leukemia and lymphoma which can be treated with a bone marrow transplant.

Many patients with blood-related diseases search the national Registry of adult volunteer marrow donors to find an unrelated matching donor for transplant. An unrelated transplant may be their best and only hope for a cure, as most people do not have a matching donor in their family.

Matched marrow donors are often required to miss a few days of work to complete their donation and SB 1304 would make the decision to donate easier by eliminating the potential financial burden caused by missing work.

Want to run a 5K or a 1K for a great cause?

noreply@blogger.com (Tinygami) — Fri, 03 Sep 2010 23:01:00 +0000

The "Be The One Run" (hosted by "Be The Match" aka the National Marrow Donor Program) is a walk and run event for people of all ages and fitness levels. It includes a 5K, a 1K and a 25-yard Tot Trot. Be The One Run unites communities nationwide determined to cure patients with diseases like leukemia and lymphoma. Every step you take helps patients receive the marrow transplant they need.

Race locations and dates
Be The One Runs will be held in:
Atlanta, Saturday, Oct. 30, 2010
Long Beach, Calif., Saturday, Nov. 6, 2010
Minneapolis / St. Paul, Spring 2011

You have the power to heal
You have the power to stop someone from dying. Be part of the Be The Match® movement to help all patients receive the marrow transplant they need, when they need it. Be part of the Be The One Run! Walk, run, donate or volunteer to give patients a second chance at life.

For more details please visit:
http://www.betheonerun.org

Cornell University 2 Day Marrow Donor Drive

noreply@blogger.com (Tinygami) — Thu, 26 Aug 2010 17:06:00 +0000

If you don't live in NY but know someone who does please let them know about this drive. Thanks for any help! This is a two day donor drive with two locations to register each day. Look for the Cammy Lee Leukemia Foundation booth.

August 31st - Cornell University

11am – 3pm | Ho Plaza

5pm – 8pm | Robert Purcell Community Center

_________________________________

September 1st - Cornell University

11am – 3pm | Ho Plaza

5pm – 8pm | Robert Purcell Community Center

_________________________________

http://www.cllf.org/index.php/marrow-drives.html

Rest in Peace Barry Pham :(

noreply@blogger.com (Tinygami) — Fri, 06 Aug 2010 10:04:00 +0000

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:
_______________________________________________________

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

_______________________________________________________

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

_______________________________________________________

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"

1 Year and 14 Days - Stem Cell Transplant Update

noreply@blogger.com (Tinygami) — Wed, 14 Jul 2010 16:17:00 +0000

So here is the big news: After going through extensive testing at the one year anniversary of her stem cell transplant, my cousin Tami's remission continues. (YAY!) The testing she underwent showed she has no Myelodysplastic cells in her bone marrow. During the recheck she also had to get 7 vaccinations. This is because receiving a stem cell transplant is like having the immunity of a baby so the vaccinations help to strengthen her new immune system and protect her.

Now not only is she driving again, Tami was given the all clear to go back to work part time. Her life interrupted is beginning to return to normal.

Tami does continue to suffer from a mild case of Graft vs Host disease. Unfortunately she may be dealing with GVHD for months or years to come. GVHD is when the donor cells don't realize they are in a new body so they are attacking Tami's tissues as if they are foreign bodies invading the donor cells original body. For now her doctors have placed her back on a mild steroid that is keeping the GVHD under control.

She has requested to meet her stem cell donor. The way this works is that her information is now provided to the donor and he can make the decision whether to contact her or not. They said sometimes it can take months for the person to contact so we'll see what happens. If her donor is reading this, and would like to meet Tami but is afraid he will be publicly outed here on the blog: Please let me me assure you we will honor whatever level of privacy you request. If you want to be featured in the blog I would be happy to give you this space to tell your story. If you would prefer to remain anonymous to the world we will make no mention of any details of who you are, where you live or what you do :)

And this is just funny: Last year while spending 4 months in Seattle receiving her transplant and recovering from the procedure, she and her Auntie (who was her caregiver) would go out shopping whenever Tami felt up to it. Looks like they were a good shopping team.

But can you believe they weren't shopping together when they bought theses matching jackets last month? LOL Tami and her Auntie were 275 miles apart when by chance, they both chose the same floral print jacket. LOL

Blood Drive - A Giving Back Event Hosted by Roger Contreras

noreply@blogger.com (Tinygami) — Thu, 08 Jul 2010 15:38:00 +0000

Blood Drive - A Giving Back Event Hosted by Roger Contreras

Saturday, August 28, 2010
12:00pm - 5:00pm

Gabby's BBQ Restaurant
4659 Telephone Road & 610
Houston, TX

Please contact Roger by phone at (832) 848-6705 or view the "I have MDS" group page on Facebook for more information.

If you can, Roger asks that you please RSVP as soon as soon as possible to make sure they have adequate staff to accomodate all donors.

Roger continues to recover from the stem cell transplant he received last year. Because Roger needed numerous blood transfusions while waiting for his transplant, giving back and helping others in need has become his mission.

If you live in Houston please consider attending. If you live somewhere else but know someone else who lives in Houston, please let them know in case they would like to donate :)

Pantene Beautiful Lengths Hair Donation

noreply@blogger.com (Tinygami) — Tue, 29 Jun 2010 22:20:00 +0000

Stacie here. I'm Tami's cousin who has been writing this blog on her behalf since her diagnosis in 2009.

Yesterday my awesome hair stylist and good friend Armando Sarabia (of Get Your Do Up) chopped off my hair!

I had decided at the beginning of the month that it was time to donate the hair I'd been growing the past several years and chose to donate to Pantene Beautiful Lengths. I chose Pantene (thanks to my friend Loretta for sending me a New York Times news article about them) because they make free wigs for women who are cancer patients. Needless to say, Tami's experience made the process more meaningful than the last time I did this.

As Armando was CUTTING MY HAIR OFF I couldn't help but notice, peeking between my fingers in the mirror, that he was looking at the camera and not my hair! *Gulp* I pointed out that looking at my hair might be a better course of action but he just laughed and assured me he is a professional and didn't need to look. Well, he was right. He cut my hair beautifully!

This is a close up of my reflection in the mirror from the picture above. All I could think was "EEEEEEEEEEEEEEEEK!"

Mission accomplished! The first time I did this in 2003 I sent Locks of Love 17" of hair. This time I'm sending an 18" ponytail to Pantene Beautiful Lengths.

A quick shampoo and Armando styled my hair cutting it all one length.

Triumphant. Both Armando and my hubby had been bugging me to cut my hair for the past two years. Hubby didn't want me to go quite this short but I figured it's only hair and will grow back.

And to top if off I ordered new business cards that reflect my new hair do!

Only a few people knew I was cutting my hair. Last night my hubby and I were having dinner with a large group of friends and I was meeting him at the restaurant as I attended a business networking event preceding dinner. It was hilarious to walk in with my new look. He was shocked. I thought he would be super happy since he'd wanted me to cut my hair for so long, instead he was super stunned. By the end of the night he was loving the new do, but it took a while for him to decide if he liked it or not.

Taaa Daaa! My friend Kathleen took this photo of the front of me at the networking event with her iPhone.

And here's another pic with my friend Carl Mindling.

If you want to grow your hair out to donate, CLICK HERE to view a past post about how I grew my hair so long in the first place. To be honest you might start to feel a bit like a sheep, growing its wool out to be shorn, but when you send in that ponytail knowing you're helping a person in need, it's so worth it.

Update: Jimmie Johnson Wins the Pepsi Refresh Challenge!

noreply@blogger.com (Tinygami) — Tue, 29 Jun 2010 19:17:00 +0000

Thanks to everyone who voted for NASCAR's Jimmie Johnson in the Pepsi Refresh Project. Thanks to you his idea to create pediatric transplant grants for children who need stem cell and bone marrow transplants was voted #1. This means the "Be the Match (aka the National Marrow Donor Program) will receive $100,000 from the Pepsi Refresh Project to help children in need.

Please Vote to Support Kids Undergoing Marrow Transplants

noreply@blogger.com (Tinygami) — Sat, 19 Jun 2010 03:03:00 +0000

NASCAR driver Jimmie Johnson has a dream to provide financial relief for kids undergoing bone marrow transplants through the Be The Match Foundation. Your vote will decide if his idea is funded by Pepsi Refresh. No registration needed. Just click on the vote button under Jimmie's picture. That's him to the left.

Thanks for any help!

CLICK HERE to vote online

Update on Tami - 11 months post transplant!

noreply@blogger.com (Tinygami) — Fri, 28 May 2010 16:29:00 +0000

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 :)