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

I Am Desperate for Your Help

2012-01-24T23:36:00.001-08:00

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.

This is Janet's Flyer. Please print and hang it where ever you can.

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

This is the QR code to Janet's video on Youtube. Please share it with everyone you know:

Tami Met Her Donor Scott at a Be The Match Fundraiser

2011-12-30T16:32:00.001-08:00

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

2011-06-09T09:53:00.001-07:00

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

2011-03-23T17:00:00.001-07:00

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

2011-02-14T10:29:00.000-08:00

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

2011-02-04T00:55:00.001-08:00

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"

2011-01-05T10:10:00.000-08:00

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

2010-11-14T01:37:00.000-08:00

CLICK HERE to read the entire article

The Wish Upon a Wedding Shining Star Award

2010-11-13T13:30:00.000-08:00

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

2010-11-11T17:29:00.000-08:00

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

2010-10-26T14:38:00.000-07:00

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

2010-10-22T12:20:00.001-07:00

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

2010-09-24T16:06:00.000-07:00

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!

2010-09-21T13:19:00.000-07:00

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

2010-09-15T12:10:00.000-07:00

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)

2010-09-03T21:20:00.000-07:00

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?

2010-09-03T16:01:00.001-07:00

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

2010-08-26T10:06:00.000-07:00

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 :(

2010-08-06T03:04:00.000-07:00

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

2010-07-14T09:17:00.001-07:00

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

2010-07-08T08:38:00.000-07:00

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

2010-06-29T15:20:00.000-07:00

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!

2010-06-29T12:17:00.000-07:00

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

2010-06-18T20:03:00.000-07:00

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!

2010-05-28T09:29:00.000-07:00

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

2010-05-20T21:18:00.000-07:00

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

2010-05-17T00:57:00.000-07:00

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

2010-05-09T00:45:00.000-07:00

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

2010-05-07T11:17:00.001-07:00

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

2010-05-05T14:33:00.000-07:00

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.

UCLA Bone Marrow Drive May 5-7, 2010

2010-04-30T02:10:00.000-07:00

Click on the image to view and read the letter Janet received.

I have mentioned Janet Liang on Tami's blog from time to time. Janet is a young woman who was diagnosed with leukemia and is currently undergoing round 7 of 8 rounds of chemotherapy in an attempt to knock the cancer back and attain remission. Hopefully she will and the remission will be long term. If the many months and 8 rounds of chemo fail, a bone marrow transplant will be her only hope at being cured and living a long and healthy life.

With the help of UCLA Vice Chancellor Janina Montero UCLA (Janet's alma mater) will be hosting a marrow drive for Team Janet.

Please help me to spread the word about this event:

Bruin Plaza
UCLA Campus
May 5-7, 2010
10:00 am-2:00 pm

Already in the registry? Volunteers are needed. If you can help please email Gloria at gchi@a3mhope.org with the date/time you are coming and your phone number. Thanks!

Currently there is no match for her in the national registry so, thinking it's better to be prepared, Janet has kept up with raising awareness as to not only her need, but the need thousands of other patients who are dealing with the day by day search to find a marrow match in time to save their lives.

While she has been sick, Janet has been really busy emailing and writing people. I had not heard from her in quite some time and was glad that she messaged me today to ask a favor in helping her to publicize an upcoming marrow drive at UCLA.

Said Janet in her note to me:

"It's not just about leukemia for me, it's about fighting cancer in general ... and this applies to such a huge demographic suffering from illness, young and old."

Catching Up

2010-04-26T12:03:00.001-07:00

Stacie here. Sorry for the lack of recent posts. I was sick with not one but two colds back to back. The first was really bad. Knocked me off of my feet for about 5-6 weeks. I was well for about 4 days then came down with a sore throat and another new cold that's lasted a couple of weeks.

During that time I had barely been posting here and in my own blog that I run for my company. Am finally well again and am playing catch up. I'll be calling Tami for an update, sharing some patients' updates, there have been both highs and lows in the past two months, and here's a great video I saw over on Team Haupt's website I wanted to share:

If You Live in California Your Help is Needed

2010-03-31T00:00:00.000-07:00

If you've been reading Tami's blog since last year you'll remember Michelle Maykin. Michelle was a beautiful young wife, daughter, sister, cousin and friend to those who loved her most when she passed away last summer while fighting Leukemia. While a bone marrow match was never found for her, the efforts of Michelle and her loved ones helped over 18,000 people to join the National Marrow Donor Program as potential donors. So far four of those 18,000 turned out to be matches for other patients in need. With dedication and passion her mother has been working hard to continue the fight in Michelles name and with the help of a local Sentaor is very close to creating a new law to help people to become donors.

The "Michelle Maykin Memorial Donation Protection Act,” will allow private and public sector employees paid time off for organ or marrow donation. Donors would no longer have to worry about the financial burden of their gift. We know that this will ultimately lead to more registered donors and more lives saved.

Please Sign the Petition

The following post is from Michelle's blog and was written by her sister Melanie on behalf of her family:

It’s been 8 months since Michelle left us and the pain is still raw. There is a huge emptiness inside me and I continue to grieve for what has happened. I hang on to so many of the moments I shared with Michelle, afraid as more time passes that I am leaving her behind.

We continue to honor Michelle’s wishes and are focused on helping patients so that something positive can come from this horrible reality. My mom has been working hard with political leaders and the community to continue helping those in need of bone marrow transplants. In February, Senator Mark DeSaulnier of Concord, CA introduced Senate Bill 1304, the “Michelle Maykin Memorial Donation Protection Act,” that will allow private and public sector employees paid time off for organ or marrow donation. Donors would no longer have to worry about the financial burden of their gift. We know that this will ultimately lead to more registered donors and more lives saved.

HOW YOU CAN HELP

For SB 1304 to pass, it has to go through the legislative process. The next step is for the bill to go through the Senate Labor and Industrial Relations Committee where it is reviewed and then voted up or down. The committee hearing will be held on April 14, 2010. Here is how you can help pass SB 1304 out of the Senate Labor and Industrial Relations Committee and move it to the next step of the legislative process:

1) Sign our online petition to show the widespread community support for SB 1304.

Link for Online Petition

2) Tell your friends and family to sign the petition

3) Fill the room at the Hearing on April 14 in Capitol Building (9:30 am in Room 2040)

4) Spread the word by emailing friends and family with the above message to get them involved. Log onto your favorite networking sites and ask everyone you know to sign the petition or send a letter of support:

Senator Mark DeSaulnier
State Capitol, Room 2054
Sacramento, CA 95814

Passing this bill was something Michelle dreamed about and worried we couldn’t get done. We are now so close but we need you to succeed. With your help, we can save more lives and prevent families from having to go through what mine is struggling with everyday.

Thank you so much for all your support,

Melanie

Link to pre-drafted letter to be signed: Pre-Drafted Letter

Link to detailed Senate Bill 1304: SB 1304 Bill

Winter Olympics 2010

2010-03-06T12:48:00.000-08:00

Oh man was I shocked when I found out that Tami was in Vancouver attending the Winter Olympics! She has always been a fan of figure skating so I was thrilled for her when I found out she was there to see the Women's Final Skate and the Exhibition Skate! Here she is picking up her ticket at the broker's office.

She had a phenomenal seat!

She took this picture herself after the medals ceremony. WOW, right? From left to right: silver medal winner Mao Asada from Japan, gold medal winner Yu-Na Kim from Korea and bronze medal winner Joannie Rochette from Canada.

In her email Tami also said: "Michelle Kwan was at the final sitting in the section next to me. Katarina Witt was also there, I didn't a good shot of her. They sat together."

"I also went to the figure skating exhibition with all the winners. I met Scott Hamilton. He autographed my ticket from the exhibition as he was commentating in the section next to where I was sitting. I went and talked to him after the show. He was really nice. I took the pic when he was signing my ticket."

Downtown Vancouver at Robson Square

The cauldron was not too photogenic due to the barriers and fencing. Fortunately by the time Tami got there they had at least moved the barriers closer. For the life of me I will never understand why they were not able to come up with a better solution to allow visitors to take nicer pictures of the outdoor cauldron. LOL it's still a nice picture of Tami and Don. Too bad the cauldron doesn't look as good as they do!

Anyways Tami had a terrific time. The only really bad part of the trip is that she did catch a cold while she was there. Hopefully it won't linger and she'll be feeling better very soon.

Helping Matt and Chloe Win a Dream Wedding!

2010-02-25T11:29:00.000-08:00

Some of you may remember our friend Matthew Nguyen whose Leukemia relapsed last year at around the same time Tami was diagnosed with her Myelodysplasia. Matthew had to wait until last fall to receive a transplant but is now, like Tami, on the mend and wanting to move forward with his life.

Their love story.

After 3 engagement years, 2 attempts at wedding planning, and 1 cancer-free groom, they are ready to tie the knot!! They're fellow Bruins who fell in love and are elated to start their lives together. Wedding plans started in March 2007 but abruptly halted when Matt was diagnosed with leukemia. A year of chemo and Matt in remission, try #2 at plans for a May 2009 wedding. 3 months before the wedding, with all plans set, Matt relapsed and again, their wedding came second to leukemia. With a successful transplant last September, they are now ready to finally say our I-do!

Please vote for them to win the Crate and Barrel $100,000 wedding giveaway at the link below. Finalists are chosen by those with the highest vote counts:

VOTE for MATTHEW and CHLOE by CLICKING HERE

Bid on a Custom Cartoon Illustration of You

2010-02-24T02:04:00.000-08:00

This Auction is now Closed

Congratulations Michelle who won with a $175.00 bid

Bidding Began at $50.00

All proceeds will be donated in their entirety to help my friend and recovering Marrow Transplant Patient Roger Contreras. If you've been wanting to commission a custom, flirty, "Cartoon You" illustration (similar to the one of Tami), here is a great opportunity to order one and help someone in need at the same time. Pricing for a custom illustration normally begins at $250. This week I will be offering a single illustration* in an auction to help my friend Roger. Bidding will begin at $50 and last until noon (PST) Friday, Feb. 26th, 2010.

I will update the most current bid as quickly as possible here in this blog post.

Current Bid is:

$175.00 by Michelle

CLICK HERE to PLACE YOUR BID and to view the Terms and Conditions *The llustration includes a $250, head to toe, empty handed version (like the first one in the image above) of a custom cartoon similar to those seen on the GIRLgoesGEEK.com website that can be used for many purposes including on invitations, a business card/letterhead design or as an online web/blog/social media site avatar of yourself. If you would like the cartoon to be holding any item(s) additional fees will apply. Those fees will also be donated to Roger Contreras. Even after receiving chemo and losing his hair Roger was always smiling. With his sister/marrow donor after his transplant Roger was still smiling. As the year progressed and the complications set in and his recovery was set back further and further the pictures he posted contained fewer and fewer smiles. I'm just hoping this fundraising effort will help to put a little smile back on his face. Roger, a plumber by trade, has been unable to work ever since receiving his marrow transplant in March of 2009. This means he has been unable to earn any income for over a year as his illness (Myelodysplasia, the same blood cancer my cousin Tami also suffered from) had incapacitated him for much of 2008. Most patients who receive transplants cannot work for at least one year. Roger has had numerous post transplant complications that look as if they will keep him out of the work force even longer. You can just imagine how difficult it must be to be stressed over finances while trying to recover from a major medical procedure. This auction was the only idea I could come up with to help Roger. Please know your bid will be going to help a very deserving individual.

A BBQ Benefit is being held in Houston, TX to help pay for Roger's final round of cancer treatment

Date & Time: Saturday, March 6th at 1:00pm - 6:00pm

Where: Vara's Sport's Bar 2727 North Freeway Houston, TX 77009-3808 (North between Calvalcade & Patton) To see more details and RSVP on Facebook just CLICK HERE

Update on Tami

2010-02-17T01:12:00.000-08:00

Day +232 Post Transplant

I spoke to Tami yesterday by phone. The good news is there is no bad news persay. She continues to recover slowly but steadily.

Some of the pain in her joints has subsided slightly. There is a chance that this pain may be long term or permanent caused by the the chemo she received to prepare her for her transplant. Hopefully that won't be the case.

She is feeling better but is still too tired to be able to do the normal, everyday, things she would like to do. Because of a medication she is still taking she isn't driving yet. Being chauffeured around for the past year it will probably feel a little strange when she is able to finally start driving again.

On the good news front, she is not suffering from any active GVHD flare ups and her hair is continuing to grow back in :) Talking to her on the phone she sounds just like her old self. It's very comforting just to hear her voice.

Canadian National Chinese Stem Cell Drive: March 27, 4 Locations

2010-02-16T20:20:00.000-08:00

More then 20 Chinese ethnicity patients in Canada are searching for a stem cell donor that could save their lives. People 17-50 years of age are needed to join the Canadian OneMatch registry.

In the U.S. people 18-60 years of age can join the National Marrow Donor Program at any time and their results will also be checked to help patients in Canada.

Drive Details:

Saturday, March 27, 2010
11:00 AM to 5:00 PM

First Markham Place, Markhan
3255 Highway 7 East
Markham ON, L3R 3P9
Phone #: 905-944-1629

Splendid China Mall, Scarborough
4675 Steeles Avenue East Scarborough,
ON M1V 4S5
Phone #: 416-293-8871

Chinese Gospel Church, Chinatown
450 Dundas St W
Toronto, ON, M5T 1G7
Phone #: 416-977-2530

Aberdeen Centre, Richmond
4151 Hazelbridge Way
Richmond, BC, Canada
Phone #: Phone: (604) 270-1234
Directions: On the south-west corner of Hazelbridge Way and Cambie Road, one block east of No.3 Road in central Richmond.

To learn more please visit www.ChineseStemCell.ca or www.OneMatch.ca

Asian Marrow Donors Urgently Needed for Natalie

2010-02-04T00:12:00.000-08:00

Natalie is 8 years old. She has a little brother and lives in the San Francisco Bay Area. You can visit her marrow drive website www.HopeForNatalie.com for more information about how to join the marrow registry.

After five difficult rounds of chemotherapy last year, Natalie’s leukemia was in remission. Now it’s back and she has just weeks to find the bone marrow donor match that could save her life.

Natalie's greatest chance for a match is from those of ASIAN descent. Please help spread the word through your local Asian community. It doesn't matter where in the country you live. If you are her marrow match your marrow can be collected (the process is relatively pain free) and flown to the Bay Area.

To locate a drive nationwide CLICK HERE to use the zip code locater on the National Marrow Donor Program website.

Upcoming Bay Area Drives for Natalie are at:

Pleasant Hill, CA
Host: DKMS Americas
When: Saturday February 20, 2010
Time: 9am – 4pm
Location: Gregory Gardens Elementary School
Address: 1 Corritone Ct, Pleasant Hill, CA 94523

Berkeley, CA
Host: DKMS Americas
When: Monday, February 22, 2010
Time: 12 noon to 6pm
Location: Pauley East, MLK Student Union on Cal Campus
Address: Telegraph & Bancroft, Berkeley, CA

Hope For Natalie Nakatani from Patrick Biesemans on Vimeo.

“There are so many wonderful things to say about Natalie. She is curious, joyful, artistic, a great big sister, intelligent, silly, loves life and loves to be around people. We love her so much that it hurts deeply to even be separated from her at the hospital. Our little girl needs an Asian donor match urgently, so please do whatever you can to make it a priority to get tested at the bone marrow drive. There are no matches for Natalie right now. We hope that you will be the special miracle that will save her life.” – the Nakatanis

Jasmina's Memorial Service

2010-01-29T17:40:00.000-08:00

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

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

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

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

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

Rest in peace little angel.

Jasmina Passed Away Tonight :(

2010-01-27T21:12:00.000-08:00

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

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

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

Jasmina and Thea

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

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

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

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

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

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

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

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

PLEASE CLICK HERE to order a home test kit online

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

Please Say a Prayer for Jasmina

2010-01-27T17:16:00.000-08:00

Jasmina has taken a turn for the worse. After her stem cell transplant failed and her Leukemia relapsed her doctors discovered that her Leukemia came back in two different forms, one that is incurable. She had been holding her own until just a couple of days ago when she spiked a fever. She now has Pneumonia in both lungs and her lungs are filling with fluid because her body is not responding to the antibiotics.

This little girl has known pain and suffering no child should ever have to endure :(

She did get to meet President Barack Obama a few weeks ago. And up until a few days ago was having fun with her friends and visitors. But now her condition is critical and she may not be with us for much longer.

My heart is just breaking for her and her mom. Their friend posted in Jasmina's online journal today...

Jasmina's antibiotics are not working so her lungs are filling up with fluids. Her situation right now is critical. The doctors are trying to get the situation under control but Thea will have to make a difficult decision if this does not work.

So please say a prayer for this little girl who is going to be taken from us far too soon...

Tami's Post Stem Cell Transplant Update: Day +206

2010-01-21T00:51:00.000-08:00

Just spoke to Tami on the phone tonight. Because her recovery process will continue slowly but steadily, we decided for now we will be updating her blog once a month unless something newsworthy comes up.

Presently she is still feeling quite tired. Her back is finally better and she is doing low intensity core exercises and stretching to help strengthen her back and all of her muscles. It turns out that being sedentary and in bed for weeks and months at a time really messes up your spine and muscles so it will be a while before she really feels better.

She is now experiencing pain in her knees and elbows. Her doctor thinks this may be a side effect of the medication she is on to suppress her immune system to keep her Graft vs. Host Disease (GVHD) under control. They are going to try to wean her off of this medication. That means her joint pain may go away but her GVHD may come back. While definitely unpleasant, it's totally normal for marrow transplant patients to experience GVHD for months or even years post transplant.

Seattle Cancer Care Alliance Hospital, Seattle, WA.

Speaking of her GVHD, you may recall that Tami has had a few bouts with it now. First it attacked her intestines just a few days post transplant and then months later her skin, twice. Recently Tami took an out of town trip to Seattle because she is part of a GVHD clinical trial. Fred Hutchinson is a cancer research center that partners with the Seattle Cancer Care Alliance Hospital. They are leaders in addressing and solving many of the problems transplant patients face due to the participation of their existing patients in their clinical trials. Her doctors there were pleased with her progress and said everything was looking good.

While in Seattle she made a stop at Lululemon. While she was there undergoing her transplant one of the employees at their University Village location befriended her and showed her a lot of kindness so she dropped back by to say hello to Pat. If you're ever in the area be sure to go shop at Lululemon if you're looking for cute and comfy yoga inspired athletic wear.

More great news, her former daily then every other day doctor's appointments have now become once a month visits to see her doctor. Man, it seems like not that long ago when she was in the hospital for weeks and getting platelet transfusions every other day last April.

And last but not least her hair is starting to come back. When I saw Tami in October her hair was just barely beginning to grow back in. She said now she is starting to have sideburns again. That has to feel like some kind of milestone. We were guessing that hair grows at about a half inch to an inch a month so it'll be awhile before her hair is as long as it used to be.

So that's it for now. Until next month!

Upcoming Bone Marrow Donor Drives DC, MA, MD

2010-01-20T20:54:00.000-08:00

I wanted to share the upcoming Live Donor Drive Schedule for Swab a Cheek Save a Life. If you have any questions about any of these drives please contact the organization by CLICKING HERE.

Their mission statement?

"Giving Minority Patients a BETTER CHANCE to Find a Bone Marrow Donor"

If you live in these cities or know people who do, can you please spread the word to them about the drive dates and locations so they can tell others? You can share the link to this post on Facebook and/or Twitter:

http://helpingtami.blogspot.com/2010/01/upcoming-bone-marrow-donor-drives-dc-ma.html

And if you aren't already in the donor program but have been thinking about registering, one of these drives could be the perfect time to join.

February 6, 2010 (Saturday)
1:00pm to 3:00pm
The Hope Chinese Language School
Churchill High School – Cafeteria
11300 Gainsborough Road
Potomac, MD

February 19, 2010 (Friday)
6:00pm to 10:00pm
Heritage Café - Ridgeview MS
16600 Raven Rock Drive
Gaithersburg, MD

March 7, 2010 (Sunday)
1:00pm to 6:00pm
Metro West Basketball League
Framingham High School
115 A Street, Framingham, MA

April 14th, 2010 (Wednesday)
3:00pm to 6:00pm
Drive at the Rashi School Parent Teachers Conference
15 Walnut Park, Newton, MA

April 15th, 2010
8:00am to 3:30pm - (Thursday)
Drive at the Rashi School Parent Teachers Conference
15 Walnut Park, Newton, MA

April 18, 2010 (Sunday)
1:00pm to 4:00pm
Washington Hebrew Congregation's Mitzvah Day
3935 Macomb Street NW
Washington, DC

April 21, 2010 (Wednesday)
1:00pm to 3:30pm
Solomon Schechter
1 Commerce Way
Norwood, MA

May 02, 2010 (Sunday)
Time: To Be Announced
Temple Beth Am in Framingham
300 Pleasant Street
Framingham, MA

May 16, 2010 (Sunday)
Time: To Be Announced
Temple Beth David in Westwood
7 Clapboardtree Street
Westwood, MA

African Descent Marrow Donor Urgently Needed to Save Zyreal

2009-12-10T17:40:00.001-08:00

Edited 1/9/2010 to add: Zyreal's dad posted in his blog today that for now a second bone marrow transplant has been put on hold indefinitely. I am still asking that if you are not already registered in the donor program to still please join. If in the near or distant future Zyreal does need a transplant it will be wonderful if there is already a match in the registry so that he doesn't have to wait at that time for a match to be located.

Now back to the original post:

I'm begging here. If you are of African descent (No matter what continent you live on) and if you are not in a National Marrow Donor Program PLEASE consider joining to help save Zyreal. Also please forward this message to anyone you know who might be able to help him.

Zyreal is an adopted 7 year old boy who suffers from Sickle Cell Anemia. He recently underwent a cord blood (stem cell) transplant to save his life but today his family found out the transplant failed. His damaged marrow is now regenerating damaged blood cells and platelets but he needs to find a match from another person before undergoing a second transplant attempt. A better match must be found ASAP.

Ethnicity is crucial. Any patient in need of a marrow transplant will most likely find a match within their own ethnic group so Zyreal needs more people of African descent to join the marrow donor program in case they are the one who is going to be able to save his life.

Joining the registry is virtually pain free. In almost all countries 4 cotton mouth swabs are used to brush the inside of your cheeks. Donating isn't pain free but 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 Be the Match and enter your zip code to locate a live drive in your area:

http://www.marrow.org/JOIN/Join_in_Person/index.html

It takes 4 cotton swabs that you wipe on the inside of your cheeks to find out if you are the match that can help Zyreal. It can then take up to 10 weeks for the test to be processed. Zyreal cannot wait so please do not delay in locating a drive.

___________________________________________________________

ALL OTHER COUNTRIES

There is also a list of international marrow programs at this link:

http://helpingtami.org/asian_stem_cell_transplant_int_marrow_programs.html

Please contact a program near you to locate a live drive. In most countries testing is simply swiping the inside of your cheeks with 4 cotton swabs. It can then take up to 10 weeks for the test to be processed. Zyreal cannot wait so please do not delay in locating a drive.

A Message from Tami Day +155

2009-12-02T06:01:00.000-08:00

Hi Everyone,

I just wanted to share a belated Thanksgiving message with all of you from Tami:

Happy Belated Thanksgiving to all my family, friends and supporters,

These past months I have been overwhelmed with all of your love, support and messages in person, by email, on the phone, through the mail and through my blog and website. I am so thankful for each of you and I'm hoping the best for each of you in the coming year.

Love,
Tami

Stacie here, I am happy, no, make that thrilled to report that Tami is finally feeling better! Her back isn't perfect but continues to improve. Her body also continues to recover from the transplant. And big news, her hair is starting to grow back! At day +155 post transplant she's almost halfway to her half-year mark! That will be a reason to celebrate for sure. Maybe it'll catch on, celebrating half birthdays with a cupcake :)

Other patients we know are also reporting good news.

Matthew: Is recovering from his transplant and has moved out of the hospital and into an apartment near his hospital, very similar to how Tami did. Read his blog by CLICKING HERE

Zyreal: Is 7 years old and received his transplant and is recovering, still in the hospital. Read his online journal by CLICKING HERE

Jonathan Haupt will be receiving his mini haplo (a half matched) transplant from his sister Lynn on Dec. 8th. To learn more you can read his blog by CLICKING HERE

Our friend Roger, who also had MDS just like Tami, is continuing to recover from his transplant in Texas. He received it in March of this year but is having some complications now. It took Roger a year to receive his transplant because he had no insurance. Now he cannot work and is stressed about finances. If you would like to help Roger you can purchase a $5 "Cancer Sucks • I HAVE MDS" wristband or can make a donation to a fund I started for him here on Tami's website. Just CLICK HERE to place an order or make a donation.

On a sad note little Jasmina Anema is not doing well post transplant and it is feared that she has in fact relapsed and her Leukemia is returning. Recently the Make a Wish Foundation had arranged for her to meet and talk with President Obama as well as attend the annual pardoning of the White House turkey last week, but instead was rushed to the hospital due to a seizure. Her meeting with President Obama has been postponed for now. You can read more and watch a news video about Jasmina getting ready to leave for Washington D.C. by CLICKING HERE

There is now a follow up video to that story that you can view by CLICKING HERE

2 Easy Ways You can Help Janet Find Her Cure for Cancer!

2009-11-25T01:26:00.000-08:00

1. Business Cards
These are Janet's new business cards. You can order some from me (for free) to hand out to friends, leave a pile on your desk at work for colleagues or customers or keep a few in your wallet or purse to hand out to people you meet. CLICK HERE to place an order online.

This is the front of Janet's business cards

And this is the back

2. Flyers
If you have a computer and a printer and somewhere to hang or hand out a flyer (i.e. your office at work, a community bulletin board, your church, a club or group, etc.) you can help me to help Janet. There are two parts to this flyer, the information sheet that you can print and hand out and the tear away tabs that can be added to the flyer for bulletin boards so that readers can take one with them to remember the website url when they go back to their computer.

(These links will open in new browser windows and may take up to 1 minute to load as they are high resolution, printable flyers.)

CLICK HERE to download the PDF of this flyer.

CLICK HERE to download the tear away tabs that can be attached to the bottom of the flyer.

And this is Janet. You can visit her WEBSITE by CLICKING HERE. There you can learn more about her, how to join the National Marrow Donor Program and leukemia. For current updates visit her BLOG by CLICKING HERE.

Will you help her by joining the registry or by spreading the word that she needs more help and more people to register?

On August 24, 2009, 22 year old Janet Liang was diagnosed with acute lymphoblastic leukemia, a form of blood cancer. Janet is currently living in the Bay Area and is undergoing chemotherapy in the hopes that she can attain a successful remission. If the chemo fails she will need a stem cell transplant. She will then be faced with the daunting task of locating a marrow match from the national or international registries after tests revealed that her only sibling is not a match. Processing new donor samples can takeup to 2 months or more so it is crucial for people to be tested asap before her need becomes critical.

Already in the registry? No matter how long ago you signed up you will remain in the National Registry until you turn 61 years old. If you move or change your phone number you can update your contact information by CLICKING HERE.

Last year more then 4,400 people missed their opportunity to save a life when Be The Match was unable to locate them after they were a preliminary match for a patient in need.

Extreme Home Makeovers Features a Bone Marrow Donor and Recipient

2009-11-20T00:25:00.000-08:00

Did you miss last weeks episode of Extreme Home Makeovers? CLICK HERE to watch it on ABC.com. The Stott family has been through a lot. First Joey Stott got Leukemia. After receiving a bone marrow transplant from an anonymous donor located on the National Marrow Donor Program registry, her family suffered a second set back when their house caught fire and was damaged beyond repair by smoke and water damage.

Enter Ty Pennington and the Extreme Home Makeover crew. Not only did they build the Stotts a new house and barn for their sheep, they also brought Joey's bone marrow donor with them giving Joey her first opportunity to meet Tom since he saved her life. The picture above is Joey, seeing Tom walk out of the Extreme Home Makeover bus moments after being told he was there.

And this is Tom, one of the 7.4 million Americans who joined the National Marrow Donor Program in the hopes of someday saving a life.

Be sure you have a big box of Kleenex® with you when you watch this episode. It's a total tear jerker.

The best part is that it's a great segment about why to join the registry, what it's like to donate your marrow and there were even two donor drives held during the filming of this episode. And actor David Duchovny comes onsite and helps to build the new home for the Stotts. CLICK HERE to watch it on ABC.com.

A Message from Tami Day +135

2009-11-12T09:55:00.000-08:00

"My back is definitely getting better but still have a ways to go. Went to see my Doctor today and he says everything looks good. He cut my fluids in half and I'm not taking as many meds."

So sounds like she's feeling better. FINALLY! I'll continue to update this blog whenever I receive a change from her most recent status.

Thanks for checking in!

No News is Good News

2009-11-10T14:49:00.000-08:00

Well the reason I haven't posted any updates lately is because my information source has run dry. That translates to that Tami has been doing well enough on her own that my mom is no longer going to help her each day. I hate calling because you just never know when she might be taking a nap so I will send Tami an email right now and see if she can send me back an update on how she's doing :)

Wow I woke up this morning...

2009-10-29T13:54:00.000-07:00

And there was snow!

Came up for a short visit to see Tami. She looks great! Her back is still sore from her muscle strains, but regarding her transplant she's doing really well. In fact her magnesium level has suddenly risen so she will be able to reduce the amount of magnesium she has to infuse each day. This may mean she won't have to keep infusing the big bag of fluid that comes along with the high dose of liquid magnesium she had been receiving each day for the past few months. So that's really good news!

And guess who else I got to see....

An Update from Tami

2009-10-25T15:38:00.000-07:00

An email from Tami:

"If you didn't know I'm back home. Got back almost two weeks ago. I'm doing overall pretty good except for my back. Being on prednisone after the transplant has left my muscles really weak so it doesn't take much to pull something. I pulled my lower back and now my sides of my back. I'm going through physical therapy and also seeing a massage therapist and acupuncture therapist. It definitely has helped but I've got a little ways to go still.

If I haven't talked to you in awhile, I'm still catching up on email and vmail. Its been just great hearing from everyone. Thanks for everyone's support these past few months. I couldn't have gotten through all of this without you."

BLOOD & BONE MARROW DRIVE TODAY in HOUSTON, TX.

2009-10-24T08:37:00.000-07:00

Please help our friend Roger, help others.

TODAY!
October 24, 2009
11:00 a.m. - 3:30 p.m.
Questions? Call (786) 281-8316

Location: Gabby's
4659 Telephone Road
Houston, Texas

Roger will be hosting his first Blood & Bone Marrow Drive. The Gulf Coast Blood Center will be collecting the donations. They will be giving away free shirts. You will also be able to purchase the "Cancer Sucks / I Have MDS" wristbands for just a few dollars. "I Have MDS" is the name of Roger's cancer blog about his experience. Or you can CLICK HERE to order a wristband through Helping Tami.org. All proceeds go to Roger who has been unable to work since his transplant in March. He uses the money to help pay for parking at the hospital, pills and meals.

In the past 10 months Roger has received over 200 units of blood to keep him alive before and after receiving his stem cell transplant. He has been traveling down the long road of recovery since I met him earlier this year.

This is Roger losing his hair post-chemo to prepare for his transplant.

While Roger was more fortunate then Tami in that his sister was a perfect match, as a plumber by trade, he was uninsured when he was diagnosed delaying his treatment for a year until the transplant hospital was able to take him in as a patient in a special program for those without insurance.

After being the beneficiary of such generosity from the hospital and all of the people who had donated the blood and platelets he has used the past year, he wants to give back and help others. Will you drop by Gabbys and help him to make his drive a success? You can give blood or register to join the National Marrow Donor Program. Or do both!

Joining the marrow donor program takes about 10 minutes to fill out a registration form and to swab the inside of your mouth with a cotton swab. It's that easy!

Chinese and Asian Americans Please Help Me to Help Janet Liang

2009-10-22T02:53:00.001-07:00

People this is the real deal. Twenty two year old Janet Liang is a patient in critical need. She was diagnosed just months ago with acute lymphoblastic leukemia (bi-phenotypic).

This is Janet's desperate truth, her plea to help her save her own life that I read last night in her most recent blog post. Many of the people who she thought would reach out to help her have not:

"I became distraught because an urgent email was sent from a coordinator at Asian Miracle Matches to 70 of my closest friends in Southern California that I was willing to burden. Only 2 of them replied. No, I’m not popular at all."

I am hoping that all of you will reach out to help her. There is something you can do. You can join the registry or if you already have I implore you to reach out to anyone you know who is of any Asian ethnicity (particularly if they are Chinese) and ask them if they have joined the registry.

Janet's match could be anyone you know and of any Aisan ethnicity whether they are a friend, family or extended family member, a colleague, neighbor, or anyone you might happen to meet in your day to day life. The base requirements are that they are 18-60 years of age and in good health.

If they say they are not in the registry please direct them to any of the following websites to learn more about the pain free registration process and the donation process that is not, contrary to popular beliefs, excruciatingly painful. Most people who donate their marrow or stem cells suffer from relatively little discomfort if any at all. Nausea and a bruised sensation is usually the worst of it. They can learn more about the donation process on theHelpingTami.org website by CLICKING HERE.

They can also learn where live drives are held nationwide or how to order a home test kit at:

Live Drives Nationwide Using their Zip Code Locater
The National Marrow Donor Program website: www.BeTheMatch.org

Southern California Live Drives
Asians for Miracle Matches website: www.AsianMarrow.org

Northern California Drives
Asian American Donor Program website: www.AADP.org

More words from Janet:

"There’s an overwhelming amount of guilt I feel and frustration, because all I can do is keep asking and begging. That’s all I’m good for these days with no guaranteed promise of the ability to return your favors. I also understand that many of you have fruitful, promising lives/futures and are extremely busy. All I can really tell you is that I have about 3-4 months time to come up with some kind of bone marrow donor match. That is nearly impossible. The pressure is on, as my doctors and bone marrow transplant coordinator continuously remind me of the time-sensitive nature of treating this disease. If not, they’ll continue to drag it on and on, keeping me alive with one chemo round after another until I become resistant to it and there’s no other alternative except an umbilical cord transplant, which will buy more time and is currently in the research/experimental stages."

Tami's Home - Day +111 Post Transplant Update

2009-10-19T10:18:00.000-07:00

On the post transplant front Tami is doing really well. Her doctors are pleased with her progress and she is scheduled to go in for weekly testing for the next 6 weeks to monitor her progress. It doesn't seem that long ago that she was receiving daily testing to monitor her blood cell, potassium, sugar and other levels.

Her back however is still problematic. The long drive home from Seattle didn't make matters better, in fact her back was more painful upon her return home. But the pain is finally beginning to subside with the help of meds and massages. Her doctor in Seattle had explained that her lack of muscle tone due to the months of being so sedentary would increase her recovery time.

Our WUWT Bone Marrow Episode is Now Award Winning TV!

2009-10-19T09:49:00.001-07:00

I've received fantastic news!

Do you remember when I was a guest on the KMVT public access tv show "What's Up Wit' That?" earlier this year? I was representing www.HelpingTami.org to help spread the word about why ethnicity is so important when it comes to locating a life saving marrow match for patients in need and why the National Marrow Donor Program needs more people to join the registry.

CLICK HERE to View the Award Winning Episode Online

I was asked to be "the" guest but asked Loretta Beavers, the show's Producer, if I could invite a representative from the AADP.org and another patient's advocate. Loretta said yes and the pieces fell into place when Carol Gillespie, Executive Director of the Asian American Donor Program and James Nguyen, a representative from Team Matthew.org both agreed to join me on the show with host Andrew T. Willyoung.

So here's the great news... Drum roll please... The “What’s Up Wit’ That? Bone Marrow” episode was a BIG WINNER at the Western Access Video Excellence Awards!

It was entered in the new category:

Free Speech TV Community Activism Award - NEW:

Programming that encourages people to get involved in positive social change. Winner will receive a national broadcast on Free Speech TV reaching over 30 million U.S. households, and a special award from Free Speech TV. Submissions of all lengths, genres, and experience levels will be considered. The winner will demonstrate outstanding storytelling skills, exposing arguments for community engagement so powerfully that television viewers will find them irresistible.

Free Speech TV is the community access channel on the Dish satellite network.

As award winners the show receives a plaque AND the our Bone Marrow episode will be aired to a national audience of 30 million households on Free Speech TV!

Is this great news or what? Loretta and John, the co-producers of this episode, are very excited about the win! I would like to thank them for thinking of my cousin and inviting me to appear on the show. I had no idea when we filmed it that it would even be submitted to win any kind of award. It was just another step in my efforts to figure out how to help my cousin. And now since more people will see it, it will help to support donor recruitment nationwide!

CLICK HERE to view the episode online.

James, host Andrew T. Willyoung, Stacie and Carol

Please share this episode with anyone you think might be willing to join the marrow donor program if only they understood how vast the problem is. The episode dispels a lot of myths about the donation process including one of the biggest obstacles to recruiting new donors: That donating marrow is excruciatingly painful. It is not. The worst discomfort some people feel is temporary nausea for a few hours or mild pain that feels like a bruise. And seriously, isn't a little discomfort a small price to pay to give another person their life back?

Anyone who is between the ages of 18-60 years old and is in good health can become part of the solution and can help to save the lives of the 6000 Americans in need if a marrow/stem cell match can be found in time. To learn more about the donor program you can visit:

www.HelpingTami.org
www.BeTheMatch.org (The National Marrow Donor Program)
www.AADP.org (A Minority Ethnicities Recruitment Group)

Please Help Chenin Before She Runs Out of Time

2009-10-16T15:04:00.000-07:00

Chenin Iglowitz is a 35 year old medical professional (Labor and Delivery Nurse) who is suffering from refractory, large B-cell lymphoma which has resisted two courses of chemotherapy. A higher dose of chemo followed by a stem cell transplant is her only hope. That's Chenin with her sister at her sister's graduation from med school in 2008.

At this time her need to locate a life saving donor match is critical.

Chenin is of mixed ethnicities. Simply stated she is half caucasian and half asian. Her highest likelihood of finding a matching stem cell donor will be from someone else who is also of mixed Caucasian and Asian ancestry. But her match could come from other ethnic groups so just because you don't fit this exact profile doesn't mean you couldn't be her match:

Chenin's Father's lineage is: Ashkenazi Jew, Irish, Dutch, French and English

Her Mother’s lineage is 100% Cantonese

Please note matching ethnicities are not absolutes when it comes to finding a marrow match. Often Asians who are from different countries can and do match each other. For example a Japanese person may match a Korean, or someone from India may match a patient from the Philippines. Sometimes even more rare matches occur such as an Asian person matching a Caucasian or a Caucasain matching an African American patient. So no matter what your ethnic background please get registered to see if you will be able to help save a life.

Chenin working as a nurse in 2006 at Tripler Hospital, Hawaii.

• Joining the National Marrow Donor Program is pain free and most donors only suffer mild discomfort or none at all during the donation process.

• 70% of donations are now given by blood in a newer donation method called PBSC.

• 70% of patients in need will not find a match in time.

•Only 30% of those who do find a match receive their donation from a family member. 70% are given by strangers.

How to Get Registered to see if you are Chenin's Match:

If you fit this profile or know someone who does, PLEASE TAKE ACTION NOW! Chenin needs to receive her transplant while she is still healthy enough to undergo the procedure.

Donors must be 18 to 61 years of age, and in good health. Please join the National Marrow Donor Program to see if you could be Chenin's life saving marrow match. Time is of the essence. Registering is free of charge but donations are appreciated.

Live National Donor Drives: Locate a live drive on the Be The Match website by CLICKING HERE and entering your zip code.

Register by Mail: You can order a home test kit, consisting of a short form and 4 cotton mouth swabs, through the AADP web site. CLICK HERE to order a kit. Where the online form asks for 'Additional notes' be sure to enter "Request expedited processing for Chenin Iglowitz.”

International Programs: If you have friends that live in other countries please ask them to register where they live. If no match is located within the U.S. the international registry will be searched for a match. View the International list of donor programs by CLICKING HERE.

If you are a match for Chenin, or any other patient in need, you will be contacted. CLICK HERE to learn more about the donation process.

Chenin Today

Tami is home and more good news....

2009-10-12T00:19:00.000-07:00

Tonight Tami is back home with her family and sleeping in her own bed for the first time since arriving in Seattle on June 4th. I will call tomorrow for an update about how her trip home went and how she's feeling and post an update here in her blog.

I also have good news. Make that great news!

I just learned tonight that Matthew Nguyen received his stem cell transplant and is recovering at City of Hope Hospital in L.A. The match was not a 10/10 so it's likely he will suffer from GVHD but he now has a fighting chance of surviving the Leukemia that has been attacking him since his relapse in Feb of this year. Sending prayers his way and to the 24 year old anonymous donor who gave their stem cells to him.

After his first match backed out of making the donation to him in July he was reluctant to tell anyone about this donor until the transplant had taken place. More details here: http://teammatthew.org/blogs/?p=229

Today is Tami's Discharge Day! 100+ Days Post Transplant!

2009-10-08T00:23:00.000-07:00

Well the day has finally come. Tami is being discharged as a patient from the Seattle Cancer Care Alliance hospital. I haven't spoken to her but I'd imagine there is both happiness and some anxiety in a moment like this.

The doctors, nurses and her PA at the hospital have given her phenomenal care and have brought her so far in the last 4 months since her arrival there. To leave the security of one of the top transplant hospitals in the world probably causes most patients to feel a bit anxious.

So long Seattle!

When she returns home she will still be in good hands and will hopefully continue her post transplant recovery with few complications. The GVHD and infections she's been dealing with will take time to eradicate. By time I'm not talking days or weeks but possibly months and even years. It's all part of the process and I'm certain that Tami will face all of it head on as she has so far.

Her courage at going through the treatments and transplant is pretty overwhelming to me. I can only hope that if something similar ever happens to me I can be as brave as she has been.

I know that once home she will take great comfort in being with her family again and also know that she will still need to be careful and not over do things. Though she will be discharged today she won't leave Seattle until several days later. But this is a reason to celebrate so I wanted to share it with all of you here on her blog!

Helping Robert Yamada

2009-10-07T23:24:00.000-07:00

It's so easy. You can eat at certain restaurants on specific days, take classes or even get your hair cut...

Robert and his friends Devin and Sean who saved his life by performing CPR for 40 minutes until medical help arrived at the accident scene.

If you live in Spokane, WA. and want to help another person in need there is a young man facing what one can only imagine is one of the most difficult challenges any person can ever experience. Robert was injured in a swimming accident earlier this year and is currently paralyzed from the neck down. His breath comes from a ventilator and he is in Colorado at the Craig Hospital, the nation's number one spinal cord treatment hospital. Robert will have his best chance of recovery at this particular hospital so his parents reached out and got him accepted into the treatment program there.

Skyping with his brother's help to keep in touch with friends.

His wasn't a typical diving accident. He was wading into the lake to swim with his friends when he somehow must have slipped, hitting the lake bottom with his head causing the first 4 vertebrae in his spinal column to fracture. If you would like to follow Robert's recovery you can do so by Clicking Here and subscribing to his Journal.

Robert with his parents Renea and John

Insurance will only cover the first 3 months of his treatment leaving his parents to cover $80,000+ for his final fourth month of treatment at Craig. Because of this a steady stream of fundraisers is taking place in Spokane. I wanted to let all of you know so that if you live there you can participate by attending or volunteering at any of the upcoming events. If you don't live in Spokane but would like to make a contribution to help his family just CLICK HERE:

(More Photos and Story Below)

_______________________________________________________

When: Saturday, Oct 10th
Wine and Cheese Gallery Event
Where: Gallery of Thum 159 S. Lincoln Suite 151 Steam Plant Square
Time: Regular hours 11AM - 5PM AND EVENT hours 6 - 8:30PM
Cost: $10.00 ( All door fee will be donated to the Friends of Robert Fund)
This special event is being sponsored by the Gallery of Thum! The fine wines and cheeses provided by the Friends of Robert committee.

See the special artworks by select artists provided for the event. Editor, Charity B. Doyl of Northwest Women Magazine will be with us!

This months charitable focus is Robert Yamada who was recently paralyzed in a swimming accident on Lake Roosevelt. A percentage of all sales for the day will be donated to the Friends of Robert Fund.

If you can't make it during the event, stop by during normal business hours to support Robert. We have his silver bracelet that says "Pray Believe Expect Miracles" for sale for just $5.00. There is also a donation jar available.

Mark your calendars and come to this fantastic event sponsored by the Gallery of Thum!

For more information you can call Cecile at (509) 294-9234
_______________________________________________________

When: Oct 11th
Twigs Bistro Benefit Dinner for Robert
Where: Twigs Bistro - South Hill Location
Time: 5:00 to 9:00 PM
Cost: $60.00 per person
Twigs Bistro of Spokane, Egger's Better Meats and Just American Desserts are coming together to put on a wonderful dinner to benefit Robert Yamada.

Egger's Meats will be donating the prime rib and king crab, Just American Desserts will be donating the delicious desserts, and Twigs is donating their services!

Just $60.00 a plate. Make your reservations now by either stopping by the Twigs South Hill location or calling 443-8000. Don't miss this delicious dinner!
_______________________________________________________

When: October 12th, 2009
Haircuts for Friends of Robert Yamada
Where: Angelina Salon & Spa. 8701 N. Division Suite H
Time: 9 AM to Noon AND 2 PM to 7 PM
Cost: Only $15.00
The awesome stylists at Angelina's Salon & Spa are generously donating their time and talents on Oct 12th to cut hair for the Friends of Robert Fund. Each haircut is only $15.00 and ALL money collected will go to the Friends of Robert fund. Complimentary appetizers and beverages will be served. Tell your friends, co-workers,family and friends about this fantastic event. WALK INS ONLY Please! Thank you for your support!!!
_______________________________________________________

When: Saturday, October 24th
SELF DEFENSE CLASS
Where: Highland Park United Methodist Church 611 So. Garfield (Across the freeway from the old Costco)
Time: 5 - 9:30 PM
Cost: $40.00 Per Person
Self defense instructors Jerry Yamada and Brian Goodwin are donating their time and skills to teach us how to defend ourselves in any situation. ALL money paid to participate in this class will go to the FRIENDS OF ROBERT FUND.

Please no children under 15 yrs old.

Class size is limited, so call and make your reservation today!

Call Dawn at 991-4811 or 443-0754.
_______________________________________________________

When: Currently Ongoing Promotion
Lalo's Pizza & Calzones
Where: Lalo's Pizza 817 S. Perry
Call 533-5265 and order your pizzas today! Lalo's pizza is donating 15% off all pizzas ordered when you say YOU'RE A FRIEND OF ROBERT'S!

Enjoy a delicious pizza while helping add to our Friends of Robert Fund. You can either take your pizza already baked, or take it home and bake it yourself at a time more convenient for you and your family.

(Lalo's is located in the old excell building on Perry)
_______________________________________________________

Tshirt and Hoodies Sale
When: On sale NOW
Where: Egger Meats ( south hill store)
Time:
Cost: $15.00 tshirt / $35.00 Hoodies
The T-shirts and hoodies are ON SALE NOW. On the front is the word "ganbatte" which means "come on" or encouragement, written in Japanese charactures. On the back it says "Friend of Robert Yamada". They are both charcoal grey in color. Order yours today by calling Keri at 844-2816 or Patty at 413-3311 or Dawn at 991-4811.

Thank you for showing your support by wearing your t-shirt or hoodie today!!
_______________________________________________________

Upcoming Fundraisers are always posted on the www.FriendsofRobertYamada.org website

Robert and his girlfriend Brittany at the Craig Hospital

It will take months and possibly as long as two years to discover how much permanent damage was done to Robert's spinal cord. He may someday be able to breathe on his own and hopefully will regain the ability to move his arms and walk again.

A quiet moment at Craig hospital. Robert is now mobile using a breath controlled "puff and sip" electric wheelchair.

Yesterday Robert went out on his first field trip since arriving in Colorado. A trip to the aquarium with his mom, dad, nurse, respiratory therapist and other patients turned out to be a lot of fun and as his mom said in his journal, "A huge confidence booster." I hope to read more stories about new adventures in his journal very soon.

In case you're wondering, I don't personally know Robert but I do know his dad and uncle as I went to school and church with them when I was younger. When his Uncle posted on Facebook what had happened the day of the accident I don't know why but I felt an instant connection to Robert. Realizing what he and his family were facing I knew that they would need all of the love, support and prayers that people could give them, whether they know them or not. I know many of you who read Tami's blog don't know her in person but your prayers, support and encouraging messages you send have helped (me) so much that I just wanted to give back to another family in a similar situation of need.

Swab a Cheek Marathon

2009-10-07T21:16:00.000-07:00

Swab a Cheek, Save a Life is a wonderful organization that enrolls minority and multiracial bone marrow donors. They support the Gift of Life organization. Team Swab a Cheek will be participating in this year's Marine Corps Marathon in Washington DC on October 25, 2009. The team is looking for donations and support.

The marathon is a whopping 26 miles!! If a participate cannot run that far, there is a smaller 10K (6 miles) run also. If you would like to help out Team Swab a Cheek please click here to make a donation.

It is so important to enroll as many minority and multiracial donors as possible on the marrow registry. A minority or multiracial patient is more likely to match another person of the same ethnicity. We need as many people on the registry as possible.

Rest in Peace Nick Glasgow

2009-10-07T09:57:00.000-07:00

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!

Tami's Discharge Day from SCCA has been Scheduled!

2009-09-30T20:49:00.000-07:00

This is great news. It's been confirmed. Barring any complications Tami will be released from the Seattle Cancer Care Alliance Transplant hospital on October 8th to return home! YAY! She is doing well enough to go home!

Thanks to everyone for all of your prayers and good thoughts. We know they have helped Tami through her ordeal and I know you have all helped to lift the spirits of our entire family. I will keep you posted as I learn more about her move home.

Holding On to Hope... Please say a prayer for Nick Glasgow

2009-09-30T20:29:00.000-07:00

Tonight I read that Nick Glasgow has relapsed.

It took me a few minutes to let that sink in.

Each time I read about the relapse of another patient I've come to know of online it feels like a kick in the gut. If you recall, Nick is the 27 year old, 3/4 Caucasian 1/4 Japanese, Bay Area man who was diagnosed with an aggressive form of Leukemia this year. He's also the patient who was told there was 0% chance of him finding a marrow match. To that end his family, friends and complete strangers around the world rallied to his cause and in two months time two 10/10 matches had been located for him. He received his transplant about a month after Tami and had been dealing with many of the similar post transplant issues Tami has been dealing with.

The last blog post his Grandpa had posted on September 9th was one of great news. He said that Nick was "cancer free."

And then on the 28th he posted that the day before they had learned that the cancer had come back.

His Grandpa said:

"Nick took the dreadful news with great equanimity and shook the doctor’s hand and said “thank you for giving me a chance” with the transplant. From among the limited options left, Nick elected to have hospice care at home. Stanford will release Nick as soon as they have his graft/host disease under better control….which will be either Monday or Tuesday of next week. There is still a tiny sliver of a chance (one in a million) that Nick’s new stem cells will somehow overcome the cancer. Our high hopes for Nick’s recovery have been crushed by this terrible news and we are all sick at heart. Only a miracle can save Nick now."

So please, say a prayer for Nick. Keep him in your thoughts. Hold on to hope that Nick will receive another miracle, that his new stem cells will overcome the new leukemic cells and he will once again attain remission. Praying, praying, praying...

Baseball and Friends - Post Transplant Day +91

2009-09-29T10:05:00.000-07:00

So Tami is doing pretty well again. Her friend Liz treated her and my mom to a Mariners' baseball game recently. They had a great time but I'm not sure if the team won or lost. I do know they played the Yankees but that's all I know.

Tami has still been dealing with her skin peeling from the GVHD but it's under control. Her larger problem has been unrelated to her transplant. She somehow managed to pull her back and has been dealing with muscle pain. Hopefully that will subside soon. Especially in time for her move HOME! Within the next 2 weeks she may be heading back home to her kids, family and friends who have been missing her since she left in early June. I am seriously praying for no complications between now and then so that she can get back as soon as possible. I will keep you posted as I learn more.

And more friends, Limin and Jerry, came over to Seattle to visit Tami. Tami has been able to go out to have lunch and fun with her friends who live in Seattle. Things are slowly getting back to normal.

And this is just some of the art Tami has hanging at her apartment in Seattle. Courtesy of her kids, nieces and nephew. So cute right? Just thought it would be fun to share them with you.

AADP.org Volunteer Appreciation Day

2009-09-18T09:16:00.000-07:00

So last weekend the Asian American Donor Program.org held a volunteer appreciation day at the 300 San Jose Bowling Alley.

Due to my ankle injury earlier this year that lasted for about 4 months I didn't risk bowling and twisting it again.

As I walked in past the public alley I headed towards the "Back 9" private alleys.

Did you know bowling alley's had private sections for parties? I had no idea.

Almost everyone from the AADP was there including their Executive Director, Carol Gillespie, on the far left and their founder, Johnathan Leong, on the far right.

The girl in the stripes? That's Donna with her family. It was such a pleasure to meet them. Donna who is now 29 years old received a bone marrow transplant when she was 9. That's 20 years cancer free!

Her mom told me that at one point her doctors sent her home to die but her mother refused to give up hope. She tended to Donna and slowly she got better. It gives me so much hope to meet and hear about other patients who survived diseases like Leukemia.

One thing I find shocking and I hope you do too is that even now many doctors will tell their newly diagnosed patients that there is no hope they will find a marrow or stem cell match and send them home to die. If you ever hear of anyone who is told they have no chance of finding a match please tell them not to accept that answer. Earlier this year Nick Glasgow was told he had zero percent chance of finding a match and just two months later not one but two 10/10 matches were located for him. He received his transplant a month after Tami and is now in the same, long, recuperative process Tami is in.

The Back 9 lanes were really cute. Each lane is numbered by light on the floor. On the wall over the lanes were two large video screens that played music videos and two that featured special messages about the AADP volunteers.

Lots of people were bowling.

And there was even a private bar in the Back 9. Food was also provided with Burgers, chicken sandwiches and salads set up as a buffet.

If your group is looking for a unique place to have a party consider bowling! I think everyone had a great time that day.

Out of the hospital and feeling better. Day +77

2009-09-14T14:58:00.000-07:00

Tami stopped by her company's Seattle office the other day to get her laptop worked on and had a visit with her friends (colleagues) Liz, Mike and Stephanie. It's so great to see her out of the hospital again and getting some fresh air.

All in all there isn't a whole lot of news to report on how Tami is feeling.

Tami's GVHD is still making her skin flakey. Her doctors are already tapering back on her Prednisone so hopefully she won't need it too much longer.

Thankfully her viral tract infection is subsiding and she is no longer in any discomfort from it.

She is doing so well again that she only goes for a blood draw once a week.

On top of that she and my mom have been going shopping. I think that may be her favorite pastime while they are in Seattle.

And here are some photos of the gorgeous art work that fills the Seattle Cancer Care Alliance Hospital. When I visited Tami last month the art was very much a big surprise to me. I felt like I was in a museum instead of a hospital because there was so much of it and it was all so striking.

I'm glad the hospital is able to make the floors so aesthetically pleasing. It certainly helps to create a feeling of peacefulness for the patients to enjoy.

The piece above was a wall piece of glass art by artist Laurie Burns.

And close ups of the tiles of glass. It was really gorgeous.

I loved this metal bench by Steve Jensen titled "Swirls."

This piece had no tag so I don't know who the artist is or the title of the piece.

And I loved this koi painting titled "Balance" by artist Jeanne Keckler.

But this was my favorite piece. The tag on the wall said:

Carved from a naturally fallen cedar tree from Duvall, Washington, the Healing Tree has interpreted images from many cultures carved into it, including the breast cancer ribbon, a Japanese Reiki symbol, a heart as a symbol of love, healing hands that embrace a figure 8 as an infinite healing symbol, a Hopi Indian healing symbol of a badger claw, a Buddhist triskelion spiral, and an ancient Chiron healing symbol of a willow. All of these icons have been combined and interwoven, creating an abstract carving of love and hope.

The Healing Tree was carved by artist Steve Jensen from a naturally fallen cedar.

Artisan Pizza for Dinner? Day +72

2009-09-10T00:20:00.000-07:00

As of Monday Tami is back to being an outpatient and though she is still dealing with the lingering effects of both the skin GVHD and viral infection she is doing better. The GVHD is responding to treatment and the rash is healing. That means at the moment all of her skin is peeling. Not fun. And the other viral infection, while not gone, is also under control.

The Hickman Catheter that was implanted in her chest is now removed, hopefully for good. YAY! And now she has a pick in her arm to help with her infusions.

Here's something fun, when I was talking to my mom yesterday she said tonight she and Tami will probably have pizza for dinner. Oooh I'm jealous. It's not just any pizza...

While I was in Seattle I hoofed it on over to Zaw one night to pick up an "Artisan Pizza in the Raw" to bring home and bake for dinner. This is such a cool company. It's the most eco-friendly and gourmet pizza place I've ever seen. Among other features they say whenever possible they use seasonal, organic, unique, and local ingredients. Their delivery service is by bicycle and their shop has a "green" wall of plants, planted horizontally, that grow vertically to help create oxygen.

Here is the "green" wall.

And a close up. I don't understand how they get the plants to stay in place but somehow they do. The plants go in with their roots towards the wall but then the plants make a 90 degree turn and grow vertically. Very cool.

And this is the first pizza place I've ever been to that pairs their pies with premium beers and wines. LOL but their ingredients are so gourmet it only makes sense that their drinks would be less then typical. For instance here are a couple of pairings from their menu:

Shroom Fest
Gently sautéed portabella, crimini, and button mushrooms from Ostrom’s in Olympia meet roasted red onion, fresh thyme, garlic and shroom-enhancers of asiago and mozzarella.

Pairs with: Chardonnay, Porter

And this one...

Savory Savary
A combination of sliced Isernio’s hot Italian sausage,
maple-syrup-caramelized red onion and fresh organic sage. Served with a blend of asiago, parmesan and mozzarella.

Pairs with: Reisling, Premium Lager

This was our pizza that evening.

If you have the chance you should order one or two. They only take 10 minutes to bake. I wish we had a Zaw down here in California. Hope Tami and my mom have a great dinner tonight!

Matthew Needs our Help and Prayers

2009-09-05T19:42:00.000-07:00

Our friend Matthew needs our help now more than ever. For over two years now Matthew has been fighting Acute Myelogenous Leukemia (AML). In May of this year, Matthew received the good news that a potential donor had been found but was not available to donate until August 5th. Unfortunately, at the end of July, Matthew received devastating news, not only was his cancer back but his potential donor was no longer available and wasn't even in the registry anymore!!

Potential donors must be aware that if you are on the marrow registry you must be willing to donate your stem cells or bone marrow. Can you imagine having cancer and finding a match only to learn that the potential donor is unwilling to donate!! In his blog, Matthew states, "I do not know what is worse….knowing someone out there can save your live but won’t do it….or not having a match at all."

What happened to Matthew is so cruel. Please if you sign up to be on the registry you must be willing to go through with the donation. Someone that is dying is counting on you.

Fifty percent of the time potential donors are either unwilling (for a multitude of reasons) or for heath reasons are deemed by the doctors as ineligible to donate. So it is also very important that you take care of yourself and your health. Remember if you are a match for someone, you are saving their life!!

SF Bay Area Vietnamese Marrow Donor Drive Today

2009-09-05T18:13:00.000-07:00

It only takes a short registration form and 4 cotton swabs to join the National Marrow Donor Registry. If you are a match for Anh or another patient in need 70% of donations are now given through a blood harvesting method and not from marrow extracted from the hip bone. The harvesting process has improved dramatically over the years but few people know this.

Host: Team Anh - Save Anh's Life
Date: Sunday, September 6, 2009
Time: 9:30am - 4:00pm
Location: Compassion Meditation Center
Street: 17327 Meekland Ave
City/Town: Hayward, CA
View Map

This drive is to try to find a match for Dr. Anh Nguyen and the many other Vietnamese Americans (like our friend Matthew) all searching for a matching marrow donor.

Anh has the same disease Tami had, Myelodysplasia. She has had a few scares since her diagnosis but has been working hard with the help of her brothers to locate a match by holding numerous donor drives some small and others large. At the Marian Days Festival they signed up over 2000 new potential donors!

If live in the Bay area and are of Vietnamese descent or know people who are that live here, please let them know about this drive. This is an all day donor registration event. I'll even be there for a few hours helping out. I hope some of you read this and come by to join the registry. If you do make sure to find me and say hello.

GVHD is Under Control Day +65

2009-09-03T11:19:00.001-07:00

Tami is not up for visitors at this time.

Some good news. Tami's skin GVHD is responding to treatment. Despite the fact it messes up her blood sugar which then requires insulin to correct, her doctors resumed using Prednisone to treat her latest flare up. Her rash has already begun to subside so that's great news.

Unfortunately at this time Tami's immune system is once again even more compromised due to the Prednisone. It helps to reduce the activity of the donor T-cells which basically means it semi-shuts down her immune system becuase the T-cells are attacking Tami's own tissue. This time it's her skin. Last time it was her intestines.

You may have noticed that for the first time since June 22nd Tami's illustration does not include her Hickman Catheter. Her doctors determined that it may have been an infection in her Hickman Catheter that was causing her other infection so they removed it yesterday and will replace it with a new catheter in 48 hours. I hope they're right. It would be great if she could start next week free of infection and clear skin.

On the good news front I am excited for the opportunity I've been given to attend an event next week to mingle during a networking session and help to spread the word about the need for people of Hispanic and Latino descent to join the National Marrow Donor Program. I will be working with Ivonne from the AADP.org. Even though the AADP started out as the Asian American Donor Program they have added a Hispanic and Latino Recruitment Coordinator to their staff as they have evolved to encompass more ethnicities then just Asians. I'll post details about the event after it's taken place.

GVHD is Attacking Tami's Skin +62

2009-08-31T17:13:00.000-07:00

Aw man. Just when it seemed like the worst was over Tami developed two infections and now it turns out the rash that appeared on her skin last Friday before I left Seattle is in fact the Graft vs. Host Disease making a second appearance.

You may recall the first time was a week after the transplant that Tami's intestines came under attack by the new donor cells. Now it's her skin that the donor cells have identified as "foreign" to them. You might remember that the donor cells don't realize they are in a new body so Tami's tissue appears to be the invader that needs to be attacked by the donor cells.

She is also still being treated with liters of fluid to flush a viral infection out of her system along with IV meds. I can't even imagine how she is feeling right now. I felt like I was kicked in the gut when my mom told me on the phone this morning. Hopefully the new meds will get this latest GVHD episode under control quickly. GVHD can be moderate to serious. I'm praying that hers doesn't go beyond moderate. SHE SO NEEDS A FREAKING BREAK!

Back in the Hospital. Again. sigh

2009-08-28T07:07:00.000-07:00

Last night Tami was readmitted to the hospital to treat a viral infection that had flared up. The doctor's are hoping to flush it out of her system by running continuous hydration through her Hickman Catheter for at least 24 to 48 continuous hours. They are also upping her pain medication to a higher dosage so that she's more comfortable. This is such a bummer but as I keep mentioning, complications are, unfortunately, a normal part of post transplant recovery.

Gina, Tami, Greg and Joe

She did however also have fun yesterday when 3 of her colleagues came by for a very short visit right before we left for the hospital. Can I just say that they, and the rest of the entire company, have been absolutely amazing. Their caring and generosity, the messages and their unwavering support have left us quite speechless. We feel that Tami is absolutely blessed to be surrounded by co-workers who care so much about her and only wish every person facing a health crisis like Tami could be so fortunate.

And I have to say the doctors and nurses I met this week have been phenomenal when it comes to their kindness and concern for Tami's well being and helping her to understand what they are doing to help her. It was a nice surprise since I mostly hear horror stories (both in the news and from friends) about insensitive doctors who need to work on their people skills. That has not been the case at the Seattle Cancer Care Alliance or at The Hutch. I just wanted to tell them publicly that their attentiveness and sensitivity is both noticed and sincerely appreciated.

My First Visit with Tami in Seattle at the SCCA +57

2009-08-27T07:51:00.000-07:00

Greetings from Seattle!

That's my mom with the water bottle, Tami and I yesterday in Seattle. Tami has had to wear her glasses lately because a medicine she was taking would have stained her contacts orange. And of course I had on my nerdy, anti-migraine, rose colored glasses because hospitals are full of fluorescent light and glaring windows.

I am in Seattle and so glad to be here. It's the first time I've seen Tami since February when she was in San Jose on business, 2 days before she was hospitalized, and a week before her diagnosis of Myelodysplasia. I saw her for dinner on Friday night and knew she had been dealing with exhaustion and anemia that at the time was being caused by an unknown condition. A bone marrow biopsy had been performed a few weeks earlier but no cause was found. She did seem very tired and that worried me greatly because she wasn't her usual self.

After learning of her Myelodysplastic Syndrome diagnosis a week later this was the goal: To find a marrow match and have a stem cell transplant at the Seattle Cancer Care Alliance, which is the treatment hospital that works with the Fred Hutchinson Cancer Research Center here in Seattle, WA.

Fred Hutchinson is where marrow transplants were invented and they are one of the top 3 transplant centers in the world. So I was thrilled when I learned that her case had been accepted. Her doctor in her hometown was in contact with the doctors at The Hutch and it was in Seattle that they conducted the marrow registry searches for her.

This is the building that houses the infusion clinic. Where Tami spent most of her day yesterday with tubes and bags attached to her Hickman Catheter. Yesterday she had to arrive at 8:45 and was there until after 3:00 pm receiving seemingly endless infusions of hydration, magnesium and medicine. When she finally got to return to her apartment she had another 8 hours of hydration infusions ahead of her.

And this is my mom. She has been Tami's constant care taker since this all began in February. Fortunately she is retired so she had no work conflicts in wanting and needing to be by Tami's side.

Also good is that the iPhone was invented and that she can now read books on her Kindle for iPhone's app so that she doesn't have to carry books around with her in her purse and she can play lots of video games while Tami is napping or too tired to talk.

Did I mention she HATES to have her picture taken? These are the only photos she approved for publishing. LOL

This was the view from her infusion room yesterday. The view the day before was better from the other side of the building but I forgot to take a picture :(

The hospital is full of some really gorgeous art pieces. This is a close up of a stained glass room screen near the elevators on the infusion floor. I believe Seattle has some of the finest glass artists in the world.

And this is a view of the Space Needle from the HWY overpass just outside of the hospital. Tami's apartment is only 7 blocks away from the treatment building so I hoofed it on up to get some much needed exercise. There are hills here like in San Francisco so you can get a real workout while you walk.

Today Tami has another day of infusions ahead of her at the apartment and a blood draw and meeting with her doctors to assess her progress. Hopefully no medicine today. The doctors think they have eradicated the bacterial infection she had contracted but now a viral infection she had before has flared up again. That's why she needed the medicinal infusion yesterday. I'll study up on it and give you a description of it tomorrow.

Still Fighting that Nasty Klebsiella Infection

2009-08-24T11:42:00.001-07:00

Unfortuantely Tami is still fighting the Klebsiella infection :( Klebsiella typically localizes in one of two areas: In the lungs as a dangerous form of pneumonia or as a urinary tract infection. Tami has contracted the latter. She is receiving both the IV antibiotic as well as a drug called IGG to help boost her antibodies and immune system.

So today she is at the clinic receiving infusions for:

• IgG to build up her antibodies
• Antibiotics to help fight the Klebsiella
• Magnesium (continuing treatment)
• Hydration (had discontinued but is starting again)

On the good news front she is still off of the prednisone for her GVHD and after just one week her blood sugar levels are back to normal. YAY!

Cupcakes, YUM!!

2009-08-20T18:10:00.000-07:00

As you all know, Tuesday was Tami's Birthday!!! Most of the comments to our post on Tuesday wishing Tami a happy birthday indicated that everyone hoped Tami was able to have a little cake. Tami has had problems with her blood sugar levels so we weren't sure whether she would be allowed anything sweet.

I'm so happy to update you and let you know that Tami was able to eat a cupcake on her birthday. These cupcakes look so good I wouldn't be able to pick just one:)

I think I'd have to pick the last one, if I could only have one. Tami was able to go to Trophy Cupcakes in Seattle to enjoy her cupcake. I just wish they shipped across the country.

Happy Birthday, Tami! I'm so glad you were able to enjoy a cupcake.

How to Launch a Bone Marrow or Stem Cell Donor Drive at MarrowDrives.org

2009-08-20T08:50:00.000-07:00

As most of you know this blog and the Helping Tami website came about immediately after Tami's Myelodysplasia diagnosis in February of this year. It took me 8 solid weeks of talking to donor programs by phone (2 in Washington state, 3 in California, 1 in Hawaii and 1 in Massachusetts) and web surfing to build and finish her website and to figure out how to help by creating a donor drive effort.

I'm pretty web savvy and I found it overwhelming at times. There is a lot of great information out there but I found it scattered around all over the place. Even as I was soaking it all in I realized that many people would be thwarted by the lack of easily accessible information. So even as I was learning I was already planning in the back of my mind how to share this information with others in the future.

My goal is to make information packets available to transplant centers and doctor's offices nationwide so that as each new patient is diagnosed and is told they are in need of a marrow or stem cell transplant, they will be directed to the www.MarrowDrives.org website to learn how to launch a donor drive effort if they decide to publicize their need.

The www.MarrowDrives.org is still under development but there are already the first 6 steps I think most people should follow before launching their drive.

Many tutorials have been added and I will continue to add more ideas that I learn from other donor drive teams as well as ideas I think up on my own.

The tutorials are broken down into two areas: Online and Live In-person drive ideas. This way those who don't have computers or are not super computer savvy can still launch an effective local drive effort. Those who are web savvy can make use of all of the online suggestions And if there are enough volunteers ideas from both areas can be used.

Right now I'm working on my business card design. They will be part of the kits I'd like to make sure that newly diagnosed patients receive. This is the proposed front of the business card.

And this is the back of the business card.

The kits will also hopefully inspire other people to take up the cause within their place of work, worship or groups and clubs to launch donor drive efforts of their own. Because even if you don't currently know any of the 6000 Americans in need of a transplant, the odds are you will someday. There are many diseases like blood cancer and anemias that destroy a patient's marrow and their only hope for a cure is to find a willing and healthy marrow match. At this time 70% of patients in need will not receive a marrow match in time to save them.

It's Tami's Birthday Today!

2009-08-18T10:15:00.000-07:00

Yay! Today Tami celebrates her Birthday! Funny how as you get older Birthdays seem to become less important to most of us. One year rolls into the next and in a card or phone call we usually commiserate the passing of time as feeling another year older, instead of celebrating that we made it to another year. Well for me that all changes this year. This year is the first year that I have been reflecting on how thankful I am that my loved ones made it through another year. And for Tami what a year this has been!

Don and one of her sons are in Seattle with her right now to celebrate. I only hope she is able to have some cake. Hopefully her blood sugar will allow her a little slice :P

So Happy Birthday Tami! Hope you have a great one. I know getting off of the Prednisone yesterday was all you wanted this year so your Birthday wish already came true.

With lots of love and hugs,

Stacie

Post Stem Cell Transplant: Day +48

2009-08-17T10:18:00.000-07:00

I just received an email from Tami. In her own words:

Just took my last Prednisone med this morning. This is the nasty steroid that I've been taking for weeks for the GVHD. So, now I'm hoping that I don't have to go back on it and my blood sugars go back to normal.

The Prednisone had also been causing her to feel tired. Hopefully she will not need it again and will feel better now that she is off of it. So despite the bad news about the infection she just picked up, this is really great news.

She will also be receiving a blood transfusion today and then will be allowed to go back to her apartment. YAY!

Post Stem Cell Transplant: Day +47

2009-08-16T22:33:00.000-07:00

So today is one of those good news/bad news days. Thankfully Tami's medical team caught the infection in its early stages during a routine blood draw. The bad news is that Klebsiella is a serious infection and not a good one for a transplant patient to pick up.

Her doctor put her on an IV drip antibiotic and expects that in a few days Tami will be able to return to her apartment. As of this morning she still didn't have any symptoms from the infection. But I'm hoping and praying that she doesn't have any type of serious reaction to the new meds she must take to get rid of the Klebsiella.

Post Stem Cell Transplant: Day +46

2009-08-15T08:55:00.000-07:00

Man. Just when we thought Tami was sailing through her recovery... Some gram negative bacteria showed up in her blood draw Thursday evening. At 11:00 PM Tami received a phone call asking her and my mom to come back to the hospital so that they could begin administering antibiotics immediately.

She felt fine and had no idea that she had developed an infection. This is the most shocking to me only because her white blood cell count has been back in safe ranges for over 2 weeks now.

My mom wonders where she could have picked it up. Could it have been at the ball game? What if it was when they were out to lunch? Or out shopping? But her doctors had told her she could go anywhere and that walking and exercise are a necessary part of her recovery. So I guess this is just one of those things that come up during recovery. I mean a lot of people get infections while they are in the hospital so there's no sense in playing that ever annoying "what if" game.

She will be released soon and she can continue her treatment from her apartment. That's the plan for now. Will keep you posted and will let you know as soon as she is back at her own place.

Post Stem Cell Transplant: Day +43

2009-08-12T23:53:00.000-07:00

LOL this picture is probably going to really surprise you. That's Tami at a Mariners' game earlier this week.

Tami won some Mariners tickets from her hospital so she and my mom had very good seats on the second level. Apparently there's a lot of food places up there and they had some very delicious pasta for dinner. It was a good game, but they left after the seventh inning so they could beat the crowd out.

Oh and the Mariners won :)

All in all Tami is feeling better and better. She is still receiving her hydration therapy and is still on the Prednisone for her GVHD. But not for much longer. The Prednisone has been tapered down in dosage over the past few weeks and soon they will try taking her off of it completely.

Save the Date, Silent Auction and Fundraiser

2009-08-11T19:12:00.000-07:00

Want to have some fun? Bert Beattie is holding a silent auction and fundraiser to benefit The Leukemia & Lymphoma Society. The auction will be held on August 26th from 6:00 p.m. until 9:00 p.m. at Yankee Pier located at Santana Row: 378 Santana Row in San Jose, California. Tickets are $50 and include a 4-course dinner, silent auction, and raffle. If you would like to purchase tickets please visit Bert's website. Even if you cannot attend the fundraiser you can still donate to the cause. Bert is also looking for items and gift cards to be donated to the silent auction. Please visit his website to find out about donating an item. Any help you give is always appreciated.

Bert Beattie is in training to participate in the Pacific Grove Triathlon in September as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. The Team In Training are raising funds to help stop leukemia, lymphoma, Hodgkin lymphoma, and myeloma from taking more lives. Bert's stepfather was diagnosed with small cell Lymphoma over 10 years ago.

For 20 years now, The Leukemia & Lymphoma Society's Team In Training (TNT) has been a sports training program. Participants include first time athletes to seasoned athletes that train for marathons, half marathons, triathlons, 100 mile century bike rides, and hiking adventures.

Lance Armstrong's LIVESTRONG San Jose Army

2009-08-09T10:30:00.000-07:00

Yesterday I stepped out of my ordinary by attending a Lance Armstrong Foundation (LAF) event. It was a LIVESTRONG open house in Cupertino, CA. The event consisted of networking and 3 guest speakers.

Clockwise from top left:
Leigh is an LAF Grass Roots Advocacy Trainer and was our emcee for the afternoon. Richard Tate is from HopeLabs a grantee whose company received funds from the LAF to help fight cancer. Giovanna Baldassarre is one of the local LAF grass roots leaders. And Jere is a 3 time cancer patient who is facing her stage 4 colon cancer with the kind of openness and humor that makes her an excellent educator and public speaker.

Dozens of us turned out interested to learn how we can help to raise public awareness about and/or become involved with the Lance Armstrong Foundation and all of the good work they do within our local communities.

In blue was Ronni Shehorn-Maestas who created the website Stepping Stones at www.IntroToCancer.com. I knew of Ronni through my colleague Mimi who is friends with Ronni's sister. Mimi and Ronni's sister have helped to keep me optimistic during Tami's ordeal with cancer as Ronni also received a marrow transplant at the same hospital Tami is being treated at. I didn't get to say hello in person but am sure that Ronni and I will meet again someday.

These shoes weren't made for walking.... They were made for kicking cancer in the ass!

And those shoes belonged to Jere Carpentier the standout guest speaker yesterday. Not only was she informative and entertaining, Jere is a 3 time cancer patient who has also suffered severe damage to her heart from a cancer treatment. After suffering from and surviving Hodgkins Disease and Lymphoma, Jere is now suffering from her third primary cancer, meaning this is a new cancer not an old one that spread, and has stage 4 colon cancer.

But she's not giving up. She is out there educating the general public and recently was asked to speak in Sacramento to help pass a bill to improve chemotherapy treatment options for patients in need just by sharing her own story. She's one of those truly special people, a doer, who even as she is so sick is accomplishing more then most healthy people on a day to day basis.

Richard Tate, Director of Communications and Marketing at HopeLab also spoke. His company has created a cancer themed video game called "Re-mission" for adolescents and teens suffering from cancer. You're probably wondering how a video game can help fight cancer right?

For most of us missing a pill will never have catastrophic consequences but for a cancer patient missing pill can become a matter of life or death. Giving cancer the tiniest foothold to reestablish it's presence must be avoided at all costs. Well studies have shown that the kids who play Re-mission are more likely to become pro-active patients taking their meds on time to help control their cancer and maintain the upper hand over their disease.

Their website says: Re-Mission is distributed by HopeLab to young people with cancer, their families and caregivers free of charge. As of April 2009, more than 142,000 copies of Re-Mission had been distributed to 81 countries worldwide.

To download or order a copy of Re-Mission™, visit www.re-mission.net.

And I made some great new friends. That's Peter on the left. He and his wife Patt Baenen-Tapscott, a cancer survivor, were kind enough to strike up a conversation with me to find out who I am and why I was there at the open house. Turns out they are very involved with the Lance Armstrong Foundation by running a series of practice time trials for those who compete in bike races or just enjoy hobby bike riding. The registration fee (usually $25) is donated to the Foundation. Their website and the time trials are called Beat the Clock & Help Beat Cancer. There's one more ride scheduled this year for August 29th so check it out if you're a cyclist :)

And thanks to Patt for all of the photos in this blog post. She was snapping away throughout the meeting and generously gave me permission to use her pictures for this post.

Hanging out with the LIVESTRONG team at the end of the meeting to learn more about how I and MarrowDrives.org, the new website I'm creating, can help others.

And on a side note: My new nerd glasses are awesome! The room the open house was held in would have normally triggered a migraine for me because of the glaring window light combined with the fluorescent lights overhead.

The glasses are tinted pink (3X) and have a non-glare coating (front and back) to prevent migraine and light induced headaches. Such a simple fix for a debilitating problem.

I've suffered from headaches and migraines for years and was digging around on Google to better understand how light triggers them when I discovered my condition is called "Photophobia" and this treatment balances out too much blue light by adding pink with glasses or contacts. The thing that bothers me most is that my own doctor never told me about them! I had to find out for myself by researching online. The optometrist I went to said this treatment was discovered about a decade ago. I've had them 4 days now and have not had a single headache. Apparently for most people they can prevent the headaches as well as make them go away instantly if you suffer from Photophobia.

The only downside is that because my vision is 20/20 my insurance wouldn't cover the cost of the glasses because they didn't have a prescription in them and apparently that is the only factor used to determine medical need. Am going to have to start complaining about that as clearly my need was medical! But no matter what they cost they are worth every penny. I didn't realize how often I was feeling bad until I felt better :)

Post Stem Cell Transplant: Day +40

2009-08-09T09:11:00.000-07:00

Tami continues to recover from her transplant. When I call my mom she tells me not much has changed in Tami's current status. I know the recovery process is a long one but there will be significant moments we can look forward to. Among them the day her marrow biopsy says she has 100% donor marrow and all of her blood levels are back to normal, the day she is taken off of the Prednisone for her GVHD, the day her Hickman catheter comes out and of course the day she gets to leave Seattle to return home. Plenty of moments we will all be able to celebrate before we know it!

Vietnamese Marrow Donors are Urgently Needed August 6th-9th

2009-08-06T23:59:00.000-07:00

With the help of multiple recruitment programs Team Anh is holding a massive marrow drive at Marian Days to save the lives of Vietnamese patients and particularly Asian patients of all ethnicities. Please look for their large orange sign, stop by and sign up. And tell anyone you know who is at Mraian Days.

Hosted by the Congregation of the Mother Co-Redemptrix in Carthage, Missouri. The 4-day Vietnamese Marian Days event consists of masses, conferences, adoration, concerts, food (lots of food) and much, much more.

For over thirty years, tens of thousands of Vietnamese Catholics have been making a pilgrimage to the small town Carthage Missouri in devotion to the Virgin Mary in a festival called Marian Days. Many at Marian Days attributed their miraculous survival from the Vietnam War and exile to Mary's divine grace.

This year, the Vietnamese people's spiritual journey grows. Asian marrow organizations, churches, and patient groups from all across the world are coming to Marian Days on behalf of the many Vietnamese patients suffering from bone marrow disease to ask the 60,000 attendees to join the National Marrow Registry.

Whether you or someone you know is attending the Marian Days in Carthage, Missouri or not, everyone can join the National Marrow Donor Program to increase the number of Vietnamese ethnicity donors to help the many Vietnamese in need here in America and around the rest of the world!

Please consider joining the National Registry in celebration of the Marian Days Event. If your are full, 1/2, 1/4 or even 1/8th Vietnamese your participation is needed. Did you know that fewer then 0.2% of the current donors in the registry are Vietnamese? That means that of them 7.4 million donors fewer then 18,000 are Vietnamese.

To order a FREE registration kit online go to the Asian American Donor Program website by CLICKING HERE. Registering is pain free and donating marrow is almost pain free. You can learn more about the donation process by CLICKING HERE.

These are just a few of the Vietnamese Americans who urgently need to find marrow matches before they run out of time.

Within every one of us is the power to heal, to save a life at Marian Days and all across the country.

To locate a live marrow drive in your area please visit the Be The Match website and enter your zip code.

Post Stem Cell Transplant: Day +35

2009-08-04T08:04:00.000-07:00

Tami has no more abnormal or Myelodysplasia cells! Is that great news or what? This is what the bone marrow biopsy from last week has shown. Her RBC (red blood cell) count is still a little lower then normal and some of her other counts have dropped slightly in the past few days. Tami will need a blood transfusion today but it's been weeks since her last one so we're very happy that her need for them is becoming fewer and further between.

White Blood Count - 9.06 (normal 4.0 - 11.0)
Red Blood Count - 3.59 (normal 3.8 - 5.2) this count was from 7/23. My mom has not given me a more recent RBC.
Platelets 167 (normal 150-350)
Hematocrit- 26% (normal is 38% for women and 46% for men)

Also note her new white blood cell count. Tami is well out of the neutropenic stage where random infections can become life threatening. I can't tell you how relieved I am to hear this number in particular keeps going up :)

There are continuing issues with Tami's blood sugar level most likely due to the Prednisone she is receiving to control her Graft vs. Host Disease. Because of this she needs to check her blood sugar 4 times a day. Occasionally she does need to receive insulin to balance her sugar level. Her doctor has said this condition will most likely go away once she is able to discontinue the Prednisone.

That's all for today. I'll post again as soon as I have more new information.

What a View

2009-08-02T19:56:00.000-07:00

What a gorgeous view this is. Saturday night Tami went up to the roof of her apartment to get some fresh air. This was her view so she decided to take a picture to share with us. I think it's great Tami can get up on the roof of the apartment. I bet it's cool and this sight is so beautiful and peaceful. I would imagine it is relaxing for Tami.

Post Stem Cell Transplant: Day +31

2009-07-31T19:04:00.000-07:00

Some of the test results from Tami's bone marrow biopsy are back and her marrow is now 99% donor marrow! This is really fantastic news. Her Doctor said that he expects it will be 100% the next time they do a marrow biopsy.

Tami does need to up her hydration. Each day she receives fluids: saline in the mornings and magnesium hydration through her catheter at night. It was 1 liter per day before, I don't know what the new amount will be but I'll let you know when I find out.

The temperature the past few days have been hot, still in the 90's. Not a typical summer in Seattle.