How Tami is Feeling

Good news to report today!!! Tami was feeling much better. She had a little nausea this morning but was feeling better by this afternoon. In fact, she felt well enough to go for two walks later today. Tami also was eating much better today. It is really important for Tami to walk and eat properly to keep up her strength. Hopefully, Tami's nausea will not return.

How Tami is Feeling

Tami is doing ok today.  She was able to take a medication called Queasy Drops for her nausea. One drop helped so hopefully they will continue to make her feel better since the nausea is hard on Tami.  Tami's doctor indicated that she is in a holding pattern right now while they continue to search for a suitable donor.  We hope Tami continues to feel well until a marrow or stem cell transplant can be scheduled.  

Introducing Stacie and Wendy - Tami's Official Bloggers

My name is Stacie Tamaki and I am one of Tami's cousins. In case any of you are wondering why I've been the one posting here on Tami's behalf, it's because Tami isn't feeling up to it. Between the exhaustion, headaches, nausea and fevers she's been suffering from she simply doesn't have the energy to be online :(

Following Tami's diagnosis I began doing everything I could to learn about Myelodysplasia, bone marrow donation, stem cell transplants, donor drives and marrow donor organizations.

After undertaking an immersion course online, talking to coordinators and donor programs and to anybody else who was willing to offer advice, I set about figuring out how to take my skill sets as a web designer/developer, blogger and internet entrepreneur and use them to create an effective effort to help Tami (and hopefully many others) find a marrow match. I got to work building a website, blog and a private forum (her donor drive team uses to stay in touch) and am now working on how to best publicize the nationwide mail-in donor drive we've launched to help Tami and others in need.

In case you've noticed and are curious as to why my byline on my posts says "The Flirty Girl," it's because I already maintain a blog for my companies "The Flirty Bride" and "The Flirty Guide" and have for years been known within the Northern California Wedding Industry as "The Flirty Girl." So it may seem like an odd username here on Tami's blog but hopefully the fact that that's been my username on Blogger for years explains it for those who might have wondered.

For the foreseeable future I'll continue posting for Tami and about her donor drive along with a friend of mine who has offered to help and be a part of Tami's team.

Please welcome my friend Wendy who will also be blogging for Tami.

Wendy is someone who is very familiar with the National Marrow Donor Program. She has been a member of the registry for years and has been called upon on three occasions after her tissue sample was a preliminary match to patients in need. The first time a closer match was found, the second time she was the best match but the patient became to ill to be able to undergo the transplant procedure and currently she is now, for the third time, in the formal confirmative testing stage of possibly saving the life of someone who is a complete stranger to her.

Because of this I felt Wendy was uniquely qualified to help keep you updated and informed here on the blog.

Wendy and I know each other from the website Dogster.com where we met years ago online and have since become real life friends. The picture above is from when my dog Kitai and I went to NYC for less then 24 hours to be on the TODAY show in their pet Halloween costume contest. Wendy who doesn't live in the immediate area drove hours all the way to Manhattan to come to the taping at the NBC studio and then to spend a few hours hanging out with us at the hotel and in Central Park. She's a great friend and I really appreciate her help here-on-out on Tami's blog. Thanks so much Wendy!

The Leukemia & Lymphoma Society: Team in Training

The other night I attended a wedding industry event in San Francisco and met a woman named Jennifer. It's been kind of incredible that as I move forward with my efforts to help Tami I seem to be meeting all of the right people as I go about my normal, day to day, life. 

Jennifer was there attending the event as a guest of a wedding professional. Someone had already told me she was a "runner" so when I had the opportunity to speak to her I asked her about running and found out that she is on the Leukemia and Lymphoma Society's "Team in Training" to run a marathon this summer. 

What I'm learning is that when it comes to cancer, the "seperation" is less then 6 degrees. It seems that every person I talk to either knows and loves someone who has had cancer or is helping to eradicate it.

If you've never heard of Team in Training before here is the description from their website:

Over the past 20 years, The Leukemia & Lymphoma Society's Team In Training® (TNT) has grown to become an unparalleled sports training program. More than 380,000 participants, from first timers to seasoned athletes, have trained with the Team and achieved their best at marathons, half marathons, triathlons, 100-mile century bike rides and hiking adventures.

Train with the best to meet your challenge!

TNT is the world's first, best and largest charity sports training program - and the only one to offer a full complement of exciting, sports training options.

Of course this led to my learning more about the society from Jennifer and sharing Tami's story with her. Because Myelodysplasia has, in recent years, been reclassified as a blood cancer it falls beneath the umbrella of the Leukemia and Lymphoma Society making their resources avaialble to Tami and other patients like her.

If you would like to help Jennifer reach her personal fund raising goal CLICK HERE. Any amount will help her cause, $1 or more will add up to her goal of $3900.

Japantown, San Jose • AADP Donor Drive 4/26/09

Knowing that Tami is most likely to find her marrow match within the Japanese American community is taking me back to my roots. The fact that San Jose has a Japantown at all is special. It is one of three left in the entire country with the other two located in San Francisco and Los Angeles.

Today my hubby and I headed down to Japantown in San Jose. It seemed like a good place to go to see if we could drop off some of Tami's postcards and flyers to local businesses to help spread the word about Tami's website and upcoming marrow donor drive at The Tech Museum on April 12th.

If you've never been to Japantown? You should head down to take a peek at the gift shops and grab some lunch or a nice dinner. Nikaku Gift Shop and Animart have always been one of my favorite places to shop to purchase gifts and origami paper over the years. They have beautiful dishes and a wonderful collection of anime products.

Nikkei Traditions is a newer gift shop that has lots of cute t-shirts, hats, baby items, music and more modern gift items. 

Kogura Co. has a lot of gorgeous dishes and ikebana vases. They also have beautiful Japanese dolls and a nice selection of books and magazines.

Hukilau is where we stopped for lunch. A fusion of Japanese and Hawaiian food, we've eaten there twice and both times the food and service were both excellent.

Banana Crepe has excellent crepes and Hawaiian shaved ice. Also lots of drinks to choose from so stop by on a hot summer day and try them out.

The Nijiya Market is bright, clean and has a wonderful selection of products and produce.

246 Studio Spa is a cute little place tucked between the Nijiya Market and Banana Crepe. They describe themselves as a friendly neighborhood salon. Their services include hair styling, waxing and nails.

The Nikkei Matsuri Festival is Sunday, April 26, 2009. As the Japantown website says: "What better way to share Japanese American Culture, than, through food and the arts! There is something for the entire family at Nikkei Matsuri! Plan to spend the entire day in Japantown.

Our Food Court, features traditional and non traditional Japanese cuisine. Our food is prepared on site and served by local Japanese American non-profit organizations.

The Arts and Crafts Fair includes over sixty arts and crafts vendors from throughout the Western United States and Hawaii. Everything is handmade with a focus on Japanese American tradition and contemporary style. The Arts and Crafts fair features a wide variety of clothing, ceramics, pottery and gifts all uniquely- Japanese and Asian American.

Our Indoor Stage, features Japanese culture through music (koto, shakuhachi), martial arts, and dance (Bando and Hanayagi styles).

Our Outdoor Stage is contemporary and hosts groups like the well-known San Jose Chidori Band (Japanese music), the Wesley Jazz Band, and the San Jose Taiko.

Cultural Displays, such as ikebana (flower arranging), suiseki (rock displays), bonsai (miniature trees and plants) and kimekomi dolls (handmade dolls based on a wooden form) which are a part of everyday Japanese life are shown in the San Jose Buddhist Church Annex. Several schools and organizations are represented in these craft displays, spanning centuries of Japanese tradition."

The AADP.org will be hosting a marrow donor drive at the Nikkei Matsuri Festival at 250 Jackson St. San Jose, CA. from 9:30 AM to 4:00 PM. Sign up to register as a donor or to be a volunteer

Donor Drives in Seattle, Washington in April

One of the best ways you can help Tami and others is to become a member of the National Marrow Donor Program (NMDP).  There will be many in-person donor drives in Seattle, Washington offered by the Puget Sound Blood Center (PSBC) through the month of April.  

Attending a public donor drive is easy.  The PSBC will first determine if you are eligible to become a member and answer any questions you may have.  They will ask to see a driver's license or some other form of personal identification, and then take a swab of your cheek cells. Testing for ethnic minorities is always free. If you are Caucasian you may be asked to pay the costs of your tissue typing.  However, each donor drive is different so it is important to determine any costs before attending.

There are many patients in need of a bone marrow or stem cell donation.  This is a list of a few of the donor drives being held in Seattle, Washington for the month of April.

If you do not live near Seattle, Washington there are also donor drives nationwide. 

  

How Tami is Feeling

Luckily, Tami did not need a transfusion today since her platelet count was up. Hopefully her count remains high.  However, the doctor did give her some new medications today that made her feel nauseous.  We are hoping the doctors can find the right combination of medication that will help Tami feel like herself again.

Web Badges to Support the National Marrow Donor Program

Want to help Tami by adding a web badge to your website or blog?

If you CLICK ON THIS LINK it will take you to page where you can copy and paste the code you find there to create an image link that your visitors can click on to visit the HelpingTami.org website. When they click on the image their browser will open a new window.

On Tami's web badge page you can choose from the links below:

How Tami is Feeling

OH WOW everyone. Thank you so much for joining the Facebook Group and for keeping me posted on the arrival of some of your test kits. Just hearing the kits are making their way into the hands of those who care is very uplifting for me to read in my inbox.

Tami seems to finally be taking a slight turn towards feeling better, meaning her debilitating headaches are now more mild and her severe nausea is not as bad. She has been receiving many platelet transfusions for the past week+ but the update I received today is that her red and white blood cell counts have improved slightly.

For me it was the best "update" report I've received about her condition in 3 weeks. Hopefully she will continue to feel a little bit better day by day until her match is found.

How Tami is Feeling

There wasn't much change today. Tami received another platelet transfusion. Her doctor said since she is doing better she could go home for a few hours if she felt up to it but she was too tired to try today. Maybe another day.

LOL Facebook is covered for now...

I received this message from a friend just now:

Oh, Stacie, I forgot to tell you. I invited all my Asian FB friends to your group. Then I figured the more exposure the better and invited everyone living in the US as well, and told them to pass the word. I didn't think you'd mind.

Another friend alerted the Asian diversity club members lists at her company not realizing that sending out such a request was considered Spam. So then she sent out an apology to everyone but was happy she did it because one person messaged her back that he would order the kit and get tested.

SO YAY!

Thank you so much. I have the best friends ever.

How Tami is Feeling

Tami broke out in hives after receiving a platelet transfusion. So now on top of feeling sick and uncomfortable she is now also itchy. Once the Benadryl kicks in she feesl better but hopefully the hives won't last for too long :(

HelpingTami.org on Facebook

To join CLICK HERE

Thanks to Jennifer for suggesting we start a Facebook Group for Helping Tami. I just set it up this morning and will post updates and answer questions there. If you're on Facebook please join and help me spread the word :)

How Tami is Feeling

Tami had another platelet transfusion today and was feeling better.

Today she watched the NCAA basketball tournament and was rooting her her favorite teams.

Launching Helping Tami.org to the World

Well tomorrow morning I'm planning on kicking off our nationwide mail-in marrow drive by launching www.HelpingTami.org to the world on my "Flirty" blog. The kit contains 4 cotton swabs that you simply swab your mouth with and mail them back in. That's all it takes to get registered and into the National Registry.

It may take a little time for word to spread but I'm hoping that many of my friends, colleagues and fellow bloggers will cross post the information and the link to Tami's website to help let more people, nationwide, know that there is a critical need for potential donors from every ethnic minority group at this time.

Here's something you may not have known: Donor tissue typing costs are often free for anyone of Asian/Pacific Islander, African American, Latino, Native American or Multi-racial descent because of the severe need of donors from all ethnic minority backgrounds. In our nationwide mail-in drive the AADP.org will be offering home test kits free to anyone of any ethnic minority group as well as to those of mixed heritage. You can learn more about why ethnicity is so crucial by CLICKING HERE to visit Tami's website.

While the standard cost to be tested is $52, the AADP in conjunction with the National Marrow Donor Program is offering a discounted price of $25 to any Caucasian donors.

While it’s most likely Tami will find her match within her own ethnicity? There is a chance she could find it in another. And she isn’t the only one in need. There are 6000 people in the United States seeking a life saving marrow or stem cell match.

If you are Caucasian and would like to order a mail-in test kit to join the NMDP registry at the discounted price online please click: https://donors.marrow.org

When asked to provide a "Promo Code" please enter: AADPTami2009

To anyone who reads this and joins the registry or takes the time to forward the link to Tami's website http://HelpingTami.org to anyone they know who might be willing to get tested or help us spread the word, I'd like to say a huge THANK YOU in advance. Your efforts are very much appreciated by Tami and her family and you never know, someday you might end up saving someone you love and care about. I registered in 1995 and never dreamt my own cousin would one day be a person in need.

How Tami is Feeling

There wasn't much change today. Tami felt pretty good, almost good enough for visitors, until they came in and gave her two shots in her stomach to help her body build more blood cells. She felt nauseous after that so they gave her meds to relieve the nausea and she slept most of the afternoon.

Thank You One and All

Tami would like to thank everyone who participated in the donor drive hosted for her this week. She would also like to thank those who organized and participated in the recent fundraiser on her behalf. The generosity of those who became part of the national marrow registry, the donations, the time and effort from those of you who are organizing and setting up the events, the encouraging messages and the prayers from all, mean more then she, or we her family, can possibly thank you enough for.

But with much appreciation we would all like to say thank you.

How Tami is Feeling

Just wanted to let everyone know that as Tami waits for her match to be found, along with the general feeling of exhaustion that anemia brings on she's been suffering from severe headaches, nausea and fevers. Her doctor is working hard to find the right balance of medicine so that even though she is sick, she can feel better then she has as of late.

Treatment Options: Bone Marrow/Stem Cell Transplant

This is what Tami's doctors have recommended as her best chance at a long term remission. They want to perform a stem cell transplant as soon as possible.

The following excerpt is from the Seattle Cancer Care Alliance Website. The information in its entirety can be read by CLICKING HERE:

Bone Marrow/Stem Cell Transplantation

Patients with severe or advanced MDS often are treated with a hematopoietic stem cell transplant (marrow or peripheral blood), currently the only type of treatment that has the potential of curing the disease. In some patient groups, the success rate (meaning how many patients are cured of their disease) is as high as 70 to 75 percent. Some of these patients have now been followed for 20 years or longer by their health care teams, with no sign that the disease has returned.

The chemotherapy given before a transplant and the transplant itself are intensive treatments designed to kill diseased stem cells in the marrow. The most intensive type of pre-transplant conditioning regimen is called myeloablative. This type of regimen completely destroys the patient’s own bone marrow and immune system. A newer approach, using less intensive regimens, is called nonmyeloablative or reduced-intensity conditioning. (You may also have heard this called mini-transplant.) This type of regimen destroys some of the bone marrow cells. The intent is to suppress the immune system enough so that the donor cells are not rejected and can help to kill any remaining abnormal cells in the marrow by an immune attack on those cells.

Donor cells are infused following the conditioning regimen. This is the actual transplant. The intent is that the donor stem cells will settle into the patient’s bone marrow, a process called engraftment. There they will begin producing healthy blood cells and immune cells. This new immune system will then recognize any remaining diseased cells and eliminate them.

Treatment Options: Transfusions

Tami has received several transfusions to date. They have helped to give her temporary relief from the exhaustion and severe headaches that have been plaguing her for the past 2 weeks. Unfortunately the relief is temporary.

Blood Transfusions as Supportive Care for MDS:

Transfusions are helpful to replace low levels of red blood cells. The transfused blood may reduce symptoms of fatigue, breathing difficulties and will also help to prevent organ stress.

Unfortunately transfusions are not risk free due to the danger of iron overload/toxicity. This occurs when a build up of iron (some is deposited in the body with each blood transfusion) causes permanent damage to the patient's organs, particularly the heart and liver. Some people may develop iron overload after only a few units of transfused blood while for others it could take years. Due to this wide range it's important for doctors to test the iron levels of patients receiving transfusions on a regular basis.

There are drugs called "chelators" that can be used to reduce the levels of iron in the body but there are often undesirable side effects from the drugs themselves.

Treatment Options: Clinical Trials

Being accepted to the Fred Hutchinson Cancer Research Center means that Tami may have the option to participate in a clinical trial for those suffering from MDS. At this time I have no idea if this is something her doctors are considering but thought it was worth noting since she will be in one of the finest research hospitals in the country.

A clinical trial will be of significant benefit if the national registry doesn't have a bone marrow match for her and if we are unable to locate one quickly.

The clinical trials at the Hutch should give anyone who is eligible to participate, hope that an alternative treatment will be available to them if a traditional marrow match cannot be found.

Myelodysplasia - Myelodysplastic Syndrome - MDS

What is Myelodysplasia?

Myelodysplasia (MY-eh-loh-dis-PLAY-zhuh)

(Also known as Myelodysplastic Syndrome, MDS and "Pre" Leukemia)

Your bone marrow, the spongy tissue located in the center of your bones, contains the stem cells from which all other specialized cells in your body are formed. The stem cells in your bone marrow are what create the new blood cells your body needs. The red blood cells that carry oxygen throughout your body, the white blood cells that fight infection and the platelets that clot your blood.

But in people who suffer from Myelodysplastic Syndromes or Myelodysplasia, the stem cells don't mature or function properly. This lack of new healthy cells can be so minimal no treatment is needed or so serious that it causes life-threatening complications that include an inability to fight off infection, severe bleeding/hemorrhaging and anemia.

In one third of those diagnosed with severe Myelodysplasia the condition progresses to become Acute Myeloid Leukemia within months or years.

FH Interview Date is Being Moved Up

Today, Tami's doctors told her that they are going to try to move up her interview date at the Fred Hutchinson Cancer Research Center in Seattle.

Tami felt better today after receiving a transfusion of blood platelets. The terrible headache she's had for the past week finally began to subside a bit.

Tami's Myelodysplasia Diagnosis

It's all happened so quickly and her condition is progressing so rapidly her doctors want to perform a stem cell transplant as soon as possible. Because for 1 out of 3 patients MDS progresses to leukemia there is a definite sense of urgency in finding a marrow match for her before this happens.

In the past 6 weeks Tami's normal life, her world, has been turned upside down.

After catching the flu Tami began suffering from extreme fatigue. When the feelings of exhaustion didn't subside she went to her doctor.

Tests confirmed that her white and red blood cell and blood platelet counts were all low. A bone marrow biopsy was negative for leukemia. Shortly after, her white count increased spontaneously. No diagnosis other then anemia was made at that time.

Subsequently she began experiencing nausea, indigestion and high fevers. A trip to the ER and it was determined all of her blood counts were low again as well as her blood pressure. She was admitted to ICU for 2 days then moved to a regular hospital room for 5 additional days. During the course of the following week many tests were conducted including a second bone marrow biopsy. 7 days later her doctor came to her with a 98% certainty diagnosis that she is suffering from myelodysplastic syndrome also commonly known as Myelodysplasia, MDS and "Pre" Leukemia.

For that remaining 2% missing from the diagnosis they conducted several toxicity tests on the off chance she had suffered lead or chemical poisoning. A week and a half later those results came back negative and she was given a conclusive diagnosis of Myelodysplasia.

As if Being Sick Wasn't Bad Enough

As a busy mom with 2 young kids, the next few months will be especially difficult. As it stands Tami is going to have to spend at least the next 4 months away from her kids while awaiting and receiving her Stem Cell Transplant at a Cancer Research Hospital in Seattle, Washington. She's been told that even with a transplant she won't be able to work for at least a year.

Leave Tami a Message

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