How Tami is Feeling

Good news for today, Tami did not require any blood or platelet transfusions. That is such a relief. She continues to feel pretty good. However, she does tire pretty easily. So far her numbers have been steady for the past few days that is why she hasn't been required to have any transfusions. If only her numbers could hold steady until a match is found.

Yesterday on her car ride, Tami went to Dick's and had some fries and then went to Starbucks and had an iced tea. She enjoyed it very much and it went well. Everyone needs a Starbucks fix now and then:)

How Tami is Feeling

Another good day to report!! We need so many more of these. Maybe Tami's luck is turning around. She had another good day. She was not required to have a blood or platelet transfusion.

Tami also got to leave the hospital grounds for the first time in about 45 days!! How exciting is that? She went for a car ride so it wasn't exhausting for her. Must have been so nice after being cooped up for so long.

How Tami is Feeling

Tami had an excellent day today. She did not require any blood transfusions or platelet transfusions!! Yay! We hope she has such a good day tomorrow also.

We are still awaiting any news about a possible donor for Tami. She really needs to find a match.

How Tami is Feeling

Today was another quiet day for Tami. Of course, we are not complaining!! Quiet days are never bad, we just wish we would hear something about a donor!

The doctors changed Tami's antibiotic today. They are thinking the antibiotic is what was causing her rash so hopefully the new antibiotic will be better for her. Tami did require a platelet transfusion today but it went well.

How Tami is Feeling

Tami had a pretty quiet day today. Thankfully, she did not require a blood transfusion or a platelet transfusion at all today. That's always a relief.

Tami did develop a rash today. The doctors are not sure what is causing the rash but they said they will keep a close eye on it to see if it gets worse. At least they are on top of it.

How Tami is Feeling

Tami had a pretty good day today and a good start to the weekend.  She did have both a blood transfusion and a platelet transfusion but thankfully she did not have a reaction to either transfusion.  Everything else went well today.

Tami was able to go outside today and get some fresh air.  Spring is a time for new beginnings and I sure hope Tami gets a new beginning soon.

In Remembrance of Carolyn Tam

When I first learned of Tami's diagnosis I also learned about Carolyn Tam from my friend Evonne Wong. Evonne directed me to Carolyn's blog and it was there that I first got the idea to build Tami her website and blog.

After reading Carolyn's blog I read the sites and blogs of other patients like Project Michelle, Team Matthew, Team Krissy and more. And though I didn't personally know any of them I felt connected after reading their highs of attaining remission and the lows of their diagnosis' and relapses.

So even though I never personally knew Carolyn, it saddened my heart greatly this morning when I received word via her Facebook Group that she had passed away 2 days ago because her match was never found. Carolyn fought a long hard battle that I hope one day, nobody will ever have to face.

Can you imagine if every eligible person in this country joined the registry? Instead of taking 2 years or more to find a match, people could be matched in 2 weeks. Countless lives would be saved. It may sound idealistic but if everyone were willing to register and donate that could be the case for so many people in need.

It is an outright tragedy that Carolyn was not saved. She should have been saved. I wanted to create a memorial page for her on Tami's site because I feel strongly that her life is one that needs to be recognized out of respect for who she was and the hard fought battle she faced.

CLICK HERE to visit the remembrance page for Carolyn on HepingTami.org.

4/26/09 Edited to Add:

I just received a message this morning from Patrick, Carolyn's brother. I am stunned and so appreciative at the same time that he has offered to send us all of the information they have accumulated over the course of 2 years to help us fast track our efforts to help Tami. I say I'm stunned because Carolyn just passed away a few days ago. But I quickly realized that it takes someone who has been through this process to realize that time is not a luxury to be wasted. Any patients best chance of recovery is to receive a transplant while their body is still strong enough to recover from the procedure itself. So thank you Patrick for reaching out to Tami so quickly after learning about her need.

I've also received some messages from Chris, Carolyn's friend, asking people to please don't quit Carolyn's Facebook group now that she's passed away. The groups efforts will continue as her legacy and they will continue in her honor to register new donors to help others in need. If you are on Facebook and want to support them CLICK HERE to join Carolyn's group.

New Pictures of Tami!!!

We have some new photos of Tami for everyone to see.  We are hoping and praying for good news soon on a matching donor.  All these photos were taken recently while Tami has been in the hospital.

Tami and Auntie June.  Auntie June has visited and stayed with Tami everyday since she entered the hospital.  Auntie June updates us daily on Tami's progress.  She has been such a great help to Tami and to us during this hard time.  The white around Tami's neck is a mask she wears.

Tami in her hospital bed.  She seems so thin here but I love the smile on her face.  

Don walking with Tami outside of the hospital.  It's so nice when Tami can get out of that hospital room and get some fresh air. 

Tami sitting outside the hospital in her wheelchair.  She has such a super smile.  We hope she finds a donor soon.  Pretty quick she won't need that winter coat anymore!!

Tami and Don at the hospital.  Don has been right by Tami's side through her ordeal.  

I hope everyone enjoys the new photos. We will continue to post new ones as soon as they are available!

How Tami is Feeling

Great news again today, Tami did not require any blood or platelet transfusions!!! However, she does have an infection called Clostridium Difficile or "C. diff." It is not an uncommon infection in individuals that have been on antibiotics for an extended period of time, like Tami. Tami's doctors are treating the infection.

Tami went outside again today for awhile. It was 55 degrees in Washington but the sun was out and shining so it was very nice.

Japanese City • A Fun and Free Website

Japanese-City is a fun and free website that allows participants to find or add Japanese events in their community.  Japanese-City is a website for nationwide events. However, you obviously do not have to be Japanese to use the website and attend the events or add an event to the calendar.  Search your area and find fun and exciting things to do.

The great news is that Japanese-City has agreed to feature Tami on the right hand side of the calendar pages.  Tami's ad will be rotated with another patient suffering from Myelodysplasia. Team Krissy is helping 26 year old Krissy find a match also.  

If you know of a Japanese cultural event in your area, please feel free to add it to the website. Or, if you would like to attend a cultural event in your area, you can search Japanese-City for events you may be interested in attending.

Feel free to sign up to receive the newsletter by email or follow Japanese-City on Twitter.

How Tami is Feeling

Other than having an upset stomach today, Tami had a pretty good day. She just had to take her regular medications today. What a relief. Today was a little chilly in Washington but it was nice so Tami was able to go outside for a walk.

Thankfully, Tami did not need a platelet transfusion or a blood transfusion today. Let's hope tomorrow proves to be even better.

How Tami is Feeling

Tami slept most of the day today. When she had her platelet transfusion last night she was also given a steroid. As we have mentioned before, the steroid makes Tami feel anxious but she has to take it. The doctors gave her Xanax which helps her to relax.

Tami had a very restful day.

Armenian Marrow Donors are Urgently Needed

New Faces on the Helping Tami Website

Some of you may be wondering why you are seeing new faces on Tami's website. Well it's quite simple. Tami isn't the only person in need. In fact there are approximately 6000 Americans looking for a life saving marrow match at this time. As people find out about the Heping Tami.org website and blog I've begun receiving messages from the loved ones of patients in need asking for our help.

If you are Armenian or know anybody who is and especially if you are part of an Armenian church or organization, please help us spread the word about Aram who is in critical need of a marrow transplant.

24 year old Aram Markosian has been diagnosed with Leukemia and needs a marrow match to save his life. Aram has been an active Armenian in AYF, Homenetemen & AGBU. He is a fun loving young man who is loved by all who know him. Aram's need is now critical. His cancer has progressed to it's final stage. This is a plea to all people of Armenian descent to please attend any donor drive, join any mail-in test kit campaign or join the Armenian Bone Marrow Donor Registry at www.abmdr.am

It doesn't matter how you join, all that matters is that you do join. All of these methods will result in your tissue sample becoming part of the National Marrow Donor Program where Aram's doctors will be able to see if you are the person who could save his life. Plus you never know, someone who registers to help Aram could end up being Tami's perfect match.

How Tami is Feeling

Tami had a pretty good day today. She does get tired very easily and requires a nap but she seems ok. Tami will have a platelet transfusion this evening. Since the platelets have to be processed before they can be given to Tami, it takes several hours before they are ready and can be transfused. Thus, Tami cannot have transfusions until night time.


We are still hoping a donor can be found for Tami!!

Help Needed to Spread the Word: Lexington, Massachusetts

Hi Everyone. We really need your help to find people in the Lexington/Cambridge Massachusetts area to assist us in spreading the word about an upcoming bone marrow donor drive being hosted by Gift of Life on May 3rd at a Lexington synagogue.

I met Louise, one of their volunteer coordinators in Boston, who found out about Tami's need after we posted information about Eve, pictured at left, here on Tami's blog. Louise has now taken Tami under her wing and would like to, moving forward, diversify some upcoming GOL drives to include a focus on Asian potential donors to help Tami as she searches for her other patients in need.

This means you can help if you are or know anyone who lives in the Lexington/Cambridge area who would be willing to help spread the word about the donor drive (on May 3rd) on a local level and about the Gift of Life Donor Drives in general. Spreading the word is easy. Our best suggestions are:

• Face to face with people you/they know
• Family
• Friends
• Churches
• Neighbors
• Co-workers
• Clubs, Associations, Groups, etc.

• As well as by phone, email, blogging, Facebook, Twitter, etc. 

If they want to get involved more directly they can contact me and I can introduce them to Louise at Gift of Life.

To view all of the upcoming drives Gift of Life is hosting PLEASE CLICK HERE.

I met Louise after Eve's family contacted me asking us to blog about 2 year old Eve's need to find a donor of Eastern European Jewish descent. If you know anyone who would be willing to help Eve they can register:

At a Gift of Life donor drive: In the state of MA. tissue typing costs are now covered by your health care provider. Just be sure to bring your health insurance card with you to the drive.

If you don't live in MA. you can go to "Be the Match" the National Marrow Donor Program at Marrow.org where there is no charge for Ethnic Minorities to be tested. Caucasians can receive a discount on their tissue typing thanks to a federally funded grant. Just use Tami's promo code "AADPTami2009" when prompted if you order a mail-in test kit online through marrow.org. 

To learn more about why minorities are tested at no charge but the cost for Caucasians is $25 please CLICK HERE.

UPCOMING GIFT OF LIFE DONOR DRIVES

______________________________

Thursday, Apr 23, 2009
11:00 AM - 2:00 PM

Cleveland Hillel Foundation  
Nord Hall - Atrium
10900 Euclid Avenue
Cleveland, OH 44106
865-384-9681
______________________________

Sunday, Apr 26, 2009
10:00 AM - 5:00 PM

Adath Israel Congregation  
Alex Tobias Hall
37 Southbourne Avenue
Toronto, Ontario, M3H 1A4  Canada
416-785-8132
______________________________

Sunday, May 3, 2009
1:00 PM - 5:00 PM

Vilna Shul Boston's Center for Jewish Culture   
18 Phillips Street
Boston, MA 02114
617-523-2324
______________________________

Sunday, May 3, 2009
8:30 AM - 1:30 PM

Congregation B'nai Shalom  
117 East Main Street
Westborough, MA 01581
506-366-0662
_____________________________

Sunday, May 3, 2009
9:00 AM - 3:00 PM

Temple Isaiah
55 Lincoln Street
Lexington, MA 02421
617-947-9900
______________________________

Sunday, May 17, 2009
9:00 AM - 3:00 PM

The Mandell Jewish Community of Cleveland
26001 South Woodland Road
Beechwood, OH 44122
440-349-1077
______________________________

Monday, May 18, 2009
6:30 PM - 9:30 PM

The Mandell Jewish Community of Cleveland
26001 South Woodland Road
Beechwood, OH 44122
440-349-1077
______________________________

Wednesday, June 3, 2009
7:00 PM - 8:00 PM

Jewish Community Center of Rhode Island
401 Elmgrove Avenue
Providence, RI 02906
401-861-8800
______________________________

Monday, June 15, 2009
3:00 PM - 7:00 PM

Jewish Community of Rhode Island
401 Elmgrove Avenue
Providence, RI 02906
401-861-8800

How Tami is Feeling

Tami had a good day today. She was feeling a little anxious but the doctors felt that was due to the steroids she was given yesterday to help with the transfusion.  The doctors prescribed Xanax which helps a great deal with the anxiety.

It was a beautiful day today in Spokane, Washington.  The weather was 73 degrees so Tami was going for a nice walk.  It's almost unbelievable but Tami has been cooped up in the hospital for about 40 consecutive days now. (In total her hospitalization has been more like 56 days as the doctors did try to send her home early on but she was readmitted through the ER in less then a day and a half each time.) It's been such a long time for her.  

Tami continued to eat better today however, she complained of the food tasting salty to her. Hopefully, that will go away soon.

We are now on Twitter

Yay!!  We have a Twitter.  Anyone who's anyone has a Twitter!  Helping Tami can now be followed on the Twitter website.  If you do not have a Twitter account it is very easy to sign up and free.  You are able to "follow" your favorite actors and friends.  Everyone posts updates as to what they are doing and you can log on to see where your friends are and what they are up to. It's fun and easy.  

Start following Tami's Twitter for all our latest news and up to date information.  If you click on "find people" and enter "helping tami" into the search box on the Twitter website you will be able to "follow" us.

Press Page

We have created a new press page on the Helping Tami website.  As you can see, there are already a few news stories.

The first news story is an article written by Sal Pizarro for the Mercury News about Stacie's help supporting Tami and the website.  It is a great article.  Check it out.

There is also an article written in Mandarin regarding the marrow drive held at the Tech Museum in San Jose, CA.

We also have a great video in Mandarin regarding the marrow drive that was held at the Tech Museum in San Jose, CA

Please check back as we update our press page periodically!!

Sunday Evening Update on How Tami is Feeling

Another update for today!  Tami was able to have her platelet transfusion today.  It now takes a couple hours for the platelets to be ready for transfusion.  That's fine as a long as there are no more bad reactions.  It's so scary.  She came through the transfusion fine.

Tami's appetite also increased today which is a good sign.  Hopefully, things will stay improved tomorrow.

Sunday Morning Update on How Tami is Feeling

Just wanted to let everyone know that Tami is feeling better today following her bad platelet reaction yesterday.

We are not sure what the new method of delivering her platelet transfusions will be to safeguard her from another bad reaction but we did learn last night that from here on out her blood transfusions will be "washed" before she receives them.

"Washed" blood means that plasma proteins are removed from the blood using a centrifuge device allowing plasma and other elements to be separated from the red blood cells so that Tami will receive a transfusion comprised of only red blood cells in the future. This will reduce her risk of a reaction to the other elements in the blood that aren't a vital part of the transfusion.

Also her hives  have already dissipated so her skin is fine today.

How Tami is Feeling

Well, yesterday may have been ok for Tami but today was really rough:( Tami needed a platelet transfusion like she does most days.  However, today she had a severe reaction to her platelet transfusion.  She broke out in hives all over body.  The doctors gave her Benadryl and put aloe on her skin.  The transfusion had to be stopped immediately.  Tami needs these transfusions until a match can be found.  Without the transfusion, Tami's blood pressure dropped and she broke out in a sweat and felt faint.  

The doctors feel that the vagus nerve is causing the problem.  They will have to use a different procedure to give Tami platelets from now on because of her severe reaction.  

Tami is going to have a blood transfusion tonight.  The nurse will stay with her and monitor her very closely.  I will update the blog as soon as we know anything tomorrow.

How Tami is Feeling

Update for Yesterday:)

Tami had a pretty good day.  She was able to go for two walks and was hoping to go for a third later in the evening.  She was eating betting which is great news.  She did not require any blood or platelet transfusions today.  This was one of Tami's better days in awhile but she still desperately needs to find a bone marrow match.  It is so important to find a match to fight MDS.

Iolani Fair Donor Drive

This Saturday, April 18th, the annual Iolani Fair will be held in Honolulu, Hawaii.  The Hawaii Bone Marrow Registry will be conducting a donor drive at the fair.  Even though the drive is not specifically for Tami, her match can be found anywhere.  If you live near Honolulu, please plan on attending the fair.  The great news is that to register as a donor in Hawaii is free no matter what ethnicity you are.  Here is some general information regarding the drive:

Iolani Fair (2)
April 18, 2009
12:00PM - 8:00PM

Telephone Number: 808-673-5747

Drive Location: Iolani High School
Address: 563 Kamoku St.
Honolulu , HI 96826

If you would like to contact the Hawaii Bone Marrow Registry directly, please feel free to do so. They do not have a website.

Phone: (808) 547-6154
Toll-free: 1-877-HI-DONOR (1-877-443-6667)
FAX: (808) 547-6979

St. Francis Medical Center
2228 Liliha Street, Suite 102B
Honolulu, Hawaii 96817

• Testing is Free
• Please contact the HBMR to learn more about eligibility requirements

The fair has many fun attractions and looks like a blast.  Maybe Tami's match will show up and become a member of the registry!!

Fighting MDS and Winning (Update on Roger)

We previously told you the story of Roger Contreras.  As you know, Roger also suffers from MDS and has a website, IHaveMDS.com.  Roger was able to receive a stem cell donation from his sister.  From time to time we would like to update Roger's progress.  

We are happy to report that Roger was able to leave the hospital on April 9, 2009. Roger was placed in a home that is a little less than a mile and a half from the hospital.  He still has to check in at the hospital every morning and the rest of his day is based on the blood test results. Roger is still in danger of contracting pneumonia or graft versus host disease but we are hoping he continues to do so well.

How Tami is Feeling

Tami had a good day today.  She didn't need any transfusions which is a good thing for her.  Tami felt a little nauseous but all in all it was a good day.  

Tami would like to thank everyone for their calls, cards, and emails. She doesn't have very much energy so she hasn't been on the phone or the computer.  She appreciates it very much.  Thank you for keeping Tami in your thoughts and prayers.

How Tami is Feeling

Tami required another platelet transfusion today but, thankfully, overall she was feeling much better.  The blood test that the doctors performed yesterday showed no signs of any infections which we are so grateful for. 

Hopefully Tami's match is out there somewhere and will come to one our donor drivers or maybe Eve's or Matthew's.  We are praying Tami and Eve and Matthew and everyone else in need of a bone marrow transplant or stem cell donation find their matches so they can lead long and healthy lives.

A Special Thank You to Team Matthew

We would like to officially thank Team Matthew for all their help during the recent San Jose, California marrow drive for Tami!!  

Matthew is 27 years old and suffers from Acute Myelogenous Leukemia (AML).  He is also in need of a bone marrow donation.  Team Matthew has so many donor drives scheduled in the California area and a few in Oklahoma.  Remember, Tami's match may also be found at one these drives just like Matthew might be able to find a match at Tami or someone else's donor drive. 

We hope to continue to work with Team Matthew in the near future. 

The Boston Marrowthon

For those of you living in the Boston area there will be a donor drive on April 19th and April 20th for a little girl named Eve.  Eve has been living with Leukemia and is in desperate need of a bone marrow donation.  

It is important to understand that Tami's potential donor may be found at any bone marrow drive.  So hopefully on April 19th or 20th Eve and Tami will both find a donor.  

Please click here for more information regarding Eve's donor drive.  Our hearts are with Eve and her family.

How Tami is Feeling

Today was a very rough day for Tami.  She had to have another platelet transfusion.  Soon after the transfusion, Tami got the chills and started to shake. It was very scary. The doctors gave her some Demerol. After about 15 minutes, the shaking subsided then the fever returned.  

Tami was also required to have a blood transfusion today.  The doctors prescribed some Tylenol(for her fever) and some Benadryl (for her allergies). Her temperature did return to normal by the time the transfusion was over.

By 5:00 p.m. Tami was just starting to feel a little better.  We are hoping she can get a full nights rest.

The Tech Museum Donor Drive

Yesterday was our donor drive for Tami at The Museum of Technology and Innovation (better known as "The Tech") in downtown San Jose, CA. Many of our new registrants and even some volunteers were able to tour the museum for free as the second Sunday of each month is the day the museum has a "Free Day" opening their doors to those who might not otherwise be able to go in and enjoy the many exhibits and interactive areas of the museum.

We added 26 people to the National Marrow Donor Program registry yesterday, 24 of which were people who are ethnic minorities or people of mixed races! Two were Caucasian which is also great because 20% of caucasian patients in need do not find matching donors. But that's not all we did...

The media turned out in force! Here my new friend Paul, who is a member of "Team Matthew.org," is interviewed by a Mandarin reporter who came down to cover the drive for her publication. I was also interviewed by a different paper. We'll be posting links to the articles as soon as they are published. We're so grateful for the media interest yesterday and to Sal Pizzaro from the Mercury News who told his readers about the drive last week in his column. Their involvement is helping us to spread the word far beyond what we could accomplish ourselves.

One of our volunteers, Vicki, was featured in an interview for a local Mandarin TV news program that aired last night. You can see the clip on Youtube. John even got a 1/2 second cameo at the end of the clip :)

The night before I put together a bunch of signs I had printed at Kinkos. I really wanted us to have signs to more easily catch the attention of people entering the museum so that they knew we were there for a purpose. Included on our large signs were Michelle Maykin from Project Michelle.com, Tami and Matthew from Team Matthew.org. I can't tell you how much I appreciate that Team Matthew even sent 7 volunteers to help us out at the drive.

On the back were two "cheat sheets" in plastic sleeves to help out our volunteers who had never volunteered at a drive before. On the left was information about Tami including her condition and hospitalization. On the right were answers to questions about the donor program and registration process.

There was also a small pocket filled with Tami's business cards. They were offered to people who are already in the registry but wanted to help us spread the word by giving the cards to people they know and sending them to the website to order a test kit online. We also gave them to people who didn't have time to stop to register yesterday so that they could order an online kit for themselves.

For those interested, I'll show you how I made our multi-purpose signs in an upcoming post.

Here was my friend Maureen out on the street flagging down passing cars with her sign to let them know something was up. It hadn't occurred to me that we could have people outside so the next time we do a drive I'll create some large, bright arrow signs that simply say in bold letters "MARROW DRIVE TODAY →" that our volunteers can use on the street.

We had 5 tables to work with that day. This was the greeting table where people could approach to ask questions and pick up a testing kit.

This is our friend Vicki who was our "actor" in a PSA video that our friends at Savadelis Films came down to create for us.

Chuck and Jewel spent 3 hours creating a video to show people what it's like to attend a live donor drive. We'll be posting it on the Helping Tami.org website and they are also going to make it available to any patient who would like to put it on their website or blog as well as any donor programs that would like to utilize it. The Tech Museum even requested a copy for their video library!

Other friends from the wedding industry came down to help us out. Here Amy Frugoli from Twitterpated Weddings even brought her hubby James down for a couple of hours. And Jung and Natalie Wi, from Allure West Studios, both got swabbed to help Tami. Also Tami's colleague and friend Edward, and his wife Deena, came out to help us. Edward will have a cameo in the PSA that was shot that day. I'll be sure to point him out when the video is released.

And this is Melany from Shanel's Flowers and Frames. Her specialty is freeze drying and framing bridal bouquets. She swung by on her way to her family's Easter Dinner. Thanks so much for taking the time to come down Melany!

This photo by: Amy Frugoli

Hey that's me, holding a small sign while answering questions this really nice man had about the donor process.

Here's a little photo tour of what attending a live donor drive is like. Here Vicki approaches the greeting table where people receive their testing kit. That's Chuck Savadelis filming her for the PSA. Normally nobody will be creating a movie about you coming down to register. LOL

Step 1: The entire process takes about 10 minutes. A short registration form that is part of the kit needs to be filled out. Here is Deena filling in her form.

Step 2: A coordinator from the AADP will go over your registration form to make sure you are eligible to join the registry. John got the "OK" (and a sticker) to proceed to the next station.

Step 3: Using the mouth swabs takes less then a minute. All in all I heard people commenting they couldn't believe how easy it was to get registered.

I'd like to say a HUGE THANK YOU to all of the people who came down and got registered yesterday to our fabulous volunteers, to Team Matthew, Elizabeth Williams and Roqua Montez at The Tech, and to the AADP for all of their help in making yesterday happen.

Hopefully we found a match for Tami or any one of the 6000 other Americans in need.

How Tami is Feeling

I hope everyone has been having a nice holiday/spring break!! Unfortunately, Tami had to have another platelet transfusion today. But, they were able to take her off the antibiotic that was making her feel sick.  

As a special Easter snack, Tami had a slice of Qdoba cheese quesadilla and iced tea!!

Tami's Donor Drive is Today at The Tech Museum!

I was just watching the TODAY show when our local NBC11 news updated and guess what? There was our donor drive on this morning's tv news. Woo Hoo! I had to take a picture of the screen to share with everyone I was so excited about it :)

Hope to see you there today:

The Tech Museum of Innovation
TODAY Sunday April 12, 2009

11:00 - 3:00
The Tech Museum
201 South Market Street
San Jose, CA 95113

CLICK HERE to View More Details

It's Their Public Free Day - Tour the Museum for free after you register!

How Tami is Feeling

Tami had both platelet and blood transfusions today.  However, her fever has subsided!! The doctors are performing cultures and said nothing is growing in the cultures and that is a good sign. The doctors will check again tomorrow and if Tami's culture is still clean they will be able to remove her from the antibiotics. They make her feel bad so we are hoping she can stop taking them.

In other news, Tami moved rooms today.  Her new room was recently remodeled and is nicer.  She has been a patient in the hospital for one month so it was required that she switch rooms.

How Tami is Feeling

Well, we have good news and bad news today.  I always like to hear the good news first which is that Tami was not required to have any transfusions today.  The transfusions can be hard so it's always a good day when they are not required.  

Now, the bad news is that Tami's fever has returned.  The hospital had an infectious disease specialist examine her, but the doctor was unable to determine the cause of the fever. They gave Tami two intravenous antibiotics but Tami had an allergic reaction to one them.  She is taking Benadryl again to combat the allergic reaction.  

Tami will be unable to return home until the doctors can determine the cause of her fever.  I'm sure Tami is disappointed since she was really looking forward to being able to sleep through the night.

Cafe Press Order

I placed an order with TheHelpingTami.org Gift Shop through Cafe Press last week and it was delivered yesterday by UPS.  I ordered the tote bag which is really nice, the golf shirt, and the dog t-shirt. Now, my dog, Daisy, is not thrilled with wearing clothes, or Halloween costumes, or bandanas but I keep trying.  Daisy is a Labrador Retriever and my daughter tells me too big to dress up.  It seems there is a rule that it's ok to dress a small dog but not a large one.  I personally think Daisy looks adorable.  

She did get treats and I told her it is for a good cause:)  Daisy and I are going to start walking to get the word out!

All the Way from Japan

What a beautiful picture.  A coworker of Tami's that works in the Japan branch of Tami's employer recently sent this photo which she took near her house.  It was so nice of her to send to cheer Tami up.  We can't thank her enough.  

If you have friends or relatives living in Japan they are able to join the Japan Marrow Donor Program and become a member of the international registry.  Any individuals of Japanese decent joining the registry increases Tami's chances of finding a match. 

Of course, there are other donor programs in other Asian countries also. For more information regarding these programs please visit HelpingTami.org.  The registry needs individuals of all ethnic backgrounds.

Facebook Group!!

Yay!!!  Our group on Facebook has officially reached 200 members.  If you are a member of Facebook please feel free to join the Helping Tami group and also invite all your friends to join. It's an awesome and free way to get the word out about Tami's condition!!

How Tami is Feeling

We are so disappointed to report that Tami was not able to go home today like originally thought:(  She developed a fever overnight and the doctors insisted she stay so they could determine the cause of the fever.  The fever did go away today so maybe she will be able to return home soon.

Sal Pizzaro Rocks!

I sent out a brief request to Columnist Sal Pizzaro at the San Jose Mercury News around 2 weeks ago asking if he could help us to publicize Tami's upcoming Marrow Donor Drive at The Tech Museum this Sunday. Yesterday he did! YAY!

http://www.mercurynews.com/salpizarro/ci_12092328

And I know people read about it because I received a few emails from them letting me know that they are spreading the word via email to their friends, colleagues and family members to urge them to go down to the Tech Museum on Sunday to get registered.

One message that me LOL said at the end that I had made her wedding veil 10 years ago! For those who didn't know: I've been a couture bridal accessory designer here in the Bay Area for the past 12 years making custom bridal veils, tiaras, hair pins, jewelry and cake toppers. It was great that one of my clients from so long ago recognized my name after all of these years and wants to help my cousin.

Thanks to Mr. Pizzaro and to all of you who have helped us to spread the word with your emails, blog posts, tweets and Facebook updates. I'm certain we are going to have a great drive on Sunday!

How Tami is Feeling

Good news for today.  Unless anything changes overnight, Tami will get to go home tomorrow. She is required to have daily platelet transfusions and daily intravenous medications so she will have to return to the hospital everyday as an outpatient to receive treatment.  Tami is anxious to go home and finally get a good night's sleep.  Hopefully, being home will help Tami feel better.

Just because Tami is going home, doesn't mean she doesn't require a bone marrow or stem cell donation.  She still really needs the transplant. 

I'm not 18 years old, so how can I help?

Ok, you're reading this and you want to help Tami, or other cancer patients, or do something to get involved but you are not 18 years old yet so you can't become a member of the national registry. How can you help? I know one great way to help is to become a member of Relay for Life through the American Cancer Society.

The Relay for Life Website describes the event as:

Teams of people camp out at a local high school, park or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Relays are an overnight event, up to 24 hours in length. There is not a required amount of money to raise in order to participate in Relay For Life. The only requirement to participate in Relay For Life is the $10 registration/commitment fee (per person) that is due upon registration.

You can sign up for an event by calling 1.800.ACS.2345 or visiting http://www.cancer.org.

I have a 16 year old daughter, Marina. Marina is a sophomore in high school this year. Her school participates in Relay for Life each year and hosts the event on their track. Marina's team last year raised over $2,000. The kids were so excited that they were able to help and they also had a great time at the event. Their goal for this year is to raise over $5,000. Since the event takes place overnight the track is lit with luminaries that are purchased by parents and students alike. The students really enjoy helping to raise money for cancer research and treatment.

To get an idea of how a Relay for Life team works you can visit Marina's page.

Fighting MDS and Winning

This photo was take of Roger right before his transplant.

While researching MDS, Stacie came across a website called www.IHaveMDS.com. The Author, Roger Contreras also has a blog.  Roger is a plumber from Texas.  Unfortunately, he was diagnosed with MDS in May 2008.  A major stopping block in Roger's path was the fact that he did not have health insurance.  Roger's blog is an amazing read.  He describes his illness and his treatment at a variety of hospitals (often with a surprising amount of humor, and how having no health insurance had delayed and affected his treatment. The best part of Roger's blog though is reading about his feelings through his ordeal.

This is Roger's actual transplant in progress.

The great news is that Roger was recently able to have a bone marrow transplant that will hopefully save his life.  It was a long, hard road to get to where he is today.  Even though he is healing and still in the hospital, Roger has selflessly agreed to feature Tami on his website and work to help her donor drive as well. As Roger said today in a message to Stacie "right now i have alot of time, and i don't plan on wasting any of it." We cannot even express how much that means to us.

After several days of being violently ill from the chemo used to destroy his marrow to give his donor marrow a chance to engraft, this is Roger finally feeling better and losing his hair a few days later. Here he is a third of the way through having his remaining hair shaved off. 

If you'd like to keep up on Roger's progress you can subscribe to his blog. On the right hand side of his blog you will see a subscription option to receive email updates in your inbox whenever Roger posts a new entry.

Also, Roger sells wrist bands. Until he is able to work again they are his only form of income to assist with his exorbitant medical costs. A great conversation piece, they help to raise awareness about Myelodysplasia with Roger's website url on one side and "Cancer Sucks" on the other.Please CLICK HERE to purchase one of his wrist bands with Paypal. We are requesting a donation of $5 but spreading the word is what's most important so please use the contact page on the website if you'd like a wrist band but can't afford to buy one at this time. Stacie has offered to cover the cost for anyone who wants to help spread the word about Roger's website while her supply lasts.

Live Marrow Donor Drive at Physical Therapy Associates

The "Live Drive" was last week but the drive continues online. If you didn't make it out to the live drive you can register on the National Marrow Donor Program (NMDP) website. The standard cost is $52 but thanks to a Federal grant the costs for this drive are:

Testing for Minorities is Free: For all Ethnic Minorities or people of mixed ethnicities there is no charge to be tested. To learn why minority testing is free please CLICK HERE.

Non-Minorities: Caucasians will be asked to pay a cost of $25.00 for their tissue typing test. When prompted please enter the following promo code to receive the discounted price: tami49

Jeff Fenton of Physical Therapy Associates in Spokane WA hosted the drive at his office. Check them out at http://ptassocspokane.com

A huge THANK YOU to Nita, Kellie and Leslie for organizing the drive! And to the Inland Northwest Blood Center for coming out to gather the cheek swabs from everyone who came to join the marrow registry.

They, along with the Spokane Grinders Hockey Club pulled off a very successful donor drive that will hopefully find a match for Tami.

Thank you all for turning out and getting registered that day!

Terry, Jeff and Don are some of the members of the Spokane Grinders Hockey Club.

Filling out the registration form.

The line was steady for the entire 4 hour drive. In total 61 people got registered that day! Thank you to all!

Thanks so much to the Rockwood Bakery on the South Hill.

They brought the big cookies for all of the great people who took the time to come and join the National Marrow Donor Program on Tami's behalf.

And a BIG THANK YOU to Taste Cafe for their yummy pastries for Tami's donor drive.

There were childhood friends, new friends, colleagues, and clients who all showed up that day...

And more friends like Zuly (above) and Char (below) came too. It was a great turnout!

The nice thing is that there's even a match for someone else in need might have been registered that day. I'd recently spoken to my friend Crystal who told me that the Project Michelle drives has found matches for 3 other people which they, and Michelle, are all thrilled by. They are still looking for a match for Michelle though. And who knows? Maybe we'll find her a match in Tami's drives. That would be so awesome.