Donor Drive Help for Team Anh

As you can imagine running a donor drive campaign is not a small effort. It takes a LOT of time and energy and one person cannot do it alone. That being said Team Anh is looking for some help. Their focus is on the Vietnamese community as Anh is Vietnamese and is suffering from Myelodysplasia just like Tami. Please email teamanh@gmail.com if you can help.

They need help with two things: (1) online help and (2) volunteers for drives.

- ONLINE HELP: Can you help them with blogging, twittering, and emailing about Anh's need to get a stem cell match. Please reference Anh's website: http://www.teamanh.org. They also need help maintaining her website.

- VOLUNTEERS WITH DONOR DRIVES: They urgently need volunteers who are willing to start a drive (it's very simple) or attend a drive in:
- South (Houston, Austin, Dallas, New Orleans)
- East Coast (New York, Boston, DC/Northern Virginia, Philly, Atlanta)

Check out their Facebook Group at: http://www.facebook.com/group.php?gid=66652656143

How Tami is Feeling

We have some more information regarding Tami's numbers.  At her last blood draw Tami's platelet count had risen to 75!!  As you remember, that's up from 69 at her previous blood draw. Her white count has risen to 3.9 up from 2.7 at her previous blood draw! Unfortunately, her red count had dropped slightly. We will post those numbers as soon as we have them.

As of 5/26/09 - Tami's count followed by the normal ranges:
White Blood Cells 3.8 (4.0 - 11.0)
Platelets (150-350)

Back on 5/1/09 - Tami's count followed by the normal ranges:
White Blood Cells 1.7 (4.0 - 11.0)
Platelets 16 (150-350)

We are still unsure what is causing Tami's numbers to rise.  It will be interesting to see how the doctors explain the increase.  Whatever the reason, we are just so happy that Tami is lucky and her numbers are rising and not dropping!!

Posted by Wendy. Learn more about her in this blog post

How Tami is Feeling

On Monday, Stacie told us about Tami's platelet count rising to 56! It's even higher now at 69 platelets!! No one can believe the increase. We are still very unsure about why the counts are rising on their own. Remember she is still well below the normal range of 150-350 platelets.

Tami has experienced some indigestion but has been able to eat her meals on a normal schedule which is good. We want Tami to be able to keep up her strength!

If all checks out ok with Tami and the donor her chemotherapy is scheduled to begin on June 22nd and will most likely run for 8-10 days. This can be a very hard time for Tami. All people are different, but chemotherapy can be very, very hard on the body. We will definitely update Tami's progress through her chemotherapy.

Posted by Wendy. Learn more about her in this blog post

The Difference 25 Days Can Make

Today I spoke with my mom and learned that some of Tami's blood counts are continuing to rise.

To put things in perspective when Tami was released from the hospital on May 1st to become a daily outpatient her platelet count was at 16. Normal counts are between 150-350. Yesterday at her blood draw her platelet count was at 56, which is still far below the normal minimum but so much higher then it was just over 3 weeks ago.

Her white blood count on May 1st was at 1.7 with normal counts ranging between 4.0 and 11.0. So imagine my surprise when I found out that yesterday her white blood count was at 2.7! Again still below the normal range but the improvement is something we are all thankful for.

Her red count has not risen significantly but her doctors don't understand why her white and platelet counts are rising this way. I posted the other day that no change was seen in her last marrow biopsy taken two weeks ago. On the conservative side this makes us incredibly hopeful that Tami will pass her pre-transplant health screening evaluation to make sure she is strong enough to undergo the transplant procedure itself. On the optimistic side I can't help but wonder how much higher her counts are going to rise on their own.

At this point in time her doctors say she does still need a transplant. Though the improvement is good it isn't good enough to delay her need for a transplant or make a transplant unnecessary.

Posted by Stacie (Tami's cousin)

Another Marrow Match for Tami?

Well here's some news. I found out that there is a second potential marrow match for Tami. What I don't know is how good of a match is it. Is it an 8, 9 or 10 marker match? The closer to 10 the better. This is reassuring of course because if for any reason the first match is unable to donate due to health reasons or is unwilling... We won't necessarily be starting over at square one. 

The thing is, is that the closer this second potential donor is to a 10 marker match the better the odds of Tami's transplant being successful. So if we find out that this match is less then 10 we will still push forward to guarantee Tami the best odds she can have and try to find her a second 10 marker match if the first one doesn't move forward.

Also of importance is to note that even with two potential donor having been located it does not mean we can stop searching for Tami. There are patients who have to find multiple matches before one is able and willing to donate. I Know Nancy Sakakura had to find 3 matches and others have had to find 4 or 5 matches before finally receiving the stem cells or marrow they need.

A special thanks to Nancy for her help and reassurances that we are on the right track with all we are doing to help Tami. Sometimes it's easy to feel a bit lost or overwhelmed when one takes on a national marrow donor drive out of the blue (LOL) as we have. Her support has helped us immensely in times of uncertainty.

Posted by Stacie (Tami's cousin)

How Tami is Feeling

Tami's marrow biopsy came back. To the doctor's surprise there was no change between the current biopsy and her last one. Which is puzzling given that her marrow has been producing some healthy new white blood cells and platelets. Once she is in Seattle at the Transplant hospital she will undergo another marrow biopsy as the doctor's would like to figure out why her marrow has been behaving differently the past couple of weeks. 

Her out patient visit yesterday revealed that her counts had dropped jut slightly. Let's hope it was a one day occurrence and that her next test two days from now will show another gain instead of a loss of healthy cells and platelets.

Posted by Wendy. Learn more about her in this blog post

Another Patient in Dire Need

This is first and foremost a blog for Tami and how she is feeling and updates on her condition. However, there are many patients in need of bone marrow and stem cells. Nick Glasgow is one of those patients and we would like to share his story with you because we would like to be able to help all patients find their matches.

Nick is of Caucasian (3/4) and Japanese (1/4) descent.  His best chance for a match is another individual of the same or similar Asian and Caucasian combination.  As you know, the Registry is in great need of minority donors and mixed ethnicities matches are the most challenging of all.  Nick lives in the SF Bay Area and has a phenomenal team of supporters who are launching a nationwide, online, marrow donor drive on his behalf.

Nick is 28 years old and thought he had strep throat but shockingly was diagnosed with a rapidly progressing case of  Leukemia. Please read the rest of Nick's story.  You can also join his Facebook page for more information and updates.

Please help Nick find a donor by joining the Registry and asking your friends to join.  His doctor told Nick he has 0% chance of finding a match. Imagine how devastating this news must have been. We believe that Nick has a chance, albeit a slim one due to his multi ethnic background but he does have a fighting chance if enough people join the registry!

Posted by Wendy. Learn more about her in this blog post

BIG NEWS - One step closer to Fred Hutchinson

I just found out that Tami will be admitted to the transplant hospital the first week of June to begin her pre-transplant health evaluation. If her doctors at the Fred Hutchinson Cancer Research Center find she is healthy enough to undergo the transplant her potential donor will then be screened to see if he is healthy enough to donate. If he is deemed eligible and is willing the actual preparation for the transplant will begin.

Overall the odds of the donation moving forward based on these two factors is 50/50.

If everything goes according to plan this is how things are shaping up in the coming weeks:

1. Tami moves to Seattle

2. Tami undergoes and passes her health evaluation.

3. The potential donor undergoes and passes his health evaluation.

4. The transplant will be scheduled.

5. Tami will undergo several rounds of chemo to destroy her damaged bone marrow. The amount of chemo needed varies from 4 to 10 rounds.

6. The donor will begin undergoing the injections that will make his marrow over produced stem cells so that they leave his marrow and enter his blood stream where they can be harvested. The donor will receive back the blood taken minus the extra stem cells.

7. The stem cells are flown to Seattle and Tami receives her transplant.

The entire process will still take several more weeks once Tami has been moved to Seattle. I will try to find out the typical timeline but I wouldn't expect a transplant to take place until late June or possibly even July depending on the hospital's transplant schedule and the donor's availability.

Posted by Stacie (Tami's cousin)

Update on How Tami is Feeling

Nothing new to report today.

Tami didn't have to go in for a blood draw but she will tomorrow.

We continue to wait for the pre-transplant evaluations to begin for both Tami and her potential donor to see if he will be healthy enough to donate his marrow to her. At the moment her move to Seattle most likely won't be until the end of the month. This means we have to be patient and continue to hope and pray that this donor is able and willing to give his marrow to her.

Her doctor did tell her that she was no longer neutropenic a few days ago. This means that her neutrophil count (a type of white blood cells) has risen to the point that she is no longer at higher risk to general infections. Well at least she wasn't when her test was done. The thing with blood and platelet counts is that they can vary widely during a 24 hour period. So her neutrophil count may be high enough to protect her at one point and then she can be at risk 12 hours later if her count drops.

They will continue to take precautions but this is great news as it shows her overall white blood count is improving bit by bit.

Posted by Stacie (Tami's cousin)

PLEASE HELP: Michelle's Need is Critical

I have to say that yesterday as I worked at the Red Mango Donor Drive my thoughts were with Michelle Maykin. I'd read in Michelle's blog on May 13th that her condition has reached a critical point. The news was more then sobering. It was heart rending. At her most recent office visit her Doctor had outlined her three options moving forward: To undergo more chemo and continue to look for a marrow match, to begin a drug therapy that might extend her life by months or to simply stop treatment and go on any vacation or trip she's ever wanted to go on.

Michelle and her Mom

Her doctor has warned her that her Leukemia is so treatment resistant that further treatments could be detrimental to her quality of life and that he guaranteed that despite their efforts her cancer would come back. Michelle's response leaves one to wonder where her courage, tenacity and optimism come from:

"I am only 27 years old. There is no vacation I want to go on before I die (I wouldn’t enjoy it with this dark cloud hovering over me.). I am not in denial. I understand that we are in unchartered territory and I am up against a ginormous wall. However, I am not fighting to live for a few more months. I AM fighting to cure myself of this horrible disease so I can enjoy life until I’m gray and old. I want to be there to support Van as he becomes an established businessman, to applaud Melanie at her graduation from med school, to be in the delivery room and welcome Melissa’s future babies into the world, to join a senior citizen bowling team with my BFF Mabel, etc. I would rather die fighting than throwing in the towel."

If you are of Chinese or Vietnamese descent and have not yet joined the national registry, please consider joining to see if you are Michelle's marrow match. This is wrong. Just so wrong that people like Carolyn Tam and Michelle are faced with death in the prime of their lives when their disease is treatable. A transplant is not a guarantee but for many patients it is their only chance. Their only hope.

If you want to try to help Michelle please don't wait. Every day counts. Please tell your friends about Michelle and ask them to tell their friends. Ask them to join the registry if they are of any Asian ethnicity but especially if they are of Chinese and/or Vietnamese descent as this is where she is most likely to find her match.

If you are Chinese, Vietnamese or any Asian ethnicity please CLICK HERE to order a free* marrow test kit. Read the information and click on the green "Request a Home Test Kit" button.

If you want to locate a live drive use the national zip code locator on the Be The Match website by CLICKING HERE.

*There is a Federal grant that covers the testing cost to people of any minority or mixed ethnicity descent to help diversify the National Donor Registry. Joining is simple and pain free. A short registration form and four cotton swabs is all it takes.

Posted by Stacie (Tami's cousin)