African Descent Marrow Donor Urgently Needed to Save Zyreal

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.

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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.

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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

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!

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

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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.

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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

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

"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

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...

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

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.

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

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

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!

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

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....

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!

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

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)

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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
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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!
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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!!!
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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.
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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)
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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

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

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!

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

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

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

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.