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)

_______________________________________________________


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!