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!