To Read Tami's Story from the Beginning

Just CLICK HERE. Her blog begins on March 12, 2009 with a post titled "Tami's Myelodysplasia Diagnosis." Then at the bottom of each post, click on the words "Newer Post" located just below the comments section on each page.

Wednesday, September 30, 2009

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...

Tuesday, September 29, 2009

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.

Friday, September 18, 2009 Volunteer Appreciation Day

So last weekend the Asian American Donor 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.

Monday, September 14, 2009

Out of the hospital and feeling better. Day +77

Tami stopped by her company's Seattle office the other day to get her laptop worked on and had a visit with her friends (colleagues) Liz, Mike and Stephanie. It's so great to see her out of the hospital again and getting some fresh air.

All in all there isn't a whole lot of news to report on how Tami is feeling.

Tami's GVHD is still making her skin flakey. Her doctors are already tapering back on her Prednisone so hopefully she won't need it too much longer.

Thankfully her viral tract infection is subsiding and she is no longer in any discomfort from it.

She is doing so well again that she only goes for a blood draw once a week.

On top of that she and my mom have been going shopping. I think that may be her favorite pastime while they are in Seattle.

And here are some photos of the gorgeous art work that fills the Seattle Cancer Care Alliance Hospital. When I visited Tami last month the art was very much a big surprise to me. I felt like I was in a museum instead of a hospital because there was so much of it and it was all so striking.

I'm glad the hospital is able to make the floors so aesthetically pleasing. It certainly helps to create a feeling of peacefulness for the patients to enjoy.

The piece above was a wall piece of glass art by artist Laurie Burns.

And close ups of the tiles of glass. It was really gorgeous.

I loved this metal bench by Steve Jensen titled "Swirls."

This piece had no tag so I don't know who the artist is or the title of the piece.

And I loved this koi painting titled "Balance" by artist Jeanne Keckler.

But this was my favorite piece. The tag on the wall said:
Carved from a naturally fallen cedar tree from Duvall, Washington, the Healing Tree has interpreted images from many cultures carved into it, including the breast cancer ribbon, a Japanese Reiki symbol, a heart as a symbol of love, healing hands that embrace a figure 8 as an infinite healing symbol, a Hopi Indian healing symbol of a badger claw, a Buddhist triskelion spiral, and an ancient Chiron healing symbol of a willow. All of these icons have been combined and interwoven, creating an abstract carving of love and hope.
The Healing Tree was carved by artist Steve Jensen from a naturally fallen cedar.

Thursday, September 10, 2009

Artisan Pizza for Dinner? Day +72

As of Monday Tami is back to being an outpatient and though she is still dealing with the lingering effects of both the skin GVHD and viral infection she is doing better. The GVHD is responding to treatment and the rash is healing. That means at the moment all of her skin is peeling. Not fun. And the other viral infection, while not gone, is also under control.

The Hickman Catheter that was implanted in her chest is now removed, hopefully for good. YAY! And now she has a pick in her arm to help with her infusions.

Here's something fun, when I was talking to my mom yesterday she said tonight she and Tami will probably have pizza for dinner. Oooh I'm jealous. It's not just any pizza...

While I was in Seattle I hoofed it on over to Zaw one night to pick up an "Artisan Pizza in the Raw" to bring home and bake for dinner. This is such a cool company. It's the most eco-friendly and gourmet pizza place I've ever seen. Among other features they say whenever possible they use seasonal, organic, unique, and local ingredients. Their delivery service is by bicycle and their shop has a "green" wall of plants, planted horizontally, that grow vertically to help create oxygen.

Here is the "green" wall.

And a close up. I don't understand how they get the plants to stay in place but somehow they do. The plants go in with their roots towards the wall but then the plants make a 90 degree turn and grow vertically. Very cool.

And this is the first pizza place I've ever been to that pairs their pies with premium beers and wines. LOL but their ingredients are so gourmet it only makes sense that their drinks would be less then typical. For instance here are a couple of pairings from their menu:

Shroom Fest
Gently sautéed portabella, crimini, and button mushrooms from Ostrom’s in Olympia meet roasted red onion, fresh thyme, garlic and shroom-enhancers of asiago and mozzarella.

Pairs with: Chardonnay, Porter

And this one...

Savory Savary
A combination of sliced Isernio’s hot Italian sausage,
maple-syrup-caramelized red onion and fresh organic sage. Served with a blend of asiago, parmesan and mozzarella.

Pairs with: Reisling, Premium Lager

This was our pizza that evening.

If you have the chance you should order one or two. They only take 10 minutes to bake. I wish we had a Zaw down here in California. Hope Tami and my mom have a great dinner tonight!

Saturday, September 5, 2009

Matthew Needs our Help and Prayers

Our friend Matthew needs our help now more than ever. For over two years now Matthew has been fighting Acute Myelogenous Leukemia (AML). In May of this year, Matthew received the good news that a potential donor had been found but was not available to donate until August 5th. Unfortunately, at the end of July, Matthew received devastating news, not only was his cancer back but his potential donor was no longer available and wasn't even in the registry anymore!!

Potential donors must be aware that if you are on the marrow registry you must be willing to donate your stem cells or bone marrow. Can you imagine having cancer and finding a match only to learn that the potential donor is unwilling to donate!! In his blog, Matthew states, "I do not know what is worse….knowing someone out there can save your live but won’t do it….or not having a match at all."

What happened to Matthew is so cruel. Please if you sign up to be on the registry you must be willing to go through with the donation. Someone that is dying is counting on you.

Fifty percent of the time potential donors are either unwilling (for a multitude of reasons) or for heath reasons are deemed by the doctors as ineligible to donate. So it is also very important that you take care of yourself and your health. Remember if you are a match for someone, you are saving their life!!

SF Bay Area Vietnamese Marrow Donor Drive Today

It only takes a short registration form and 4 cotton swabs to join the National Marrow Donor Registry. If you are a match for Anh or another patient in need 70% of donations are now given through a blood harvesting method and not from marrow extracted from the hip bone. The harvesting process has improved dramatically over the years but few people know this.

Host: Team Anh - Save Anh's Life
Date: Sunday, September 6, 2009
Time: 9:30am - 4:00pm
Location: Compassion Meditation Center
Street: 17327 Meekland Ave
City/Town: Hayward, CA

View Map

This drive is to try to find a match for Dr. Anh Nguyen and the many other Vietnamese Americans (like our friend Matthew) all searching for a matching marrow donor.

Anh has the same disease Tami had, Myelodysplasia. She has had a few scares since her diagnosis but has been working hard with the help of her brothers to locate a match by holding numerous donor drives some small and others large. At the Marian Days Festival they signed up over 2000 new potential donors!

If live in the Bay area and are of Vietnamese descent or know people who are that live here, please let them know about this drive. This is an all day donor registration event. I'll even be there for a few hours helping out. I hope some of you read this and come by to join the registry. If you do make sure to find me and say hello.

Thursday, September 3, 2009

GVHD is Under Control Day +65

Tami is not up for visitors at this time.

Some good news. Tami's skin GVHD is responding to treatment. Despite the fact it messes up her blood sugar which then requires insulin to correct, her doctors resumed using Prednisone to treat her latest flare up. Her rash has already begun to subside so that's great news.

Unfortunately at this time Tami's immune system is once again even more compromised due to the Prednisone. It helps to reduce the activity of the donor T-cells which basically means it semi-shuts down her immune system becuase the T-cells are attacking Tami's own tissue. This time it's her skin. Last time it was her intestines.

You may have noticed that for the first time since June 22nd Tami's illustration does not include her Hickman Catheter. Her doctors determined that it may have been an infection in her Hickman Catheter that was causing her other infection so they removed it yesterday and will replace it with a new catheter in 48 hours. I hope they're right. It would be great if she could start next week free of infection and clear skin.

On the good news front I am excited for the opportunity I've been given to attend an event next week to mingle during a networking session and help to spread the word about the need for people of Hispanic and Latino descent to join the National Marrow Donor Program. I will be working with Ivonne from the Even though the AADP started out as the Asian American Donor Program they have added a Hispanic and Latino Recruitment Coordinator to their staff as they have evolved to encompass more ethnicities then just Asians. I'll post details about the event after it's taken place.