Tami Met Her Donor Scott at a Be The Match Fundraiser

I am thrilled to be able to post a heartwarming update about Tami, who most of you know because of the www.HelpingTami.org website I built for her when she was first diagnosed with a blood cancer similar to Leukemia callled Myelodysplasia in Feb. of 2009.

First I was able to report an anonymous match had been found. Then that her transplant had taken place. Then came the one year anniversary of her transplant. After one year the donor program allows donors and recipients to learn each other's identities if both parties are willing. So Tami met her anonymous donor Scott via the telephone and email in September of 2010 and we were able to see the face of the person we all felt such gratitude towards! Now here we are two years past her transplant date, she is still in remission and she was able to meet Scott in person less than a month ago!

Marrow Donor Scott Kikiloi met his recipient, my cousin, Tami Schwartz at the Hawaii Bone Marrow Donor Registry’s "Thanks for Giving" Hair and Fashion Show Luncheon at the Hawaii Prince Hotel on November 20, 2011.

Tami said:

I was honored to be invited to the 2011 Hawaii Bone Marrow Registry Fashion Show fund raiser in Honolulu to meet my stem cell donor Scott Kikiloi. Little did I know in February 2009 when I was diagnosed with Myelodysplastic Syndrome (MDS) it would lead my family to Honolulu to meet Scott, his wife Punahele, and his parents and extended family.

In June 2009 during my transplant, I wondered who this giving person was. After 14 months of waiting to find out, I received a letter with Scott’s identity. I immediately contacted him and found out he was everything I imagined. I have been fortunate to get to know Scott and his wife Punehele through email, Skype, and Facebook this past year and was very excited to finally meet them in person. When we finally got to meet at the fund raiser, he was everything that I expected him to be. It was a very emotional day for all of us.

Scott had joined the National Marrow Donor Program Registry back in 1996 when he learned about a little girl in Hawaii named Alana Dung who needed a bone marrow transplant.

Not only did we get to meet Scott but meeting Alana Dung's parents, Stephen and Adelia Dung was very hard. To think that their family lost their little girl but that her memory has continued to help over 100 people from the various donor drives that were held for her."
When Alana Dung was diagnosed with Acute Myeloid Leukemia in 1994 there were 16,500 Hawaii residents who had registered to donate their marrow to patients in need.  As word spread about Alana's diagnosis the state reached out to help her. Over 30,000 people joined the National Marrow Donor Program Registry in Hawaii to try to help Alana.

I've been told that once Alana's need became public you couldn't walk down the street without seeing a marrow donor drive taking place at schools, businesses, malls, special events and at churches. . . Everyone wanted to help. Sadly, after receiving a transplant in the summer of 1996 Alana passed away a few months later after suffering a relapse.

Along with the Alana Dung Research Foundation her parents created, part of Alana's legacy is that over 100 patients have been given a second chance at life by finding a donor from amongst those who registered to help her. Someday that number will certainly be in the hundreds or even thousands as each new day brings new diagnoses and new patients all around the world who will continue to benefit from those who joined the registry to help this precious little girl.

"The timing of this event during the Thanksgiving season made me think more and more how thankful I am for Scott’s gift and hopefully our message can reach more people to sign up for the National Bone Marrow Registry to help give the gift of life to others as Scott did through the Alana Dung registry in 1998. I cannot thank Scott enough. Spending time with Scott and his family showed me what great, giving people they are. Scott and I talked about anything we can do to get our story communicated to others to encourage them to sign up for the Bone Marrow Registry will hopefully help others in the future. I know just from the stem cell drives that were held when I was diagnosed have at least three people to date who have been donors and another two that have been called to be possible donors.

Mahalo to Scott!

Next are excerpts from Scott's point of view from The Gift Of Life Through Marrow on Midweek.com by Yu Shing Ting:

"Kikiloi, 36, says he has no regrets on becoming a donor, but admits it was not an easy choice at first. He just needed a better understanding of the process. He also had a lot going on at the time with a “pretty demanding” job at Kamehameha Schools as cultural assets manager, and working on his Ph.D in archaeology at the University of Hawaii.

Scott donating his stem cells by PBSC to help Tami.

There also was a trip he was planning to the Northwestern Hawaiian Islands for his dissertation on two of the islands there, which was not easy to coordinate. “I would be on these islands in the middle of the ocean for about a month to survey the site and get samples,” explains Kikiloi, who grew up in Kaneohe and lives in Manoa. “It’s really rugged, difficult islands to live on (about 300 miles away), so I needed to be in good health. If there was an accident or if you needed medical attention your life could be at risk."

Scott, his wife, parents, sister and brother in-law.

“But for me, I tend to help people. I thought about it, and if I was the only match, I’m not going to leave someone hanging like that. It just came down to that it was something I felt I should do, and I ended up doing the donation a few weeks before the trip.”

“I’d like to encourage people to join the registry,” says Kikiloi. “(For me) it was definitely worthwhile. Being able to save someone’s life is an honor and a privilege.”

Adelia Dung spoke as Tami watched from the stage.

The top image above is Tami and Scott with their families attending the Luncheon.

The lower image is of her family with Roy and Annie Yonoshiro. Roy works at the Hawaii office of "Be The Match" the National Marrow Donor Program and Annie is a volunteer there.

I've actually spoken to both Roy and Annie by phone when Tami was first diagnosed and I was doing as much research as I could to learn how to help her. It's really neat to now have "faces" to piece together with my memories of speaking to them by phone. Annie and Roy helped to coordinate Tami's attendance at the fashion show and are dedicated advocates to helping more people like Tami find the life saving matches they need by growing the Hawaii bone marrow registry with more potential donors.

A poster for the event itself.

Scott, Tami and Paul

And a special thanks to Tami's cousin Paul Mow for allowing the use of his photos in this blog post.

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While Tami's happy ending continues to unfold there are still approximately 6000 American patients searching for a match every day and thousands more world wide. Just like Scott you can help one of them if you are a match.



Joining the registry is virtually pain free and donating usually almost is. WIth the new PBSC method of stem cell donation 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.

IN THE UNITED STATES

If you live in the United States please go to the Be the Match website and enter your zip code to locate a live drive in your area.

Or CLICK HERE to order a test kit that will be mailed directly to you.

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ALL OTHER COUNTRIES

There is also a list of international marrow donor programs at this link on my Marrow Drives website.

Please contact a program near you to locate a live drive or registration location. In most countries testing is simply swiping the inside of your cheeks with 4 cotton swabs while in some a simple finger prick for a blood sample is all that is needed.

Introducing Tami's Stem Cell Donor!

I'm sure you've all wondered at least once or twice: Who is Tami's donor?

This is Scott, the person who gave Tami a second chance, literally saving her life, by donating his stem cells to her. Scott joined the marrow donor program registry in 1994 and was quite surprised when he was contacted in May of 2009 and told he was a potential match for a patient in need.

Statistics held true. It's said that most patients will find a match within their own ethnic group. Scott is part Japanese but also part Native Hawaiian and Chinese. And even though he is multi-ethnic, he was a perfect 10/10 match for Tami who is of Japanese descent.

Scott's story about how he became involved in the National Marrow Donor Program began years ago with a little girl, stricken with Leukemia, named Alana Dung. In his own words by email he said:

I can't help but think how crazy it is, that if I didn't see Alana Dung's donation poster at campus center at University of Hawaii at Manoa when I was 19 years old, I would have never gone up to the donation booth and registered. Fast forward now 15 years and it has made a difference. How incredible.

Adelia Dung hugs daughter Alana.
Photo by Alvin Chung from the Star-Bulletin

Little Alana Dung lived in Hawaii, had Leukemia and was 3 years old when she passed away after relapsing following a bone marrow transplant from an anonymous donor in Taiwan. Her family has since created the Alana Dung Foundation "To encourage research efforts by providing financial support to worthy research organizations and individuals throughout the world for clinical studies and research directed at improving the quality of life for sick children, improving treatment and preventing disease" as her legacy.

I actually heard about Alana when I was working on creating Tami's donor drive effort. When Alana's parents were told she would need a marrow transplant the state of Hawaii literally rose up to save her. Over 30,000 people joined the registry in 2 months time. That is a phenomenal number based on both the total quantity and speed the registrations were gathered in. Of the 30,788 people who joined the registry to try to help Alana, one (Scott) would go on to help Tami overcome Myelodysplasia by donating his stem cells to her 15 years later.

Mokumanamana and the "Tourist" Hawaiian Islands

Scott, a doctoral candidate in archaeology at the University of Hawaii, says the timing of the donation request posed a potential conflict. He was about to depart on a field work expedition to Mokumanamana (aka Necker) Island, (a very small, remote and inhospitable island) many miles from the Hawaiian tourist destinations most of us are familiar with.

After talking to trusted friends and family members Scott ultimately followed his desire to help others in need and decided he wanted to give the donation. But he was concerned about the timeline and wanted to give the donation as quickly as possible so he would have more recovery time before leaving on a 21 day "Survivor" like research marathon on Mokumanamana Island .

Doctor's had first considered a bone marrow donation rather than a stem cell donation for Tami but due to Scott's upcoming field work, and the possibility of lingering soreness at the donation site if he gave marrow, Tami's doctors decided to do an adult stem cell donation instead (aka PBSC or Peripheral Blood Stem Cell). This meant that Scott took a medicine called filgrastim for several days to stimulate the marrow production in his bones, causing stem cells to be released from his bone marrow into his bloodstream to be harvested.

Stem Cell Donation Day!

While the Be The Match website says:

PBSC donors can expect to experience a headache, or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection. Most PBSC donors report that they feel completely recovered within 2 weeks of donation.

Scott said the only side effect he experienced was that he was tired the rest of the day and slept a bunch but felt almost normal by the next morning.

Scott's fiance was at his side the entire day. He said it was great to have her there because he was supposed to keep his arms outstretched and clench two tennis balls, one in each hand, to help his blood circulate. So when his nose and face itched, she scratched it for him.

From Hawaii to Seattle... Scott's Stem Cell Donation arrived at Fred Hutchinson for Tami's transplant. This is how the majority of transplants take place, with the donor and patient living in separate cities and even countries. The stem cells can be flown to the patient's location so even international donations are extremely common and now comprise at least 50% of the transplants that take place.

You may recall that Tami's Transplant Doctor said that she received a "very good dose of stem cells." When Tami told Scott this he laughed and said they kept him on the apheresis machine (a type of centrifuge that separates the stem cells from the rest of the blood) for 8-9 hours. I've read most people are on the machine for around 4 hours at a time and may be asked to donate over the course of 1-3 days. He said they kept looking at him and he was doing so well and felt so good that they kept him on apheresis for twice the normal amount of time. The machine works by removing blood from one arm, running it through the separating machine, storing the stem cells and returning the rest of the blood back into the donor's other arm.

Post Donation with Nurse Betty at the outpatient clinic.

Says Scott:

Giving bone marrow/or stems cells is a really important thing to think about on so many levels. It's a part of your body, the very essense that creates blood and life in you. The donation process is also complicated by the fact that the recipient is anonymous. Very little information is given about the person to protect their privacy. It makes it very hard though to connect in a meaningful way to the person and struggle, and really assess what your true feelings are about the situation...

I think on a really basic level my first instinct is to help people, so I decided I had to try and do this before I left on my trip...

Scott and his family.

To finally have a face and a name and know that Scott is the person who saved Tami's life was quite overwhelming. I felt ecstatic and elated then broke into tears when I first saw him in a photo. It was like gaining a new family member but no one had a baby or got married. Such an unusual circumstance.

Our family can never thank Scott enough for his altruism and compassion. We would like to thank him for giving Tami back her health and her future. With the deepest gratitude I also want to say thank you for giving her back to her friends. She means so much to so many people, many of whom I've met in person, spoken to on the phone or have emailed with since her diagnosis. The way everyone has reached out to help her from her colleagues (past and present), neighbors, childhood friends and even people who don't know her but feel connected to her through her website and blog, has been overwhelming at times, in a great way. We realize and appreciate that it's because Tami is such an incredible person that so many people have made such incredible efforts to help her along this past year and a half.

Someday I'm certain I'll be creating a blog post with photos of Tami and Scott meeting in person for the first time. Until then, please continue to let others know about this blog and Tami's website. Please encourage them to consider joining the National Marrow Donor Program. Like Scott, they may one day be able to give someone the gift of life. How many of us are ever afforded such an opportunity? I joined the registry in 1995 and am still waiting for my phone to ring.

When I asked Tami if she wanted to include a personal message to Scott in this blog post she said absolutely. And here it is:

September 21, 2010

Dear Scott,

In February 2009, when I was diagnosed with Myelodysplastic Syndrome (MDS), I first asked what MDS is. I had never heard of the disease and we didn’t have a family history of the disease or leukemia. My doctors informed me that they’re not sure what causes the disease, but what they did know was the only way to cure the disease was to undergo a stem cell or bone marrow transplant. When I began to research the disease, I couldn’t believe it. I also couldn’t believe when the doctors said that I would need to find a donor and that the statistics for matching people of Asian descent was low. I thought how would I ever find anyone? I still to this day was amazed that three matches were found for me. I remember the Seattle Cancer Care Alliance Hospital (SCCA) letting me know that two of the three people were contacted but the best match was the first, an Asian male in his 30’s in the US. When I received my transplant last June 2009, they told me that the stem cells had to be flown into Seattle so I knew the donor wasn’t from Seattle, which has a large Asian population. To this day, I thought it will be someone in California.

So, June 30, 2010, one year post-transplant, I requested the form to fill out to learn the identity of my donor. I still remember the paperwork that I was given at the SCCA warning me that I may not ever know the identity as some people don’t reveal who they are. They also warned me that the person may be so different from me and wouldn’t want to be contacted. The only thing I thought is that I’m filling out the form and taking the chance that I would get to meet the person someday that saved my life. All I ever wanted to do was to thank him for giving me another chance.

Well August 27th was an amazing day for me. I received the letter from the SCCA informing me my donor was you and that you were from Honolulu. I thought I can’t just call you out of the blue so I’ll email you first hoping you would respond. You did. I then called you that night and you were everything that I imagined the person could be all these months. I could tell you are an extraordinary, considerate, and thoughtful person with a heart of gold. These past days emailing back and forth have been amazing and all I can say is that I can’t wait to meet you, your fiancé, and family in person. My family and I are looking forward to spending time with you in Honolulu. I'm hoping that more people can read our story and will hopefully generate more donors like yourself. I still can't believe its been 15 years since you donated at Alana's drive.

Thank you so much for the gift of life and for becoming a special person in my life.


Tami

And a few more people who wanted to say thank you to Scott! They include some of Tami's incredibly supportive colleagues, friends of the family, and some of my friends here in California and nationwide. I'll be creating a "Thank You Scott" photo album so If you would like to send a thank you picture to add to it please make one and email it to photo@helpingtami.org

Some of Tami's colleagues who, no joke, may be some of the most, if not the most supportive colleagues ever! Not only did many join the registry on her behalf, they held fundraisers, brought food by the house and did all kinds of things that made things easier for her and her family during this very difficult time. And it wasn't just her local colleagues who pitched in. It was a huge amount of love and concern from employees nationwide who reached out and did all they could to support her.

More of Tami's Colleagues

Friends at Flextronics

Family friends who wanted to thank Scott personally...

And a friend who recently moved to the islands giving a classic Hawaiian greeting!

Click Image to Enlarge

Besides asking me how Tami was doing each week, many of the people in this photo joined the registry on Tami's behalf and many helped out (hands on) with the donor drive effort here in California. Beside me are my friends Jewel and Chuck Savadelis who shot the PSA video at the donor drive at the Tech Museum last year. Maureen in the front left volunteered at the same drive. George, to the right of Chuck actively supports the Leukemia & Lymphoma Society. Loretta (peeking out from the center of the back row), Keith (third from the right in the second row), and John (to the right of Keith) all helped to produce the What's up Wit' That episode about Bone Marrow Donation that won the Wave Award last year and aired nationally on Public Access TV. And Keith, Loretta and John all volunteered at the Tech Museum donor drive. You can see John holding a sign in the video and Loretta sitting at the swabbing table.

People who know me well know I have a bunch of dog loving friends who I met years ago on Dogster.com. They were really a pillar of support to me when Tami was first diagnosed and throughout the time since. Over the years they have become like family to me and they in turn took an interest in Tami's illness as if she were their family too. In tribute to Scott they made these pictures to thank him for donating his stem cells to Tami...

Ming and Dottie. Dottie's owner thought for sure the photo would be of Ming calmly posing with his sign on and Dottie reaching over and eating Ming's sign. LOL

Rosie says Thank You Scott!

Daisy's owner, Wendy, was the person who helped me to maintain this blog back when we were posting every day with updates about how Tami was feeling and doing. Wendy has been a longtime member of the National Marrow Donor Registry and has been contacted on several occasions as a potential donor. So far she has not had the opportunity to make a donation to a patient in need as better matches were located in two instances. Sadly, the one patient she was the best match for became too sick to receive a transplant.

And this is my pup Kitai who was very happy to pose for this picture.

So Thank You to Scott from all of us! The debt of gratitude is immense and can never be truly expressed. We look forward to one day thanking Scott in person for his selflessness and hope his story will inspire others who have been afraid to join the marrow registry to go ahead and sign up. Maybe they will also be able to save a life someday.

CLICK HERE to learn how you can join the marrow donor registry in person or using a mail in test kit!