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Monday, December 12, 2011

My Cousin Tami met her anonymous bone marrow donor!

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.

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.


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.



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.

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