Tuesday, January 23, 2007

Happy Birthday Nicole

Sunday night we celebrated my niece Nicole's 10th birthday! Her birthday is really today.

She is one in a million. I'll tell you why.


It is a miracle that she has lived to reach this milestone in her young life.

Six years ago, at the age of 4, she was diagnosed with chronic myelogenous leukemia, or CML.

She was on vacation at Whistler, BC and tried to get out of the pool and found she could not walk without exruciating pain. Within a couple days she was at Children's Hospital and Regional Medical Center with this "one in a million" chance diagnosis. This type of leukemia is extremely rare in children.

The Ooka and Howard families went into panic mode. How could this beautiful, perfect child have cancer?

The families along with friends and a much larger community gathered for bone marrow recruitment drives. Through connections Washington's Governor Gary Locke got involved. Other well-known people such as Jamie Moyer of the Seattle Mariner's and Moyer Foundation helped out. There was a lot of press about Nicole's situation which highlighted the need for more minorities and people of mixed race to get on the registry.

There hasn't been much press lately so I'm hoping with the power of the internet, we can get more folks registered.

The only cure for this type of leukemia is a bone marrow transplant.

At the beginning of the panic, Nicole's older brother was tested, he was not a match. We all got tested. No match. We scoured the NMDP, National Marrow Donor Program, world-wide registries and there was no match. What were we going to do? Our only option was to recruit, recruit, recruit.

We paired with the Mavin Foundation. They eventually created the Matchmaker program. This program is the only national program with the goal of recruiting mixed race donors on to the national bone marrow registry.

Nicole's challenge is she is of mixed race. If you look at our world today, how many people in the United States, and the world, are of mixed heritage? Many. Minorities and people of mixed race of the world have a real challenge if they need a bone marrow transplant. This challenge will only get more acute the more diverse our population becomes.

Through Nicole's struggle and the many, many bone marrow drives held on behalf of Nicole, many matches have been found for others in need. Nicole has affected many peoples lives and has moved politicians to create laws to help those in need of a bone marrow transplant. For example, then Washington Governor Gary Lock signed an executive order allowing state employees to donate and receive bone marrow transplants without having to take leave. See article here.

This is where faith comes in. I grew up Catholic. I believe in God. The year Nicole was diagnosed, a leukemia drug called Gleevec was approved by the FDA. No protocol had been established for children. Trish and Rob, Nicole's parents, did tons of research on Gleevec and even contacted the man who developed the drug. He lives in Oregon. They arranged to meet him, talk to him, get information from him. Then they came back to Children's Hospital to try to get the physicians here to prescribe this medicine for Nicole. The physicians gathered all the research Trish and Rob had done, along with their own research and Nicole was the first child at Children's to be put on Gleevec. We were blessed that this life saving drug was approved, just in time for Nicole.

Nicole is currently in remission. We have been blessed with 6 wonderful years with this child that we most certainly would not have had. Without a bone marrow transplant, or Gleevec, Nicole would have died many years ago.

The downside of Gleevec is it is not a guarantee and the only known "cure" is a bone marrow transplant. I want a guarantee. If I think about it too long I panic. There is still no match for Nicole on the registry, 6 years later. Think of all the people that have no drug to keep their cancer or diseases in remission. They die waiting for a bone marrow match.

We still need to get many, many more minorities and multi-racial folks signed up to be bone marrow donors. Sometimes people need to get educated on what being a bone marrow donor means. Get more information here.

The federal government has funded minorities to get registered with just a swab of the cheek. In the "old days" you would have to give a blood sample. This turned many people off. In the Seattle area you can go to this link to find local drives. If you know folks over the age of 18 that are a minority, please forward my post to them. We desperately need more minorities on the bone marrow registry.

You can give the gift of life to someone in need.

I could write on and on, and on, about this topic as it has affected me personally. Deeply.

Today on this very special day I reflect on Nicole, my precious niece who deserves a long life. She deserves a cure.

It only takes ONE special person with her tissue typing to save her life. The person that could save her life could be YOU.

If you believe in the power of prayer, please take a minute out of your day to pray that we WILL find a match for Nicole.

Help me celebrate Nicole's birthday by forwarding this post to others you know, especially minorities or mixed race folks.

Happy Birthday Nicole! I love you girl.

3 comments:

Jamie said...

Girl you are special for caring sooo much about your wonderful niece. She is lucky to have the family she has that care so much about her.

elise hiller said...

Thank you for sharing this information with me and I will certainly pass along to others. while I am not of mixed race, I would love to find a way to donate what I can (money) for research or whatever. What is the best vehicle for a donation in Nicole's name?

bizyhands said...

Hi Naomi!
What a sweet little girl and a compelling story. Let's not forget what a great aunt she has in you. You are the best!
Love-T