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Update on Alex's Fight Against Leukemia

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Sunday March 20, 2005

Hi Everyone,

February 2005I decided to send out this mini-update after reading a recent article on Public Cord Blood Bank funding. More on that later, in the meantime here's the mini-update:

Alex had her bi-monthly appointment and blood test last week and her counts continue to be good. On April 1st, Alex will be 2 years post-transplant! During the appointment we got some news that alternately freaked us out and made our day. Alex doesn't have another appointment scheduled for 6 months! This is the longest we've ever gone between appointments, so you can imagine we're a little bit nervous about it. Those blood tests have been our security blanket for the past 6 1/2 years. Oh well we're just going to have to get used to not spending as much time at the hospital! <knock wood>

Just one more medical note. Back in January Alex had follow-up laser surgery on her eye and everything went great. She now has two pair of glasses that she loves wearing, which have given her back the vision in her bad eye.

Nick is also doing great. He's growing like a weed, bouncing around the house like a ping pong ball, and terrorizing the cat. Just your average normal two year old boy.

Andrea is doing well. She's been doing a lot of volunteer work at Alex's school including serving as the co-chair of the annual Bingo night.

Starlight Starbright LuncheonAs for me, I've been working non-stop. Alex's Coupons has really taken off over the past six months and to make things crazier my web design business started to pick up again a few months ago. I can't really complain though, it beats not having any work.

Last month Andrea, Alex and I attended and participated in the Starlight Starbright Foundation's annual luncheon. Andrea was a featured speaker, Alex was a greeter and we donated $1000 from Alex's Coupons to Starlight Starbright. Starlight Starbright touches the lives of more than 180,000 children each month with their programs, which include providing Fun Centers to pediatric wards, arranging for tickets to special events for seriously ill children and their families, and much more. Over the last few years Starlight Starbright has done some incredible things for our family and we were honored to take part in the luncheon.

The Ponytail is back!

Well that's the mini-update, now it's time for me to summon up some righteous indignation. The other day I read this story on ABC News:

Umbilical Cord Blood Banks: A Worthwhile Investment?
Private Cord Blood Banking Is a Thriving Business as Public Banks Struggle

...and I have to say it ticked me off. It described how private cord blood bank companies currently have hundreds of thousands of holdings from families who paid an initial fee and will continue to pay annual fees for up to 18 years. It went on to quote an executive at one of the larger private cord blood banks who stated that of the 270,000 clients that have paid to store cord blood units, only 36 have used them for transfer therapy. What these private cord blood banks neglect to tell their clients is that it is highly unlikely their donation will ever be used if their child requires a transplant. This is due to the fact that the condition that necessitated the transplant (e.g. genetic disease, leukemia, other blood disorder) more than likely existed in the stem cells that were harvested from the cord blood. By using their own cord blood, you would basically be giving them back their disease. Of course the private cord blood banks will argue that it's possible, if highly unlikely, that a sibling could use the cord blood donation. But if a sibling exists they could just as easily donate bone marrow for a transplant, so that argument really doesn't fly.

In the meantime public cord blood banks are struggling to increase their holdings above the current level of 60,000. To make matters worse President Bush, in his proposed 2005 budget, has called for cutting $9.9 million from a federal program that was designed to help public cord blood banks increase their stocks. President Bush needs to explain to me, and all of the other cord blood transplant families out there, how cutting 9.9 million dollars of funding for public cord blood banks is a good thing.

The good news is that Congress is currently debating a bill (HR596) that would designate more federal money to help increase the current public bank's holdings to 150,000 units. According to Rich Miller-Murphy of the New York Blood Center having 150,000 cord blood units on hand could ensure that 80 percent to 90 percent of those seeking a match for transplant therapy would find it. With its current holdings, about a quarter of patients seeking a match can't find them among bone marrow and cord blood holdings. The search for a match can be especially hard for non-Caucasians. Michael Boo of the National Marrow Donor Program, which is part of the public cord blood bank system, says minorities needing transplants find matches 60 percent of the time while Caucasians get matches 75 percent of the time.

I want to encourage everyone to contact their representatives to express support for HR596, especially those of you who are represented by Republicans! It has nothing to do with embryonic stem cell research (which to be honest I support) or anything else even remotely controversial. Both of Alex's cord blood transplants were done with cord blood that was donated to public cord blood banks. If there were no public cord blood banks, Alex would not be alive today. That's not an opinion, that's a statement of fact. If you don't know how to contact your representatives you can look them up at Congress.org.

Okay I'm letting go of the indignation now, so my blood pressure can return to normal!

Thanks in advance to those of you who take the time to contact your representatives. Hope everything is going great. Take care.

-- Todd, Andrea, Alex & Nick

P.S. As some of you may know Alex's birthday party was featured in our local newspaper, the Peninsula Gateway back in January. Since most of you don't live in Gig Harbor, I scanned the article and posted it here.
 


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