February 4, 2009
My beautiful daughter Alexandra who is now 11 years old was diagnosed on November 10, 1998 with Acute Myelogenous Leukemia (AML). It's a very rare form of Leukemia for someone her age, I believe the odds are 2 in 1 million that a 10 month old child will be diagnosed with AML. The typical AML patient is a 55 year old male, so all of us including the doctors were shocked by the diagnosis.
Over the next five months Alex went
through three rounds of intense chemotherapy. At her worst she was in the
Pediatric ICU on a respirator because of seizures caused by high fevers, but
for the most part she made it through with flying colors. In April of 1999
she had her final IT (interthecal) chemotherapy injected into her spinal
fluid and we thought we were done. Our peacefulness lasted for five months.
September 30, 1999 after weeks of troubling blood test results, Alex was
diagnosed with a relapse of her AML. Within a week we had relocated from the
San Francisco Bay Area to Duke University in Durham, North Carolina. It
would be our home for the next four months.
Alex was admitted to the hospital on October 12, 1999 and immediately began
receiving high dose chemotherapy and an immuno-suppressant drug. which
knocked out her immune system and killed her bone marrow in preparation for
the transplant. Eight days later on October 20 she had her Cord Blood
Transplant. It was actually kind of non-climatic as the transplant itself is
very simple. A small IV bag of cord blood, taken from the placenta and
umbilical cord after birth, was given to her through her broviac (central
This relapse really caught us by surprise. Alex had been doing so well and looked completely healthy, albeit hairy from the anti-rejection drugs she was on. <grin> Luckily we had again prepared for this moment by researching new treatments for Leukemia including Mylotarg. Mylotarg is a smart chemo that targets Leukemia cells, while leaving healthy cells alone. At the time Alex relapsed Mylotarg was not widely available, but we were lucky enough to get into a Mylotarg Drug Trial at Fred Hutchinson Cancer Center in Seattle. Alex was given the first of two doses of Mylotarg on June 8, 2000 and then we waited to see if it would work.
Two weeks later Alex had a bone
marrow aspirate to determine if the Mylotarg was working. While the number
of Leukemia cells in her bone marrow had been reduced, it had not been
reduced enough for the head transplant doctor at Fred Hutch. She immediately
began pressuring us to agree to a second transplant (this time bone marrow)
while assuring us that her odds of survival were good, as high as 70%. Since
I was aware of the 28% survival rate for Bone Marrow Transplants, I was
skeptical of her figures.
For six weeks I faced the very real possibility that I could lose my entire family. Thankfully all of them were fighters. By March 2003 Andrea and Nicholas were healthy enough to fly with Alex and I back to Duke, so Alex could undergo her second Cord Blood Transplant. Her second transplant took place on April 1, 2003 (yes April Fools Day!) and while she had several setbacks including Cyclosporine Toxicity and Grand Mal seizures, we were able to fly back home to Gig Harbor in July 2003.
It's now been almost six years since we arrived back home. Alex is doing well, but continues to experience side effects caused by her six years of treatment. She has had cataract surgery on one eye, problems with short term memory and most seriously has a chronically low platelet count. Nicholas is now six years old and aside from being small for his age, you would never guess in a million years that he was a micro-preemie. Andrea fully recovered from her near-death experience and other than a six week gap in her memory (a result of the staph infection and the subsequent medical treatment) has returned to good health. Andrea and I divorced a couple years ago, but we continue to work together in raising Alex and Nick.
One of the really good things that came out of the struggle to save Alex's life was the creation of Alex's Coupons. Alex's Coupons was started in October 1999 as Affiliates for Alex, a collection of affiliate links to online stores. The site was designed to raise money for my daughter Alex's Christmas presents, while she underwent treatment for Acute Myelogenous Leukemia. Friends and family did their online shopping through the site and I received a small commission in return from the stores. That Christmas Affiliates for Alex raised nearly $400 for Alex's Christmas presents.
As time went on I started to think of what I would like Affiliates for Alex to become in the future. I wanted it to be a place where people could come to save money and get educated about Childhood Cancer. I also wanted to be able to give back to the many childhood cancer organizations that had been helping my family financially during Alex's treatment. For a couple of years this remained just a dream because I didn't have the time to devote to it, but in September 2001 our finances took a turn for the worse as Alex relapsed and my web design business collapsed.
to pay the bills I re-launched Affiliates for Alex as
in December 2001. From the beginning we were able to offer
our visitors great
stores, coupons to save money and information on Childhood
Cancer, but it was still just a little site that wasn't making
enough money to allow us to donate
are very involved in Childhood Cancer activism and fundraising, both
personally and through
The Cancer Support Groups and Organizations we support include
Starbright Children's Foundation,
Leukemia & Lymphoma
Society, NCCF, National
Children's Cancer Society,
of Western Washington, Make
a Wish Foundation and Corporate
Angel Network. Twice we've
gone to Washington DC (once on behalf of
NCCF and once on behalf of
lobby for increased funding for Cancer Research. During those visits we have
met with Senator Maria Cantwell and Congressmen Norm Dicks, and Andrea has testified before a congressional sub-committee on Childhood
For those of you about to have a baby please look into the possibility of donating your baby's cord blood to the National Cord Blood Bank. The cord blood is taken from the placenta and umbilical cord after birth, so the Mother and baby don't have to be disturbed at all. The Carolinas Cord Blood Bank website has information on cord blood donation and also links to other cord blood banks. Please spread the news about cord blood donations. Here are some additional resources for those of you who are interested in public donation of Cord Blood:
-- Todd Martini
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