|
July, 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.
Immediately after Alex's initial diagnosis we had begun searching for the
most effective treatments in case she relapsed. The standard way to treat an
AML relapse is a Bone Marrow Transplant with a 28% chance of survival. Not
content with those odds we began looking at Duke University's Cord Blood
Transplant Unit.
While Cord Blood Transplants had only been done for about ten years, the
initial statistics were promising. Of the nine children who fit Alex's
profile at Duke, seven had made it through the transplant and were still in
remission. It wasn't very hard to make a decision between 28% and 78%, so we
decided that a Cord Blood Transplant would be the next step. Only six weeks
after Alex's initial diagnosis in November 1998, Duke University had already
found two cord blood matches. Or course we never thought we would have to
use it. We just thought we were being careful.
 On
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
line).
Unfortunately the actual transplant is the easy part of the treatment. The
following weeks were much tougher on Alex and us, as she battled high
fevers, mucositis (sores in the esophageal and stomach lining), vomiting and
all of the other things that develop when your body has no immune system.
Still Alex did better than most kids and we actually left the hospital after
only 29 days post-transplant, which at the time was a record. We stayed in a
rented apartment for another 2 1/2 months while Alex recovered from the
transplant. At the end of January 2000 we were given the go ahead to return
home.
 Upon
returning home we immediately started looking into moving to Washington
state. My then-wife Andrea and I were both concerned that Alex's Leukemia was somehow
linked to environmental contamination near our house in Vallejo, CA. Within
two months of arriving back home we had bought a house near Lake Stevens,
Washington. By the middle of May we had sold our house in California and
moved up to Washington state to begin our new life. Two weeks later Alex
relapsed for a second time.
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.
After some research I determined that her figures while technically correct
only applied to those children that she had allowed to go to transplant. I
discovered that in many cases this doctor had refused to transplant if the
child was too sick after beginning conditioning for the transplant, even if
there was no other hope of survival. After adding back in all of the
children that had started transplant conditioning, but were refused a
transplant we arrived back at the 28% survival rate that everyone else
quoted.
Faced with this information, we began to look for alternatives. During a conversation
with Andrea's Father (Bob) he mentioned that it didn't make sense that they
wouldn't give her the second dose since the first one had at least done
something. That set off a light bulb in my head and I immediately called Dr.
Joanne Kurtzberg at Duke to see if she would be willing to give Alex the
second dose. After confirming that Mylotarg had been recently approved by the
FDA, she agreed to our request for a second dose. Two days later we were on
a plane headed back to Duke.
 Soon
after arriving at Duke, Alex was given the second dose of Mylotarg and taken
off all immuno-suppressant drugs with the hope that her donor immune system
would fight the Leukemia. The best case scenario was that Alex would achieve
remission, so we could put off the second transplant for a few months and
give Alex a better chance of survival.
For the next two week we waited and prayed that she would achieve remission
for a third time. At the same time we knew that she might not survive a
second transplant, so we decided it was time for Alex to spend a week at the
beach! The three of us and Andrea's parents made arrangements to spend a
week on Bald Head Island off the North Carolina coast. On July 15, 2001, the
day before we left for Bald Head Island, we got the news that the second
dose of Mylotarg had worked. Alex was in remission! We left for Bald Head
Island with renewed hope that things were getting better.
Before we left for our
vacation, Alex had a bone marrow aspirate done to determine what % of her
bone marrow was still donor. We never gave it a second thought as we had
resigned ourselves to the fact that the transplant had failed. There was no
way we could put off a second transplant. Five days into the vacation we got
the most incredible news. Alex's bone marrow had returned to 100% donor,
which meant that the Leukemia was completely gone and she wouldn't need a
second transplant! After only seven weeks at Duke she was in complete
remission and her transplant had been saved! As a precaution she was given a
second infusion of cord blood from the original donor to induce a GVL (Graft
vs. Leukemia) reaction and then allowed to fly home on August 2, 2000.
 Over
the next 13 months Alex continued to do well and we started to live a
somewhat normal life. We began to feel confident that things were going to
be okay, but that's when we got blindsided again. In July of 2001 Alex began
to have problems with her right eye swelling shut. At first the doctors
thought it was a sty, but when it didn't go away after two months a CT scan
was scheduled. On September 12, 2001 the CT scan revealed that Alex had a
tumor behind her eye. Two days later it was confirmed that it was a Leukemic
tumor and that there were also Leukemia cells in her Central Nervous System
(CNS). The Leukemia was back for a third time.
Over the next 18 months we were hit with a series of other misfortunes
including:
- The near collapse of my
business after the 9/11 attacks. I ran a web design business that
worked on several local and state government projects. The majority of
these projects were canceled in the days after 9/11.
- Alex relapsing four more
times with the length of her remission decreasing each time. These relapses and
subsequent treatments resulted in several long term hospital stays.
(Note: You may notice that Alex had hair during this time. Alex was
treated with Mylotarg, a targeted chemo, which doesn't result in hair
loss)
- The 14-week premature
birth of our son Nicholas (he was 13" long and 1 lb, 9 oz) on 12/13/02
(Friday the 13th if you can believe it!)
- Andrea developing
a serious staph infection, after Nicholas' birth, that left her near death
in the ICU at Tacoma General, while Nicholas was in the NICU at the
same hospital, and Alex was in-patient at Children's
Seattle.
September 2001 to November 2002
Nick - December 2002
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.
March 2003 to December 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.
Desperate
to pay the bills I re-launched Affiliates for Alex as
Alex's Coupons
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
to others.
Thankfully by March 2005, income from the site had grown enough
that we were able to make our first donation to charity, a $1000
donation to Starlight Starbright Children's Foundation. Over the
last 4 years we've donated over $20,000 to childhood cancer
charities, including our most recent
$3000 donation to
Starlight Starbright on May 18, 2009.
January 2004 to April 2006
 We
are very involved in Childhood Cancer activism and fundraising, both
personally and through
Alex's Coupons.
The Cancer Support Groups and Organizations we support include
Starlight *
Starbright Children's Foundation,
Leukemia & Lymphoma
Society, NCCF, National
Children's Cancer Society,
Candlelighters
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
LLS) to
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
Cancer.
We are also very involved in providing support to the dozens of families who
have contacted us over the years asking for help with treatment options,
financial aid, and emotional support. We feel it's both a duty and a
privilege to help other families who are dealing with the same situations
we've dealt with over the past six years. Many of these families have become
our closest friends and we remain in contact with almost all of them.
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
July, 2009
Alex & Nick Today (July 2009)
|
|
