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Stephen R. Sprague writes:
Having survived a heart attack and bypass
surgery before age 46, this diabetic baby-boomer thought he was
done with his medical misfortunes. He was wrong. During a routine
physical exam in November 1995, I was shockingly diagnosed with
leukemia. CML...a silent, sneaky cancer of the blood. While this
cancer is not one of the more common ones, getting such a surprising
diagnosis is not so uncommon for middle-aged adults, since this leukemia
has few obvious symptoms and is not predominantly a childhood disease,
as most folks think. I quickly began to explore creative ways to
mentally and physically cope with my treatment. However, the then-standard
chemotherapy only kept my CML, a typically lazy, slowly progressing
cancer under control for 17 short months instead of the three to
five years that are more the norm...the years I was counting on.
In April 1997 I found myself in blast crisis, the end-stage of this
disease.
What followed I can only describe
as a long run of incredible good medical fortune. First, I was able
to obtain a remission after a rigorous six-week hospitalization
while I began to frantically reconsider my options. Back then, there
was really only one. A transplant. A daunting, risky procedure for
those even in the best of health. And an option only available to
those lucky enough to find their elusive donor match. Being an only
child, I had no related donor and my search for an unrelated matching bone marrow donor was
unsuccessful...not so unusual in the mid-1990s when less than
30% of those searching were able to find a match.
But once again I was fortunate to be in
the right place at the right time, as my oncologist, Dr. Andrew Pecora,
Chief of the Adult Stem Cell Transplant Program at Hackensack University
Medical Center in New Jersey, was planning to begin a novel clinical trial
for end-stage adult leukemia patients using matching stem cells
obtained from umbilical cord blood and expanded ex vivo (in the
lab). Cord blood had already been proven successful in the treatment
of pediatric leukemia patients. This trial would determine whether
a sufficient quantity of cord blood stem cells could be expanded to successfully transplant
adults. In my case, a very large adult.
Adding to my good fortune was the fact
that the New York Blood Center, a forerunner in cord blood research and
the oldest and largest public cord blood bank anywhere, instantly
found a perfect cord blood match for me. Some young, anonymous-to-me mother
delivering her infant daughter in a New York City hospital had decided to
do what few mothers were doing in those days...to donate her baby's
umbilical cord blood, never imagining, I'm sure, that it would one
day become a gift of life for some dying, middle-aged stranger. My
pioneering transplant was done in November 1997 and I have now surpassed my 9th post-transplant re-birthday, completely cancer-free and
in relatively good health. It's been quite a journey.
As these years post-transplant now roll
by, I have come to learn that winning a battle against cancer gives
one many valuable new perspectives, appreciations and priorities.
It also seems that some of us lucky enough to fall into the cancer
survivor category, have this compelling desire to want to give something
back...to turn our personal experiences, learned through a harrowing
and difficult-to-describe ordeal, into something beneficial...not
only for ourselves in our personal lives, but for others heading
down their own medically uncertain path. Survivors have a unique
way of bringing an important, rational perspective to the complicated
medical turmoil that always seems so unavoidable during any life-threatening
illness. One's fellow patients, their families and loved ones, their
caregivers and even the medical community can greatly benefit from
the human element of our having been there, coupled with our willingness
to talk about our experiences firsthand in simple patient-speak.
And as I can personally attest, clinical trial survivors...those
with much to risk but much to gain...have the extra satisfaction
of knowing that by volunteering to be part of an experimental procedure,
we may have helped to advance developing medical science from theory
to practical application...new applications so desperately sought
by patients unable to be helped by conventional therapies.
So that's how I choose to volunteer my
time these days. A one-man advocate of sorts...reaching out to the
widespread cancer community in person, in print and globally via the
Internet...to educate, to empower and to encourage those wishing
to know more, understand better and gain every advantage in their
own struggle for survivorship. As a cord blood advocate, I am privileged:
•To share personal experience and educate about the surprises of adult leukemia, the importance
of clinical trials, the advances of stem cell technology and the
miracles of umbilical cord blood, as well as the opportunity expectant
parents have to generously give a gift of life by public donation.
•To empower patients, their families, loved ones and caregivers
to take a proactive role in the survivorship game-plan by knowing
enough to ask the right questions and better understand the answers
based on fact, not emotion. As I personally discovered, a fully-informed, knowledgeable patient "team" will have the advantage of considering every option, including the possibility of using cord blood donated to public banks as an alternative stem cell source.
•And most importantly, to offer a message of hope by "walking the
talk" for those wishing to become committed advocates in winning
the battle to live...their own personal battle, or the battle of
someone they care about.
To receive a complimentary copy of
"Beyond Leukemia...The Conclusion to a Ten-Year Story of One Man's
Cord Blood Miracle" e-mail your request to spraguecml@aol.com
or mail your request to: Stephen R. Sprague at PO Box 140676, Staten
Island, NY 10314. Please include your full name and postal mailing address.
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