Paint
Your Hair Blue
Sue
Matthews, a CPA, wife, and mother of three, was living a normal life fifteen
years ago until the day came when her middle child, daughter Taylor, was
shockingly diagnosed with cancer at the age of eleven.
The
family was thrust into turmoil, confusion, angst, and deep sadness. But as Taylor fought courageously, a life
mission developed that continues today, a decade after Taylor’s passing at age sixteen.
Sue,
with the help of her sister, Andrea Cohane, wrote a book, Paint Your Hair Blue
(Morgan James, June 2018, www.paintyourhairblue.com), that takes the
reader through the heartwarming tale of heroic courage and, devastating blows
that characterized Taylor’s odyssey through the underfunded world of pediatric
cancer. This book is an inspiring tale
of the power of love and determination.
It will empower the reader, no matter the circumstance, to embrace life
and take control of their own destiny and face fears with strength, fortitude
and confidence while living life to the fullest. Taylor will make you a better
warrior in the war on cancer with this story of survival, where love transcends
all and where every moment is a celebration of life.
1.
What happened to your eleven-year-old daughter fifteen years ago?
Taylor
was diagnosed with cancer in 2003 when she was eleven years old. We were
completely and entirely blindsided. She was in sixth grade, extremely
energetic, with chubby cheeks, often rosy from exertion on the playground, and
big sparkly brown eyes, full of wonder.
We hadn’t even the slightest inkling that she was sick. However, at
travel soccer practice she was out of breath. I took her to her pediatrician
who diagnosed her with exercise-induced asthma. With an inhaler she went back
to full sports. As is my cautionary
way, I took her to a pulmonologist just to be sure her asthma medicine was
correct. That's when the unimaginable happened. The doctor took a routine chest
x-ray and found a large tumor in her rib cage and a multitude of metastases in
both lungs. It was cancer.
2. How did you respond to this crisis that
you and your family were thrust into?
We didn’t have time
to respond. Taylor was in school that morning and by nightfall in our local
hospital after being diagnosed with cancer. My husband and I were a team from
day one. I went home to tell my family and my other daughters and Bob had the
heartbreaking task of telling Taylor. We
were told the following day the biopsy could be life threatening. We decided to
transfer Taylor to Memorial Sloan Kettering, which ended up being a mistake. We
went to Sloan for its reputation without interviewing the doctors. However, I
don’t know how any parent can choose options when they are in a state of total
shock and denial.
3. How would you describe lessons learned from how
Taylor fought cancer?
Taylor taught us:
-
To never be a
victim, never pity yourself no matter what your circumstances are.
-
To live life in the moment.
-
Have fun wherever you can find it.
-
Live life on the edge.
-
That LOVE is all you need.
-
That
every day is a gift. Enjoy it! Cancer is not a death sentence. In many ways, it
provides an eye-opening opportunity to live your life to the fullest.
4.
How did you, your husband and two other children find the courage,
strength and resources to fight alongside Taylor?
First and foremost, my husband, Bob,
and I became a synergistic team. Bob was in charge of speaking with the doctors
and researching next steps, while I took care of Taylor's day-to-day care and
making life with cancer as much fun as possible. We leaned on family members
who were willing and able, as well as close friends, and found a wonderful
nanny to help with our other girls. We never stopped looking for answers,
especially when the ones we were getting weren't what we wanted to hear. When
one hospital ran out of solutions we searched for other doctors and hospitals
that were willing to think outside the box and ultimately Taylor went into
remission. We trusted our gut instincts and advocated for Taylor at all costs. Perhaps most importantly, we made Taylor believe that she could win!
5.
What did you think when your daughter, riddled with cancer at such a young age,
wanted to form what would become the Taylor Matthews Foundation?
We
were astounded and so proud of her. There are no words that can possibly
explain our happiness. She seemed to always make lemonade out of lemons. Her
choice to help other children with cancer by funding pediatric cancer research
was something any parent would be overjoyed about. Our exuberance shined
through and she loved making us so happy. Additionally, we were thrilled that
Taylor’s foundation helped her through her own cancer journey. In an interview
on CBS, she said, “When I was sad, sick, missing my sisters and my friends, I
knew I should go and design (the foundation initially raised funds by selling
accessories) because I would be helping the people after me who didn’t feel
well. Knowing they may be getting treatments that I funded research for is
really great.” To this day, her legacy gives my life tremendous meaning. By
continuing her work I am living the life she would want for me. It gives me
unexplainable joy to hear that we have helped to save lives.
6. What will it
take to prevent, treat or cure childhood cancer?
A critical step in
treating any cancer starts with early diagnosis. In this regard, childhood
cancer poses a unique problem because when children complain of pain, doctors
and families do not initially think of cancer and thus it can take longer to
diagnose. In 80% of kids, the cancer has already spread to other areas of the
body by the time it is found. Other than doctors routinely testing a child’s
blood count during an annual physical (which can identify leukemia) there is no
screening for children at this time. Ultimately,
more
philanthropic dollars and government funding for research is needed for better
screening and treatment of childhood cancer, hopefully resulting in a cure and
long-term survivorship.
7. 2018 marks a decade since you lost your
daughter, tragically, at age sixteen, after her five-year battle with
cancer. How is she still very much with you?
Every day, Taylor’s
absence is evident but her presence is felt. We could write an entire book
about all the “signs” she has sent us from heaven. Taylor was born on 11/1 and
passed on 2/22 and I can’t count the number of times those numbers have shown
up unexpectedly or in strange ways. I have kept a journal of all the times
Taylor has “shown” herself to me, or to others, and I would be happy to share
those stories in the future. Some of it is in the book, but we had to take a bit
of it out in order to keep the book concise and focused.
8. What are you hoping to accomplish with
the publication of Paint Your Hair Blue?
From the time Taylor
first started her foundation, her constant mantra was: if I could save the life
of one child, it would all be worth it. In writing this book, our goal is to
help other families going through a difficult diagnosis by affording them
knowledge that took us painstaking years to obtain, from day-to-day care, to
tactics that could help save someone’s life. In addition, our goal was to keep
Taylor alive through her stories of love, laughter and endless adventure. It is
my way of not letting her voice go silent.
9. What does the title derive from?
When Taylor first
found out she was going to lose her hair, she didn’t take it as hard as I
expected. Taylor always seemed able to find the fun in literally any situation,
from taking a rubber chicken into the operating room during her first surgery,
to wearing a “Bad Hair Day” t-shirt when she was bald. Over the course of her
diagnosis, we were asked several times by other parents about how to handle it when
their child loses his or her hair. Taylor’s advice epitomized how she lived her
life. She said to tell the child that beforehand she should dye her hair pink,
or a combination of all her favorite colors, or tell boys to cut a Mohawk. Have
“fun” with it! In retrospect, before shaving it off, we should have dyed
Taylor’s hair blue, her favorite color.
10. What advice do you have for parents
learning their child is battling a deadly disease?
There’s no way for any
parent to completely avoid the fear and pain that comes with a cancer diagnosis,
but you do have some control. First, your most important job is to make your
child feel safe, and believe he or she will survive. You don’t have to hide
your sorrow, but try to hide your fear. Second, you must understand that your
family has to go on living and experiencing life
to its fullest. Lastly, you cannot ever stop advocating for your child. Even if
you have the very best doctors, you still have to question them and your
child’s protocol at every turn, making sure he or she is getting the most
effective and creative treatments available in the world.
The
Taylor Matthews Foundation (TMF), founded by then eleven-year-old, Taylor, when
she was diagnosed with cancer, is now run by her mom, and her aunt serves on
the board. The shock of diagnosis soon gave way to the alarming reality that
treatments for Taylor’s disease had not changed in decades. Even though cancer
is the number one cause of death by disease in children, only 4% of the
National Cancer Institute’s budget is allocated to childhood cancer research.
.
TMF
has raised $1.4 million and funded research at several leading institutions,
including Memorial Sloan Kettering, The National Institute of Health,
Children’s Hospital at Columbia University Medical Center and MD Anderson Cancer
Center. TMF is dedicated to raising awareness and funding pediatric cancer
research and is actively lobbying Congress for legislation to improve access to
cancer treatments for children. Sue, a
former senior manager at Deloitte and a CPA, has teamed with Andrea, a business
litigation lawyer to keep the memory of Taylor alive and to help children and
parents in need as they battle for life. To contribute, please consult: www.taylormatthewsfoundation.org
Please
note: This author is a client for the public relations firm that I work for.
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