Paint Your Hair Blue: A Celebration of Life with Hope for Tomorrow in the Face of Pediatric Cancer

Paint Your Hair Blue: A Celebration of Life with Hope for Tomorrow in the Face of Pediatric Cancer

by Sue Matthews, Andrea Cohane

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Overview

In Paint Your Hair Blue, Sue Matthews takes you through the heartwarming tale of heroic courage and devastating blows that characterized her daughter Taylor's odyssey through the underfunded world of pediatric cancer. This book serves in equal portions as an inspiring tale of the power of love and determination, and a cautionary tale of the need for parents and all caregivers to be their own advocates. It will empower you, no matter what your circumstance, to take control of your own destiny.


Most of us will be touched by cancer in some way during our lifetimes. The reader will discover how Taylor and her family learned to balance the necessity of her continuous medical treatments with the need for her to be a kid and live as normally as possible. You will gather dozens of tips and pointers, gleaned by trial and error, about navigating the maze of pediatric oncology through the lens of a layperson and better understand how to face fears with strength, fortitude and confidence while living life to the fullest. Sue and her sister Andrea 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.

Product Details

ISBN-13: 9781683507277
Publisher: Morgan James Publishing
Publication date: 06/26/2018
Pages: 248
Product dimensions: 5.90(w) x 8.90(h) x 0.50(d)

About the Author

Sue Matthews, along with her sister Andrea Cohane is the author of Paint Your Hair Blue a mother's longing to give enduring eloquence to her daughter's voice, to not let it go silent. Readers will come away from the book with a vivid understanding of how truly short and precious life is and a greater willingness to add more color as we go along.


Sue is President of the Taylor Matthews Foundation, a tay-bandz organization, which is a 501 C-3 founded by her then 11 year old daughter Taylor, who lost her battle with pediatric cancer at age 16. As a nationally recognized advocate for pediatric cancer awareness, Sue oversees all of the Foundation’s grant making, fundraising, event planning, and financial reporting, as well as collaborates with other cancer foundations, associations, and societies. The Taylor Matthews Foundation is at the forefront of new initiatives in awareness and continues to fund medical research at leading medical centers, with the hope of a brighter future for parents struggling with the needs of a sick child.


TMF continues to fight in Taylor’s honor and will never falter in their commitment to children with cancer. TMF is keeping Taylor’s spirit, her thirst to make change, and her dedication to help others alive. While her life was tragically cut short, her mark on the world lives on.



Sue is a member of the Children’s Council at Columbia Medical University Center, the National Association of Professional Women, the National Organization of Italian American Women, the NYS Society of Certified Public Accountants and the American Institute of Public Accountants. She holds a B.A. in Accounting from Franklin and Marshall College and is a CPA and former Senior Manager at Deloitte.


Sue lives in New York City with her husband Bob Matthews and their daughters, Ryan and Corey. Sue hopes to fulfill Taylor’s dearest wish that someday no child will ever have to face cancer, the leading cause of death by disease in children and adolescents in the USA.


Andrea Cohane is a Board Member, advocate and advisor of Conquering Kidz Cancer, founded by her niece, Taylor Matthews. Andrea holds a B.S. in Economics from Cornell University and a Juris Doctorate from Fordham University School of Law. She was a business litigator at Clifford Chance, LLP in New York city and practiced at Womble, Carlyle, Sandridge & Rice in Charlotte, North Carolina. Andrea also worked in the Westchester County District Attorney’s office in their Domestic Violence and Child Abuse Department and continued advocating for such victims through Womble Carlyle’s pro bono program. Andrea resided in London for three years where she was actively involved in Southbank International School’s music department and programs to assimilate Americans into British culture.

Andrea resides in Charlotte with her husband Bill and their children, Samantha and Sofia. She is actively involved in her local community, including volunteer work in both Charlotte Christian’s drama department where she heads up the Cast Care Committee, and Charlotte Country Day’s lower school. She enjoys traveling, writing and playing the piano.

Read an Excerpt

CHAPTER 1

Cancer?

You never know how strong you are until being strong is the only choice you have.

— Cayla Mills

Flowers Because It's Tuesday

On a bright, beautiful, atypically warm May weekend in 2003, my husband Bob and I, along with our daughters, were excited about our vacation in London, celebrating our eighteenth wedding anniversary. I have always loved to travel and see life through others' eyes, especially my children's. After three daughters, our wedding anniversary had become a family affair, as had Valentine's Day and every other holiday symbolizing love.

Bob and I met early in our college careers at Franklin & Marshall, and I was smitten from the start. His good looks, thick ink-black hair with eyes to match, Cupid's bow lips, and chiseled body had me the first time our eyes met, even if I didn't let on. There was plenty of flirting and sophomoric wooing. He constantly invited me to fraternity parties, which I ignored because he had a long-term high school romance that lingered in an "on-again, off-again" cycle, and he was firmly loyal during their "on" cycles. Sarcastically, I would laugh and engage but also send the message that I wasn't falling for any slick or sassy approaches.

Bob was undaunted. Whenever he was "single" or just a little drunk, he was pretty creative about keeping my attention. In one now-infamous story, while his fraternity hosted a Polynesian-themed party on a cold, autumn night, he walked several blocks to my apartment with one rum drink in each hand, wearing only a grass skirt and lei. After sneaking down the alley, he crouched below the windows of my first-floor apartment and positioned himself directly under my kitchen window, where he could hear that I was talking with someone. At the first lull in conversation, he sprang up into my view, bare chested and amused at my initially horrified look. I rolled my eyes, waved my hand, and casually remarked, "Oh, that's just Bob." I let him in, we shared the drinks, and then I sent him packing. I said afterwards he was definitely cute, but "immature and irresponsible."

Eventually Bob won my heart, and soon we became inseparable. By the mid-1980s, we were newlyweds, just out of college, pursuing the yuppie dream in an Upper-East-Side Manhattan apartment with a plush white rug, a balcony just large enough for two people to share a glass of wine, and a refrigerator containing little more than a jar of mustard and some instant coffee. We were both working long hours, Bob at a brokerage house and myself at a Big Four accounting firm. We were enjoying life as only twenty-somethings can, naïve and innocent, our stories yet untold but holding all the potential in the world.

When our first daughter, Ryan, was born in 1989, playgroups, arts and crafts, baking cookies, and Sesame Street soon consumed my days. Two years later, our second daughter, Taylor, was born. After our third daughter, Corey, was born in 1994, we settled into our dream suburban home with a white picket fence — literally. The iconic American symbolism was not lost on me. Three beautiful little girls and my Prince Charming, who, being a true romantic, would often send me roses just because it was a Tuesday.

The rest of that decade was defined, for me, by being a mother: bear hugs, Barbie dolls, kissing "boo-boos," and mending little broken hearts. Back then, my worst problem was negotiating whose turn it was to sit on Mommy's lap. Although those days were tiring, I cherished them. I loved listening to my girls' giggles or seeing the wonder in their eyes as they discovered a new toy or a frosted pink cupcake. My days were filled with peanut-butter kisses, finger paint, and tender moments of pure, unconditional love. I couldn't have asked for more.

However — and this is the strange part — I couldn't totally embrace my life. I felt too blessed. I had a sense of foreboding, waiting for the proverbial other shoe to drop. I just never thought it would be one of my kids.

I certainly had no real worries in May 2003 during our eighteenth wedding anniversary celebration: Ryan, Taylor, and Corey were ages thirteen, eleven, and eight. When we arrived in London, everyone was ready for a fun-filled weekend.

That first evening, we donned fancy dresses and headed out to see Mamma Mia! I remember sitting in the theater, looking at Bob with a big smile on my face, my eyes glowing from within, telling him with an affectionate glance how proud I was at all we had accomplished in our eighteen years together. The curtain rose. After reading so many wonderful reviews, I wasn't surprised at how much the girls were enjoying Mamma Mia! ABBA's bubbly and boisterous music sets in motion a love story involving a mother and her many suitors from years past. Her daughter, Mia, on the eve of her own wedding, longs to learn the identity of her real father. Her mother won't reveal his name, or maybe she doesn't know, so she narrows it down to three suitors from her past and invites them all to the wedding.

At the end of the first act, my little one, Corey turned to me with a furrowed brow. "Mommy, how could she not know who her father is? I don't understand." Ryan and Taylor burst into laughter, as any adolescents might. Adamantly, and with a bright-red face, all I could muster was, "Okay, everyone, go get a drink and leave Corey and me alone!"

When each of the girls had asked how a baby was made before they were old enough to really know, we told them, "Daddy plants a seed in Mommy," which they literally thought meant a seed in our vegetable garden. Now, Corey was about to find out the truth in the middle of intermission in a crowded London theater. In a monotone voice, I explained it to her, as scientifically as I could. Her response was, "That's just gross!" When the rest of them returned, with a stern glance I sent a silent message to Ryan and Taylor to stop whispering, snickering, and staring at Corey, but it was hard for them to resist. I admit I thought it was funny, too.

The next day, we enjoyed an afternoon shopping at our favorite store, Harrods, known for the latest fashion trends. While waiting in the shoe department, out of the blue, Taylor asked urgently, "Can I get highlights in my hair?"

"Absolutely not," I snapped, rolling my eyes. "You're eleven years old! Your hair is pristine and beautiful; you don't need to put dye in it. There's plenty of time when you're older."

None of us could have known what was lurking just around the bend, waiting to strike our family like a cyclone and wreak havoc on our world. How was I ever to know what that question and my answer would end up meaning?

Never a Dull Moment

From the day Taylor was born, she was full of spirit and sass. When the nurses handed her to Bob and me for the first time, I expected to see a beautiful baby with supple skin, sweet and soft. Instead, her face was covered with red, raw, deep scratches. Amused, the doctor explained, "Taylor probably scratched her face in the womb, willing herself to come into the world of the living!" We laughed along with him, but we had no idea how typical this type of feisty behavior would prove to be. With Taylor, there was never a dull moment.

Taylor didn't experience the terrible twos, but the terrible twos, threes, and fours. Whenever she misbehaved, which was quite often and typically included taunting her older sister Ryan, she was given a "time out" and told to go to her room. Taylor was never going to do things anyone else's way. Telling her she had to do something was a sure way to make sure she didn't.

During time out, she refused to stay in her room, slowly inching out to the hallway until she stood right in front of me. I couldn't control her. She would smile and say, "Mammie, I a good girrrl now." The only punishment that ever worked was my refusal to speak to her. She would cry, "I lovvve you, Mammie. I am sawry."

Although Taylor could be a smart-alecky little pest, she was so lovable it was hard to stay angry. Her passion for life was contagious. Little things excited her, and she could make even the dullest cloudy day appear exquisite, if you just looked at it through her eyes. She was irresistible even on her worst day, and she knew it, sometimes taking full advantage of us. When she bestowed her love upon you, you felt like the most important person in the world.

We all thought she looked like a younger version of the actress Natalie Portman, but she was much happier to say that she resembled me. She was small boned, with light olive skin; a straight nose; long, pin-straight, shiny brown hair; and, most beguiling, a mischievous smile that accentuated her full red lips.

Taylor's due date was November 4, too close for comfort to my older sister Lynn's birthday, November 8. I hadn't wanted Taylor to share her birthday with Lynn. Although Lynn is a brunette like me and strangers sometimes can't tell us apart, on the inside we couldn't be more different. She is extremely volatile and self-absorbed. It could take an entire book to tell Lynn's story; quite frankly, it's not worth the ink. Suffice it to say, Lynn wasn't speaking to me on either the day Taylor was born or on the day she died. Since Taylor's funeral, neither she nor her daughters have spoken to me or my other sister, Andrea. She cut us both off and has flat- out refused to give an explanation.

Despite the bad blood, Taylor shared one characteristic with her aunt. Like Lynn, Taylor was known for what we called her "otherworldliness" and could relay countless stories about her premonitions. My dearest friend Janet, whom I can confide in about anything, has always agreed that Taylor had a mystical way about her, a sixth sense, a knowing beyond the rest of us. She had an aura that transcended her physical presence and an understanding of life beyond her years.

Taylor's most shocking premonition came on September 10, 2001, the night before 9/11, when she kept me up the entire night insisting, "Mommy, something horrible is going to happen tomorrow." Disbelieving, I replied to my nine-year-old, "You're crazy. Go to sleep!" I figured it was one more of Taylor's notorious nighttime woes.

No matter what I said, nothing calmed her down. She simply wouldn't let up. We cuddled all night as I tried to assuage her fears. The following day, one that no American will ever forget, Taylor came home from school with anger in her eyes. She folded her arms and said, "See! I told you so." I was stunned.

Even when Taylor wasn't predicting the future, her imagination ran wild. She dreamed about alien abductions and was often concocting a mischievous scheme, whether it was climbing a tree or pulling a prank. She especially reveled in teasing her little sister, Corey. One time she neatly pasted decorative, blue glue dots across a page of paper. She then enthusiastically told Corey to "hurry up and eat them; they're the old- fashioned candy dots on paper that Mommy never lets us have." Corey fell for it, just as she did when Taylor pulled a similar prank with a "sweet" jalapeno pepper. Needless to say, all of her antics ended with Corey in tears and Taylor in hysterics. A dear friend of Taylor's, Becca, put it perfectly years later: "Taylor has the maturity level of an eight-year-old boy!"

At eleven, Taylor was extremely energetic, with chubby cheeks often rosy from exertion on the playground. She never sat still; her mind and body were always galloping. The word "rest" simply did not exist in Taylor's vocabulary. As far as I was concerned, she was the picture of health; she had never even been on an antibiotic in her life.

Soccer was one of Taylor's passions, although more for the camaraderie between her and her teammates than for the sport itself. She wasn't the best athlete on the team, but she put in 150 percent every time. It was all for fun, for helping the team, win or lose.

That spring, she began experiencing some shortness of breath during soccer practice, so just to be safe, I scheduled an appointment with her pediatrician shortly before we set off for the anniversary trip to London. After examining her, our pediatrician diagnosed Taylor with exercise- induced asthma and gave me a handful of prescriptions, so many they filled a large Ziploc bag. I thought to myself, Why would I give Taylor all this medicine before consulting a specialist? I certainly wasn't worried about anything serious; I was being cautious, as is my nature. When I spoke to my pediatrician about seeing a pulmonologist, she insisted, "You're totally overreacting. Her lungs are clear." I responded harshly, "I want expert advice on her medication doses, and I want her to blow in the box. Period." I walked out as the doctor rolled her eyes at my "overreaction."

Upon our return from London, Taylor was scheduled to see a pulmonologist so we could get her asthma medicine sorted. She was especially excited on the day of her appointment because at school they were receiving bunk assignments for sixth grade camp, a five-day overnight school trip that most kids look forward to from kindergarten. I picked her up midday from school, intending to bring her back after our appointment.

"Leave your backpack in your cubby, sweetheart. You'll be back in less than two hours."

"Mommy, my teacher is mad that I left during orientation to sixth grade camp."

"It's fine," I reminded her. "You have a doctor's appointment, and I signed you out."

"But Mommy, she is pissed."

"Tales, do we really care if she's pissed at you?" I chortled as we exchanged broad, knowing grins. Even then I knew better than to worry about nonsense.

While driving to the pulmonologist, Taylor was like a little kid on a long road trip, asking over and over, "How long will it take?"

I finally asked, "What's up, Tales?"

"I need to be back for recess because I have a lot to plan for sixth grade camp with Jenny."

Jenny, a cutie pie with golden blonde hair and a hop in her step, was Taylor's best friend, and they were a perfect match, mischievous, fun loving, and full of chutzpah. "I have to get back!" she insisted. I couldn't help smiling to myself. She then added with pure excitement, "And, plus Mommy, it's Thursday!" Soccer practice day.

Shortly after our arrival at the doctor's office, the pulmonologist ordered a routine chest x-ray and then had Taylor breathe into tubes to measure her oxygen output. I could see Taylor's devilish grin; she knew she was doing well. She announced, "I like this doctor, Mommy. I know he's going to make me better."

As the pulmonologist examined her, I began making a list of what I needed to pack for sixth grade camp. Just that morning I had bought bells to hang on Taylor's bed to alert the teachers in case Taylor awoke in the middle of the night. Even at night, Taylor didn't stay still. She was a boisterous sleepwalker. I grimaced, remembering the night she came into our room and woke us up chanting, "Where is my guitar; where is it?" Bob and I knew we had to play along with her story, or else she would become very confrontational. Taylor never had a guitar or any interest in playing one, but she always had an interesting tale to tell while she was sleepwalking.

Suddenly, the doctor interrupted my reverie and in a flat voice asked, "Mrs. Matthews, can you come upstairs to my office?" I asked Taylor, "Are you comfortable with that?" She frowned but said, "Fine," rolling her eyes and not hiding her disapproval. Gathering my belongings, I casually got up from my chair and made my way to his office. In the elevator, I inquired, "Could this be serious?" After a pregnant pause, the doctor shocked me by responding, "Maybe."

I walked into his office; oddly, I felt a slight shift in the air and a sense of sadness. What could be wrong, I wondered, with a sick feeling in the pit of my stomach. Then the doctor showed me Taylor's chest x- ray. The only x-ray I had ever seen was of Ryan's broken wrist years ago, but when I saw this, even I knew it was bad. Taylor's lungs were filled with little white spots, irregular in size, and near her ribs was a large, white spot about the size of a plum. I trembled. I remember looking at my watch, noting it was 12:19 p.m.

At that moment, I somehow comprehended, knowing as little as I did, that life as I knew it was over. Shaking, I murmured, "Is this cancer?" He replied hastily with many alternative explanations, but I wanted a straight answer. This would be my first of many confrontations with the medical world. In a high-pitched voice I didn't recognize as my own, I shrieked, "Do I need to call my husband?" All he could muster was, "Yes, Mrs. Matthews. You should call him right away."

Bob was with one of his newest advisors, helping him with a large opportunity that could be a game changer for him and the entire brokerage branch Bob ran. They were poised to give a presentation they had been working on for a long time, and Bob was more than a little nervous. As they were approaching security in a downtown Manhattan building, his cell phone rang.

"Bob, it's me," I managed to say, shaking, barely able to hold the telephone up to my ear. The minute he heard my voice he knew something was very wrong.

(Continues…)


Excerpted from "Paint Your Hair Blue"
by .
Copyright © 2018 Sue Matthews with her sister Andrea Cohane.
Excerpted by permission of Morgan James Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Introduction,
1 Cancer?,
2 A Rude Awakening,
3 Think Outside the Box,
4 A New Normal,
5 One Hundred Blocks Uptown,
6 I Will Survive,
7 Battle Mode,
8 Living Out of Bounds,
9 Learning to Fly,
10 Going Rogue,
11 Everything's Okay If I'm with Tay,
The Gold at the End of the Rainbow:,
The Taylor Matthews Foundation,
Treatment Tips,
Acknowledgments,
About the Authors,
About the Taylor Matthews Foundation,

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