by David Cry
David Cry’s life was a happy one. But when news came of Logan’s diagnosis, everything changed.
At just 12 years old, David and his wife Jaymee’s son Logan received his diagnosis of adrenoleukodystrophy (ALD), a prognosis that carried a 100% mortality rate.
Now, every day was even more precious. As Logan’s illness progressed, stealing away more of their son each day, David and his family were put to a test of will and faith. They tried to stay strong for Logan—and for each other.
Praise for A Short Walk Home
“A Short Walk Home is more than David’s story of survival but rather an inspiring story of his triumph over the darkest moments with only faith, hope, and love as a companion. David has tirelessly dedicated his life to ending the tragic effects of ALD as well as offering hope to those suffering.”
—Chef John Besh, owner, The Besh Restaurant Group
“A Short Walk Home is a testament to love, devotion, and the grit and resolve it takes to endure the unthinkable and emerge stronger and more committed than ever to each other, to a son’s legacy, and to a cause that must be addressed now.”
—Karen Swensen, anchor, WWL-TV New Orleans
“A Short Walk Home reaffirms the controlling truth of life: Love is the most powerful and enduring force we encounter. The story David Cry shares with us about losing a son reminds us all that love is the one essential needed to survive the most harrowing and hideous pain.”
—Jim Axelrod, CBS News
“A Short Walk Home is that rare (true) story that is both completely devastating and supremely hopeful. The story of David and Jaymee and their boys is one that must be read, and then shared. We owe it to ourselves, and to our loved ones.”
—J.K. Simmons, Academy Award-winning actor
“I’ve heard it said, ‘Pain is the precursor to change!’ David and Jaymee have suffered excruciating pain on every level possible and because of that pain, they are now changing the world!”
—Heath Evans, analyst, NFL Network and Super Bowl XLIV Champion
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A Short Walk Home
Copyright © 2015 David Cry
Library of Congress Cataloging-in-Publication Data
is available upon request.
ISBN: 978-1-57826-567-1
All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic or otherwise, without written permission from the publisher.
Interior Design by Cynthia Dunne
eBook ISBN: 978-1-57826-568-8
v3.1
CONTENTS
Cover
Title Page
Copyright
Epigraph
FOREWORD by JK Simmons
INTRODUCTION by John Hirschbeck
PROLOGUE
THE BEGINNING OF THE END
DESTINY
WISDOM
WALK AWAY
AND BABY MAKES ME
UNAVOIDABLE
IN JAYMEE’S EYES
BRENNY
SUPPORT
SERVANT
CONFUSION
NEVER SAY GOODBYE
ON AND ON
AFTERWORD
ACKNOWLEDGMENTS
About the Author
“The song is ended but the melody lingers on.”
—Irving Berlin
FOREWORD
ONE DAY I got a call from David “Rat Bastard” Burke, owner of the security company that provides service whenever I am in New Orleans, telling me that he had met someone who would enjoy speaking with me. A man who really enjoyed my work. A born and bred New Orleans guy. A real character. New Orleans has its own unique flavor, and David Cry personifies this in a better way than most.
At the time, I was in Los Angeles where I live, “working” on the set of a small, independent film called “Murder of a Cat”. No, that’s not a misprint. It’s a fun movie. You should check it out.
Burke and his wife, Dynette, learned that Dynette’s brother’s son had a condition called ALD. The day after learning this, they began speaking with a guy named David Cry. David is the chief executive of The ALD Foundation. When this young boy traveled to Minneapolis to be evaluated for a lifesaving transplant, upon the family’s request, Cry went with them. Sadly, they learned that there was no hope in stopping his ALD. Some things in life just aren’t fair.
As we broke for lunch that day, I was told I would be needed again in an hour and a half. I told Burke to give Cry my number. I am a Dad. If this guy is helping families with the unthinkable, and asking nothing in return, I think I can take a little time to chat on the phone with him for a while. Let him hear my voice. Maybe do a little J. Jonah Jameson for him. Whatever.
Well, I didn’t talk a whole lot. Cry has a way with words. He is a storyteller and a funny guy. I got his overall story, complete with names, specific dates, times, and places. Cry has an amazing memory. He told me about his Dad who was dying of cancer, and the onset of his own form of ALD. He told me about his son Logan, and how he and his wife, Jaymee, had just lost him to ALD a little more than two months before. He then told me about Burke’s nephew, and the terrible struggle he and his family were enduring. He told me about the great joys of his life—his wife and their little boy, Brennan. I listened, and I empathized, and I laughed a lot, and I cried some.
I’m not gonna try to tell David Cry’s story. Cry is the writer. He has created a beautiful book. Buy this book. You’ll be helping make the world a slightly better place, and you’ll be enlightened and greatly entertained. You’ll be grateful.
… I never did get lunch that day, but a little over a year later, at Restaurant August in New Orleans, I had one of the best dinners I’ve ever had with Cry and his wonderful wife, Jaymee. You should be so lucky.
—J K Simmons
INTRODUCTION
WITHOUT ALWAYS KNOWING it, David Cry is an inspiration. He has helped families affected by Adrenoleukodystrophy, or ALD, for years. That includes me and my wife, Denise. The funny thing about Cry is, he does not want anything in return for what he does. If he helps you, and knows he has, he is content. I think that’s the sign of someone really special.
Denise and I, along with our daughters Erin and Meghan, have lost two sons, Little John and Michael, to ALD. It has been devastating. There are just some things you don’t ever get over. David, his wife Jaymee, and son Brennan lost Logan to ALD in April 2013. Understanding their pain, I did my best to help David, although sometimes there are just no words.
David’s book will be a help to so many. I feel that David gets it. I hope that anyone who is a parent will read this book. Allow it to serve as a reminder that at any time, anything may happen. That none of us is so special that bad things won’t fall upon us. Remember that your family is important. That your wife is your best friend and deserves your undying respect every day. That our kids are a treasure. That they deserve the very best that each of us have to offer.
I appreciate David asking me to be a part of his work. He is a good person. I know that whether it’s ALD or something else, by nature, he will not stop helping others as long as he is here. We will all benefit because of this. It is as it should be.
—John Hirschbeck
PROLOGUE
MY NAME IS David Cry. I live in Slidell, Louisiana, with my wife, Jaymee, and son Brennan.
When I began writing this book, this page reflected that I had such little to really say. B
ut now, having been to hell and back, it would seem appropriate to alter my introduction to you.
So: My name is David Cry. I am a husband to Jaymee, a lady with more courage and bravery than I have ever experienced. She has (now) lost five close family members, including a son and a father, to adrenoleukodystrophy (ALD). It has not been easy; each time, it has taken a unique and personal toll. Yet despite this, Jaymee remains the warmest and most loving woman alive. She is an incredible wife, and a wonderful mother. I believe that our coming together and starting a family was an act of fate; that God decided David Cry should marry Jaymee Godfrey, and that together they would be tested at every turn. And through it all, our resolve for life and our love for one another have only been strengthened.
In addition to being a husband, I was and am a proud father. Although my son Logan was not mine biologically, I did my best to love him as though he were. We had difficulties—the normal things that occur when families blend. In my heart, I know that Logan did not deserve what happened to him. I had to watch as ALD stripped away the little boy I knew, but despite that, I will always remember the child he was before: a loving kid, always quick with a smile, a hug, or a nuzzle. I miss him daily, and those feelings will never end.
I am also the father of Brennan, who will be 7 when this book comes out. Brennan is an incredible kid. He was screened for ALD before being implanted in Jaymee, and knowing that the same disease that took his brother will not affect him is an enormous relief. Brennan is highly intelligent, just like my father was. In fact, they share so many similar characteristics that at times it feels bizarre. The main question I have asked myself since Brennan was 2 is: How does one maintain with a child who is more intelligent than his own parents? Brennan continues to challenge us daily. His ability to set goals and follow through on his plans is remarkable, particularly for someone his age. We can already see that he has what it takes to accomplish whatever he chooses. He shows love abundantly, and cares for others. We have been very blessed by his existence.
I hope that, as you walk along the path of this book and its story, you will be mindful to suspend your disbelief. All that you will read occurred, and even more that I do not wish shared. The fact that we remain whole can be attributed to but one thing: love. Love that we give, and love that we receive—both have worked to sustain us. Ultimately, I believe that this growing closer together is what God intended for us all.
Life has not, in my 46 years of ups and downs, ever appeared complicated. We all have good times and bad. The negative things that life contains challenge each of us. My hope is that, through reading the story of my son and my family, I am able to impart to you one lesson: “Getting through it” is but one aspect of our lives. Live happy. Love more. Life is an amazing journey. Never give up hope.
Chapter 1
THE BEGINNING OF THE END
OUR SON IS dying. He is only 12 years old, and he is not going to live.
In the minds of some, our news came as no surprise. Logan was born with the genetic predisposition to develop the neurological disorder adrenoleukodystrophy at some point in his life. The odds of presenting with ALD were always 100 percent; however, that did little to ease the burden that gripped us. Each and every year, he had been tested to see if the disease was active. Each and every year, that is, until his 10th birthday, when we had been told that we could relax. By then, children who are likely to develop the childhood form of this disorder, which is fatal, are considered to be out of the woods. We moved on from the dread of our son’s imminent death to an apprehension of the adult, crippling form of the illness, which I have.
We had done what most parents in our position would do. Rather than scheduling an annual brain MRI, we opted to put it off for six or eight months. For us, this seemed the reasonable thing to do. For more than a decade, I had served as the chief executive of The ALD Foundation, an international medical foundation that assists families and works with physicians dedicated to providing a remedy for ALD. Having worked with doctors at some of the most prestigious institutions of higher learning on the planet, when a trusted doctor told us that Logan was likely out of the woods (or at least out of the darkest part, where quick death grips young boys) it was difficult, not to mention undesirable, to not to accept his words as gospel.
When my wife, Jaymee, called to deliver the news that our trusted doctor had been wrong, she was with Logan at Children’s Hospital in New Orleans. I was in my office at home, with our 2-year-old, Brennan, on my lap. We were studying phonics on my computer when the phone rang. The news hit me hard. Jaymee continued to speak, explaining what the doctors had told her, but all I could do was look at our baby. I kept thinking, “This little boy should not be raised an only child. That was not a part of our plan.” All I heard coming from Jaymee’s end of the line was sounds; I couldn’t manage to connect them into words. Our nightmare had begun.
Shortly after hanging up with her and getting Brennan occupied with something that would sustain his attention, I picked up the phone and started dialing with one hand, even as I emailed Logan’s brain MRI to physicians around the world with the other. I had made a number of valuable connections in the ALD world through my years of work, and I intended to make full use of all of them.
The first physician I spoke with was Patrick Aubourg, in Paris. Patrick’s groundbreaking strides against the same illness now afflicting my son had created international news years earlier. When he answered, he was already reviewing the images I’d sent.
“David. I am so sorry.” There was a tone in his voice I had never heard before. I couldn’t let it slow me down, and got right to the point of my call.
“Thank you, Patrick. So, are you available the day after tomorrow?”
“What? You are coming here?” he said, sounding more shocked than surprised.
“Yes. You have stopped ALD in four boys now. From the looks of things, we can’t wait. Logan and I can be on a plane to Paris in the morning. If need be, we will stay there a few weeks so that he can be treated.”
“David, I cannot do this. I do not have any vector. Therefore, I could not put the genetically corrected cells back into Logan’s body.” The vector he was referring to was a delivery device used to put healthy cells back into the body. As he spoke, he began to weep.
“Patrick, are you crying?” The surprise in my voice was obvious.
“David, I am surrounded by this disease daily. I have seen patients with ALD my entire career, but have never dealt with the child of a friend.” His words, hard though they were to hear, were soothing. “This is a terrible situation for you and Jaymee, even more so for Logan. I am sorry, David. I truly am.”
“Patrick, I appreciate your sentiments fully. Do his films look good enough that bone marrow transplant would be possible at Minnesota?” Now that I knew gene therapy was out of the question, I needed to move on to other options.
“His score is a 13. While it is more realistic for a child with a score of seven or eight to do well during transplant, it is still a possibility. The one thing I would caution you about is that if he is eligible, you must have a 10 out of 10 match for cells. The cells must match perfectly.” He delivered his last words with emphasis. I knew he was advising me in the best possible way.
“Paul?” My next call was to Dr. Paul Orchard, transplant extraordinaire in the field of ALD.
“David, how are you?” Paul was his usual, jovial self.
“Not well, buddy. Logan was just diagnosed.” This news was met with complete silence on the other end of the line.
“David … wow. Do you have any idea of his Loes score?” The Loes score is a grading rubric that is used to express the true extent of damage in a brain MRI for patients with ALD.
“Patrick estimated that it is somewhere around 12. I have the disc, Paul. And can send you the images right away.” I spoke with authority I did not feel, to mask the uncertainty I did. In terms of treatment options, Paul was essentially our last line of defense.
“Send
them over. I will call you back as soon as radiology lets me know something.” He was off.
The next hour was unnerving. Jaymee and I both work at home, me in a converted bedroom, she in the building that used to be a workshop at the end of our driveway. Every time she entered the house, I ran to be with her. Despite being the one who should have all of the answers, this seemed like the proper thing to do. It was certainly the only thing I could do.
Logan was playing outside with some kids from the neighborhood. Brennan, meanwhile, was doing his level best to drive me crazy. I had recently set up a batting tee in the backyard. Even though Brennan was only 2, he had taken a great interest in the game almost immediately.
Over shouts of, “I want to play baseball, Daddy!” I heard the phone ring.
“David, it’s Paul.” I let out a breath that felt as though I had been holding for days.
“Paul, what’s the word?” I knew Paul could sense my anxiousness, and he did his best to allay my fears.
“David, we can try to transplant him.” Hope at last. “The only problem I see is that his Loes score is 13.” I felt the knot reform in my stomach. I knew right away—13 is high.
“We can try. You know I will try.” His voice was kind, and his friendship with my family obvious. I got the same sense from Paul that I had gotten from Patrick. He cared and it showed.
“Let me talk to Jaymee, and I will get back with you as to what we do next, Paul. By the way … thank you. I really mean that. It feels like you’ve pushed aside whatever was on your calendar today to make time for us, and that means a great deal to me.” I was doing my best to keep it together.
“David, it’s my pleasure. You know that. Let me know if you guys want to come up and have him evaluated.”
