A Short Walk Home (2 page)

When I began writing this book, this page reflected that I had such little to really say. But 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.

O
UR 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.”

“Will do.”

After hanging up, I ran out to Jaymee’s office with Brennan in tow. Out of the corner of my eye, I could see Logan running down the street. All at once, I felt like the most powerless person alive.

“Baby, I just spoke with Paul.” Jaymee’s face lit up; she had been waiting for this as much as I had.

“What did he say? What do we do? How bad is it?” Her frustration was clearly mounting, Jaymee’s emotional response to the same powerlessness I’d been feeling.

“He said that things are a bit less than ideal, but that if we wanted to attempt a transplant, he would do his very best to stop the ALD.”

“Oh …” She was silent for a moment. “Is there … any way we can discuss this later?” The strain of the day had her in its grips, and she looked as tired as I felt. We agreed to discuss our options and the future tonight, after putting the kids to bed.

Later that night, as I sat alone with Jaymee discussing plans for moving forward, I could feel the weight of Logan’s diagnosis in the room. I knew Jaymee could, too; you could see it in her
eyes; it was as though what she had been expecting all along had come true.

As we spoke, I began to notice Jaymee hesitating. In my mind, the next steps were obvious. We would fly to Minneapolis, have Logan evaluated by Paul, fly home, and make a final decision based on all available information. But for Jaymee, it just wasn’t that simple.

“If we travel there for treatment,” she began, “we have to appreciate some critical things. First of all, we know no one in Minnesota.”

“I know Paul very well,” I said quickly, still trying to figure out the cause of her reluctance.

“David, Paul would be Logan’s
doctor
. I doubt that he has the time, much less the ability to give us the support we need. My point is, we will have none of that there.” Her body language suggested that she had given this considerable thought, and would not be easily swayed.

“Honey,” I pointed out, “most families stay at the Ronald McDonald House. There are counselors on staff. And I am not so much worried about support as I am about results.” But I could feel the chief executive in me taking over, and while that persona had certainly served me well in the past, this was neither the time nor the place. Before I started citing incidence reports and statistics on ALD marrow transplants, I leaned in, gave Jaymee a kiss, and rested my head on her chest. She took this to mean that we were done talking, for now. A decision would still need to be reached, but neither of us were in the best state to be making such life-altering choices.

The following morning, after dropping Logan off at camp, I busied myself with making the necessary arrangements, for if—when—we went to Minnesota. I started looking for the best (and
most direct) flights to Minneapolis, hotel rates, everything. But before I could purchase the tickets, my phone rang. It was Jaymee.

“David, I need information.” Jaymee’s serious side, the natural complement to my inner executive, was in full effect. Jaymee was a buyer for a chemical company, and is easily one of the most detailed-oriented, meticulous human beings alive when she’s on the job.