My Emily

In trying to relay what type of leukemia Emily had, again, I attempted to mix emotion and information that doesn’t overwhelm the reader and hopefully keeps them emotionally attached.

We were briefed by Emily’s oncologist regarding details of her diagnosis and what the game plan was going to be. It was then he informed us our little one had acute lymphoblastic leukemia – or “ALL” to those familiar in leukemia circles.

Acute lympho-what? I thought to myself. Come on doc, speak English. At least break it down in some form of Dr. Seuss for me.

Our physician attempted to define Emily’s form of leukemia to us in as simple language as possible.

“It’s cancer of the white blood cells,” he said simply. “ALL is very common cancer in little ones. Your daughter’s malignant cells are continuously multiplying and overproducing in her bone marrow. Basically, Emily’s ALL cells are bumping her good or normal cells out.”

He did indicate recent advances in treatment gave us a 70 to 80 percent chance of remission.

Remember that word.

Remission.

In a story – fiction or not – emotions are critical. Reactions can allow the reader to attach themselves to the characters or people involved …

Emily would often look at us and cry for help. Someone so small and so innocent had no idea why this was being done to her. We did all we could to comfort her. We felt helpless.

If that wasn’t enough, we would then learn the incidence of leukemia in children with Down syndrome is greatly increased in comparison with the general population.

In a sit-down with our physician, he indicated that it is estimated the risk of leukemia for children under 10 years of age is increased by at least 18 times if they have Down syndrome. He told us that nearly one in a little less than 100 children with Down syndrome develops leukemia, compared with one in every 2,000 children without Down syndrome.

Wasn’t the Down syndrome enough? My gosh! I thought to myself with clenched teeth. Come on God. Can’t you give us a break? For crying out loud!

Although I carried a great deal of deep anger toward God, I couldn’t be hateful. I mean I was praying to Him to heal my daughter. I just didn’t understand His response.

I came to the realization I didn’t know how to pray.

Everyone’s story, situation and comfort level is different. For me, it was easiest to sit down with the reader and just talk to them. It may not be that way for you. I just tried to be me.

I didn’t want those who invested their hard earned money in my little book to be intimidated by medical terms. I wanted them to be touched, yet taught. They could learn what Down syndrome or leukemia was without being overwhelmed and walk away having met an incredible little girl and learn of her story. I want to make sure each and every reader can turn that last page and say, “That Emily is such a remarkable little girl. Oh and her dad? He’s not so bad.”

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Matt Patterson is the author of My Emily and an award-winning writer, editor and communications professional. His two-plus decades of experience include public and media relations, as well as print and broadcast journalism. He volunteers his time to helping organizations and charities dedicated to assisting families with children who have special needs or those battling pediatric cancers. He resides in Arizona with his wife and two daughters.You can learn more about Matt at http://mattpatterson.me/ and http://www.my-emily.org/.

Trying to capture the emotional heartbreak of a diagnosis and simultaneously making sure specific medical information is correct was a big hurdle for me while writing My Emily.

I wanted this book to be a quick read, but one that could leave a lasting message or lesson. Someone could sit down for an hour – give or take a few minutes – and perhaps walk away being touched in some small way. My intention was to have the reader feel I was sitting right across from them telling our story.

It was my hope when I started writing this book that I could share the feelings and heartache one experiences when hearing that your little one is born with Down syndrome or later diagnosed with leukemia. I wanted to put readers in the hospital room with us – to wonder what my emotions and thoughts were when hearing this gut-wrenching news.

Although there are some intense moments in My Emily, I also did my best to infuse humor. I’m told I can be quite humorous and I tried my best communicating this sense of humor, whether it was in particular moments or just how I talk. Again, I wrote this book with the premise of me and the reader sitting down at a coffee shop and talking. I wanted readers to have a hunch as to who Matt Patterson is as a husband, father and regular guy.

In addition, I wanted to make sure my medical information was correct, but simple. When one begins to use words like chromosomes and genetics, I didn’t want to lose readers. I didn’t want them to have to read paragraphs three or four times to understand what I was trying to say.

In the following excerpts from My Emily, I share the moment where we learn our daughter may have Down syndrome …

He walked into the room and closed the door. As he set down his clipboard, he also pulled the ceiling curtain around the bed – even though we were the only ones in the room.

I began to think, This can’t be good.

I panicked.

My mind raced.

After taking a very deep breath, our physician told us that Emily was born with Down syndrome – a genetic, chromosomal disorder. To be honest, I didn’t even know what Down syndrome was.

We were numb.

I couldn’t breathe. I truly couldn’t breathe.

“An extra chromosome,” the doctor said with a deep sigh. “At conception, an individual inherits 23 chromosomes from the mother and 23 from the father. However, sometimes a person receives an extra chromosome from one of the parents. In Down syndrome, an infant most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father for a total of three chromosomes 21.”

It was as if the world went quiet. I heard nothing.

We did everything right, I said to myself. This just doesn’t happen – not to us, anyway. It’s not real. It’s a dream – a really bad dream – right?

Not so.

“It’s nothing you did or didn’t do,” he said. “This could happen based on your genetic history or by just pure chance.”

I was of the opinion that this was just a horrible mistake. Chromosome 21? I asked myself. Chromosomes are numbered? Copies of a chromosome? Pure chance?

Return for Part II on Wednesday.

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