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.
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.”
***********************************************************************
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/.
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/.
"I wanted them to be touched, yet taught." You succeeded!
ReplyDeleteThank you Eileen - sure do appreciate you and your thoughts!
DeleteMatt, I can't even imagine having a double diagnosis (if that's the correct term) for my child. It was bad enough with my husband.
ReplyDeleteDiana
www.pencildancer.com
Wow, reading the last post, I thought it must have been challenging enough with Down Syndrome. Then when I read the first few lines here, I thought I had somehow misread Leukemia. I read on and couldn't believe she had both. What a testimony you are, that you didn't let these trials make you bitter, but instead have used them to glorify the Lord!
ReplyDeleteYou're so very generous with your words Megan. Thank you so much!
DeleteMatt this is amazing so many people have no idea what one goes through in a situation such as this and your idea to write your book as though talking with the reader makes your story personal to them. What an amazing little girl, what an amazing legacy she has begun and what love, courage and openness it took for you to share. Again when you speak you truly bless. I really enjoyed this.
ReplyDeleteThere are days when writing or speaking of our story, my heart becomes so truly full of emotion - thankfulness, sadness, happiness - the whole spectrum of feelings.
DeleteEmily was truly amazing and what a legacy she has left. I just try to share it the best way I know how. Thank you for your kind thoughts Crystal.
Thanks everyone for your comments and thank you Matt for sharing Emily's story with us! You are an inspiration.
ReplyDeleteThank you for generosity in hosting me Jordyn. God bless.
ReplyDelete