The middle of three sisters, Molly was quiet but had a stubborn streak. She loved life, loved her sisters, loved to laugh, and loved to draw.
“She was very artistic,” said Julie. “She was a really good drawer, really good painter. I know every parent says that, but she just saw things differently than the other girls did or the other kids that I have known. Her artwork is still a big part of our life.”
Even though Molly’s body began to lose function because of the disease, she didn’t let that change her passion for art. She continued to draw, she just had to modify how she went about doing it.
“She was able to do that because she’s amazing,” said Julie.
“She had the very best laugh. She had a belly laugh that you could hear throughout the entire house and it was very genuine – more than any other kid that I knew. And very contagious.”
When Molly was diagnosed with DIPG, Julie and her husband, Peter, decided she would participate in Dr. Mark Souweidane’s clinical trial at Sloan Kettering – the same trial Chad Carr was part of.
“I believe Chad was right after us,” recalled Julie. “Tammi talked to my husband quite a bit leading up to the procedure.”
Participating in a clinical trial provides hope, but not in the way the general public would believe. Clinical trials are conducted to test methods of treatment, not find a cure. If a subject is cured in the process, that is an unplanned benefit.
“There were a couple times in my head I thought, ‘Well, am I using Molly as an experiment?'” said Julie. “But once we met the team and really saw that they weren’t doing this to get some kind of grant or recognition — they really just hate DIPG — it calmed my nerves that it was a good thing.
“In the end, even though she couldn’t understand that, I know that’s what she would have wanted, too, is to help other kids find a cure.”
DIPG is located in the brain stem, which is what makes it inoperable. It’s the same reason tissue samples haven’t been collected until recently, when parents started making the difficult decision to donate tumors following death.
“We knew that as we got into the really ugly business of the disease that we didn’t want other kids to have to go through it,” said Julie. “We also knew that if parents didn’t start stepping up and donating tumors and going through trials then they weren’t going to find a cure.
“In the end, it was an easy choice, we just had to get through some of those mental hurdles at first.”
Coping with Words
Julie began writing when Molly was diagnosed and continues today. Her writing is powerful, captivating, and undoubtedly comforting to those who share her pain and experience.
On June 8 – a little more than two weeks following Molly gaining her angel wings – she published Molly’s Eulogy. It is wise, profound, and shows incredible strength in faith and love.
It is the perfect way to end a story dedicated to Molly and the incredible girl she was.
Dear Molly Dolly,
It seems like only yesterday I laid eyes on you and fell madly in love. Those big brown eyes captivated the world and our hearts. I remember holding you and thinking you were perfect in every way. Your quiet, calm, and sweet spirit showed through from day one.
Never one to cry, you were always content with just the necessities. Full belly. Soft bed. Warm arms. This carried on as you grew.
You have always been a thinker, observing the world around you quietly. Not asking many questions, but figuring it all out on your own. But this didn’t mean you were a loner. You have always been up for a good time. Laughing, smiling and silliness have ALWAYS been your favorite.
You have willingly handed out smiles. I remember when you were very little, Samantha flipped your car seat over. Instead of crying, you patiently hung upside down, until things were fixed. This is exactly who you are. Tough, strong, calm.
You’ve been the perfect middle sister. Proud that you are the only one who had the job of big sister AND little sister, you were peace keeper, yet instigator when no one is looking. You have the knack for driving your sisters crazy without being obvious. And you always know what will cheer them up when they are down. Your sisters have learned from you how to be a good sharer and master toy manipulator all at the same time.
Your Daddy and I have also learned many things from you as well. One is, you can always smile… all you need is a little bathroom humor. Your laugh is infectious and no matter how bad we are feeling, you have always known how to make it better. You also are a master snuggler. No one could ever top your ability to get right in the nook of Daddy’s arm and stay there for hours without getting one pointy elbow involved.
We are going to miss that one perfect ponytail ringlet bouncing through the house. Your absolutely contagious and sincere belly laugh that could be heard from any room in the house. Your sense of adventure, whether it’s the request for the highest under dog in the world, sitting in the front row of a roller coaster that even I was scared to go on, or just your constant request for “faster and higher!” I’m not sure if heaven has roller coasters, but if they do, I am sure you are in the front row with your hands up.
I’m going to miss our early mornings together. You would spring downstairs and always join me at the table, quietly eating your cereal. Neither one of us ever had the need to say a word, but we were blissfully happy in the early morning silence.
Your love for animals has always been in the forefront. In fact, the day you told me you wanted to be a farmer’s wife did not shock me one bit. If it was furry, fuzzy, warm, and snuggly, you were first in line to touch it. I imagine you even now, being that child the Bible speaks of that lies down with the lion.
You’ve always been smart and it showed in your excellence and efficiency in school, especially reading. Cursive was second nature for you. But what you really had a talent for was art. Not a day went by that you didn’t color, cut, glue, or paint. Our house is covered with your beautiful masterpieces. This was truly a God-given talent. Even when you could do nothing else, and you were in pain, you determined to color until you could no longer.
And that, my dear, is the thing I’m going to miss the most. Your determination and perseverance. The words “I can’t” were never, ever part of your vocabulary. You’ve taught me that if something is hard, that just means I better roll up my sleeves because it’s time to try harder. Samantha and Clara will carry on this lesson with them as well. Along with the lessons of compassion and empathy that only could have come by you. You see Molly, that is just it. You’ve brought so much to the world. You’ve changed it. And it will never again be the same.
Some say you were too young to go from us, but I say you lived the full life God intended you to. And I am so thankful He let me be a part of it. I no longer question “why?” I know why. God has a divine purpose for all of us. You are just so amazing that you accomplished in 6 years what most couldn’t do in 60.
For now, I’ll miss you. I’ll miss hugging you, kissing your cheeks, and making you laugh. I wish I could wrap my arms around you one more time. But there will be a day when we can hug and never let go. I’m thankful that Jesus gave that hope to us both.
So until then, hug a lion for me, pet a lamb, and climb a tree. I’ll see you soon.
September 10, 2008 – May 24, 2015