Lily Weaver

If I could go back in time and be a 10-year-old with a clean bill of health, I wouldn’t.  This is my fight.  

When children are going into fifth grade, they are mostly worried about recess, friends, and being the top dogs of their elementary school.  But for me, I was worried about living or dying.

It was Dr. Laura Copaken who found my cancer and saved my life. Dr. Laura Copaken, who has worked as an orthopedic surgeon and bone doctor for over twelve years at MMI (Mid-Maryland Musculoskeletal institute), had to tell my family that I had Stage 4 Ewing’s Sarcoma in my left arm.  I was the first patient that she had diagnosed with a malignancy — and, she says, “The one that affected her the most.”   I now call her  “Aunt Laura.”

Being 10 years old and thinking that only adults got cancer was devastating; but finding out that I needed treatment to keep me alive was even more of a nightmare.  Before starting chemo, my treatment began with three small surgeries. Two of those surgeries were biopsies, and the last one was to put in a port.

The biopsies were in my arm and my lungs to make sure the doctors were treating the cancer with the right weapons. The port was so I wouldn’t have to be pricked every time I needed blood taken and to transfer the chemo into my body.

It was during my first week of chemo that it really hit my family and friends that my cancer was real.  It wasn’t just a dream that would be over with in the morning.  Living with cancer would be my life.  This was the hardest week and round of chemo, mostly because the chemo affected my body; and my hair started to fall out.

Losing your hair is like losing a part of you.  Cancer patients use hats or wigs to cover up the baldness, but they are itchy and annoying and feel like a chore to put on.  My best go-to were headbands.

The nurses, white coats, and especially Dr. Duy Tran, were always so kind and caring. They made a black and white moment more colorful by listening to what I had to say and spending time with me.  We called the interns ‘white coats’ because they would come into my room and explain my diagnosis wearing white coats. We so close that Dr. Tran and his wife decided to name their baby girl, Lily.

Dr. Albert Aboulafia spent six months looking for the right size cadaver bone while I was in chemo.  My humerus bone was replaced with a cadaver bone from another child my size.  Donating organs and bones is important because it can help save someone like me.  To the child who lost a life, but saved my arm, I’d like to say “thank you.”  

A self-esteem shaking problem is having scars. A scar isn’t something that you have for one day then it goes away. Rather, it’s there for your whole life. Many people look at scars as representing themselves while others use them to tell their story. Scars come in all different shapes and sizes, and no one should be ashamed of having one. My arm has a 12-inch scar that will show, no matter how long it is.  I will have a scar on my wedding day.

But, I’m going to focus on the rainbow after the storm. The rainbow is knowing you beat cancer and knowing that you are now an inspiration to others who are on this cancer journey.   

Today, I am officially five years in remission; however,  I know that childhood cancer will be part of my adult life.   I am an advocate for funding for child cancers and a spokesperson for Truth 360.  I just tried out and made my school’s tennis team using an arm that once was filled with cancer and that I should have lost.  Statistically, I shouldn’t be here.  And that’s my point.  Without the talent of incredible doctors backed by funding, I would be a statistic.

If I could go back in time and be a 10-year-old with a clean bill of health, I wouldn’t.  This is my fight.  For me, this fight will never be over. We will always be fighting for more funding and fighting for a cure. This fight will be with me forever, and I wouldn’t want it any other way.

– Lily Weaver, Maryland

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