This is the first in a series of stories that Lily Weaver will write about her journey with a deadly disease.  Next week, look for her story about CureFest, where she was a featured speaker.

The summer of 2016 was 62 days long. That may be short for most, but it was blissfully long for me. This is because I was worry free, happy and healthy. 

Four years ago that summer was a different story.  

I had been in the hospital for 42 days straight during the spring. That summer, I was recovering and going on a Disney vacation to celebrate finishing my treatment; although, it was no ordinary vacation. I was now a survivor, a statistical miracle.  All over America, statistically, there are 43 more kids diagnosed with cancer  and seven children die–every single day.

Cancer doesn’t just affect that person and their family; the whole community is involved. It affects the doctor who just delivered the news; it affects the neighbors, friends, nurses, and it impacts strangers I will never meet face to face. 

When I was diagnosed, I was beginning fifth grade. When children are going into fifth grade, they are mostly worried about recess, friends, and being the top dogs of elementary school, but for me, it was otherwise.

I was worried about living or dying.

Many people don’t want to wake up in the morning and get ready for school. I would have rather done that than have to wake up in a hospital bed with tubes attached to me.

Despite the comfort and love of all of my family and friends who surrounded me through my worst times, sleeping in a hospital bed was scary for this 10-year-old.

Looking back from a relatively healthy place, I realize that all of the “thank you’s” I said then, need to be said again.  I appreciate each day this extended family has given me.

Thank you to Dr. Laura Copaken for finding my cancer and saving my life. I love that I can call you “Aunt Laura” now. I was diagnosed with Stage 4 Ewing’s Sarcoma. Not only did Dr. Laura Copaken, who has worked as an orthopedic surgeon and bone doctor for over twelve years at MMI (Mid-Maryland Musculoskeletal institute), have to tell my family I had cancer in my arm. I was the first patient she had diagnosed with a malignancy — and, she says, “The one that affected her the most.” 

Thank you, Dr. Wiley, for always being there for my family and me as we went through my journey with you by my side. Dr. Wiley was my pediatric oncologist from my first appointment until he retired this past year. As soon as I had a fever, we would call Dr. Wiley no matter if it was day or night.  He was always receptive to my mom’s text messages at midnight and always eased our fears at every visit.

Being 10 years old and thinking only adults got cancer (and finding out otherwise) was devastating, but finding out that I needed treatment to keep me alive was even more of a nightmare.

Knowing I would be at the hospital once a week every three weeks was terrifying, but that wasn’t the worst part. The worst part was finding out I would never be “normal” again, finding out I would lose all my hair, be unable go to school, and, most of all, never raise my left arm again.

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.

My first week of chemo was when it really hit my family and community that the cancer was real.

It wasn’t just a dream that would be over with in the morning: this 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. Everything was then the unknown since we have never had to deal with chemo before.

Thank you to all the nurses, and white coats, especially Dr. Duy Tran, who made a black and white moment more colorful. The nurses and interns were the best part. They were always so kind and caring. They always cared about what I had to say and would spend time with me. We call the interns ‘white coats’ because they would come into my room and explain my diagnosis wearing white coats. We were close enough that Dr. Tran and his wife decided to name their baby girl, Lily.

While I was in the hospital, my friends and community were out raising money. By doing this they established Lily’s Hope which is now used to give back to families who are dealing with cancer. To raise money they organized a 5K, a golf tournament, a basketball game, and much more.

During the 5K run, I was sick but I felt it was important to go. My family and friends put in so much work and effort into making it all worth it. To see the community settle their differences with each other to come together and raise money for a cure was amazing.  There were over 2,000 runners at this 5K.  What was even more powerful was that it was held right in my neighborhood with the slogan, “There is No Place Like Hope.”

Thank you to everyone who helped me and my family through this rough time. Debbie Williams from PPF, Patty’s Pollatos Fund, another cancer organization, helped my family throughout everything. Williams’ organization has helped many local families with the PPF’s mission statement, “raising funds for families during the temporary financial strain caused by cancer, spinal cord injuries, heart, liver or kidney transplants which knows no income level.”

To the child who lost a life, but saved my arm, thank you.  After months of chemo, I had a major surgery where they took out my humerus bone and replaced it with a cadaver bone. My surgeon, Dr. Albert Aboulafia, spent six months looking for the right size cadaver bone while I was in chemo. Donating organs and bones is important because it can help save someone like me. Here’s how you can become an organ donor. 

Thank you, Dr. Albolafia, for saving my arm, getting the cancer out of my body, and for being a lifesaving part of my story.  My surgery was eight hours long. After surgery, my arm was stuck at a 90° angle and was swollen.  I needed to have a second surgery the next day as my arm was swollen beyond belief.  Dr. Albolafia and team were worried for a bit that we were going to lose my arm.  Thankfully the only side effect was my arm blistering horribly.

Throughout the year, my family and I met some amazing people who then became a part of my story and my family.

Thank you, Grace, for being the best older sister anyone could ask for.   Grace, my older sister, was worried like a second mother. This changed her and pushed her to become the leader she is today. While I was in the hospital, she was stressed out and had to help take care of my younger brother, Frankie, while still getting straight A’s. She would Facetime me, try to lighten the mood, spend as much time with me when I was home, and, honestly, just be my truest friend.

Thank you, Frankie, for making me laugh and keeping faith I would get better. Frankie was just entering Kindergarten when I got diagnosed.  We were so excited to go to school together.  I was going to be the big sister making sure he was okay in school.  We lost that moment in time, but Frankie loved to make me laugh and spend time watching movies in the playroom.

Thank you, Mom and Dad, for always being there and believing in me that we would get through this.  My mom, Amy, took a year-long leave of absence from teaching elementary school. I see how hard she works and know this was a tremendous sacrifice of time–and income. She and my dad, Frank, would take turns spending the night and day with me at the hospital. I was never left alone.  I learned quickly what a gift this was as there were many young children on the cancer floor by themselves for hours of the day, while their parents were working. My dad fought for the best care for me always.  I always have known that he would be there helping me and would never leave my side.  He was known to bring in some Chick-fil-A to brighten my day!

Thank you to everyone who was there for my family and me through this rough time and for spending time with us in the hospital. There were many unseen angels, aunts, cousins, and grandparents that were always there for me and my family. They would all come visit me in the hospital and play some games. 

Now I am a part of The Truth 365, a much larger community of cancer fighters, survivors, and advocates. This keeps me moving forward away from cancer and illness but toward hope and cure.

Childhood cancer awareness month is September,but most people don’t know that since they are getting ready for breast cancer awareness month is October. Childhood cancer gets 3.98% of cancer researching, while breast cancer gets almost 20% research funding. As you’re getting ready for October, don’t forget to go gold for childhood cancer in September. Go gold or go home.