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Rally Kid Amanda Tells Her Story

Aug 4, 2020 | Rally Blog, Rally Stories, Research, Teens | 0 comments

Hi everyone! My name is Amanda. I am 17 years old and a rising senior in high school. I am a Rally Kid, as well as the founder of The Osteosarcoma Society. I was diagnosed with osteosarcoma, a form of bone cancer, in my right femur on December 3, 2019 after two months of complaining of knee pains.

I need your help. But first, I want to share my story.

I had gone to my parents multiple times to inform them of my discomfort. They assumed it was due to lack of activity and I just needed to exercise more. However, that made no difference, and over time, my knee began to swell up more and more each day. After spending Thanksgiving in Miami with my extended family, we returned to Atlanta and I begged my mom to take me to a doctor.

Amanda with her family prior to diagnosis

We went to get an x-ray and the results presented a large mass eating away at my bone. Worried sick, my mom scheduled an MRI for the following day. My family was then struck with the worst news of our lives: “Amanda has cancer.”

I have never been so terrified and confused in my life as I was at that moment. I had no idea what I was in for—the pain and terror I would have to undergo throughout the next nine months.

Although my mom fought colon cancer for two and a half years, her experience was completely different as to what I was about to experience. She told me to be strong and to trust the process; it will get better. I believed her, as I had watched her fight and overcome cancer herself.

Clueless about where to turn, I remembered seeing an Instagram page created for a girl named Catherine Williams, who had been diagnosed with osteosarcoma in May 2019. She was one year older than me, went to a nearby school, and shared mutual friends.

Catherine and Amanda

Upon reaching out to her, we instantly connected and became close friends. Catherine was so happy to meet someone who could finally relate to her pain and irritations. She was my saving grace; she prepared me with never ending tips to get through chemotherapy the easiest way possible, what to do with nausea, pain, and emotional rollercoasters, and so much more.

She supported me and I supported her until the very end. We were both getting treatment at Children’s Hospital of Atlanta (CHOA) and ended up befriending another girl with osteosarcoma named Ellie. She was Catherine’s age.

Amanda and Ellie at the hospital

The three of us got as close as ever. We called ourselves the “Osteo Trio” and stayed in contact every single day.

I began chemotherapy 13 days after being diagnosed and five days before my 17th birthday. All kids with osteosarcoma are given something called MAP which consists of three different chemotherapy drugs given in different combinations.

I felt normal while receiving the first infusion of two chemo drugs. I thought I would be fine, and that chemo isn’t so terrible after all…until I woke up the next morning.

I felt like I had just been hit by a truck, and I was continuously vomiting. It was awful; I seriously did not believe I could ever put myself through it again. I got a three-week break and then had to go back to get the third chemo drug.

Unfortunately, it wasn’t any easier. I was totally unprepared for the side effects and ended up with a mouth full of ulcers. I could hardly drink, and I couldn’t eat for 13 days.

I did a total of four awful rounds of MAP chemo treatments before my big limb salvage surgery on March 10th.

The part of my femur that held the cancerous tumor was removed and replaced with a titanium rod. I also had a full knee replacement. I was in a knee immobilizer for two months and made slow, but significant, progress in physical therapy.

Amanda post-surgery

Six weeks after my surgery, I returned to the hospital to complete my second cycle of the MAP chemo protocol. Although I knew what to expect, treatment wasn’t much easier. I ran into complications with almost every admission and even had to get a second surgery on my leg because of an infection.

I am proud to say, despite all the pushbacks and issues, I am scheduled to receive my last chemo this Thursday or Friday!

Unfortunately, every osteosarcoma battle is not always a victory. Catherine recently passed away. Her fight was much more difficult than mine and Ellie’s. She discovered her cancer much later than we had which, unfortunately, gave the disease much more time to spread throughout her body.

She tried the standard MAP chemotherapy treatment and it didn’t work. She also tried immunotherapy and radiation, and she even participated in clinical trials at MD Anderson in Houston, Texas. Nothing worked. The pain eventually became too much to bear and she peacefully passed at her home surrounded by her family on June 2, 2020.

Catherine’s memorial in her high school parking lot

It frustrated me beyond comprehension that Catherine could not be cured. This is what initially drove me to look into the MAP treatment, only to discover that it hasn’t been changed in over 40 years!

Osteosarcoma is one of the most common cancers affecting adolescents, yet very little is known about the disease. If MAP doesn’t work, there are currently no other viable treatments.

I was so frustrated and had to do something, so I created The Osteosarcoma Society to collect donations that will be directed towards funding more extensive cutting-edge research for this disease.

I am blessed to have such a giving and caring community that has enabled me to provide Rally Foundation with $25,000. Rally is using this as a match to fund some really important osteosarcoma research.

Dr. Adam Durbin’s peer-reviewed osteosarcoma target therapy research project needs $50,000. He is based out of Dana-Farber Cancer Institute in Boston and will soon be transferring to St. Jude.

Dr. Durbin in his lab at Dana-Farber

Dr. Durbin, who has a M.D. and PhD, has developed a new compound called JQAD1 which targets the aggressive protein EP300 and spares the CBP protein. Sounds technical, right?

Think of it this way. EP300 and CBP are brothers. When it comes to osteosarcoma, one is good and the other is bad. EP300 is an aggressive protein that osteosarcoma needs to survive while the CBP helps normal and healthy cells grow. Dr. Durbin’s work targets killing the EP300 and leaves the CBP alone so healthy cells can grow. All of us hope for this to be successful so there can be a new treatment for osteosarcoma without all the problems that the current treatments have.

This is where I need your help. On Wednesday, August 5, YOU can help change the future of osteosarcoma! I am using my $25,000 to match all donations given to Rally this day so we can fully fund this promising research. All donations, big and small, are greatly appreciated.

I am forever thankful for every contribution made towards finding a cure for this terrible cancer. And I will be so excited, with your help, to fully fund Dr. Durbin’s project before I take my last chemo. Thank you all so much.

Rally On!

With love,

Amanda

12 Comments

  1. The Pines

    Amanda, you are so strong and courageous! You took your diagnosis and did something with it…well two things. Kicked it’s ass and funding a research study. You are amazing and we love you!

    Reply
  2. Judith Buran

    Amanda,
    You are an amazing girl. Your story touched my heart . I wish Dr. Durbin will find the cure soon and create an army of the CBP protein to fight osteosarcoma.
    I know , you are going to beat this cancer and you will be the one to change the way how to fight it.
    I wish you health and happiness !
    Judith Buran

    Reply
  3. Teresita Solomiany

    Amanda
    You are a warrior and I am very proud of you
    Love you a lot
    Abuela y abuelo

    Reply
  4. Elise Lander

    This is for Amanda, one of the most beautiful students to ever attend Galloway. Thank you.

    Reply
  5. Michelle Barrett

    Amanda- thank you so much for sharing your story and your beautiful courage to change things.
    My son, Lucas and I are currently sitting in the AFLAC Cancer center waiting for him to clear his methotrexate.
    Lucas hasn’t met anyone that has been through this before. His story is almost identical to yours. He found out he had cancer on his 16th birthday on June 16th if this year.

    He is scheduled for limb salvage surgery in mid September.
    You are a North Tar for us right now. I would love to meet you and your family or at least FaceTime.
    So very proud of you.
    -Michelle

    Reply
  6. Hylos Barrett

    For my Grandson Lucas Barrett.

    Reply
  7. Jennifer LEFF

    You are inspiring and we are so happy to support you and so many others!!!

    Reply
  8. Perla Stein Radlow

    Hi Amanda, I know all of your relatives in your fathers side, and Teresita your grandmother is close to my heart.
    I hope you recuperate very soon! I aplaude you for what you are trying to achieve and will donate in your name.

    Reply
  9. Elaine Kay

    Amanda, you are one AMAZING young lady! Rally On always!

    Reply
  10. Rossana Franco

    Amanda you are so strong and an inspiration ! I’m sure you will continue with your bright future ahead and be able to help many. You don’t know me but I know your story from your aunt Tara who is my friend and loves you so much🙏🏻

    Reply
  11. Jamie

    Thank you for sharing your story and all of your efforts!! My daughter, Emma June (14) was diagnosed with Osteosarcoma in February…MAP is a tough process. Coupled with a difficult surgery, it is a long, hard marathon.
    You are so brave!!

    Reply
  12. Sophie Steinberg

    You’re amazing!

    Reply

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