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Pediatric Cancer Experiences: Then and Now

World Cancer Day 2019 Feature Image

A cancer diagnosis is, without a doubt, life-changing, yet we often hear from people whose lives were influenced in positive, unexpected ways by their cancer experiences. The two stories below were shared by Lilly colleagues who tackled cancer head-on as children and now are dedicated to contributing to the development of new cancer medicines to help current and future people in a similar position. We are thankful to our colleagues Lewis and Sarah for openly telling us about not only their pediatric cancer experiences but also their lives after. We are truly inspired by them and proud to work alongside them!

Lewis' Pediatric Cancer Experience
At the age of 18, I had just completed the first term of studying chemistry at the University of Oxford when I was diagnosed with an osteosarcoma of the right distal femur, a bone tumor in my right knee. I had to drop out of university and proceed with knee replacement surgery as well as nine months of intensive chemotherapy comprising of six rounds of three cytotoxic agents. After every round I suffered not only from severe nausea, but pancytopenia: loss of red cells resulting in fatigue, loss of platelets resulting primarily in nosebleeds, and most significantly loss of white (immune) cells resulting in severe neutropenic sepsis (bacterial blood infection). This happened after EVERY round and, quite frankly, sucked. The sepsis was treated with a cocktail of high dose antibiotics, some of which I was allergic to, as well as blood products for the loss of red cells and platelets. All of this was done in the hospital and I spent very little time at home in those nine months. 

I am now 32. I completed my chemistry degree and a PhD at the Institute of Cancer Research in London and subsequently joined Lilly as a computational medicinal chemist. My girlfriend of the time, Jennifer, is now my wife and we have two wonderful children together. Without research delivering new medicines, I wouldn’t be here today. Treating many diseases is not just about the medicine to treat that condition, it is about supporting the patient with all of their needs, be it pain relief, antibiotics, anti sickness, etc. It sucks to be ill, and modern medicine has transformed our ability to treat patients, but there is still much to be done and I am proud to be involved in this work at Lilly.

Sarah's Pediatric Cancer Experience
I had just started my 14th trip around the sun when I was diagnosed with papillary carcinoma with follicular variant or as many know it, thyroid cancer. It came as a complete shock and it not only rocked my world but my family’s as well. After all, this was a cancer that typically afflicted women in their mid-late lives, not 14 year-old-girls. I was too consumed with coming to terms with the fact that I had cancer to realize that I would be shaped not only by the cancer itself, but also by the side effects of surgery and treatment too. In my case it is not the cancer that affects my daily life but rather the surgically induced hypoparathyroidism that continues to impact me, shaping not only how I physically feel, but also my fears, anxieties and even dreams for the future. It is important to recognize that the person fighting cancer isn’t just fighting the disease itself, as that is only one aspect. They are also affected by the battle that leaves everlasting open wounds and scars on their lives. In some cases, these effects are even more impactful than the cancer. 

When treating pediatrics, one is ultimately making multiple life-altering decisions that will affect the child for potentially the next 70-80+ years. It is a huge responsibility. As a young child, before cancer, I never thought about being a clinical trial patient. It wasn’t something presented to me as an option. Now, at 36 years old, I believe it is a calling and my duty. With a disease as rare as this, I feel drawn to put it to use to better the world. Being a clinical trial patient is my chance to give something back and, maybe even better, the future for all those that come after me. I feel very grateful for the physicians and scientists who fight the battle for a rare disease that they themselves are not afflicted with. People with rare diseases like me could easily be forgotten but through research, we are not. It is exciting that together people can partner, as trial patient and researcher, to find a treatment that may impact the lives of others. I know that for me, to be a part of a potential cure would be my greatest gift to give.

Tags: Cancer, Pediatric Research,

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