Lover/Fighter Fund

Benefiting Adolescent and Young Adult Oncology Program (AYAOP)

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Event Details
Date & Time

Friday, December 07, 2018 from 9:00 AM to 11:00 PM

Event Description

To Sharing our Birthdays Together

When my brother was 18 years old, something that I never saw coming happened. My big brother, someone who 16 year old me thought of as invincible, was diagnosed with cancer. My brilliant, musically gifted, athletic, healthy brother had a lump and in the blink of an eye, he wasn't healthy anymore. Not only that, there was a possibility that he would not be there. There could be a before and after and the after shot would be missing someone I didn't even know I had to worry I could lose.

My brother was diagnosed with a rare and often lethal pediatric tumor. On paper and in life he was becoming an adult with all that entails. Dreaming of the future. Making plans. Establishing independence. Establishing who he was, what he wanted, how he would could get it. With one appointment, the streetcar of his life was forced to a screeching halt. Cancer was not only trying to take my brother's life and livelihood, it had catapulted him to a state of dependence, of uncertainty, of loss of control. A child's tumor was trying to strip away my brother's adulthood before he even had a chance to start experiencing it. My brother, at 18, an unabashed thinker, poet, activist, and musician refused to let anything, even cancer, strip him of what he wanted. While his medical team fought to save his body with surgery, medication, and radiation, my brother fought to save his mind and spirit with a pen, music, and a microphone.

The medical system is built in categories. This allows the development of expertise in certain areas to best help people and their specific problems. But that approach and those categories aren't perfect. A medical world that is divided into pediatric and adult doesn't work for people like my brother. Physiology and pathology are on a continuum regardless of how we categorize disease to manage it because the human body develops and changes throughout life. The physiology of a 19 year old is much closer to that of a 14 year old in some ways than to that of a 65 year old. Our system is not built to handle that and as a doctor, I can attest to the fact that handling the unique characteristics of this age group is not built into our training. People find themselves trapped between two medical worlds, neither of which feels perfectly suited to handle their problem. That is where programs like the Adolescent Young Adult Oncology program come in.

By targeting the unique challenges of the medicine, social impact, and access to resources for this age group, the Adolescent and Young Adult Oncology Program plays an invaluable role in the life of its patients. They fill a particular gap for a very vulnerable population of people who are often not seen as vulnerable because of their age: "The Young and Healthy". The irony is that their age is what makes them vulnerable, as the system was not built to cater to their unique physiologic, social, and developmental needs.

Because of this program and the work of Dr. Petr Kavan, I have just recently celebrated my 30th birthday, which happens to be the anniversary of my brother's last radiation treatment and my brother more recently celebrated his 32nd. Because of the work of Dr. Petr Kavan and this program, I have had the gift of celebrating every birthday with my brother and I can look forward to many more. Because of this program and the work of Dr. Petr Kavan, my brother has had the opportunity to live and, amongst his accomplishments, perform at the Montreal Jazz Festival, be long listed for a Grammy in two categories, and start his own music label. Because of this program and the work of Dr. Petr Kavan, I get to, as a little sister, look at my brother and hug him with stars in my eyes and say, "Jonathan Emile, you are amazing."

So I ask, on behalf of every brother, sister, or loved one who has someone they care about who is an adolescent or young adult affected by cancer, to make a contribution. This allows for the development of research and programs that saved my brother's life and others. Please know that others and I will be grateful for your donation because it allows for the ultimate gift: sharing our birthdays with our loved ones.