About Alli. By Alli.
It is with great sadness that Alli’s Journey announced that our vision, courage, strength and heart, Alli Shapiro Amar, lost her battle with cancer peacefully on July 12th, 2006, just a few months shy of her twenty seventh birthday. Alli fought cancer for seven years, and we at Alli’s Journey will continue to fight alongside her memory and spirit. We are determined to work with everyone to educate and support the young adult patient and to defeat the enemy that took Alli from us too soon.
ALLI SHAPIRO
Written in 2005
“I’m sick and tired of being sick and tired.”
I was diagnosed with Hodgkin’s disease 7 years ago. I was 19 years old and instead of looking forward to spending the weekend with friends I was dreading what tomorrow would bring. When I first became ill I was convinced that I was not going to achieve many of the same goals as my peers and that an uncertain future was my destiny. Incredibly, with the support of My loving family, physicians and friends, many of my dreams did come true. The most remarkable one was meeting my husband, Philip Amar. When I told Philip about my illness, instead of running away or treating me differently, he stayed by my side where he’s been ever since.
I am also proud of the fact that, in spite of having to take two semesters off for chemotherapy treatments and recovery, I graduated from Ryerson University’s Theatre Program with a Bachelor of Fine Arts degree in 2003. I am confident in my ability to take whatever hand is dealt to me, work with it and achieve my goals beyond everyone’s expectations. It’s hard to persevere when the world is telling you to take it easy and maybe the best thing is to stop school. My goal during my four years at university was simple - to fight cancer and to graduate on time, with high marks and with my friends. I accomplished all of that. I graduated from an intense four-year program in three years and for a year and half, I was going from cancer treatment to class and back again. It’s hard to set goals for a future that is filled with unknowns. Theatre production was always an important part of my education and my life…from synagogue musical productions to producing the high school musicals - a part of my life that when all is well, I hope to continue by working in theatre or television production.
A lot has happened since that February day when the results from my biopsy came back positive and I began my life as a cancer patient. I’ve had some ups, some downs but mostly I’ve learned some valuable lessons about life, love and what’s really important. Most of all, I realized that with the love and support of good friends and family…anything is possible. I realize, that it was never my wish or intent to become a model of what a young cancer patient is in this community, but I do believe that it is very important for me to be a participant in assisting other young adults get through this terrible ordeal. Now that I have learned how much strength I can draw from the people and resources around me I want to do what ever I can to make sure others get the support they need, not only to live with cancer but to fight it as well.
More from ALLI
Too Young for a Mortgage but not for Cancer!
The Life of the Young Cancer Patient
It is hard to explain the feeling of being thrown into a tornado of emotion and change upon hearing three words. ”You have cancer.” At that moment and forever on, nothing else is more important. Cancer happens spontaneously, without permission or notice. But life must go on; so now that is it here, what can be done about it?
Living with the disease is the heaviest weight one can burden. No matter how much bravery you embark upon to try and sink it, it remains buoyant, forever reminding you that you are sick. From diagnosis to doctor run around, final action plan and confusion, fear and anger sets in without any venue for release. The truth is we are sick, we are different and no matter how we mask our sickness, society’s rose-coloured glasses are constantly dyed dark red.
Society must adjust its eyesight to see that young people living with cancer are not living apart from the rest, but searching for ways to be normal and be treated as such. It is hard to live your life when you are not sure what the next CT result will bring; it is even harder when you are reminded of the fact that you have cancer whenever someone looks at you. Youth battling cancer must bereft themselves of the constant reminder that they are sick; that is a fact they do not forget anyway.
In addition, young adults soldiering through cancer have different needs then older groups who struggle alongside. Furthermore, young adults are one of the largest segments being diagnosed and still, few outlets exist for help and guidance. The Healthcare system must take a look at what support is needed and adjust their lens to fully accommodate young adults on their journey to defeat cancer.
Cancer affects everyone, not just the patient. Still, not every patient and their family gets all the help needed to beat the disease. Why is that? How do we bring upon change?
Alli’s Journey will pose all of these questions, problems and needs to help young adults fight and most importantly, beat cancer.
Below is a copy of an article that appeared in the January 10, 2007 edition of the Lives Lived Section of the Globe & Mail Newspaper. It was written by Alli’s mother, Pam Shainhouse, and her friend, Melanie Orfus.
Daughter, sister, wife, niece, cousin, grandchild, friend. Born September 6, 1979, in Toronto, Ontario. Died July 12, 2006 at the Princess Margaret Hospital of Hodgkin’s Lymphoma, aged 26.
Alli’s yearbook quotation when she graduated high school came from a song written by one of her favourite bands, Counting Crows. “I can’t remember all the times I’ve tried to tell myself to hold on to these moments as they pass”. Although she was afforded fewer moments than she deserved, she used her time to be a strong, bright, loving person, living for her moments with family and friends.
Alli collected her friends from every stage of her life – elementary school, high school, university and beyond. With everyone scattered across the country as young lives progressed, her ability to maintain these bonds was inspiring. This devotion was cultivated as a young girl from the strong relationships she had with her family. She had an especially powerful bond with her grandmother, a strong woman whose maternal influence, and keen eye for a good bargain, could be seen in her granddaughter. Weekends at the cottage, or a trip to the casino with Bubbi, were very special.
Alli’s family and friends will always talk about her hugs - her full, strong, straight-from-the-heart hugs. If you gave her a mediocre hug, she would let you know and then squeeze until you understood what a true hug really was. Her honesty, doting, and genuine love and concern made her a natural mother-figure, prompting her friends at age 17 to get her sweatpants with “mom” written on them.
To complement this maternal instinct, Alli applied tenacity and wisdom in all the right situations. When the best limousine was needed for Prom and when donations were needed for the school play, you went to Alli. When her friends wanted to give her younger brother beer at a concert, Alli stepped in. She had a real passion to express herself. Although she had two brothers to compete with, Alli’s opinions were always heard – even if you did not want to hear them! She could, and would, confront anyone; however she did so with the appropriate balance of reprimand and encouragement.
She matched this audacity in behaviour too. At one high school exam, the class was given the essay question in advance. Alli saw no reason to wait. She immediately borrowed some school paper and prepared her essay at home one night. At the exam, she snuck the fully written essay in under her sweatshirt. The only evidence of her bold move was the loud coughing she produced to hide the crinkling of the paper when she pulled it out and flattened it out on her desk. The next few hours flew by and Alli emerged from the exam very well rested!
It was not long after high school that Alli was diagnosed with cancer in her first year of Ryerson University. Instead of letting it slow her down, she graduated with a Fine Arts Degree at the same time as her friends. She endured chemotherapy, radiation, and a stem cell transplant while others were drinking beers and worrying only about finals. Instead of hiding out, she maintained friendships and made new ones; she partied at spring break in the Dominican Republic, took a group of teenagers across the United States, and travelled to Israel with her mother. In class, Alli worked late nights producing plays, and even went the extra mile of tracking down a partner who was avoiding work on a project. Her attitude, energy and strength made us all forget that she was sick.
Because Alli’s focus was always on somebody else, we were so thrilled when she found her other half, Philip Amar, someone to dote on her. Deep into her cancer treatment, Philip did not consider this as a deterrent – nine months later he proposed to her in the presence of her ailing grandmother. Alli became the first of her friends to be married. She was a beautiful bride, demonstrating a regal strength that made her a real Jewish princess. Married for just under two years, Phil gave Alli the undying love, exceptional support and normalcy she deserved, supporting her through a bone marrow transplant and other painful treatments.
As her friends’ lives progressed Alli’s battle with cancer continued. Instead of developing her career, Alli developed relationships. Her special relationship with Dr. Armand Keating, Head of Haematology at Princess Margaret Hospital, was second to none. Alli taught Dr. Keating what true strength and courage was from a young adult’s perspective: cancer was a process and the only option was to always hang in. These relationships guided Alli to the next phase of her life. Realizing that there was so little support available for young adult cancer patients, she began her most everlasting journey – Alli’s Journey – a non-profit organization dedicated to raising funds for education, research and support for young adults, 18-35 with cancer. Its opening musical gala took place a little over a month before she died and found Alli on stage encouraging others to be a friend to the young adult cancer patient.
This past July 2006, Alli was the best of friends for the last time, walking down the aisle of her childhood friend’s wedding, smiling for pictures and toasting the happy couple. Six days later, with her family and friends by her side, Alli succumbed to this devastating disease. Her funeral was packed with family, friends, teachers, and doctors, some of whom she had not seen in years. Her touch was enduring. Her spirit will always live on, and she will continue to give hugs and support to other young people through Alli’s Journey.
