A survivors story of paying it forward

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When people ask me to be a speaker, I never know what to talk about. Should I talk about me?  My illness?  My recovery?  My transplant?  OneMatch? Or, my mission in life?  Do I talk about people who have inspired me?  The people I have met and lost along my journey?  Or, do I talk about my donor and the selfless act they performed to give me life?  I’ve decided to tell you my whole story.

My name is Shari Ichelson Silverman. I am a single mother and grew up healthy and happy. In 2009, my daughter, who was 10 at the time, and I moved into our new condo. We were excited to explore our new neighborhood. Meet new people. Decorate and have dinner parties with friends and family.

A week after we moved in, I started developing headaches. I would go through a bottle of advil a day, with no relief.  I would wake up with black eyes and a bloody nose. My mouth would bleed. At first, I thought it was just stress from the new changes in my life. I went  to the doctors everyday hoping they could tell me what was wrong.  One doctor thought I was pregnant.  Another thought it was allergies. One thought I had a sinus infection. Sadly, none of those doctors knew what was really wrong with me.

On Saturday July 4, I collapsed at home. Thankfully, my daughter was home and called 911.  I was rushed to York Central Hospital, where the doctors drew blood and hydrated me. They told my family that I had a kidney infection that was so bad it had affected my other organs. They gave me antibiotics and sent me home. I thought this would be the end of me feeling so sick.  We now knew what the problem was and I had the antibiotics to make me better, or so we thought.

The following Monday I got a phone call around 4pm.  It was the ER doctor that I had seen on Saturday night.  He told me he needed to see me before 6pm that evening and to come over right away.  I found it odd that the ER doctor called and not a nurse, but nonetheless, went to the hospital with my mom. What the doctor was about to tell me, would change my life.  I had Leukemia.

At that point, I didn’t know much about Leukemia. We knew it was a cancer. But that was about it. Now, unfortunately, we are walking encyclopedias. On July 7, 2009, I was officially diagnosed with Acute Myeloid Leukemia at Princess Margret Hospital. As I entered the revolving doors of the hospital I left my old life behind me, and entered a new stage. Life as I knew it would never be the same again.

Princess Margaret became a home to me. I was admitted on July 10 for my first round of chemotherapy and stayed there until August 12. The code blue team responded to me twice.

In October 2009, in between my second and third round of chemo, and in between stomach and liver infections, my doctor, Dr. Schuh, advised my family and I that the only chance for me to beat my leukemia was to have a bone marrow transplant. Again, something we knew nothing about.

Once again, life with me just having Leukemia had changed.  This was a whole new ball game.  And none of us wanted to play. My family was told that 70 per cent of the time, family members were not matches. That meant both my brothers had only a 30% chance to save my life. Sadly, neither were a match for me. We would have to search the national registry to find me my gift of life.

My family was thrown into overdrive. The helplessness they felt was unbearable.  One night, in the hospital, I spoke with my dad.  I told him he had to find me and all the other Canadians a match.  If I didn’t live, this would be my legacy.  In that moment, Shari’s Mission was born.

Shari’s Mission is a community partner of OneMatch. Our goal is to get as many people as we can on the OneMatch Stem Cell and Marrow Network, and help save the hundreds of thousands of people around the world who are in desperate need of a stem cell/bone marrow transplant. To date, we have added over 16,000 people.

Searching for a match is like looking for the proverbial needle in a haystack.  It is more likely you will win the lotto then be a match for someone. Imagine that!  Everybody who is reading this, has a better chance of winning the lottery than saving someones life! That is a scary statistic! The OneMatch Stem Cell and Marrow Network has roughly 300,000 Canadians on its registry. Imagine if all 33,739,900 of us got swabbed?  The ability to save someone’s life is so simple and yet our registry does not reflect the enormous amount of diverse individuals we have in Canada. If every Canadian registered to be on the OneMatch Stem Cell and Marrow Network, imagine how many people we could save?

Waiting for a match was horrific! All I wanted was to hear those four little words “you have a match”.  Every time the phone rang, I was thrown into a panic. Could this be the call that would change my life? That would allow me to live? Or, would I still have to live on pins and needles and wonder about that what ifs?  What if I die?  Who will teach my daughter everything she needs to know in life that only a mother can teach?  Who will watch my parents and make sure they are ok? Who will be there to support my brothers, knowing they couldn’t save their only sister?  Who would watch my family?  How would they survive if I didn’t?

On February 14, 1010, I announced to friends and family that a match was found. The tears of joy and relief were evident on everybody’s face. The search was over for me, but unfortunately hundreds of Canadians were and are still searching. Hundreds of thousands around the world.  To this day, my family and I run events across the country to help add new donors onto the registry.  Imagine if you were to register today?  You could save someone in 20 years from now who has not even been born yet!  What a wonderful gift to give to someone!

On March 11, 2010, I received my gift of life. Someone, somewhere, went to a bone marrow drive, got tested, and saved my life. Going through the chemo and radiation in preparation for the transplant was rough. It takes a toll on your body and mind. But it gave me life. A bag of bone marrow (it looks like blood) and 37 minutes later I’m alive and get a second chance at life. My stay at the hospital for my transplant was about a month long. You are admitted into the transplant ward, and from there start aggressive chemo and radiation. This chemo is the strongest type of chemo as you cannot recover from it.  You must get the transplant to survive.  You are also in isolation once the treatment begins. A cold, cough or sneezes are scary words to a patient and family members of a transplant patient.

Recovery has been long and hard.  I have met lots of people and lost just as many people along my journey.  I have attended more funerals in the past two years then anyone should in a lifetime. Out of all my friends I met along the way, I am the only survivor. Some got matches and transplants, some weren’t so lucky. I am learning to understand what my new ‘normal’ is.  I am learning to take things slower and that life as I knew it before I got sick is not the same as life after. My outlook on life has changed. My mission has changed. My goal is to get two million people on the OneMatch registry. People like you. Normal, everyday people. Your ability to donate is someone’s ability to live and put their mark on this world. Without you, people will and are dying!

In March, I celebrated my first birthday! Along with being immunized again, I had a huge birthday party at a kids party place where we all dressed up as things we liked as a child. How many people can say they have had two first birthdays?
I recently sent my donor my thank you letter. But, how do you say thank you to someone who saved your life that you have never met? For me, Shari’s Mission is my thank you. My way to pay it forward.

Every time I get sick, spike a fever or have a sniffle, it causes concern and another trip downtown.  But, I’m here, I’m alive!  I’m thriving!  I’m here to educate people on the importance of getting swabbed and to help save lives.  Remember my story, and think of how easy it is to potentially save a life!  Get swabbed!

To date several hospitals have held swab events and the numbers are in:
North York General Hospital – 526 (over 4 days)
Scarborough Hospital – 229
Princess Margaret Hospital – 58
Sunnybrook Hospital – 300 (over 2 days)

If you are interested in holding a swab event at your facility please visit www.sharismission.com