2007 Halifax Information Day
Many Faces of Brain Tumours: A Personal Story by Vero Martinez-Ennett
September 3rd, 2006 was the day in which I experienced all the emotions a human can feel. First was the anxiety, the sensation that something was wrong and the need to go to the hospital. Then at the E.R I went from boredom to anger to frustration and after 8 ½ hours in the waiting room, I experienced a huge sense of relief and a great happiness when it was finally our turn to see a doctor.
That short moment of happiness was quickly followed by fear, disbelief and nonconformity. I felt like a little girl afraid and alone in a dark room and I wanted my mommy.
My mom, who is a very strong and wise woman, said to me: “Vero, imagine that a horrible, smelly and rude person named Cancer just moved into your life, and whatever you do, wherever you go, he is going to be there: In the grocery store, in the car, when you go to bed, when you wake up, all the time he is going to be there. Tell me now; what are you going to do? Are you going to just sit there and be afraid of him or are you going to take his hand and walk with him?
I have never liked strong smells, so I took our new “guest’s” Cancer hand, took him into the shower, gave him a good scrub, combed his hair, put new clothes on him and started walking with him. It has not been an easy walk and many many times I felt lost. What my mom did not mention was that Cancer never comes alone…he always comes with a partner called “Hope.” It was her, Hope, who took me, more than once, to the shower and changed my clothes; it was she who showed me the way. It was Hope who also introduced us to her friend “Humour.” Humour is great, and he has helped to lighten and brighten the way. He is a fantastic companion, even though I still don’t understand some of his ideas when he teams up with my husband.
Our life with these three guests has been interesting. We have had our share of losing and our share of gains. We have lost, besides my husband’s hair, the feeling of “I am invincible and untouchable.” We have gained the ability to enjoy every moment, to make fun of it, to live here and now but keeping an eye on the future. We have learned that without a will there is no way.
Before I finish, I want to honour all of you living with a brain tumour, honour your fight, your courage. I especially want to honour all the caregivers. In moments of doubt, stay strong, trust yourself; trust your doctors, your pharmacists, your nurses and social workers. When you feel weak and think you cannot keep going remember that you are the rock that supports the hero. We caregivers also have a brain tumour, but carry it in our hearts and in our souls.
Cancer never knocks at the door, he just shows up and makes himself at home, but Hope and Humour require an invitation. They are outside your door waiting for you to invite them in. Open the door to them, welcome them, and together with our three guests, let’s imagine a cure and fight for a cure.
Thank you,
Vero Martinez-Ennett
Our "Victorious Warrior"
Nicole was a very active three year old who enjoyed skiing, skating, dance,gymnastics and swimming. She was learning her alphabet and loved to write.
But in the Spring, things changed for Nicole - and our whole family. We noticed that one side of Nicole's face was paralysed and that her smile was not symmetrical. Every morning she was nauseous, and often felt dizzy. At first, we thought it was just the flu, but Nicole's dizzy spells got worse.
At the hospital CT and MRI scans revealed that Nicole had a cancerous brain tumour. As any parent could imagine, the emotional ride was terrifying. Nicole endured nearly 16 hours of surgery but the surgeon's weren't able to remove all of her tumour. We were warned that a small piece attached to the brain stem would likely cause severe motor dysfunction.
For Nicole this would prove to be as difficult to overcome as the cancer treatments. I recall back to when we named her Nicole Victoria which means "victorious warrior". I thought if there is anything in a name, I'll take it.
Nicole's little body was traumatized by the surgery and she stayed in the hospital for five months. She had two huge mountains to overcome - cancer and relearning basic functions like walking and talking. Our doctor and his team at the cancer centre were compassionate and positive in their support. Nicole went through two more surgeries and began chemotherapy that Fall.
Four years later, Nicole is looking forward to grade two and is keen to learn to read. She still struggles but uses a walker very well. She likes her "cool" pink and purple hearing aids which help compensate for hearing loss. Her speech articulation, although slow, has improved tremendously.
She is currently recovering from her second eye surgery to straighten her eyes and she'll begin hormone replacement therapy soon. Nicole is now seven. She has a great sense of humour and makes all of her friends smile. She loves being active, so we look to the Brain Tumour Foundation of Canada to fill up our calendar with exciting BrainWAVE events.
As a parent, the daily struggles we face would be so much more difficult without this amazing organization! She has had challenges forced upon her in spades but will always be our little "victorious warrior"!
A Unique Board Member and a Unique Gift
Dr. Joseph Megyesi, Neurosurgeon at London Health Sciences Centre, joined the Board of the Brain Tumour Foundation of Canada in 2002 and has accepted the position of Vice Chair of the Board. After Dr. Megyesi joined the Board we learned that he was an avid hiker, most often in wilderness areas, throughout the world.
In May, Dr. Megyesi made a unique gift to Brain Tumour Foundation of Canada pledging 10 cents for each meter he climbed up Mt. Kilimanjaro and $10 for every mile that he hiked to Lake Te Anau in New Zealand.
Thank you Dr. Megyesi for all your hard work on the Board and your creative giving.
Our Story - Journey of Hope & Healing
Pia Di Bacco raises funds and awareness
Pia Di Bacco has always considered herself to be blessed. Living in Montreal, she and husband, Tony, raised two children. She works at a school daycare, half days now, and loves working with young children. She has always given back to the community.
One day her life, and that of her family, changed forever when Tony was diagnosed with a brain tumour - glioblastoma multiforme. Pia began researching to find out as much as she could about brain tumours.
Tony underwent surgery, chemotherapy, radiation, clinical trial and was put on a regimen of drugs. The prognosis was not positive. But Pia’s unwavering optimism was the very thing Tony and their family needed in the face of this devastating disease. Her Internet search words changed to 'Brain Tumour Survivors.'
Pia then found Brain Tumour Foundation of Canada's website and read about the ‘Imagine a Cure’ bracelets, being sold to support brain tumour research and raise awareness.
"These grey bracelets would now play a significant role in our journey of hope and healing and our goal in raising awareness for brain tumours," says Pia.
She called Brain Tumour Foundation of Canada, asking if they had children's size bilingual bracelets. When she heard that they were not available she took it upon herself to make it happen. "She called me back within 20 minutes and said 'I've got the money'!" recalls Ben Seewald, who looks after fundraising and special events at Brain Tumour Foundation of Canada.
Through family, relatives, co-workers, friends, churches and workplaces, she sold about 5,000 children and adults' grey bracelets with the message 'L’Espoir d’une Guerison', raising over $10,000. "That is 5,000 more people talking to 5,000 more people and so on about brain tumours . Now that’s what creating awareness is all about," says Pia.
Pia through the Di Bacco and Falconi families, with relatives and friends, have also raised $3,500 towards the French translation of A friend in Hope children's storybook. Pia had her teacher friends edited the storybook to be sure the French translation was appropriate for young readers.
"Pia is a volunteer and donor that goes above and beyond to raise awareness and brings gifts to the Foundation, " says Susan Marshall, Executive Director of Brain Tumour Foundation of Canada. "She has an infectious enthusiasm that is a real gift to our organization."
For information about becoming a volunteer at Brain Tumour Foundation of Canada, e-mail jmcintosh@braintumour.ca. For information on donating to Brain Tumour Foundation of Canada, e-mail srelecom@braintumour.ca.
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À 2003 Brain Tumour Foundation of Canada 1.800.265.5106
Charitable Registration #BN118816339RR0001 |