Ambassadors

Ashley’s protocol is for 25 months. She has experienced some delays due to low blood counts and is currently in week 47 (June 9, 2009) of her protocol. She has chemo intravenously every 3 weeks and takes several chemo agents by mouth. Throughout her journey so far she has handled all the obstacles in her path like a trooper. She has not been extremely ill from the chemotherapy or radiation and tries to live life as normally as possible under the circumstances.

Ashley is back to training with her soccer team and has started playing soccer again. She currently is finishing Grade 11 online and working part-time.  She is looking forward to going back to school in August.

Ashley approaches everything now with a positive attitude. Her message to anyone suffering from cancer or any other life threatening illness would be the same. Keep a positive attitude and live life as normally as possible.  Push yourself if you have to. It’s not always easy but in the long run it will pay off.

To all the riders, sponsors and volunteers a huge thank you. It’s because of people like you and the funds raised that kids going through cancer treatment get the best possible care.

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The impact on Andy is obvious to the naked eye, not so obvious though are the scars on the rest of the family. Whether it is disappointment of leaving a successful career or the financial impact becoming a one income family, parents learn to sleep with one eye open, and downsize their own dreams. Siblings try to make themselves perfect to cause no extra stress on a family, they rarely ask for time, events or money for themselves. Of course living like this for so long is impossible without cracks…tears, worries, panic attacks, stress related illnesses, depression. Families with a child with cancer live with all this and more. Andy’s family has, but they have also learned to cherish the smiles and laughs and they continue to dream.

As for Andy, he and his dog guide Boston, attend grade 11 in Oakville, Ont. On the weekends Andy works flipping burgers at the local McDonalds and spends about 1.5 hours a day cycling. He’s in training for the SNKCR. Andy is a national rider and with the help of other riders, Andy will be riding across Canada this June on a tandem bike. 19 days or 456 hours he’s looking forward to.

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Even as a four year old, I knew that afternoon would forever shape my family’s life. Andy was rushed to Sick Kids Hospital and once there my parents were told that Andy had two malignant unrelated tumours in his brain. He was expected to live another two week, unless brain surgery with an 80% fatality rate was done in the next few days. To my parents there was either death, or almost certain death.

Andy had the surgery, followed by months of adult radiation treatment, paralysis, seizures, and strokes. Even though Andy slept at home, he would leave with my mom before I woke up in the morning and came home after I went to bed. I grew up fast those months. I made sure that I was the most perfect child, following every rule and every expectation. I can remember being in kindergarten and crying because I had not answered a question correctly in class, feeling as though I had let my family down. For every stress the cancer had brought my parents, I tried to make up for it.

The day Andy was diagnosed was the day I lost my best friend. All the giggles and charisma Andy was once filled with had been sucked out of him by the disease which tried to take his life. Other kids were afraid of us, believing that by talking to us they would somehow catch cancer. And while I pretended that I didn’t care, and that I never heard the whispers of, “That’s the girl whose brother is dying of cancer”, I did hear them and when no one was looking I did cry. Every time I tried to forget, someone would always be there to remind me.

When I went to junior high school, keeping friendships became harder every day. Relating to my friends about the worries of boys and dances seemed stupid in light of Andy’s health. Pretending like my family was normal got harder as Andy became more special needs. I desperately envied every other kid who had seemed to have a carefree life, jealous of them having a life that wasn’t centralized upon hospitals and medicine and doctors.

Yet just like the day that Andy was diagnosed turned my family’s life upside down, the same happened over ten years later. After a decade of fighting two brain tumours, Andy was finally declared in remission when I was 14 years old. The ugly disease which had forced my family down a path we did not want to take was finally gone.

Coast to Coast Against Cancer has given me back the brother that cancer had taken away from me. After becoming involved with this organization, Andy smiles and laughs as much as he can. The practical jokes that once left our lives have returned and since then I have sat on tons of whoopee cushions only to hear laughs from the other room and a “Gotcha!”.  I can never thank Coast to Coast enough for giving me the life I missed so much over the last fourteen years.

I am eighteen years old now, and this September I am off to university. I don’t know where my life will take me and where I will be in ten years but I know that Andy will always be there. I am not going to pretend that our lives are prefect and that Andy was never sick. The cancer has taken Andy’s sight and left him epileptic, but we all live the lives we are dealt. I now make sure that cancer is not my whole life, but just a part of it. Even though childhood cancer has taken so much from my family, we are making sure it never will do that again. I am just like every other eighteen year old girl, counting down the days until graduation and freaking out about prom dresses.

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I am blessed with parents that listen to my dreams and help me act on them. I have wonderful family and friends that support me in everything I do. A school and community that is not afraid to get involved and make a difference no matter how much work it takes.

I would like to thank my family, friends, Teachers and the community of Barrie for changing the future of childhood cancer forever.

I am very honoured to be an Ambassador for Coast to Coast Against Cancer.

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By 3am more blood work had been completed and confirmed suspicions. Once Megan was moved to the Pediatric floor and made comfortable we started the first of many, many blood transfusions. Much of that morning is still a blur, all we know is we learned very quickly that Megan had AML and that luckily it hadn’t spread to her brain. One number that we’ll never forget is 50, at that point she was only given a 50% chance to live.

Chemotherapy began the next morning. We had no idea how Meg was going to tolerate the different drugs; all we could do was sit and wait while poisons were being pumped into our baby girls’ body and hope and pray the effects wouldn’t be severe. Megan lost her hair about 2 weeks into treatment. It wasn’t as traumatic for her as we feared, she like it when people told her how soft her head was. We should all be so lucky to be so beautiful without hair. The first round of therapy was the hardest; it was also the longest at 10 days. The pain Megan was in was very surprising for us. We were told the pain was the white cells coming out of her body. She also experienced intestinal pain that would make her double over. It was really hard to see her this way, our oldest daughter usually found a friend to play with outside of the house so she didn’t have to be around.

We knew that Megan’s protocol was going to last 20 weeks and could plan around her inpatient treatment schedules very easily, what we couldn’t plan on were the “other” hospital stays. A word that became very commonplace was neutrapenic. As we progressed through treatment it took longer and longer for Meg’s immune system to rebound and by July we started spending time in the hospital between treatments for infections. The isolation of cancer was very hard to handle for all of us. Our other children couldn’t have friends over to play, family and friends couldn’t come to visit and Megan had to miss the end of junior kindergarten and the first half of senior.

Megan was done treatment on September 14, 2008 and although we know she had been in remission for 4 months there would be no guarantees, it felt like a huge weight had been lifted off our shoulders. Being done meant no more hospital stays, healing, returning to school and a much needed vacation. But there were other things to overcome. About a week later Megan was drawing with chalk in the driveway, like all 4 year olds do, and scratched her ankle. It was the size of a pinprick, but it had major complications. The next day she was admitted with a fever which turned out to be an infection but while she was being treated for 10 days on IV antibiotics for that the little pinprick scratch turned into 2 fungal infections. That night we were waiting in the OR waiting room for the surgeon to complete a biopsy. This was going to leave our little girl who was done her chemo and supposed to be on her way to healing and becoming “normal’ again with what looked like a volcano on her ankle. This was extremely risky because Megan wasn’t producing any white blood cells and we didn’t know when or if the hole in her ankle would heal. We were now an inpatient for another 4 weeks and for 4 more after that with daily drugs being administered by a homecare provider at home.

Megan finished her antifungal medication at the end of November and again she was able to start healing. Christmas was coming and we felt we had been given the best gift in the world. At more than one point over the last 8 months there were times when we didn’t know if she would be able to celebrate with us, but reality was she was there, strong, and healthy, celebrating with her grandparents, aunts and uncles, cousins and her sisters.

Today Megan is finishing Senior Kindergarten and is really looking forward to grade 1. We still make monthly visits to the Cancer Centre and panic every time we see a bruise that can’t be easily explained but we have learned so much and met so many terrific people. We have learned so much about our daughter; she is my hero. I never thought that anyone, let alone a 4 year old could handle so many drugs coursing through their body, not get sick, make jokes, worry about how I’m feeling, play with the nurses and volunteers and most of all stay positive.

There are so many people that have helped us along the way that we could never repay in a lifetime; it really does take a village, especially under special circumstances, to raise a family. We have also had the opportunity to meet many other children and their families who are going through similar experiences and whom are extremely appreciative all your sacrifices and dedication.

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She learned to sit, stand and walk again over a number of months. Alicia completed the chemotherapy treatments in November 2001 and went into a “wait and watch “ schedule of regular MRI’s. During this time we got Alicia into the pool to increase her physical strength in a safe environment. On land she still would fall down or crash into things every 20 steps or so. She became so strong in the water that we put her on a competitive swim team! In October of 2003 a routine MRI showed that the tumor "spots" had increased in size and were progressing toward the brainstem. Since we had already tried surgery and chemo we were told that the best option was to try radiation. Alicia started her thirty day - daily radiation treatments at the beginning of Nov 2003. Unfortunately she suffered a massive brain hemorrhage after the second day of radiation. It seems that the new tumor growth was very vascular and that it had blown out. Once again we put her life in the hands of a wonderful pediatric neurosurgeon. Dr H. was very blunt, and told us to gather the family. The worry was that when he relieved the pressure in her brain she would bleed out. We got our blessing and although Alicia recovered from the hemorrhage and surgery quite quickly, her new journey would not be a 'typical ' one. After the surgery she developed bacterial meningitis and needed to stay in hospital for another 2.5 weeks for treatment. Once again we took Alicia home unable to walk/balance unaided. Our little fighter was determined to get back into her active life so she went back to school the day after she was discharged from hospital using a borrowed pediatric walker! It wasn’t until March of 2005 that the scans showed the tumor had begun to respond to the radiation and there was some reduction in size. Since that scan more wonderful news - all scans have shown no change in the residual tumor.

During that time Alicia continued to amaze us with her determination and positive attitude. Her doctors say they don’t understand how she can even walk never mind participate in competitive athletics. Swim team accomplishments gave her such a rush that she asked permission to do triathlons. During her first few races we physically held her up during transitions, she rode a two wheeled bike with training wheels – while we ran beside her and then held her up again on the run. During her second season she had improved so much that we had to get volunteer University runners to run beside her bike and she started to run for little sections on her own. By the end of that second season it was obvious she needed something different – so we started our search for a recumbent trike. The Challenged Athletes Foundation out of California helped us purchase a BEAUTIFUL custom recumbent trike from Whizwheels in Michigan. In her first season with the new trike she doubled her average speed. Her races have doubled in size to a maximum 200 m swim 12 km bike and 2km run. Alicia, just turned 10 - brain tumor survivor now cruises at an average speed of 20 km/hr !

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Adam’s second love is music. At the age of ten he picked up the electric guitar and, just like his hockey stick, had difficulty putting it down. He gathered up other musically inclined friends and together they formed the AC/DC tribute band, Tantrum. Tantrum has played all over Simcoe County and has been asked to return to many venues because of their charisma on stage. Adam, also known as “Angus,” has imitated this famous guitarist flawlessly.

In April 2007 Adam competed against many young, talented boys to land a spot in the second round of tryouts for a AAA hockey team. En route to the tryouts, Adam’s doctor advised him not to lace-up his skates.

Adam had recently undergone blood work during a visit to the emergency room at his local hospital to investigate the cause of dark purple bruising on his legs and back. The results showed that Adam had a very low blood platelet count, meaning a contact sport like hockey could cause him to bleed internally.

After two weeks with this diagnoses, doctors spotted “blast” cells on Adam’s scans. On May 4, 2007, Adam was sent to The Hospital for Sick Children, where he was diagnosed with High Risk Acute Lymphoblastic Leukemia, the most common form of childhood cancer.

Adam began an intense eight-month protocol of treatments, including oral medication, muscular injections, countless blood transfusions, hundreds of needle pokes, lumbar punctures and chemotherapy. Throughout the process, he reacted poorly in his medication and endured infections, severe mouth sores, toxicities to drugs and even surgery to remove his appendix. Adam also had to endure the exhausting 200 kilometre roundtrip drive to the hospital four to five times a week, while also enduring eight admissions due to complications.

Adam’s life, along with his family, has been forever changed. To be faced with the uncertainty of this life-threatening illness and for Adam at the tender age of 13 to give up everything he loves in life has been very challenging emotionally. However, Adam has been courageous every single day as he endured losing his hair, suffered for weeks in the hospital with endless infections, lived through countless side effects from brutal chemo and witnessed hospital friends helplessly slip away from cancer their bodies could not fight any longer. Through it all, he has always asked questions, remained in control, focused and determined.

Currently, Adam has finished the intense portion of his protocol. He will continue to receive IV and oral chemotherapy for the next three years and also continue spinal taps and blood transfusions. Thankfully, with the love and support from organizations like the Tour for Kids he has a newfound understanding for others that have endured such obstacles in their life. He has become an active philanthropist helping to raise money for the three cancer camps for kids located across Ontario whose lives have also been disrupted by cancer.

He hopes that through his fight the awareness of childhood cancer will become widespread and that people will understand the importance for continued research and the necessity for children afflicted with this disease experience some joy that camp can bring to their lives. Adam will be starting high school this coming fall. His focus is on science. In other words, his mission is very clear, that he hopes to someday see a cure for childhood cancer.

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As a result of the side-effects of the chemotherapy Peter had to sacrifice much especially in the first year: a large amount of school, a summer of soccer, activities with his friends, limited hockey and, most important to him, playing with his younger brother David.

Now approaching his second anniversary of diagnosis, one would be hard-pressed to identify Peter as having to deal with this disease. Though Peter doesn’t miss nearly as much school as he did before, he continues to miss up to a week of school per month due to the treatment and side effects. Despite all this he remains an honours student while also taking part in a gifted program. He is looking forward to this spring’s upcoming graduation and moving on to high school. Peter enjoys countless extra-curricular activities including soccer, hockey, chess and volleyball. This summer, he will have his first real ‘paying’ job as a referee for soccer games. He enjoys playing guitar and is always learning a new tune. Best of all: he’s back to playing full-tilt with David.

Peter also plays an active role in his community: he is an alter server at his church every week and is also an active Scout member. Like his father, he’s developed a love for cycling. Last year he managed to take part in some of the Tour for Kids. This year, he plans on doing the 2 day Ontario Tour for Kids, where he will raise his own funds to assist with Ontario cancer camps. He is already incredibly excited about it.

Peter has a tremendous attitude and always manages to see humour in things. Like the Latin translation of his name, he remains a ‘rock’ in the face of adversity. He has had, and continues to have, terrific support through family, friends and community, which he really appreciates in every way.

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My toughest challenge with childhood cancer: My toughest challenge was not being able to go home, see my friends and train for sports. I missed these things terribly. I just wanted to live a normal life. Describe some great things that have come about through your journey of childhood cancer. The Hospital for Sick Kids learned new techniques to do spleen operations on extra large spleens. One surgeon told me that they had saved another child’s life because of what they learned from me. It took the doctors 21 months to diagnose my type of cancer. It had never been diagnosed at Sick Kids before. Now they can diagnose my type of lymphoma in a week or two because they know what to look for. I expect this is saving lives.

Describe your Best Day: My best day was when I represented the Sick Kids Foundation at my school. It was last June. I had not been out of Sick Kids or eaten a meal since January. The nurses rearranged my medication so I could leave for a few hours. My Mom, my Dad and my godmother drove me to Shelburne. An injured athlete from the school lent me his wheelchair even though he didn’t know me.

First I did an interview with a local paper and “A” channel TV. Then I waited while the gym filled up with kids who had been raising money for cancer. The teacher got everyone worked up to a fever pitch with enthusiasm for what they were doing. Then he announced that they had a surprise speaker and started to introduce me. The he said that I could explain my situation myself and said “Melodina, come up here”. I got out of my wheelchair and with a cane in one hand and my Dad on the other arm, I slowly made my way to the stage, up the stairs and across the stage to the microphone. The kids were yelling and screaming. I felt like a rock star. I got a very loud standing ovation. I thanked them for their efforts and assured them it was important. The kids at my school had raised many thousands of dollars for cancer. They gave me a check for $5,000.00 for Sick Kids and the rest went to the local Cancer ward at Headwaters Hospital. I was happy; the kids were happy; the teachers were happy; my parents were happy. It was a wonderful day.

Tell us about your Worst Day: I don’t remember my worst day. I had a virus in my spine and brain fluid. I was completely out of it. My father was very scared. The worst day I remember was just after I received several days of Chemo and six whole body radiation treatments and I had no immune system left. It was February 6th. My Bone Marrow Stem Cell Transplant was to be the next day. The hospital would not let my parents stay in the room with me. I was alone. I knew I might die. I wasn’t afraid of dying; I was never afraid of dying. That night I was afraid of dying alone. It was the only time I remember being truly afraid during my three years of illness. I called my sister, Harmony in the middle of the night. She helped me through that most difficult night.

Tell us what Coast to Coast Against Cancer means to me: I met several of the National Riders last year when my father rode in with them to Sick Kids in Toronto. I was in my wheelchair and my mother wheeled me over to the community event. I had to wear a mask to protect myself and I was too weak to walk. At the community event I met the president of Sears Canada. He asked me to ride with him this year. My plan was to be strong enough to ride in a regional ride with him and my father this year. Because of this the Sear National Kids Cancer Ride helped me focus my goals and helped give me courage to find my strength over the last months of my life. I also dedicated myself to raising funds and encouraging others to raise funds for childhood cancer research. My hope is that events like the Sears National Kids Cancer Ride will lead to a future where no children have to suffer what I suffered and what I saw others go through.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: My watchwords are “Strength” and Courage”. We will win this battle as long as we all continue to fight it together. The children need you. They are inspired and borrow strength and courage from your efforts. Thank you.

Share with us any other personal thoughts: “I am grateful I got cancer, I am truly grateful. I could never have know how strong I could be without cancer.”

The following are from a speech Melodina gave last November.

"Without the outstanding people sitting in front of me today, this would not be possible. The funds that you provide the foundation allow it, and because of this we can touch so many. My father cycled in the Sears Kid’s Cancer Ride fundraiser, people we barely know, and even some people we’ve never met, through our friends, were donating funds that can make patient life better. Doctor Sheila Weitzman of Oncology and Haematology was able to diagnose my cancer, of which I am one of the first seventy five documented cases, was able to come up with the diagnosis because of the funds donated for research. We should be extremely thankful that these donations give us the funds to have some of the top researchers in the world and keep them to keep improving patient life… “All of you have been touched by Sick Kids, whether through the perspective of a patient, a parent, a friend, a family member or some other way… "Remember, “Impossibility is nothing, but nothing is impossible.” Without your donations we would not be where we are today. From the bottom of my heart, and the hearts of many other children and their families, thank you. You truly are extraordinary individuals."

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Type of cancer that has affected me or my family: Retinoblastoma

Number of years on treatment: 3

Number of celebrated years off treatment: 7

My toughest challenge with childhood cancer: I had to wear a patch on my good eye for 7 years to make the other eye work harder.

Describe some great things that have come about through your journey of childhood cancer: I was in a book because I was the first baby in the world to be tested for Retinoblastoma before I was born. My Dad is cycling across Canada because of me!

Describe your Best Day: My best day was when I went zip-lining in Costa Rica.

Tell us about your Worst Day: My worst day was when my cat, Turtle, died.

Tell us what Coast to Coast Against Cancer means to me

Coast to Coast Against Cancer makes me feel special because they are trying to help kids that have cancer and I had cancer too.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians

We can all help with kids’ cancer in some way. Thanks for helping! Great job!

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Type of cancer that has affected me or my family: Retinoblastoma

Number of years on treatment: 3

Number of celebrated years off treatment: 9

Number of months or years: Bereaved

My toughest challenge with childhood cancer: My parents tell me that Chemo days were tough when I was a baby, but I don’t remember that. Now my toughest challenge is that I have a slight depth perception problem because I only have one eye.

Describe some great things that have come about through your journey of childhood cancer. Living!!! Being a cancer survivor is great because it makes me feel like I beat cancer and I can tell other people that have cancer that they can do it too.

Describe your Best Day Swimming with the dolphins in Cuba.

Tell us about your Worst Day: When I was 5 days old, on my second day of chemotherapy, my kidneys shut down and I almost died. Thankfully the doctors knew what to do and saved me!

Tell us what Coast to Coast Against Cancer means to me: I’m so glad that Coast to Coast Against Cancer is doing something about kids’ cancers. Kids deserve to live a long life and have fun.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: I want everyone to know that cancer can be beaten. My Dad who is totally blind because of cancer is going to ride on a tandem with his friend Carl to raise money for kids’ cancer. Thank you for supporting this important cause!

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My toughest challenge with childhood cancer: Being away from my 1 year younger sister Emely when mommy and I have to stay in the hospital, and as well time away from school when we are at the hospital. In the beginning we would be in the hospital for weeks at a time, now we go about 8 days per month as long as everything goes well. Also, my port does not give blood return so that means every time they need blood work done, which can be quite a few every day sometimes, I have to get a needle poke.

Describe some great things that have come about through your journey of childhood cancer: My mom and I have been helping out with fundraising for various different groups that have been here for us through this journey – Childcan, Brain Tumour Foundation, Pediatric Cancer Research through the Canadian Cancer Society and of course the Sears National Coast to Coast Kids Cancer Ride. We want to be able to help out other kids. As well, so many people have told me that I am their hero and very brave and positive.

Describe your Best Day: My best day is when I am well enough to be able to attend school and be with all my school friends and my younger sister for the day.

Tell us about your Worst Day: My worst day was in the beginning before I was diagnosed. I had very painful headaches and my head felt like it was going to explode. As well, I don’t like the GFR Kidney Function test as I need to have 4-5 needle pokes just for that test.

Tell us what Coast to Coast Against Cancer means to me: I really want to be an Ambassador for the Coast to Coast Against Cancer Ride because I want to show other kids that there is hope, and I want to be able to spread the word about pediatric cancer and help to fundraise for more research to find a cure and help out other families who find themselves in a similar situation.

My Message to Canadians: If you have a positive, brave and trusting attitude it will go very far for you, not only if you have a cancer battle, but anything that you do in your life.

Share with us any other personal thoughts: Yes, this has been a very difficult journey that I wish that my entire family and I did not have to go on, but we must be as strong, brave and positive as we can. We have had a lot of very rough months where I was hospitalized for weeks at a time and I know that all my loved ones were scared, but through it all I have trusted in Jesus to help keep me brave and strong. Now months later I am actually able to attend school and am able to walk again too. I want to say thank you so very much for all my loving family members, my school friends and other friends, as well as our community. Everyone has shown us such love, caring, support and kindness. Thank you!!!

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My toughest challenge with childhood cancer: Not knowing if I was going to survive.

Describe some great things that have come about through your journey of childhood cancer: I have had the pleasure of meeting the best doctors, nurses and scientists on the planet. I would not be the same person today if I had not had cancer Just being able to know what it is like to have cancer and being able to fight for other children and their families.

Describe your Best Day: My best day would have to be having the opportunity to give back to the hospital that saved my life.

Tell us about your Worst Day: Every day is my worst day, having to watch children fight for their lives and end up not winning their own battle.

Tell us what Coast to Coast Against Cancer means to me: Plain and simple, this is a group of people who have stood up to make a difference in the lives of children and families with cancer in hope that one day we can have all children healthy.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: As a former child with cancer, I want to thank every volunteer, nurse, support staff, and family for saving my life.

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My toughest challenge with childhood cancer: Learning to live with the unknown. No definite prognosis

Describe some great things that have come about through your journey of childhood cancer: Jesse runs, jumps, plays, swims, skates, colors, and enjoys life to the fullest each and everyday. We are so proud of him and also of his wonderful and supportive big brother Jett.

Describe your Best Day: Jesse coming home from the hospital for good

Tell us about your Worst Day: Jesse clinging to life at age 2 following multiple surgeries...

Tell us what Coast to Coast Against Cancer means to me: CTCACF supports Oncology hospitals, cancer research and support programs for families just like ours. I don’t know how we would have made it through our difficult times without such infrastructure in place. Through awareness and fundraising CTCACF truly makes a difference for those living with and beyond childhood cancer in this great country of ours.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians Riders: Never give up hope no matter what the obstacle may be. Together we will make a difference and we can beat this devastating disease.

Good luck to all the riders, volunteers and organizing body for all their efforts and support for such an important cause. God bless.

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My toughest challenge with childhood cancer: Not being able to do sports and other activities like normal children

Describe some great things that have come about through your journey of childhood cancer. Met lots of nice people, had lots of interesting opportunities I might not have had i.e. speaking in front of people, I don’t have to help do chores in the barn or move cows!

Describe your Best Day: When I get to go bowling with my class and then go to the Dollar store.

Tell us about your Worst Day: When it snows and is icy because I have more troubles seeing

Tell us what Coast to Coast Against Cancer means to me: Because it would bring more awareness and the more people who know about us, the better they can understand. Tell us what your message is to our riders, volunteers, sponsors and all Canadians You are doing a great thing helping children. You make us feel worthwhile when so many other people think we don’t matter.

Kathryn was diagnosed with a massive brain tumour in June 1997 at the age of 4. After over eight hours of surgery, she faced a long recuperation with many challenges. Ten months to the day of her first surgery, Kathryn had a second surgery to remove two additional tumours. Six weeks later, in a routine post-operative MRI, three more tumours were found. Kathryn underwent six weeks of radiation therapy to try to slow or stop the tumour's progression. As a result of her first tumour and surgery, Kathryn is legally blind. She has not let this challenge crush her creativity as she is an accomplished artist with five limited editions to her credit. Her paintings have sold around the world. Kathryn is an avid collector of ladybugs because in her words, "When you are blind and have a brain tumour, you need all the luck you can get and ladybugs are good luck."

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Describe some great things that have come about through your journey of childhood cancer: Even though Melodina was my younger sister by 11 years, she became (even more than she already was) someone I truly looked up to – someone to inspire me and someone I could hold up as an example to my kids. Her story was incredible before she had to contend with her illness (being a karate black belt, an internationally-ranked ski racer and an honour student), but her battle with cancer just made her story legendary in my eyes. As per Mel’s wishes, her Celebration of Life was a fundraiser for the Sick Kids Foundation and in that one day alone, through donations and a silent auction I organized, we raised over $10K. To date, we have raised just over $20K in Mel’s name for the Foundation specifically – more if you include the money donated in honour of Mel to events like Relay for Life (in which I participated this year on “Team Mel”) and the National Kids Cancer Ride.

Describe your Best Day: There are 3 days that stand out in my mind through my sister’s battle with cancer. The first was when she got out of the BMT unit on a day pass and we went to the nautical festival in Toronto. My sister gave me her old ipod (a hand-me-up, as it were) having just gotten a new one. As I watched her walk with her cane across the field to the bandstand, holding my daughter’s hand, I put the ipod earphones in and turned it on. The first song that began to play was Hallelujah by Rufus Wainwright. I’ll never know if she paused it at that track intentionally or not, but that memory of watching her fighting to walk, hand-in-hand with my daughter and having that song as the soundtrack is indelible in my memory.

The second day I remember well is one where again, Mel was on a day pass. She came to Kitchener to the swimming pool where she watched me and my son doing “Mommy and Baby Aquafit” followed by my daughter’s swimming lessons. Mel walked a lot that day (no small feat, given her fragile state at that time) and just had a generally good day. Finally, the best day was when Mel actually got to leave the hospital overnight (after being an inpatient for 9 months straight) and she came to stay at my new house. From her hospital bed, she helped choose this house and gave it her seal of approval. Her coming to stay, seemed to be like an official housewarming in the truest sense of the word (she would often stay with me on weekends when she was healthy and planned to live with me while she was at University). She was still weak and not feeling well, but she sat in my glider chair under a blanket and we talked for hours while I washed and put away dishes and organized my kitchen (and she made suggestions as to what should go in which drawer, for ease of access). It felt so amazing to just have that small amount of normalcy after all the trauma she had been through. It really felt like we would have normal again someday. Mel died only 2 months after that.

Tell us about your Worst Day: By far, it was January 10th, the day Mel passed away. I never truly believed she could be beaten by this disease (even after it happened)

Tell us what Coast to Coast Against Cancer means to me: Events such as CTCAC are essential for not only raising funds for, but also raising awareness of pediatric cancers. Even if we can make one person take a moment to think about the disease and make a donation, that could be the dollar that gets us to a cure. Section 5: My Message to Canadians Tell us what your message is to our riders, volunteers, sponsors and all Canadians Nobody should have to endure what my sister endured, especially a child. I keep thinking that if only we had had better or more advanced medicine to fight cancer, my sister may not have had to suffer as she did and may be alive today. This is why I feel so strongly about raising funds for cancer research, particularly for pediatric cancers. There are breakthroughs in medical research all the time, and I look forward to a day when treating childhood cancers will be something simple and painless. Share with us any other personal thoughts (250 words or less) My sister’s dream was to make an impact on this world. She was the most inspirational person I have ever known and every day I feel blessed to have been able to call her my sister for nearly 18 years. Melodina had hoped to participate in the 2014 Olympic games in Alpine Skiing. Although she never reached this goal, my family and I want to ensure that she continues to inspire and change the world through the incredible legacy she has left behind. We love you, Melodina!

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Describe your Best Day Christmas Day 2008 with my family: In the morning we opened gifts with my family, attended church and had a family feast. It was fun to see my cousin. In the evening we were admitted to SickKids for chemo because a bed became available. We were waiting several days for a bed to become available - what a great day! Tell us about your Worst Day: September 11, 2008 when Erica broke her leg. This led to the diagnosis of cancer and her journey with cancer began. Her treatment includes chemotherapy, a modified amputation and more chemotherapy along with rehabilitation.

Tell us what Coast to Coast Against Cancer means to me: Coast to Coast Against Cancer means raising awareness and education about childhood cancer. Cancer doesn’t discriminate against age! Cancer can affect children of all ages, from newborns to adulthood. Cancer affects the entire family, from the cancer survivor and their parents, friends, and families as they watch them through many challenges and triumphs.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: It was an ordinary day September 11, 2008. Summer had ended and the school year had just begun. Erica was at gymnastics club doing what she loved best – gymnastics. Erica was running toward the vault and heard a pop and a snap. She was brought to the local emergency department where an xray revealed an unusual fracture of her right femur. She was transferred to SickKids where more tests and a biopsy took place. Our worst nightmare possible was confirmed – Erica was diagnosed with Osteosarcoma. Her chemotherapy began quickly and she completed three months followed by a modified amputation in January. Her chemotherapy will continue until August 2009. In April Erica was fitted with a prosthetic leg and has extensive rehabilitation ahead of her. With Erica’s positive attitude, courage, strength and determination anything is possible. Erica will beat her cancer and walk with pride. With support and awareness together we can raise research dollars to help find cures for childhood cancers. As Erica Scarff said very well in December 2008: “You cannot change the past, you can only shape the future..”

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ALL is the most common childhood cancer, characterized by the production of a large number of white blood cells. These cells multiply quickly and take over normal blood cells, which can lead to bone marrow failure. If left undiagnosed or not caught in time, ALL is fatal. Fortunately, Madison was diagnosed and began her treatment protocol right away.

After spending two weeks in the hospital, Madison went home to continue her treatment as an outpatient. She visits SickKids on a regular basis while she continues her intense chemotherapy protocol. In April, Madison will begin her two-and-a-half-year maintenance period, still receiving chemotherapy and taking oral medication. Her family is relieved that she is in the capable hands of extremely knowledgeable, experienced and caring medical professionals.

Madison’s immune system is left weak from her treatment so she is unable to attend school regularly. Her condition has not affected her bubbly and cheerful personality, or more importantly, her determination.

She is currently taking voice lessons and learning to play the piano to prepare for her stage career. She envisions walking across a stage to receive a Tony award one day. For now, she is setting her sights locally and is hoping to audition for the Toronto production of the Sound of Music this summer.

Once in the maintenance period of her treatment, Madison can return to school full time and the things she loves. Ultimately, her goal is to return to the Stratford stage, where her company has been so supportive to her during this difficult time.

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Describe some great things that you have come about through your journey of childhood cancer: I’ve grown more confident of what I can do. Many doctors told me I was brave. I feel special whenever I return to Sick Kids hospital, seeing all the doctors and nurses that I became very close with (Finger-poke Conny and Violette.) ! I also often recognize how lucky I am to be here today, and I think of that whenever I feel upset about something. I also feel like I’ve bonded a lot more with my parents - they would take turns staying overnight with me in the hospital. I really love both my parents (Dave and Frances) for being there with me every moment of the way. I’m so lucky to have a brother and sister (Nick and Rose) who care about me.

Describe your Best Day: I have had many good days over the past ten years, but I remember one day specifically, when I returned to the hospital with my mom to get my one year check up. Once I had been examined and everything was normal, they told me that I had reached my ten year mark and I was officially cured. I was very happy that day, and I remember smiling and laughing the whole way home, back to my family.

Tell us about your Worst Day: I don’t remember much of the time I spent in the hospital, but I have heard much from stories, trying to picture what had really happened. I do remember when I was rushed to the hospital because I was so tired and I couldn’t stand up by myself. My mom rushed me in to the doctor’s office and they found out I had Leukemia. I heard that I might die if I did not get immediate treatment. I remember seeing my Mom in shock, and my family crying, and that became my worst day ever.

What Coast to Coast Against Cancer means to me: After surviving Cancer at a very young age, I’ve often thought about helping others like me. If people hear my story and let them know I’m not much different then them, that might give them hope. , I would enjoy being a part of an organization, that helps others work through the realities of life with cancer - this will always be part of who I am and be an impact on my life, and my entire family. It would be very special to know that my family and I could help other families, by raising money and awareness. If this meant I could help save someone’s life, to get the same kind of second chance I did, then I would be thankful..

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: “Don’t feel sorry for us. Be there with us and help us believe. If we’re together, everything is going to be alright. It will be just like a bike ride through the park. We might encounter some hard gravel, but I can see the smooth, soft grass ahead, so let’s bike right along, together.” I would hope to be able to thank all those helping and participating.

Any other personal thoughts: After what happened and I realize how lucky I truly am, I never leave the house mad at anyone or without saying goodbye and I love you. That has been a good life lesson for me. Also, I’ve always dreamt about being a doctor when I’m older, just like my grandpa was. I never met him because he died of Cancer before I was born. But I know he was a great person, and would want me to be a part of something like this. I know this might sound cheesy, but if I did, I think he’d be right there with me, together the whole way through, just like I know he was when I had cancer. Finally, being apart of something like this makes me want to cry. Not in a bad way, but because this feels like a good way to help something that took some of my life away. I’m sitting here wondering: who wouldn’t want to be apart of something that can only do good. Especially because I know this could mean a lot to many people, who have had this experience in their family. I want to learn from this and meet more people like me, and have everything to do with this event. It’s very important to me. And it seems very important to my family considering I have a sister that cried when she first herd about it. It really shows what a loving, caring family I have. I love you guys to the stars and back.

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Describe some great things that have come about through your journey of childhood cancer: My association with Camp Oochigeas; everything in my life, as I am who I am based upon the experiences I’ve had, which include Cancer.

Describe your Best Day: Finishing my ride across Canada in Halifax was a pretty good day.

Tell us about your Worst Day: I was too young to really comprehend cancer, but the nights prior to my leg being amputated where not great.

Tell us what Coast to Coast Against Cancer means to me: It’s important to show people that not only can you survive cancer, but you can thrive afterwards.

Tell us what your message is to our riders, volunteers, sponsors and all Canadians: Cancer isn’t a death sentence. It’s an opportunity to learn that you can fight hard and win. But, you don’t fight alone. You rely upon the support of friends and family, and strangers who are doing everything they can to help you as a cancer patient, even though they have never met you. The knowledge that people across Canada are fighting on your behalf means the world to people who are in a hospital bed struggling. Thank you for all your help!

Cycling across Canada to raise money for childhood cancer not only helps numerous charities across the country but unites a very large country and focuses peoples attention that cancer is not something that only hits adults, or people from one province. It’s something that effects everyone, and now everyone is able to help raise money to fight the disease.

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