Flashback - The Journey to 40
CHEO's 40th birthday countdown
We are 40 weeks away from celebrating CHEO's 40th anniversary (officially May 17th). With so much talk of CHEOnext and our future, it is good to have this catalyst to reflect on who we are and where we’ve been – which should and will always be key factors in our journey forward.
Looking back over the years, we have so much to celebrate. So why wait until May 17th! Each week for 40 weeks we will showcase a different story of courage, determination and healing. Let's celebrate the patients and families we’ve helped through the years and who continue to inspire us.
Farewell Flashback: Geneviève Vézina’s Story
As I sit here and write this, it is the eve of my 24th birthday. It’s hard to believe that my struggle for my first breath happened 24 years ago, but here I am today, striving, smiling and succeeding.
When I came into the world, the doctors told my parents that I would not make it to the morning, and that all their efforts would be in vain to save my life. I was born 3 months premature on May 14, 1990 and was left with severe health complications; primarily broncho pulmonary dysplasia, an enlarged heart and juvenile cataracts. My parents were offered the chance to give an experimental drug (Surfactant) a try, but even then, there was no way of knowing what quality of life I would have. That day I began the biggest fight of my life.
For the next two years I was followed by a specialist and cared for by the most wonderful nurses at CHEO. I am certain they are part of the reason that I had a wonderful stay at CHEO and was able to leave the hospital at 18 months of age.
Today I am pursuing a career in education, have traveled to Guatemala, and I am planning to continue my education at a University level.
I will never be the same as peers my own age, I will never be able to run a marathon for lack of lung capacity, but for all the limitations there are many other capabilities I have and live a life full of wonder, joy and fulfillment.
It took a wonderful team of wonderful people to help save my life before it even began. The community at CHEO helped my parents and supported them through everything.
CHEO and all that it is, was my home away from home for many years and gave me a chance to survive. It is the reason I am here today.
Week 32: Amy Volume’s Story
I was diagnosed with Juvenile Rheumatoid Arthritis at 10 months of age.
JRA is fairly rare, so much so that in the late 80’s when I was diagnosed, CHEO didn’t have a Rheumatology Clinic yet. As a result, my CHEO story began in Toronto. My Toronto doctor had a brilliant student named Nina Birdi who took great care of us.
Flash forward to CHEO opening their Rheumatology Clinic -- Guess who my doctor was? Dr. Birdi! What excellent news that someone who was with me since day one would be starting a long and successful career taking care of me at CHEO.
As a child dealing with JRA, I remember a lot of pain, stress, tears and fear. I didn’t really know what was best for me and there were a lot of the experimental treatments (from special diets to physio, not to mention being in multiple drug trials and surgeries). All the hard choices or risks however were very thoroughly explained and overseen by the wonderful doctors and nurses at CHEO.
Growing up in the hospital and being very different from the kids I went to school with wasn’t easy, but I always felt that CHEO was a second home. I made many friends on 5 West who didn’t make fun of me racing around in my wheelchair, or ask me why I moved a bit differently.
My final drug trial at CHEO started when I was around fourteen. I was discharged from CHEO at fifteen, so I’ll always think back upon that experimental drug trial as a final push towards getting better and doing it on my own.
Today I’m twenty-eight, still injecting myself weekly and seeing a Rheumatologist once or twice a year. I feel special to be able to visit CHEO and still keep in touch with Dr. Birdi. Without CHEO, I don’t know that I would be able to do the things I am able to do today. My disease wasn’t something I’d speak about when I was younger because I didn’t quite revel in my differences the way I do now. CHEO taught me how to be strong, how to “take that leap” and I taught myself that speaking about my life as a CHEO kid can help others do the same.
Happy 40th Birthday CHEO, I feel blessed to have shared many great years with such an amazing hospital.
Many of you may recognize Amy from her time as a radio personality on the Bear 106.9 FM.
Week 31: Aime Hutton’s Story
I was born at the Riverside Hospital on October 6, 1976, 3 months early and weighing 1 pound 12 ounces (787 grams). I was given 24hrs to live.
I was immediately rushed to CHEO. The director of the NICU at the time, Dr. Brock McMurray, said he had never seen a baby as small as me. I was one of his first tiny ones. In the NICU, I had many setbacks. I was severely apneic because my lungs weren’t fully developed and had numerous infections that entered my blood, throat and stomach. At one point my weight dropped to 1 pound 6 ounces (737 grams). I was closely monitored by a team of nurses (June Grennough and Theresa MacDonald - who even baptized me in the NICU) and doctors Dr. Pearson, Dr. Bhargava and Dr. Simmons.
On Dec. 22nd I was big enough to go home at 4.87 pounds (2210 grams). Once home, there were other challenges. I walked and talked late and sometimes didn’t eat enough food. Going to school was another huge challenge, having been diagnosed as a ‘slow learner’ in elementary school.
I did graduate, however, from all of my academic studies, and even completed a Bachelor’s degree in Sociology and Women’s Studies in 2000 from Lakehead University.
After university, I moved to Calgary where I wear many hats in my personal and professional life. I work during the day with adults living with developmental disabilities in the community and I am an Empowerment Leader, helping girls and women believe in themselves, even when no one else will, through my business called Inch by Inch Empowerment. I am an International Best Selling Author with 2 co-authored books and I am the Canadian Ambassador for the Freedom & Empowerment Campaign, a global campaign that educates and gives support to those who have experienced domestic abuse/dating violence.
My family and I are truly grateful for all the doctors and nurses from CHEO’s the ‘early years’. If it wasn’t for their dedication, non-stop work, and drive to save my life I wouldn’t be here today sharing my story. Thank YOU CHEO!
Week 30: Anna-Marie’s Story
I went to CHEO March 19,1989 directly from the neurologist's office after an appointment confirming my brain tumour. I was not allowed to go home after the appointment. Once at CHEO I was prepared for surgery the next morning.
The surgery took eight hours. During exploratory surgery, Dr. Ventureyra found that I also had a metastasis. The team did a stellar job - my recovery was uneventful and I started radiation treatment soon after with the help of Dr. Grimard and my Neurologist, Dr. Keen.
So here I am now - 25 years later - a Web Administrator with the government and happily married to the man I love. The only exterior signs of my surgery are that I have half my hair and a long scar on the back of my neck. Ah, but beauty is only skin-deep. What matters most is I am happy, healthy and able to function like most other people. Although I have learning disabilities in memory, math and logic due to surgery and radiation, I am known as Mrs. Fix-It at my office because I have an eagle eye for detail, can figure out what clients want when others can't interpret their sketchy requests. I am able to restore French accents in documents where the software stripped them out and have better French grammar than some of the francophones.
Come on world! Cancer was a mere bump in the road with the intervention of CHEO!
Week 29: Mélodie's Story
Mélodie was born on February 28th, 1995 in extremely difficult circumstances and almost didn’t survive the first few days of life.
We were told by the team at CHEO that hers was a very rare case -- a case so severe that, statistically, CHEO sees a case as bad as this only once every ten years. We were told, soon after birth, that Mélodie would never hear or see anything, and that she would most likely be vegetative.
We were strongly encouraged to give up Mélodie as we were told that her case was too hopeless. The road has in fact been very difficult, with many hospitalisations, more than 20 surgeries (we lost count!) many of which were very complex and involved a great deal of risk.
Mélodie has multiple medical conditions and severe disabilities, including deafblindness. She was born with practically no brain. Her neurosurgeon even told us that there was only a thin sheet of brain cells. Mélodie came very close to dying a few times.
CHEO supported her medical needs every step of the way. And thanks to the wonderful staff at CHEO, Mélodie is still thriving and turned 19 years old in February. That doesn’t mean her life is not amazing, it is just different! Mélodie is surrounded by love and affection from Mom, Dad and her older brother. She means the world to us.
Incredibly, Mélodie has far surpassed the dark predictions that were made in 1995. She is blind (cortical visual impairment) and deaf (auditory dyssynchrony and cortical issues) but can decode
a great deal of spoken language. She wears her name very well because,
amazingly, she can also sing! Those who have heard her sing songs can’t believe that she sings the words and melody in tune!
She laughs, talks, sings, smiles and is learning to also use switches for communication. Yes she has severe limitations, but she is far from being vegetative and is as happy as any child can be. She brings joy and amazement wherever she goes and has touched numerous persons over the years.
Dad likes to tell Mélodie’s story because he has realized that Mélodie’s mission in this world is to show that what is essential is invisible to our eyes and that life’s value lies where we sometimes least expect it. Mélodie shows, through her example of intense desire to survive and
to live, that life deserves to be cherished and fought for. Spreading this message has become Dad’s mission too.
Thanks go to all those at CHEO who contributed to Mélodie’s quality of life. You really do make a major difference!
Week 28: Matthew's Story
In August 1994, when I was 21 months old, I was diagnosed with a brain tumour. We lived in British Columbia at the time and my first brain surgery was at the children’s hospital in Vancouver. My family moved to Ottawa when I was 2 years old, so that we could live closer to extended family and be treated at CHEO.
I have had three brain surgeries to remove tumours, underwent 2 ½ years of chemotherapy and, on my 5th birthday, began six weeks of radiation (I still have my Sesame Street Zoe mask.). I spent a lot of time in the medical day unit. I even had my picture on the wall there for quite a while.
I had treatment for a stroke when I was 11 years old and numerous other medical needs. I’ve even had my tonsils and gall bladder removed, and orthopedic surgery on both feet.
Growing up, going to CHEO was a huge part of my life. I was never afraid of going to the hospital because you made me feel happy and safe. There were special people for me in every department that I visited. There are so many people I want to say “hi” to. You know who you are! Honey Bear says hi too (he’s still around).
Today I am 21 years old. In the last few years, I graduated from high school with a high school diploma and a business certificate and completed the one year General Office Administration program at Algonquin College. I am now in my 2nd year at Algonquin College in the Office Administration, Executive program. In addition, I belong to a bowling league, I enjoy social events with Rebounders (adult survivors of childhood cancer) and I love to cook!
Thank you CHEO for being there for me… and specially Dr. Lawrence, for keeping me there as long as possible.
Week 27: Charles's Story
At 6 months of age, my mom took me to see our family doctor after months of irregular breathing and pain episodes. After a series of mis-diagnosis of Asthma, my family doctor referred me to CHEO where I was diagnosed with Sickle-Cell Anemia.
Sickle-Cell is a genetic blood disorder that deforms the shape of the red blood cell leading to a variety of problems such as organ damage, severe pain episodes and stunted growth.
Over the years I was admitted to CHEO countless times and underwent over a dozen surgeries. Between grades 5 and 10, I spent more time at CHEO than I did at home or at school. When I was 14, I began a relatively new procedure for children known as “Red Cell Exchange” in which my sickle-shaped red blood cells were replaced by healthy, donated blood. I receive this treatment every 4-6 weeks depending on my health and thanks to this treatment, I am able to enjoy a quality of life I never thought possible.
I am now 24 years old and enrolled at Carleton University, studying Public Affairs and Human Rights and hope to pursue my education even father after I have graduated. I am able to travel, work, exercise and simply go through the motions of everyday life with ease thanks to the support of my loving family and CHEO.
Above all, CHEO has been instrumental in my health. Since “graduating” from CHEO, I have taken every opportunity to give back to the place that has given me so much by fundraising and speaking on behalf of CHEO, including chairing the “Big Steps” campaign which raised $25 million for the hospital.
Every time I go back, I try and say thank you to as many staff as possible and I hope that every person who works at CHEO knows how grateful I and my family are. The staff at CHEO are some of the best people in the world and have encouraged, guided and strengthened my life in so many ways. Every day new patients will face new diagnosis and new battles to fight. In the face of such difficulty, I am glad that our community has CHEO to help them fight and win those battles.
Week 26: Meghan's Story
I was diagnosed on July 19th, 2004 with Acute Lymphoblastic Leukemia. I was 12 years old. I lost about 30 pounds in the first three weeks of treatment. One of the medications caused me to lose all my muscle mass/tone. I was unable to walk for a few months and was in a wheel chair. I began physiotherapy and slowly gained muscle back. As for the rest of my treatment I was truly lucky. I never once vomited from the chemotherapy and I returned to school for the end of 7th grade.
I received a wish from the Children’s Wish Foundation and chose Disney with a Disney Cruise. It was a perfect ending to the two and a half years of treatment. Today I am seven years out of my treatment and have not relapsed or had any health conditions related to the medications.
The most valuable and memorable part of the whole experience is that it has made me who I am today. I don’t regret being diagnosed with cancer, and I feel lucky that I was able to learn so many important life lessons at such a young age. I believe everything happens for a reason and although I would never wish to be diagnosed with cancer again, I wouldn’t change a thing about my experience. The staff at CHEO was amazing. Everyone was so positive and encouraging. To this day I haven’t forgotten their kind service and the people who helped most.
Due to my experience of having cancer, going into my teen years I experienced extreme low self-esteem, anxiety and depression. Not having hair and all the weight I had gained from certain medications made it difficult for me to cope in high school. When I was done my treatment I sought help with a counsellor and saw her for five years. My experience helped me realize that I wanted to work at CHEO one day and help kids who go through the same struggles I faced in treatment.
Today I am two weeks away from turning 22 years old, and will graduate in June 2014 from Carleton University with a Psychology degree. I am currently doing a co-op alongside researchers at CHEO and the Healthy Active Living Centre. I love the work there and am so happy to be taking the first steps towards my goal of working at CHEO.
Week 25: Sarah's Story
Sarah Stewart was born on Nov 7, 1993 with all the doctors and nurses holding their breath.
She was one month premature weighing 7 lbs. 1 oz. She had a right side diaphragmatic hernia -- a hole in her diaphragm. Her intestines and bowels were in her right lung cavity, which caused under-development of her right lung and put pressure on her heart and left lung.
CHEO and Ottawa General doctors were aware of her condition before her birth and although they were prepared for her, it was a big hole and her parents were told that she may not live for more than three days.
The day after she was born she had surgery to repair the hole, and stayed in hospital for three months until she was well enough to go home. She was very fragile, on a feeding tube and received oxygen 24/7.
At home Sarah cried constantly and would only sleep upright in her baby chair. Her parents brought her to CHEO where they were told her diaphragm had ruptured causing constant pain and high elevations of C02. She was dying and her doctor insisted on her having a tracheotomy to keep her alive and to help her gain weight.
After several surgeries and lots of hospital stays (her longest almost a full year) she became more stable. At the age of 2 doctors confirmed Sarah was deaf and she began learning sign language. Her tracheotomy was removed after 7 years, followed by her feeding tube.
Today Sarah is 20 years old and lives in Belleville, Ontario with her mom and her sister. She has graduated from Sir James Whitney School For The Deaf and hopes to have a job soon. She recently stopped needing full time oxygen and only requires a Bi-Pap machine at night. She is getting ready to move into her own apartment and is working towards getting her G2 license.
She and her family are forever grateful for the on-going care and support received from everyone at CHEO. Her mom calls her “our miracle child.”
Week 24: Tim's Story
In February of 1999, at the age of 11, I came to CHEO with an unexplained pain in my right thigh. Following an almost immediate biopsy, I was diagnosed with Osteogenic Sarcoma, a tumor in my femur. The very next day I began treatment in the form of chemotherapy.
Unfortunately, the aggressive nature of my cancer necessitated the amputation of my leg. However, the surgeons at CHEO were able to perform a miraculous procedure called a Rotation Pasty, where my unaffected ankle and foot were salvaged to provide me with a working knee. This operation effectively resulted in a below knee amputation in a situation where an above knee amputation would have traditionally been necessary.
Icannot overemphasize the significance of this operation on my life. I have suffered no phantom pain as the doctors refrained from cutting any nerves; instead, they meticulously cut around them and coiled them up. I walk on a foot, rather than a “stump” inside my prosthetic leg. So, I get calluses, not pressure sores. In simple terms, I experienced the best possible outcome given my circumstances and I owe everything to CHEO and its incredible staff.
I am now a Masters student at Carleton University studying Biomedical and Electrical Engineering. My focus is sensors development for use in prosthetics and other medical applications. I am also a SCUBA instructor, specializing in teaching people with disabilities how to dive. When I’m not diving, you can often find me rock climbing, longboarding, snowboarding, kayaking, or canoeing, and generally making the most of life.
When I was diagnosed with cancer, I had just had my eleventh birthday. Without the intervention I received at CHEO, I would not have likely seen my twelfth. Last month I turned 26. So far, the treatment that I received in 1999 has more than doubled my life. As a result, I have had the pleasure of going to camp, of going to high school, then on to university. I was able to work my first part time job, meet my best friends, and love my first girlfriend. I’ve gotten to eat thanksgiving dinner with my family 14 extra times and watch my beloved dog grow old. There are no words sufficient to express my profound gratitude to CHEO and the community for what I have been gifted. I have been given an entire lifetime and for that I can only say thank you.
Week 23: Mauro's Story
My name is Mauro Burri and I was diagnosed with Chronic Renal Failure in 1975. For the next five years I endured a number of surgeries in preparation to begin dialysis. My dialysis treatment began in 1979 when I was 10 years old. It was not always an easy time in those early days of dialysis. It was pretty tough being sick each time, on the machine with headaches and numerous stays in the hospital for surgeries and infections. I always kept my spirits high with the help of the loving nurses who cared for me and made the atmosphere fun and bearable. I was on dialysis from 1979 to 1982 and received my first kidney transplant in 1982 and the second one in September 1987, followed by a long stay in hospital with its own challenges.
I am now 44 years old and my Kidney is 27 years old – yes, I gave my kidney an age because in 1987 I felt like I was reborn. I have tried to give back to the hospital that gave me so much by doing talks to people just starting dialysis and doctors -- as a spokesperson for the disease and my experience.
Today I, work full time in the Federal Government, coach my daughter’s hockey team and have been married 20 years to a wonderful woman who supports and understands my challenges. I have lived with this disease almost 40 years and do not regret anything I have gone through. I have learned life lessons from living with this. I am happy to say that my kidney is still pretty stable.
I would like to say thank you to CHEO nurses, doctors and the numerous others that not only saved my life, but made CHEO feel like a second home and helped me become who I am today.
Week 22: Niall's Story
We fist met Niall Barron when he was four years old and diagnosed with a rare genetic cellular disease called cystinosis, a disease characterized by the abnormal accumulation of the amino acid cystine that can lead to kidney failure. At the age of 13, Niall underwent a kidney transplant. The donor was his father. In the next years he went on to have his remaining kidney removed and suffered through various complications that required further surgeries. Niall became a regular in the dialysis clinic – receiving hemodialysis four times a week, four hours a day, to maintain healthy blood. He made numerous friends along the way, using humour and witt to get through his treatments. Niall also went on to do a co-op placement with the CHEO public relations team. Today he is a full time student at Carleton University and has transitioned to The Ottawa General for treatment. He shared the following with us:
“Since transitioning to The Ottawa Hospital, I have been acclimatizing to university life. I am majoring in Communications and Political Science, and am enjoying both quite thoroughly. I watch and dissect commercials for enjoyment, and follow American and international politics rather closely, reading various weeklies, monthlies, and books about the subject. I have also been forming a new politics club, The Watchdogs. It’s been quite a steep learning curve, but I have met a number of friends in the process. I have also started frequenting the National Arts Centre. I am always looking for a respite from the bleak surroundings in hospital. Above all, the element I find myself longing for from CHEO is its atmosphere; TOH is, in function and appearance, utilitarian. It’s strange, I suppose, that one can find a hospital – any hospital – inviting, but CHEO managed the feat.”
Week 21: Sharmila's Story
Sharmila Chari recently reached out to us when she heard of our up-coming 40th anniversary. ‘Shami’ was born on May 16th, 1974 with Spina Bifida and was among the first patients at CHEO. She considers CHEO her second home, having undergone 13 surgeries here, spent countless days on 5 west and being a regular patient in the Spina Bifida clinic. She has fond memories of the ‘amazing team’ that took care of her, including Liz Coughtrey, Dr. McIntyre, Dr. Venturera and Dr. Michael, just to name a few. In May she will celebrate her 40th birthday. Shami graduated from Algonquin College and currently lives in Toronto where she works as a Customer Service Representative for Capital One. In her spare time she enjoys being with family and friends and she’s proud to say that “CHEO was made for me!”
Week 20: Lauren's Story
Lauren Bellefeuille was five years old in February of 2002 when she broke her leg downhill skiing and was brought to CHEO by ambulance. She would spend almost three weeks in traction on 5 East, over a month at home in a hip spica cast and another few weeks in a single leg-long cast. Her mother, Tracy Wrong, is Director of Quality and safety at CHEO and says Lauren remembers her time here fondly, in spite of being tied to her bed for over two weeks, because of the great care she received by the CHEO staff – many of whom are still here today. They may not remember her, but Lauren and her mom remember them well. They include Fran Cameron, Louise Fourney, Carol Windsor and Carolyn Deschamps, just to name a few.
Once her leg healed, Lauren went back to being a happy kid and even signed up for tap dancing lessons the following September. Today she is 17 years old, grade 12 student thinking about university. Until this year, she and her sister danced in competitive hip hop competitions as a duet and as part of a group - winning awards along the way. You’d have never known that 12 years ago, she had broken the largest bone in her body. And yes, she did go back to skiing the following winter and even took up snowboarding.
Week 19: Breeann's Story
We met Breeann in 2003 at the age of 12 when she was diagnosed with a brain tumor. The tumour had grown between the two lobes of her brain and reached from the optic nerves back to her brain stem, wrapping around her pituitary gland.
The surgery to remove it took 10 hours. While the tumour itself was benign, it caused long-term problems for Breeann, including damage to her optic nerve. She had another surgery five years later to correct the strabismus in her eye and had to begin taking life-long medication as a result of loosing her pituitary gland. She went on to have numerous other surgeries.
In 2007 the brain tumour came back and Breeann once again fought hard to get better – and she won. Breeann was granted a wish from the Children’s Wish Foundation and chose to travel to Italy where she visited Venice and Rome. Bitten by the travel bug, she has since travelled to Holland and Florida and is planning a return trip to Holland with a stop in Ireland later this year.
Breeann graduated with honours from an esthetic and spa management course and now works part time at Michaels Craft store in Brockville. She loves her job, especially hosting birthday parties and teaching rainbow loom classes.
You can read more of Breeann’s story here.
Week 18: Josh's Story
Joshua Turnbull was born 4 weeks premature on April 12, 1986 and immediately rushed to CHEO where he would undergo three operations in the first week of his life. Born with Tracheoesophageal Fistula, or an incomplete esophagus, Josh spent several months in the NICU undergoing numerous surgeries in an attempt to open his esophagus. Eventually after many failed surgeries, doctors decided to remove his esophagus and Joshua was fitted with a feeding tube.
Today Josh is 27 years old and lives with his parents. His feeding tube has been removed and he can eat normally. This has opened up his life up considerably. He was able to go to college and graduated in 2010. He enjoys a busy social life with friends and is currently writing a novel, which he hopes to get published in the near future. He’s still single but hoping to find his match. Josh is very thankful for everything CHEO has done for him and shared the following; “If it weren't for all the wonderful doctors, nurses and volunteers at CHEO, I would not be here today, so thank you all."
Week 17: Megan's Story
Megan Hayward was diagnosed with leukemia (ALL) on January 16th, 2000. Treatment began right away and 6-year old Megan went on to lose her hair, her energy and 20 pounds -- but not her spirit. Megan’s weekly chemo lasted for over two years and her weekly blood draws and treatment could be heard all over the 6th floor. She was a poster child for needle-phobia.
At the end of her treatment, Megan’s parents wanted to give back to CHEO. They created the Gigantic Greely Garage Sale for CHEO, which ran for 5 years and marked Megan’s new status of long-term survivor. In total, over $40,000 was raised.
Today, Megan is in her third year at Carleton University, studying Child Studies, Linguistics and French. She would like to work with children, preferably at CHEO, but not giving pokes, please. She is happy to report that she had her first blood draw in years last week and not a peep was heard. Nurse Fran would be so proud.
You can read Megan’s story which was showcased in CHEO Foundation newsletter in 2006.
Week 16: Emily's Story
Emily Beaudoin was only 13 years old when she first came to CHEO for what seemed like a physical illness. Weak and tired all of the time, she was sleeping up to 20 hours a day and was not attending school, nor interested in seeing her friends or doing any of her regular activities. She began seeing a psychiatrist at CHEO and was finally diagnosed with Major Depressive Disorder and was referred to CHEO’s Outpatient Mood and Anxiety Clinic.
Emily experienced many ups and downs throughout her four years of treatment at CHEO. She and her treatment team worked hard to combat the social anxiety of returning to school. Emily experienced all types services offered at CHEO for patients dealing with mental illness, including an inpatient stay, a day treatment program and Youth Net.
Today Emily is happy and healthy thanks to her treatment team at CHEO. She graduated high school with honors and was class valedictorian. She is now a first year university nursing student at the University of Ottawa. She still volunteers regularly at Youth Net and works hard to destigmatize mental illness among her peers. Last year she was presented with a Queens Diamond Jubilee Medal in the House of Commons for her volunteer work within the area of youth mental health. Emily is so grateful for all the staff at CHEO – because without them, she wouldn’t be where she is today.
Week 15: Lauralee's Story
In the first 16 years of her life, Lauralee Gallinger was diagnosed with three brain tumours --one she was born with, and two others that showed up in yearly brain scans. She underwent nearly 20 rounds of radiation and intense chemotherapy treatments that damaged her ovaries, doctors told her.
Eager to have a family, Lauralee and her husband did not let that stop them. After months of difficult fertility and hormone treatments, she and her husband were thrilled to discover they were expecting a baby! Their daughter, Laiya, was born on December 19, 2012 - a perfect Christmas miracle.
Today Lauralee is 30 years old and excited about her daughter’s upcoming 1st birthday. She works full time at the Canadian Paediatric Society and has been tumour-free for 15 years. She is enjoying good health but is still monitored through MRI's every five years.
Week 14: Ryan's Story
Ryan Lythall was born in 1975 with a rare form of Muscular Dystrophy called Nemaline Myopathy. When he was six months old, his lungs collapsed, and he was rushed to CHEO, where he would live until 1994. Through the years Ryan made friends with everyone at CHEO and was considered a “big brother” to many young patients.
In 1994, he left CHEO and began adjusting to life outside the hospital. He attended college to complete his grade12 diploma, and eventually moved to an apartment. Today his health is better than ever and he attends the gym four or five days a week. He is very proud to be a wheelchair accessibility activist. His biggest accomplishment was convincing Bluesfest to install a platform so that people in wheelchairs can see the show. Since then, every year Bluesfest employs him to ensure the grounds are easy for people of all disabilities to navigate and see the shows.
Ryan is currently in the process of filming and putting together a documentary about his life. The movie will chronicle his living with a rare disability, his time at CHEO and all the wonderful nurses who looked after him. He hopes to release it online in 2014.
In 2013 Ryan was featured as an Amazing Person on CTV Ottawa. It is worth watching!
Week 13: Justin's Story
Justin Bygrove was born at 28 weeks on August 2, 1983, weighing a mere 3lbs 4oz. He was immediately rushed from the Ottawa General Hospital to the Neonatal Unit at CHEO. Tiny and suffering from a collapsed lung, Justin was intubated. His lung collapse led to a brain hemorrhage on his right ventricle, preventing it from draining fluid. He was put under the care of Drs. Brock McMurray and Herman Hugenholtz and a shunt was inserted to remedy the fluid buildup. Following surgery, Justin spent three months at CHEO before finally going home.
For the next 18 years, Justin’s was a regular at CHEO under the care Dr. Herman Hugenholtz, Dr. Michael Vassilyadi, and Dr. Enrique Ventureyra. He would undergo regular CT scans and chest x-rays as well as numerous hand-eye coordination tests, hearing, and growth appointments.
Justin and his parents are forever grateful to CHEO’s caring and dedicated doctors, nurses, and specialists. Today he is 30 years old and healthy. He is has been working at CHEO for the past six years as a Business Systems Analyst in the Information Services department. He has a soft spot for the neonatal team that cared for him and considers it a privilege to work for the hospital that saved his life.
Week 12: Annie's Story
We first met Annie Underhill in 2003 when she was just four years old and fighting Acute Lymphoblastic Leukemia. Annie and her family were facing 910 days of chemotherapy -- six months of treatment.
Ten years after initially being diagnosed with Leukemia, and eventually cancer free, Annie walked through the emergency doors at CHEO again in April 2013. Following a week of tests and procedures she was diagnosed with Eosinophilic Fasciitis. Annie is being treated by the Rheumatology Clinic and will be for at least another year while she continues to manage her symptoms.
Annie has always enjoyed playing hockey, skiing, soccer and running --activities put on hold while she heals. She has found a new love of athletics in Jiu Jitsu and she remains on the Athletic Committee at her school, where she is a grade 10 student.
Although years had passed since she saw some of her nurses in MDU and the 5th floor, she is remembered by many for her unforgettable smile and laughter.
Annie hopes to be able to be a CHEO Volunteer when she is old enough and is able to bring some of her experience and knowledge -- and simple joy of life -- to other children facing medical challenges at CHEO.
Read more of Annie’s story here.
Week 11: Marc-André's Story
We first metMarc-André Bigras in 1993 when he was three years old. Diagnosed with meningococcemia type C, a flesh-eating infection that cuts off blood to the extremities, Marc-André lay in an induced coma for three weeks while CHEO's medical team stabilized him sufficiently for the amputations they would have to perform - several fingers and both legs below the knee. He went on to undergo more than 50 operations over the following years and endured countless hours of physio and occupational therapy.
Today, Marc-André is 23 years, in good health, living on his own and working part time as a computer technician. He still requires occasional surgeries which he says “have gotten further and further apart”.
He and his family are forever thankful to staff at CHEO who helped save his life and recently shared these thoughts in an interview with the Ottawa Citizen:
"I'm happy to do whatever I can for CHEO. I want people to know how it can help kids and their families. My advice to other kids who are dealing with an illness or disability is to believe you can pull through and to trust the staff at CHEO - they're always there for you."
Read more of Marc-André’s story here.
Week 10: Aaron's Story
We first met Aaron McClennon-Sowchuk in 1998 when he was 10 years old. After experiencing seizure-like symptoms while playing hockey, doctors at the Riverside hospital found a large oligodendroglioma tumour above his right ear. He was referred to CHEO where he was seen by Dr. Michael Vassilyadi and Dr. Daniel Keene who both recommended surgery. Aaron underwent surgery to remove the tumour on October 15, 1998.
Today Aaron is 25 years old. He completed a software engineering degree at Carleton university and graduated with high honours in 2011. He has a girlfriend and works for a small software company. He also became the youngest member of Kiwanis Ottawa club in November 2012. When we heard from Aaron, he shared the following message with Dr. Vassilyadi:
“I'm proud to announce that 5 days shy of the 15th anniversary, I haven't had a single seizure since. As seen in an MRI last year, there is no sign of re-growth. On behalf of the family, thanks for changing and saving lives.”
Week 9: Christa's Story
Christa Mayaliwa was a young girl and diagnosed with Juvenile idiopathic arthritis (JIA), the most common type of arthritis that affects children. Simple things like putting on shoes and going to the bathroom were daily struggles.
Christa went into remission and came back as a teenager with serious health issues. "I'd only go to school two out of five days, because I didn't have the energy to get up. I couldn't even wash myself,” said Christa.
She also had many adversities at home and school that she also handled with great courage and was a pillar of strength for her family. She graduated from the Law Clerk program at Algonquin College and went on to study Criminal Justice in New Brunswick. Christa also wrote a book chronicling her journey titled He Never Left Me.
Today Christa is 25 and works for the Ministry of the Attorney General Office in Ottawa. She has had six book signings since her book’s release, was featured on radio and local papers and was crowned Woman of Virtue Ottawa in July.
Week 8: Kolin's Story
We first met Kolin Casagrande in May 1978 when he was two days old. Kolin arrived at CHEO from the Civic hospital and underwent his first of many surgeries at the age of 10 days to repair his bowels. When CHEO discovered that Kolin became better when fed breast milk, a call was put out to the community for breast milk. Kolin’s story was on the front page of the Ottawa Citizen. Ottawa mothers rallied and Kolin began to thrive on breast milk. He would spend 10 months at CHEO under the loving care of the 5 north staff. Today Kolin is 35 years old and married. He has recently returned to school at Algonquin College to pursue a diploma in screen writing.
Read more of Kolin’s story here.
Week 7: Eric's Story
We first met Eric Duchesne in June 2002 when he was 15 years old. Eric was airlifted to CHEO following a diving accident that left him with critical fractures of the neck, a spinal cord injury and a cerebrovascular stroke. He had lost the ability to move his limbs and was given a 10% chance of survival and a 5% chance of regaining any movement. He spent two weeks in ICU, eight weeks immobilized in a hospital bed and an additional three months on an inpatient rehab unit in an intense neurological rehabilitation program. Eric’s willpower was incredible. Ten years later, he has regained all perceptions of sensation throughout his body. He went on to graduate high school and complete a post-secondary degree. Today he works part-time for TD Bank and is Chair of the Wishmaker Walk for Wishes, Gatineau-Ottawa chapter, for which he will be walking tall to raise funds for other kids like him on September 29th.
Week 6: Lucy's Story
Lucy Jaworski was 14 years old in 1978 when she arrived at CHEO – paralyzed, following a stroke. CHEO’s Dr. Ventureyra performed a surgery -- never-before done at CHEO -- that would allow Lucy to live a full life.
Today Lucy is 49, a healthy mother of two adults. She shared the following message with us:
“I truly believe that if it were not for the brilliant Dr. Ventureyra and his caring staff, I would not be alive today. The experimental surgery was done 35 years ago and I am not only alive but an active healthy mother of two who has done several 10K runs and a half marathon. I remember never being scared when at CHEO. And I have never considered myself as someone with a disease, let alone a rare one. In the early 90's Moya Moya disease was still unknown by most and I was told it would be best not to have children. My desire to become a mom was so great that it was decided I could attempt to have one child. In 1994, while being monitored very closely, my daughter Sarah was safely born. Unexpectedly 8 months later I was told I was pregnant with my son Kyle! I am thrilled and so very grateful that I had two beautiful healthy children. Both kids have been patients at CHEO over the years and I can still say that I was never scared -- I knew they were in good hands.”
Week 5: Sean's Story
Our Flashback this week takes us back to Sean McCarthy.
In the spring of 2001, Sean was 20 months old when he arrived at CHEO -- with no pulse -- following a near drowning in a creek. Amazingly, he exceeded all medical expectations and recovered. Today, Sean is a healthy, active 14 year old. He has just started grade 9, is on the school football team and enjoys playing hockey, golf and many other sports. His mother Nathalie shared the following message with us:
“We try not to think back and look ahead. Just keep going! One challenge we continue to face is trying to not put our children in bubble wrap. Let them live their lives. Hopefully we have not passed on our fears that something negative might happen and have given them the opportunity to live full lives.”
Week 4: Billie Jo's Story
Our Flashback this week takes us back to Billie Jo Decarie.
Billie Jo was born HIV positive. By the age of six months she had full blown AIDS. She contracted the disease from her mother who contracted the disease from a blood transfusion. Billie Joe was a patient at CHEO her entire childhood.
Today she is 24 years old and a very busy stay at home mother to her two children, a step son and she is expecting her third baby in the fall. She is healthy, in love and adores being a full time mom.
Read Billie Jo’s story here.
Week 3: Nicholas and Patrick's Story
Our Flashback this week takes us back to 1990 and twin brothers Nicholas and Patrick Wert.
Nicholas & Patrick were CHEO regulars, having been born premature at 26 weeks and cared for by the NICU team for the first 6 weeks of their lives.
Today the twins are 22 years old and doing very well. Patrick is a graduate of Algonquin College’s public relations program and pursuing more studies at Royal Roads University in BC. Nick completed his high school diploma at the W.Ross MacDonald School for the visually impaired in Brantford, ON and volunteers in the community. Their mother Nancy shared the following message with us.
“Even after 22 years we still hold CHEO and especially the Neonatal Unit close to our hearts. Our boys wouldn't be here if it wasn't for the totally terrific care they received all those years ago. They are a constant reminder, every day, of the wonderful people we met, worked with and who helped us through some of the best and worst days of our lives. May all the staff, past and present, know that what they do everyday REALLY does leave a lasting impression on the lives of not only their patients, but the entire family.”
Read more of Nicholas & Patrick’s story here
Week 2: John's Story
We first met John (Jet) Leslie in June 2003. At the time he was eleven years old and diagnosed with osteosarcoma (cancer in his leg). John became an inspiration to everyone he met. Following the amputation of his leg, he was fitted with a prosthetic leg and went on to live a very healthy and active life.
Today john is a graduate of Algonquin College and a member of the national Para-Snowboard team. He is training in hopes of being selected for the 2014 Paralympic Winter Games. Check out his updated story in the Arnprior Chronicle Guide.
Week 1: Tyler's Story
Our first Flashback takes us back to Tyler’s story. Tyler was featured on the CHEO telethon two years ago. Today Tyler is doing superbly well. He volunteered his time at the telethon this past June and will be entering grade 11 this fall. Have a look at Tyler’s story.