"Brain Power" was created to inspire and give hope to children who are battling life with a brain tumour and to those children who have lived with them in the past. This book was created by kids for kids



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Acknowledgements


“Brain Power” was created to inspire and give hope to children who are battling life with a brain tumour and to those children who have lived with them in the past. This book was created by kids for kids. These inspiring stories are from childhood brain tumour survivors from all over Canada and their journeys are all very different.


“Brain Power” would not have been possible without the help and support of many people. Included was Dr. Eric Bouffet, my Neuro-oncologist from Toronto’s Hospital for Sick Children, who has put his support and trust into this project. Karen Haas, the wonderful, busy mother of a son with a brain tumour who has found time to help me create the front cover, and the many people that are involved within b.r.a.i.n.child; especially Elizabeth Peeters, who has helped to make it possible to publish “Brain Power”.
I urge all children that have survived life with a brain tumour or have just been diagnosed to write about their journey or perhaps you could write a poem or a song! If you are interested, please email it to me at snowvalleymcleods@sympatico.ca and you will see it in the next addition of “Brain Power”.
Alexandra McLeod

November 2006

Untitled

She stands alone, both tall and true

The perfect picture of solitude

The soul of a woman encased in bark

With limbs that move in a majestic arc

Alone she faced the storms of life

The wind and rain, disease and strife

Others gave up, but no, not she

And there she stands for all to see

She’s had her share of troubles and woes

But she made it through, and still she grows

Like her I too know grief and pain

I’ve faced the wind, I’ve felt the rain

And like her too, I still stand tall

It may throw punches, I may take a blow

But in the end I too shall grow

Each storm I weather increases my strength

And beneath this skin, my soul’s to thank

The elm and I, we know what to do

We count on ourselves, and make it through.

Kelly Cook




In Control


The two important things I did learn were that you are as powerful and strong as you allow yourself to be, and that the most difficult part of any endeavour is taking the first step, making the first decision.

Robyn Davidson

Have you had a brain tumour? How are you doing in school?


Some kids who have had brain tumours struggle with schoolwork. It all depends on the location of your tumour, the effects of surgery, and treatment. I had surgery 5 ½ years ago to remove my tumour in the cerebellum of my brain. Part of my treatment was cranial radiation and this has affected my short-term memory. I found when I went back to school the next year, into grade four, I had difficulty remembering my times tables. I found solutions to my struggle by talking to my teacher and putting a plan in place that would allow me to have access to a multiplication chart. The thing was, I understood the concept of how to multiply but it was difficult when it came time to having to know and answer the equation in a matter of seconds. This is when I learned that the working memory part of my brain had been slightly damaged from the surgery or radiation.
As a grade 9 student I have kept my old plans in place and created new ones. I have realized, as I get older I am having a harder time memorizing things easily. It takes me much longer to study for tests and exams. With difficulties such as this one, you need to consult yourself and think about what would be good for you. The solution to this struggle is to start studying when your teacher first tells you that there is going to be a test. When you move into high school you will have a guidance counsellor and you can always turn to them to help set up a meeting with your teachers.

The best advice I can give you is to take one day at a time. If it is taking you longer to study, to answer questions that the teacher may ask you, or to understand your math, do not let yourself get frustrated! Put a plan in place!

By: Alexandra McLeod

Diagnosed with an Ependymoma at age 8 (2000)



The Journey Of A Lifetime


Applaud when we run,

Console us when we fall,

Cheer for us when we recover.

Edmund Burke

My name is Michael and I am a 10 year old boy. I live with my parents and older brother Paul. It all started with me having headaches at school. I only had a couple so I was not too worried. It was always loud in my classroom so I thought that was causing my headaches. Then they became worse, I had to come home from school twice because of my headaches. Thanksgiving night October 2005, I woke up at 2:00 in the morning with a terrific headache and I was crying my eyes out. That’s when my parents decided to take me to St. Catharines General Hospital. The doctor there gave me an x-ray since he thought I had a sinus infection, but after I threw up they decided to give me a CT scan. The doctor said he saw something on the CT scan and boy I was scared. By now it was 6:30 in the morning and the doctor decided to give me an MRI. This thing was big and loud. I was terrified. The technician told me to lie on the bed so he could slide me into this big tube like machine. They started the machine and boy was this thing loud. It sounded like a washing machine with a lawnmower, jackhammer and buzz saw all put together. The MRI did not hurt and wasn’t that bad, it was just loud. When the doctor looked at the results he told us that I had a brain tumour. I was trembling with fear when the doctor told me. Then they said that I might have to have surgery. I can’t describe how terrified I was when the doctor told me. At first they wanted to send me to McMaster Hospital in Hamilton, but since their surgeon was away that is when my journey to Sick Kids started.
On the way to Sick Kids I was still crying in fear. I was worried about having surgery since I never had it before. When we finally reached Sick Kids I stepped out of the elevator and what I saw was amazing. It did not look like a hospital one bit. It looked like a big kid’s shopping mall, with glass elevators and all sorts of paintings. I had to go straight to the emergency department and it was still colourful as ever. The staff was very nice. After check in I went up to my room on the fifth floor. My room had a TV, VCR, a bed for my parents and a personal bathroom with a shower. A nurse told me about a cool place on the 4th floor called Marnie’s lounge. It was great! It had all sorts of video games, pool table, and air hockey table, kitchen, large TV and much more. Before my operation I spent a lot of time there, I even got to meet two of the “Bare Naked Ladies” (Jim and Ed.). They played several of their songs and they even took requests.

One of the best things about Sick Kids was the food. You could order what you liked for breakfast, lunch and dinner. They even have Tim Hortons, Burger King and a huge cafeteria.

Back to the reason I was at the hospital. The doctor’s did confirm that I had to have surgery, again I was terrified. In preparation for surgery I had to have more MRI’s. Again they were just loud. Sick Kids gave me and my brother a lady to talk to, she was called a Life Specialist. Her job was to tell me what to expect before, during and after surgery. She was very nice and she answered all my questions. She showed me pictures of the operating room and explained about the process of putting me to sleep during the surgery. I was very scared because they said that I would be asleep during surgery and I thought I would wake up during the surgery. They actually knock you out (with drugs that is), and you do not feel a thing. After one week at the hospital I was ready for my surgery. I was scared. They brought me into a room and put laughing gas and cool air beside my face, it smelt like an old smelly truck. Then they put some stuff into my IV. It burned, but with the laughing gas I felt drunk (that’s how the doctor explained the feeling of anesthetic) so I didn’t really care at that point. I was out for the count! The next thing I new I woke up in a room with babies crying. It was a big room with four kids in there. We each had our own personal nurse and with the sounds of newborn cries I guess I was the oldest. When I awoke from my drunken stupor my family came to visit me in the ICU.

Within a day I was able to go back to the 5th floor and visit with the rest of my family and friends. I needed physiotherapy to help me walk, but within a couple of days I was able to do it with little assistance. I had to have a few more CT and MRI tests, but after brain surgery they were nothing. A week after my surgery I returned home. When we got the final results from the surgery, the doctors told me my brain tumour was called Anaplastic Ependymoma and it was cancerous. Even though they removed the entire tumor I still had to have radiation for six weeks. It didn’t hurt. I had to go every day Monday through Friday. I had to go to Prince Margaret Hospital for the treatments. They were very nice also, they gave me my own blanket and stuffed dog to keep me company in the radiation room. The technicians would set up the machine and they had to place a face mask over me while I lied on a table. They would set up a DVD player to help me pass the time. The treatments only took 10 minutes. It took longer to set up the DVD player. Everyone had to leave the room, but your parents can watch you and talk to you from the other room. Again it did not hurt, but I did loose my hair in spots .Now I am a regular 10 year old boy with a scar and a bald spot. It is taking a while for my hair to come back in some spots, but you have to stay positive and just go out and play. When someone asks me, “Oh you had cancer?” I would say “No, my tumor had cancer and I don’t have it anymore! Any More questions?”

By:Michael Ferrara

Diagnosed with a Anaplastic Ependymoma at age 9 (2005)

Tough, Sturdy and Triumphant


Without a struggle there would be no progress.

Fredrick Douglass

My name is Phillip McCorkell. I was diagnosed with Medulloblastoma at the age of five. Because I was so young at the time, I do not remember too much about my experience. I know that I had surgery to remove the tumor followed by radiation treatments. I hated school and did not want to be there. It was also made known to me that they did not want me there either. Just thinking about it brings back to many bad memories. My biggest problem back then was with my balance, coordination and hearing. Over the years my balance and coordination improved but my hearing had gotten worse. It was not until I was into my thirties that other late effects started, such as increased hearing loss, and going deaf twice. My hearing returned at a lower level. I have experienced a loss of vision clarity, dizziness and double vision. I have had increased bone and muscle pain due to damage done to my spine from the treatments. Considering that I was diagnosed in 1966 with my last treatment in June of that year, I am still able to live a fairly active life. I work as a Technician/Technologist in the Assistive Technology field, bowl in a league, and belong to several radio organizations - I also hold an amateur radio license. I like to travel and do volunteer work with a number of brain tumor and childhood cancer organizations.

By Phillip McCorkell

Diagnosed with a Medulloblastoma at age 5 (1966)




Courage from Within
The mind can have tremendous control of the body; very few ailments

can defeat focused energy and a determined spirit.



Katherine Lambert-Scrone

Diagnosis
I will always remember that horrible day, Friday, March 7, 2002. I was fourteen years old and it was the day before the March Break. It was also the date of my diagnosis. Prior to this date, I had been going for routine MRI scans to monitor a minor growth in my pituitary gland, which had stunted my growth. Aside from being growth deficient, I did not show any signs of having a brain tumour. Dr. Bouffet had called to inform me and my family that the MRI results had changed and the thickening on the pituitary stalk or “thing” as he had originally named it, had erupted into a tumour. At that moment, it seemed as if time had frozen and the rest of the world had melted away. Before I knew what was happening, I began going for more tests, scans, and blood work. The final test was a biopsy and after five hours of surgery, the pathology reports concluded that the initial diagnosis of the possible types of tumours were all incorrect. I was diagnosed with Primary Central Nervous System (CNS) Lymphoma in the Pituitary and transferred to a different “team” of doctors. This was such an extremely rare diagnosis: I was the second recorded person in the world to have what I had in the location where I had it. I was told the treatment plan was a six-month protocol of intensive, aggressive chemotherapy. I regarded each phase of treatment as a battle and my struggle to beat cancer was a war.
Perspectives About Diagnosis

Honestly, until a friend brought up the topic, I didn’t regard the brain tumour as cancer. It was malignant and cancerous. I didn’t want anyone to regard my illness as cancer and I didn’t want any pity. I wanted people to refer to it as a “brain tumour” because I was able to envision it as a small mass in an enclosed area that was vulnerable to being a target. My perception was that I could shoot at this target and break it up by staying strong and determined through the fight. I felt “cancer” was something that could win over me because of how it is perceived and depicted by society. However, not everyone with cancer dies and those who believe this are ignorant and misinformed. Regardless of this fact, I believed I could fight and beat a brain tumour whether or not it was cancer.

Getting Though It
Maintaining a strong support system was the key to getting through treatment and winning all the battles. Although I relapsed about eight months after the completion of treatment, I was strong enough, well-informed, and determined to fight hard again. The second time in treatment I faced three months of extremely nasty chemotherapy, an autologous stem cell transplant, and five weeks of daily radiation. I am currently almost two and a half years post treatment and I am thriving. I have completed high school and graduated in June. I am looking forward to the next chapter of my life as I will be entering university. I am an advocate for myself and I have learned the importance of spreading cancer awareness in my small community of family, friends, and peers.

The Journey

The journey through treatment both times was incredibly difficult and no one should ever have to go through this kind of experience, but I don’t regret having to go through it. I learned a great deal about myself, gained unique life experiences, and I met so many other remarkable individuals, including other patients and staff members at Hospital for Sick Children. Life itself is a journey and not a destination and needless to say, my life wouldn’t have been the same if I hadn’t gotten sick. It was a part of my life from which I cannot escape or try to conceal. I can now take these life lessons and embrace them. I have accepted that cancer was a part of my life and that it is no longer the only thing in my life. Each scar represents hardships and challenges that have been overcome and with each story depicting a part of the journey, an accomplishment can be recognized and celebrated. Brain tumour survivors have the opportunity to promote awareness and help others understand that there can be an end to the numerous battles and a light at the end of the tunnel where success can be reached. Inspiring others creates hope and with hope, we will be able to develop better treatments and more cures for brain tumours. Imagine a cure!

By: Jessica Riesz

Diagnosed with Primary Central Nervous System (CNS)

Lymphoma in the Pituitary at age 14 (2002)




Moving into the Fast Lane!
The transition into middle school will be the hardest change kids experience during their school years… compare to this the first day of high school is a piece of cake.

Allan Mucerino, Principal, Ensign Intermediate School

Moving from an Independent School of 130 students to a Catholic High School with over 1000 students can be a frightening experience. When none of your friends come from your small school it also can be very nerve-racking. It is like moving from a small side road in the country to a highway in a busy city. The acceleration is intimidating but exciting at the same time. I found the best way of dealing with my mixed emotions is to go with the flow. Attend all your classes with an open mind. When you move from grade school it opens a whole new chapter of your life. You need to bring your courage, strength and your willingness from the last chapter to the new one! Be willing to meet new people and work hard. Although the work may become challenging, have the strength to seek help from guidance councilors, teachers or even friends and family.


Remember you only can experience that day, that month, that year once in your lifetime. Live and enjoy your high school years the best you can!
By Alex McLeod

Diagnosed with an Ependymoma at age 8 (2000)




The Fight of A Lifetime
Courageous risks are life-giving; they help you grow,

make you brave and better than you think you are.

Joan L. Curcio

My name is Christina Racippo and I am 24 years of age. I was originally diagnosed as a 9 year old in September of 1991. My tumour is called a Hypothalamic Astrocytoma, which is a low grade, benign tumour, but malignant in it’s location.

I was admitted to the hospital through a family doctor’s visit, seeing that I had a terrible headache on this day, and had passed out from the pain. The previous weeks, I had mentioned to the doctor that I was seeing “black spots in front of my eyes” every so often, but I had ignored them because I thought that I was reading too much, since I loved to read. My family doctor was concerned because he saw unusual pressure growing at the back of my eyes, so without further question, I was admitted to The Hospital for Sick Children in downtown Toronto.
From there, the doctors performed a series of tests, the most important one being the CT scan. They detected that I had a brain tumor mass the size of a golf ball, and needed to perform emergency surgery, but because of the pressure on my brain, I had to go on steroids.
After the surgery, I had to go into a rehabilitation center for 10 months to re-learn how to function normally again, including how to walk and talk. I also lost the full use of my right side, meaning that I could no longer write with my right hand. I learned to adapt my left hand in its place.
Thankfully, after extensive occupational and physiotherapy, I was able to be put back into the mainstream of things, and was successful at the academic level. Of course, I had to work much harder, and my memory was affected, but I succeeded, through my faith, supportive family and much determination and perseverance.

In 1999, through an annual MRI Scan, it was detected that my tumour had grown back to its original size when I was sixteen, so again, I underwent the same surgery, and a week later, a VP shunt was inserted. With technological advancements occurring daily, I didn’t need to have as extensive an amount of therapy from the last surgery, but again, I missed a couple months of school. I managed to graduate with my class at the end of the year. Since the last surgery, I have been doing great. I recently graduated with a Diploma in Early Childhood Education, and am currently seeking employment in a child care setting.

I am and always will be grateful to all the wonderful people I have met through b.r.a.i.n.child which has been an important source of support and information, especially to my neurosurgeon, Dr. James T. Rutka and his staff, for performing my surgeries. I call him my Hero on earth! I still have residual tumor, which is monitored annually. It is a very stressful time, hoping that it has not grown back, but in the meantime, I know that I have been blessed to have survived, as I have a lot to accomplish!
My motto has always been: “Never give up and pursue your dreams, because one day they will become a reality.”

By: Christina Racippo

Diagnosed with a Hypothalamic Astrocytona at age 9 (1991)

Dreams become Reality

Life Lives On


Believe life is worth living and your belief will help create the fact.

William James

My name is Bethany Marie Leslie, I am 15 years old, and was born on


September 4th, 1990. I was diagnosed with a brain tumour (medulloblastoma)

when I was 7 years old (1998). I received radiation and chemotherapy. It made me get sick quite often and the smell of the radiation while it was running wasn’t that great either. There was one thing that I absolutely loved when I was at the IWK Care Centre. I loved to go to the playroom and I loved to make new friends while I was there. I could be called a very friendly kid who just wanted to be everybody’s friend. I love to go shopping with all my friends; I am doing great in school with my lowest mark being a 72% in science, highest being a 95% in French. I am in many clubs including girls on the move, movie club, hip-hop dance class, scrap booking club and many more. I have a quote that I like, it goes like this......

                      Yesterday is history

                      Tomorrow is a mystery
                      Today is a gift
                      That’s why its called the present.

My favourite song is called "Sara Beth" written by Rascal Flatts, which happens to be one of my favourite country groups. My best friends names are Mercedes, Pauline, and Ketrina, and Katy, Chloe and many more, too many to list. I also have a boyfriend named Chastin. At the moment I live in Nova Scotia with my Dad, but in July 2006 I am moving to Carlyle, Saskatchewan to live with my Mom and to be with my boyfriend. Through all that has happened to me in the past involving cancer it has made me realize how precious life is and how important it is to live each day to the fullest. I have many bullies bullying me non stop at school but I have learned to realize that you just need to ignore them and worry about what is most important in life which to me happens to be my friends and my family and my boyfriend.

If any of you guys are reading this I want to thank you for being there for me when I was sick, but I want to give a big thanks to my Mom and Dad who never left my side since the time I was diagnosed. I also want to thank the rest of my friends and family including Auntie Deb, Uncle Joe, Jaimie, D.J., Grammy, and Grampy and all the nurses and doctors that helped me, but especially to one doctor that I will always be very grateful for having here on our planet. His name is Dr. Metta. You’re the best surgeon there is!!!  You saved my life!!!! "You’re my hero Dr. Metta"

By: Bethany Marie Leslie

Diagnosed with a Medulloblastoma at age 7 (1998)


What A Year!

Character cannot be developed in the ease and quiet. Only through experience of trail and suffering can the soul be strengthened, ambition inspired, and success achieved.


Helen Keller
Good day Mrs. Mintz and fellow students!
I would like to talk about a disease that is very horrifying! This disease is horrifying because it can change your life forever. This disease can make you sick to your stomach while you are going through treatment. While you are going through treatment, you end up losing all of your hair on your head. Can you guess what disease it is? If you guessed cancer, that is what I am going to talk about. I am also going to talk about a growth that forms inside your brain called a brain tumour.
Hello, my name is Alex McLeod. I am a brain tumour cancer survivor. I want to share my story with you. Do you know anything about brain tumours and cancer? Do you know how they affect children? Cancer is a disease that is a group of bad cells. The bad cells crowd the good cells from growing. Anyone can get this disease at any age or at any time. Most of all, cancer is not contagious. Different scans tell you that you have this disease.
I was diagnosed with a cancer called Ependymoma. My cancer was inside a tumour in my brain. My cancer and brain tumor was in a part of my head called the cerebellum. The cerebellum is the bottom part of you brain. I had my surgery on June 3rd, 2000 to remove my brain tumor. Doctors say you are a true cancer survivor when you have lived 5 years after having been diagnosed. I am 2 and a half years of being a cancer ‘survivor’.

My brain tumor was treated by surgery and radiation. Sometimes tumors can be removed like mine and some can’t. A lot of the time it takes the doctors many hours to remove brain tumours. This is because the doctors don’t want to damage your brain. It took seven hours to remove 95% of my brain tumor. Radiation is a way to treat brain tumours and cancer. It is a high-energy x-ray that kills the bad cells. I had two types of radiation; one is called stereotactic which went to the tumor spot in my head, and another type is called traditional which went to my whole head and spine. The radiation machine was big and loud and moved around my body. I only spent three minutes in the radiation room each day. I had radiation once a day for 6 weeks.

B.r.a.i.n.child is run through the Hospital for Sick Children. B.r.a.i.n.child and other organizations raise money to find a cure. Doctors at the Hospital for Sick Children are doing research to find a cure for Pediatric Brain Tumours. Last year there were over 100 children diagnosed with brain tumours at the Hospital for Sick Children. Everybody can help find a cure for brain tumours and cancer by raising money and by not using pesticides on their grass and food. The Cancer Society and the Terry Fox foundation are also support organizations. I am sure there are many more support organizations.

An important thing to remember if a family member or a friend has either a brain tumour or cancer is to think positively.

By: Alexandra McLeod

January 2003 Grade 6 Speech

Diagnosed with an Ependymoma at age 8 (2000)


About the Editor



Alexandra McLeod is 15 years old and was diagnosed with a brain tumour in 2000. Alexandra lives near Barrie, Ontario with her parents and brother. She believes that if you live your life from your heart and share from your heart, your story will touch and heal people’s souls.

The Facts about Pediatric Brain Tumours

Over 100 children are diagnosed with brain tumours each year at Toronto’s Hospital for Sick Children. Brain tumours are the second most common malignancy in children after leukemia.


What is b.r.a.i.n.child?
b.r.a.i.n.child is a group of parents, family and friends who have the common experience of caring for a child with a brain tumour or who are survivors. B.r.a.i.n.child is a volunteer organization providing support, education and research funding.
For information about b.r.a.i.n.child, please call (416) 813-7974, email brain.child@sickkids.ca or visit us at www.sickkids.ca/brainchild.






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