A few words from Ghislain...
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Hi! My name is Ghislain. I'm 14 years old and I have cancer.
I decided that I wanted to live, that I was going to win this war against cancer. This is not the first time my life is threatened; the first time it happened when I was very young. Let me explain.
A doctor told us that a tumor is an abnormal growth. He said that, technically, a foetus, for example, is like a tumor. Many tumor-foetus die of a terrible sickness I call a very dangerous cancer for the foetus: abortion. The young lady that gave birth to me believed in life and wanted to protect it rather than destroy it. I want to thank my natural mother for what she did for me : she gave me life. She also knew that I would have a better life with a family that could care for me and love me.
I know it would have been so much easier for her to abort me, but, no, this brave young woman gave me life and gave me away so both of us would be better off. I have the greatest respect for her and I thank her. She also had a positive attitude towards life and I'm sure she gave me that attitude.
Is there hope for the foetus in pregnant teenagers? As long as there are girls like her who believe in life and are generous enough to give time and life, yes, there is hope.
That was my first victory over a deadly disease but I was not the one who was fighting. Now it's my turn.
The 20th of October 1994 is a very special date for me. I was going to CHEO for a CAT scan because I had headaches and pain in my tailbone. That's when I learned I had a brain tumor. My parents changed colour, it was funny. It didn't bother me, I didn't know what it was. All this was said in English and in English, the word tumor doesn't look dangerous; you don't say a you die like in French : tumeur =tu meurs = you die. That was on a Thursday. Saturday, I had an operation where they took out two tumors : one the size of an orange and one the size of an onion. My parents were told my tumors were cancerous and my dad told me the next Tuesday when I left the intensive care unit.
There are many kinds of brain tumors; mine is special. The majority of those having the same cancer I have are adults and they have it in the back, not in the front like mine. The name of my cancer is astrocystoma. We add grades to that : 1,2,3or 4. 4 is the worst and that's mine : astrocystoma grade 4 orglioblastoma multiforme. I have cancer in the brain and in the backbone.
I had chemo early November, early December and early January 95. Chemo is different for everybody. In my case, chemo meant having very strong chemicals in my body for 72 hours. One of these drugs was so strong it had to be in a glass bottle and the nurses had to wear 2 pairs of gloves to handle it. The medication came through a porth-a-cart placed under my skin. I'm lucky because, when I have chemo, I only have nausea, that's it. Some kids get sick. From the end of January till mid-March 95, for 5 1/2 weeks, I had radiation at the General or sometimes at the Civic. Usually, people receive radiation once a day; I had it twice a day.
Last summer, my blood was dropping and dropping; in August (95), they took an MRI and a bone marrow aspirate that showed that my tumor at the neck level was growing and that I had cancer in the bone marrow. They checked my internal organs to see if I had any cancer in the stomach and around but everything was fine. We were hoping that the cancer in the bone marrow was something simple like an ALL leukemia but, no luck, it was from my brain : the cancer had gone outside the central nervous system. Since school started last September, I took 8 chemo sessions. The October MRI showed the neck tumor was smaller and that everything was stable in the brain. In January, I hardly had any cancer in the bone marrow and my blood was better. The bone marrow aspirate of April 23rd showed that there was more cancer. I need platelet transfusions every week. I was supposed to have chemo on April 15th but my blood was too low.
With my new symptoms, the doctors decided to give me radiation for 10 days, and only once a day. That went fine. I also had a single dose of radiation on my knees because they also found out I had bone cancer in the knees.
Aside from hospital medecine, I've tried just about everything : prayers, a trip to Lourdes, France, to the Vatican in Rome, homeopathy, accupuncture, Essiac and other natural remedies, and 714-X, injections my mom gives me.
My mom also gives me injections of G-CSF to stimulate my white blood cells, after chemo. This stuff is really expensive : it costs $2,400 for ten small vials of 1.6 ml each. Thank God for insurance.
Cancer has given me good things too, like the trip the whole family made in Italy with the Wish Foundation. Kids who have a life-threatening disease can ask the foundation for a wish. Some want to meet an actor or an athlete, to have a computer or to go to Disneyland. My wish was to go to Italy becauseboth my natural parents are Italians. It was an extraordinary trip I'll never forget and I am very grateful to the Wish Foundation.
When I learned I had cancer, I saw how life was important, each minute counted for me and my parents. When I learned I had cancer and when I learned I had cancer in the bone marrow, I could have been discouraged and negative but I decided to be positive.
I have cancer and there's nothing I can do about it. I can't change the weather, either. However, I'm the one who decides how I am going to react. I'm the one who decides if I am going to be happy or not because of my little brother, of the food, homeworks, the weather or cancer. I am responsible for my good humour. I don't let cancer and negative ideas take away my good humour, my will to live, my joy of living. I am responsible for my life, for the quality of my life. I am responsible for my health, I am responsible for getting my good health back. In October 94, I decided that I had 95% chances of surviving and that's what I'm going to do. It is very rare that I am not in a good mood and I'm sure that because of my good mood and of my positive attitude, the healing is so much better. People were coming to see me at the hospital and I made them laugh. I made and am still making many doctors and nurses laugh.
Of course I asked myself the famous questions : why me? Why is there kid's cancer? Why is there misery? Why is there pain and suffering? We don't know. I don't know. I have done nothing to attract this disease. I have done nothing to deserve this cancer. Nobody deserves a cancer but when I seepeople, especially teenagers that do not take care of their health or abuse their body or have habits that invite cancer or other diseases, I ask myself some more difficult questions : why hurt oneself? why tempt cancer? why play with cancer? Do these people really want to live?
I learned that even teenagers, even kids are not immortal. I think of Chloe, a beautiful young girl who had a brain tumor and died in April 95. She was three. I also think of Katrin who also died of a brain tumor and who told her parents once, after seeing LION KING for the nth time : If I die, don't worry,somebody will take care of me. I also think of Susan who decided not to have any more treatments and died two rooms from mine at the hospital. I think of all the other kids I know and who died of cancer.
It is true that many survive. It is also true that not everybody makes it. I fight to stay alive and it really pisses me off when I see young people taking risky habits. What the hell are they doing?!? If I'm still alive, it's obviously because God wants me to be alive. It is also because I have this strong will to live, because I am special, because I am loved and I have lots of support.
What's important in life? For me, it's to have fun, to have a good quality of life. To have this quality of life, I think first of all, you have to want to live. I want to live and for a long time. The second thing you need is to feel special. Giving me the chance to talk to you today tells me I'm special. My doctors, my nurses and my family often tell me I'm special. Last, but not least, it's important to know you are loved, and to have support. I'm lucky, I have lots of love and support from my family, my friends, school, thehospital, my parish. I know there are a lot of people praying for me and I thank them.
I felt this support and this love very strongly on October 6th (95) when 230 showed up for a celebration of life, to celebrate my life after a year with cancer. I had my picture on the first page of the newspaper, I was on the T.V. It was like a beautiful dream that keeps on living because that evening brought us $1,300.00, money that is used to renovate an isolation room at CHEO. An isolation room is where you have to go when you're contagious or when your blood counts are too low. You have to stay there, you can't go around and talk to the others. It's a boring place to be but we want to make it a fun place. It's very beautiful, it's not finished, but it's coming along just fine.
Speaking of hospital, being at the hospital is something, but being at the 4 east is something else. You see, 4 east is reserved for cancer patients. I'm 14 and you probably think that it's young to have cancer and you're right but I'm telling you that I'm always one of the oldest on the floor. Some are 2 or 3 years old. I even saw one who was 2 months old. It's hard to see very young bald kids walking around with their IV pole. It's beautiful to see them smile, though and it's fun to hear them laugh. It's hard to see some kids who have little or no visits. It's hard to hear them cry, they're too young to understand. I'm lucky, I'm older and I understand. Don't get me wrong : it's not fun but at least I understand.
One other thing that I find difficult to deal with is when people don't understand or are not comfortable around me because I have cancer. What's fun and helpful is when people talk to me. It's true I have cancer, but I still am and always will be Ghislain : you can talk to me about everything and anything, I love to talk. Don't be afraid of my kiwi haircut, it's not contagious and neither is my cancer. If you meet someone who has cancer or aids or another disease, don't forget that, above all, there is a person who wants to live, maybe more than some who don't get a kick out of life, that this is a person with emotions, tastes,interests and needs, with something to share and to give. Be natural around us. You can help to improve our quality of life and maybe yours too.
Is there any hope for people with cancer or with aids? As long as we are treated like people, yes, there is hope. As long as research continues, as long as people care for us and love us like what I have at home, at the hospital and at the parish, yes there is hope. As long as people are going to keep on giving us their prayers, their time and their blood, yes there is hope.
I compare my disease to a roller coaster with its ups and downs except that you're all alone. Yes, there are people who support you, but you're alone in your roller coaster. A real roller coaster stops after 2 minutes; mine doesn't stop, you can't get off. Sometimes it goes faster and faster, sometimes, it's dark, so dark it's frightening. Sometimes it's full of curves that just keep on coming, and at other times, it's easier to take. I've seen some lucky ones whose roller coasters stop and they get off : they're cured. I've also seen some who are so fed up, they jump off. I also see roller coasters that keep on climbing to heaven.
Cancer is a big word, no, it's rather a small word that is frightening, that causes suffering, that makes you think. The doctors say there are about 200 kinds of cancers. I think there are really just two kinds : the kind that hits you like a ton of bricks for no reason, just like that, without having done anything and then of course there's the kind you run after.
We live in a strange world where people with cancer fight to stay alive while healthy people try to have cancer by smoking, by not eating well, by taking too much sun, etc.
It's been a year and a half that my parents and others pray for my well-being. What is my well-being? To be cured? Or to join Chloe, Katrin and the others? Is there any hope for me? Yes, there is hope, because my hope is my well-being. I don't know what it is and it scares me, but I have hopebecause I believe in God, I believe in Life.
Everybody has problems, small ones and big ones like the decision to abort or not, sickness, a lack of love, solitude, suicidal ideas, etc. We can choose the easiest solution and go with the flow (always downhill) or we can decide to fight and to live. Life is difficult but it is worth living for, worthfighting for.
If we can avoid diseases, then let's do it. Life wants us to live it at 100%, not to limit us by our own fault. We can limit ourselves by bad habits like cigarettes or other drugs or by stressing ourselves for nothing.
Even if he forgets it from time to time, it's my dad who taught me to live one day at a time. Today, I think of today, I live for today. I am well today, I enjoy myself today. We'll see about tomorrow...tomorrow.
I'm special, we are all special, let's not forget that. Is there hope for kids? As long as we know and are reminded that we are special, yes, there is hope.
To conclude, I would like to wish you a long life, a full life and a
happy one, with a positive attitude. I wish you a good quality of life,
a life with lots of love and support.
Ghislain Cayouette, May 1996