Age at Diagnosis: 11 (2001)
How did you find out you were sick? What events led to the diagnosis? In May of 2001 I had several fevers. The Doctor thought I had strep throat and I was on Antibiotics for 10 days. I still had some fevers, and I was really pale and tired. My mom and dad noticed I was still tired and looking really pale. They thought I was not over the strep throat, so they took me back to my family doctor on May 23, 2001. My family doctor, Tom Rossiter, didn't like my colour either or that I had been tired. He thought it might be any number of things, but to be on the safe side, he sent me to the Janeway for a blood test. It was moving day at the Janeway but I had to go to the old Janeway for the blood test. By the time I got home, the hospital had called Dr. Rossiter, and Dr. Rossiter called my Dad and asked him to bring me to the new Janeway that afternoon. My mom, dad, and me went to the new Janeway where a resident spent two hours asking us lots of questions. Then he examined me. Then Dr. Hand came in and examined me. Then Dr. Hand took my parents to another room and told them I might have Leukemia. The next day they did a bone marrow test that confirmed I had Acute Lymphoblastic Leukemia (ALL). As soon as they knew for sure that I had Leukemia, Dr. Hand and my parents told me.
What year was it? What was your age at the time? It was 2001 and it was 5 weeks before my 12th. I was just finishing grade 6.
What was your diagnosis? Acute Lymphoblastic Leukemia (ALL)
What are your career goals? He hopes to someday become a Pediatric Oncologist.
What were your first thoughts when diagnosed? I was really upset.
How did your family react? They were all upset and cried a lot at first.
How did your friends react? My friend, Kaylene, was so upset, she didn't go to school the day she found out. My friend, Tia, was really upset and couldn't stop thinking about it. My friend, Tyler, was upset too. They were all worried. They didn't treat me much different, except they were more cautious of being around me when they were sick because I could get sick really easy.
What did your treatment consist of? Medical Side: I had to have chemo and at the same time they were checking to see if I had leukemia and if it had spread to my spinal fluid and the lining around my brain. It hadn't spread that far so I did not have to have radiation. I had to have chemo both through IV and injection. I was allowed to go home after the first week in hospital and I went back to the Medical Day Care unit to have my chemo as an outpatient. There were many different kinds of chemo drugs that I had, and every phase of my treatment was different at first. The first year month was really intense as they tried to get me in remission and the rest of the first year was really intense as well. Then in June of 2002 I started the maintenance part of my treatment. During Maintenance I have Methetrexate at home every Monday night except once every 12 weeks when I have to go to the hospital and have methetrexate injected into my spinal fluid. I have 6mp every night at home. Every four weeks I have to have Vincristine by IV at the hospital, and every time I do that, I have to take prednisone for 5 days. Sometimes I don't have any chemo because my counts are too low or my platelets are too low. If I don't have chemo for three or four weeks in a row, they have to do a bone marrow aspiration (biopsy) to check to see that everything is still okay in my bone marrow. I have had too many bone marrow aspirations that I don't want to count.
Non-Medical Side: During the first year when I had some really strong chemo drugs that would make be very sick, I felt really sad. They called one of the drugs red kool-aid because that's what it looked like when it was in the IV. This drug made me so sick that I can't stand the sight of red kool-aid and I can't drink red colored kool-aid. My hair thinned out as I started to loose it, but I didn't loose all of my hair until they gave me Doxyrubicin. This made my hair fall out including some of my eyelashes and eyebrow hairs. Then when my hair started to grow back, I had to have Doxyrubicin again and it fell out all over again. Every time I had a high fever and my counts were low, I had to be admitted to the hospital and put on IV antibiotics. It really sucks. The first time I had reactions. The antibiotics made me feel really sick. Then when we figured out why I was feeling so sick, they slowed down the rate at which the antibiotics went in and they didn't make me feel sick. So far I have had to be in hospital because of a fever about nine or 10 times. The last time was in January 2004 and I had to stay for nine days. The only good things about being in hospital, is that you get to meet friendly people, you talk to the nurses more, and I got to spend more time with my parents because one of them is always there with me. They take turns staying while the other works and takes care of my brother and sister at home. Having treatment is really tiring. I felt worn out. Now that we are on maintenance, I spend a lot of my time when I am at the hospital for treatment just waiting. I get blood work first, then I have to wait for the results. Then I have to wait to see the doctor. Then I have to wait for the pharmacy to send up the chemo. Then I have to wait for the nurses to give me the chemo. And there are lots of other kids there waiting too, so I have to wait for my turn. And when I am on Prednisone for five days every four weeks, it makes me hungry and have food cravings. I try not to eat too much and to eat healthy because I want to keep my body as healthy as possible but it is really hard when I am taking prednisone.
In which hospital(s) were you treated? The Janeway. Only the new Janeway because I was admitted on the very first day - moving day. I even got a T-shirt because I was the first new admission.
What is your current medical status? I was in remission after the first month. My doctors tell me when there is less than five per cent of the immature cells in my bone marrow, then I am in remission.
How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)? I am not post cancer yet, because even though I am in remission, I still had to have all of this chemo to make sure the cancer doesn't come back. I was diagnosed, officially, on May 24, 2001, the day after I was admitted to hospital. But my last chemo treatment will not be until September 10, 2004.
What is/was the toughest part of your challenge? Being sick from chemo and missing school. I got cancer when I was finishing grade six. I will not finish my treatment until I start grade 10. This means that the whole time I was in Junior High School I was having chemo treatments for cancer. It meant I missed a lot of things in Junior High. I think the hardest thing that I will have to adjust to in my life after cancer is not going to hospital every week. It is so much a part of my life and has been for so long.
What was the best part of your challenge? Learning. I have learned about cancer. I have learned about blood. And I have learned about ways to get involved with Canadian Blood Services and how to volunteer. This is important to me because blood did help save my life. I have had to have a lot of transfusions, both red blood cells and platelets. The people I met and the ways I helped out were all important and really great. I recently went to the wish bowl and gave out prizes. The wish bowl was raising money for the Children's Wish Foundation. The Children's Wish Foundation is giving me a wish and I am going to take my family on a vacation when my treatments are all finished. I also try to help the Canadian Blood Services. They have had two clinics each year since I was diagnosed, in my honour, to encourage people to donate. There is one each year in Mount Pearl and at the tax centre where my mom works. They told me that when the clinic is in my honour, more people give blood and that helps to save more lives.
What really motivated you to keep going while you were sick? Friends, family, and love for life.
What lessons or messages have you taken away from your experience? I will never smoke because smoking causes cancer and having cancer bites. I take better care of myself because I know how precious life is. Time spent with family and friends is more important than anything in the world.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis? I don't know. I don't think there's any real way to describe it. There's no "it's good" or "it's bad." there's no "I Like it" or "I hate it". I just can't express how I feel about cancer. I didn't really think about cancer before my diagnosis.
What are some preventative measures that people can take to lower their risk of having an experience like yours? Don't Smoke. Smoking did not cause my cancer but it does cause cancer. For my kind of cancer, there is no known cause and this means there was nothing I could have done to prevent this cancer. But when you know something does cause cancer, you should not do it. This means - Don't Smoke!
Did you attend any support groups during your challenge? No.
If you did not attend a support group, why? They wouldn't let me in. There was one support group but it was for parents only. They would meet sometimes on Mondays at the hospital while I was there for treatment.
How are you connected with Young Adult Cancer? My sister and brother did take part in the Real Time Cancer Climb. I met Geoff at Camp Delight, the camp for kids with cancer, their siblings, and bereaved siblings. We were sitting around in a group having a discussion about cancer. I think Realtime Cancer is good. It helps kids learn about cancer.
If you are interested in connecting with Jared Pope please email firstname.lastname@example.org.