Childhood cancer impacts everyone one way or another. Every kid is someone’s sister, brother, cousin, neighbor, friend or child. My inspiration is my big sister Jill. Before she was diagnosed with cancer I had no idea what childhood cancer really entailed or what these kids and their families really go through. The devastation of someone so young and so close to you being diagnosed with such a harsh disease can be unbearable. Seeing how brave my sister was and how brave all of the other children battling cancer are has truly inspired me. I wanted to share with you, my sister’s battle with cancer and how one of the charities I support through my Childhood Cancer Awareness platform; The CANDLELIGHTERS Childhood Cancer Support Programs Inc. helped her and supported her through this experience.
My Sister’s words:
“Hi, my name is Jill Barr and I am going to share with you my experience with cancer and the huge role the Candlelighters played throughout my diagnoses.
It all began 7 years ago, November 2009 at the age of 11. I was playing hockey at the time and it was body contact. During one of our games, I collided with a guy who was much bigger than me and we both fell to the ice. When I got up I began to feel pain in my lower back and stomach. I just thought that I was sore from the hit I had taken, but it had got to the point where it became painful to sit or walk. Along with the back and stomach pain I started to feel sick, but it was during the swine flu epidemic so I just thought I had the flu. So I toughed through a few days of sharp stomach pains and nausea and I woke up one morning feeling much better so I decided to go back to school. I spent the whole day at school feeling normal, but then I woke up in the middle of the night in excruciating pain. While I was in CHEO going through treatments or recovering from a surgery the nurses would always ask me, how’s your pain on a scale of 1-10? 1 being no pain at all and 10 being the worst pain you have ever felt. Well the pain I was feeling that night was an 11.
My mom rushed me to the hospital where they got me into a bed and hooked
me up to an IV so they could give me medicine for my pain. They took me in for an ultra sound to try and find out what was causing this. The results showed I had what they thought was a 10cm cyst on my left ovary. After determining the results they rushed me to CHEO by ambulance where I waited for my first ever surgery. Anyone who knows me well knows that I have always been a bit of a dare devil and I never show much fear, but I can honestly say waiting for that surgery was one of the most terrifying times in my life.
The surgery was initially supposed to be laparoscopic, but the mass on my ovary was ruptured by the first incision so they had to make a large incision to stop the bleeding and remove the mass. This frightened my parents because what was supposed to be a simple hour long surgery turned into a 3-4 hour surgery. I spent five days in recovery at CHEO then I was able to go home. I spent about two more weeks resting at home then I was back to school. Everything was going well for me again and I was back to my normal life just being an 11 year old girl. Little did I know that the results of the biopsy were going to show that the mass taken from my ovary was cancerous. This news devastated my family and really confused me. I had no idea what to expect, I had never experienced anything like this before. I remember telling my friends for the first time at school and feeling really nervous about what they were going to think, but I remember feeling positive about how things were going to go for me.
After I was diagnosed things began to move quickly in terms of medical procedures. I had to get a pic line inserted into my right arm so they could administer the chemotherapy. I was awake for this procedure and it was fairly painful and uncomfortable because to insert the pic line the approximately 2ft tube had to be fed up through my vein. Next I had a very long and complicated meeting with my oncology team and social worker about what I was going to have to go through next such as my chemotherapy treatments, illness, and side effects both short term and long term. They told me I was going to have three chemo treatments each three days long and 21 days off in between treatments.
On December 20th I was admitted into CHEO for my first chemo treatment on the oncology floor. Almost as soon as they began the treatments I became very sick and tired. By day two I was so sick they had to give me a lot of anti-nausea medications so I was pretty much out cold for the remaining time I was in the hospital. After what felt like forever I was able to go home on the afternoon of Christmas Eve. I hadn’t eaten for three days so I was supposed to try as soon as I got home. I asked for ham and cheese buns for Christmas Eve dinner, but instead of eating I fell asleep in mom and dad’s bed and when I woke up it was Christmas. That was the first night as a kid I had ever been able to fall asleep early on Christmas Eve. When I woke up Christmas Day I was very tired and sick so I sat on the coach and my sisters helped me open my presents. A week later when I was feeling better we went to put my presents away and I realized because of my medications I didn’t remember anything I had gotten so it was like Christmas all over again.
After my first treatment I began to lose my hair very quickly. This was very scary for me because as an 11 year old girl my hair was everything. I would wake up in the mornings and my hair would be on my pillow instead of on my head. I tried to hold on to it for as long as I could but I knew I was losing it whether I liked it or not. So we asked one of our good neighbors who is a hair dresser to come to my house and she cut it all off. I was sad, but at the same time I knew that losing my hair was the least of my worries because I knew I still had two more treatments ahead of me.
The next two treatments were pretty much like the first. I was constantly sick, tired and would sleep the days away. Although I had terrific care and was surrounded by such kind people at CHEO all I ever wanted to do was go home. My time in between treatments was controlled by how I was feeling and whether or not I was neutrapenic. If I was, I was unable to see anyone outside of my family or go places and do things. When I was lucky enough for my blood counts to be normal we tried to do as many fun things as we could.
When I finally finished my treatments at the end of February, it was the best feeling I have ever had. I was so happy to be done with hospitals and sickness for a while. My life was basically back to normal minus the monthly doctor visits, frequent scans and blood work. I was back at school and my hair had even begun to grow back almost into an ash blonde colour. 6 months later on June 11th 2010 my parents got a fax with my blood work showing that my tumour marker levels had risen. After a follow up MRI at CHEO we found out I had relapsed. This time knowing exactly what to expect and what I was going to be put through we were even more devastated than the first time. I couldn’t believe that it was actually happening to me for a second time and there was absolutely nothing I could do about it. So we had to sit through another tough meeting with the oncology doctor where we were told I was going to have 2 week long cycles of chemotherapy, a surgery to remove the new tumor, then three more week long rounds of chemotherapy. This was hard to hear because the chemo was going to be more aggressive and I was going to be hospitalized for longer each time. This was going to mean a lot more tests, scans, and checkups to make sure this new, more aggressive chemo treatment wasn’t damaging my hearing, and internal organs.
Shortly after we were given the news I was admitted into the hospital for my first round of chemo on Canada day 2010. It pretty much went how we expected, I was sick, tired and practically slept the week away. Then I was sent home for 21 days. Before heading back for my second round of treatments I began to lose my hair again. I wasn’t as upset about it this time because my hair was already short and I considered it a minor side effect. My second round of treatments was very similar to the first because by then it was like clockwork. This time the big concern was to keep my platelets and red bloods cells up in between treatments.
After I had recovered from my second round of treatments I had to undergo another surgery to remove the tumour. After looking at the tumour all my doctors had a meeting and decided that radiation would also be an effective form of treatment. I had three more rounds of chemo over the course of three months. The treatments went fairly normal except for the one scare I had where I lost my breath, so they thought I was going into anaphylactic shock and I got to meet the entire spot team.
I didn’t really get a chance to recover from my last chemo treatment before they had me started on radiation. I had radiation every day except for Saturday and Sunday over the course of four weeks; a total of 20 treatments. I would go to radiation in the morning and the treatments only took about 10 minutes so I could still make it back to school for the afternoons. We live about an hour and a half away from CHEO so as you could imagine, we did a lot of driving during this time.
After I finished radiation the doctors told me that they were going to remove my second ovary as a precaution. My surgery was on February 10th 2011. I had to be at CHEO for 6am that morning so we stayed at Ronald McDonald House the night before. During my surgery my bladder was punctured due to scar tissue in that area. This meant more recovery time in the hospital and I would have to have a catheter until my bladder was able to heal. The good news was, this surgery marked the end of my battle with cancer. I was ready to put all of it behind me and move on to bigger and better things. I was so happy to be free of cancer and I know I couldn’t have done it without the amazing support of my family and friends, my community and an incredibly special organization called the Candlelighters.
The Candlelighters supported me both financially, and emotionally. The first encounter I had with the Candlelighters they provided me with a laptop I could keep during my treatments so I could use it for the homeschooling and stay in touch with my friends which was very important to me. The Candlelighters also provided my parents with coffee cards, important information and a blow up mattress for the hospital room. My Dad’s self-employed and my Mom had to be off work to support me so that was a financial worry that the Candlelighters helped us with. The Candlelighters informed us about how childhood cancer can affect the whole family and where we could go if we needed any kind of help. Due to the amount of times we were going to be at CHEO the parking fees were going to get fairly expensive, so the Candlelighters gave us a parking pass. Besides the fact that the parking pass helped financially, it also made getting out of CHEO a whole lot quicker. This was huge for me because at the end of my treatments you couldn’t get me out the door fast enough; I just wanted to go home. They gave my family and I things to look forward to such as Sens games and concerts in the Candlelighters suit and events like the Christmas party were we got to meet Chris Phillips. I believe that this is the most important thing the Candlelighters do because it gives cancer patients an opportunity to escape from hospital life and do something fun that includes the entire family. What this organization does is takes a child who is battling cancer and gives them what they want the most; to just be a kid and have fun. Even though I am done with treatments the Candlelighters still continue to support me.
Going through cancer is horrific and going through it as a child is so devastating and scary. My family was my rock, my friends were supportive and my community at large was an amazing help to my family. Cancer affects everyone! I hope that by sharing my story, I have encouraged at least one person to get educated about childhood cancer or even better to donate or get involved with a childhood cancer charity.”
My sister Jill is my HERO and why I lobby so hard for Childhood Cancer Awareness! I appreciate Jill telling her story to my readers. She is an ATHLETE, soon to be a High School Graduate and University Student, a PAGEANT girl, a SISTER and a CHAMPION!
In the coming segments of my CHILDHOOD CANCER AWARENESS Blog series, I will be interviewing my family members, Jill’s friends and a community resident to share how Jill’s diagnosis affected them because CANCER AFFECTS EVERYONE!
Kathleen, Miss Teenage Eastern Ontario 2016