Our story begins on October 13th, when our beautiful baby girl Gillian May Berthelot was born. She was our first child and she had a lot to teach us about being parents, being a family and learning to love. Gillian first introduced us to the hospital scene and SickKids when she was only 10 months old. Gillian had a small problem with her left kidney that would eventually correct itself. When she was 17 months old she began to have Febrile seizures. Luckily for us, she outgrew those by the time she was 2 ½ years old, but she did manage to give us a few scares along the way!
In May of 2009, when Gillian was 7 ½, she was diagnosed with Rhabdomyosarcoma. It was the day after we had returned home from a family trip to Disney World. Before we left for our trip, we had discovered Gillian’s mass due to pain in her abdomen. We had a referral to the General Surgery Department at SickKids, but they could not see us for three weeks. With much stress and a few different doctors recommendations we decided to go ahead with our Disney trip with the understanding that we would be extremely cautious of Gillian. We had an amazing time, but as our week progressed in Disney, Gillian began to experience more pain. On the evening that we flew home from our trip I took Gillian into SickKids Hospital in Toronto, Ontario. Her mass had grown substantially in that 2-week period. They took a chest x-ray that night and admitted us to the surgical floor – 5B. The next morning our surgeon told me that Gillian had lesions in both of her lungs and that is was most likely cancer. Our lives changed forever at that moment.
The next few days were a blur of tears and tests and more tests. Gillian just wanted to go home, because she had gone from a plane into SickKids. She just wanted to be in her own bed and to see her house and stuffies again. Gillian underwent her first surgery on day 2, where they took 17 different biopsies of her tumour and put in her port. On Friday May 8th, Gillian got her diagnosis: Stage 4, Embryonal Rhabdomyosarcoma. At the time of diagnosis, her tumour measured 17x15x9 cm. We sat through a "Welcome to Cancer" meeting in absolute shock. We were terrified and we had no idea how we could ever get through this. Gillian was only 7, her sister Madelyn was 5 and her baby brother Ethan had turned one 2 weeks earlier.
We got our treatment schedule, which would include 14 rounds of chemotherapy, surgery, and radiation to the pelvic region and to the lungs at the end of treatment. This was an aggressive cancer that required aggressive treatment. Her treatments were expected to last one year.
Gillian began her first round of chemo that night. She would have chemo every three weeks and there were two different alternating chemo cycles. All of her chemo was administered as inpatient, which meant that she missed her siblings and friends. Her chemo schedule meant one week in the hospital and then 2 weeks at home, with blood work one or two days a week. Gillian quickly settled into cancer... not that we were given a choice. We learned the routines of surviving SickKids and we were amazed at how much there always was to do.
Gillian responded very well to her chemo treatments and after 5 rounds of chemo and a week at Camp Oochigeas in Muskoka, Gillian’s tumour had shrunk to an operable size. Gillian came through her surgery like a superstar. She amazed us each and every day. After spending three nights in critical care we came home for a break, because she was to have chemo after only 7 days post op. To successfully remove her tumour, her bladder was cut and she needed a catheter for 12 days until her bladder could recover. Even with her catheter, we couldn’t slow Gillian down. She went everywhere with her catheter strapped to her leg, she wasn’t afraid of anything.
Our next obstacle was radiation. Gillian would need radiation to the pelvic area to destroy any remaining cancer cells. That was by far a meeting we were not prepared for. We walked out of that meeting understanding the lifetime effects and consequences of childhood cancer. In September Gillian began her six weeks of daily radiation treatments. We had early morning treatments so that Gillian could go to school on the afternoons that she felt up to it as she didn’t want to miss her friends. Gillian continued with her chemo schedule during her radiation treatments. We were so happy when our daily commutes to Princess Margaret hospital for radiation were finally over. Gillian used to skip through the adult cancer hospital with a smile always on her face. Even on her 8th birthday, when she still had to have her treatment, she smiled and did what she needed to do. She did not have any side effects from the radiation, and in her opinion it was much easier than chemo.
Gillian’s chemo schedule worked out well, so that we did not have to spend any time over Christmas in the hospital. But on January 4th 2010, when we were expecting to be admitted for chemo, our world was knocked upside down again. A routine post radiation CT scan revealed that Gillian’s cancer had returned in her lungs. This was very bad news that her cancer had returned on full chemotherapy treatment. This news also reminded us why cancer is called a battle. Gillian underwent another cycle of tests including a lung biopsy, bone scan and a bone marrow aspirate. The good news was that the cancer had been contained to her lungs. We immediately began a new chemotherapy protocol with different drugs. Gillian would receive chemo every three weeks, but only for a few hours each day as an outpatient. This meant commuting to SickKids for five days, every three weeks. Gillian preferred this chemo protocol because it meant that she could spend more time at home with her brother and sister, and she could attend school occasionally too.
After seven weeks a CT scan revealed Gillian’s cancer was continuing to spread. After many sleepless nights and many difficult decisions we decided to try one more chemotherapy option. This protocol was given as outpatient chemo very similar to the previous protocol. In the mean time, we began to plan for a Wish Trip.
Gillian had three wishes. First she wanted to see real Panda Bears, secondly she wanted to swim with dolphins and lastly she wanted to go on the Tower of Terror in Disney (because she had not been allowed when we were in Disney last spring.) The Children’s Wish Foundation was able to grant all three of her wishes in one amazing trip to California. We went to Disneyland for two days, Sea World and the San Diego Zoo. It was the trip of a lifetime, a trip full of amazing experiences and memories. Our trip was so meaningful, but also scary at times. Our future as a family was so fragile and unknown.
In April, we were informed that the chemo had been unsuccessful. Our only options now were to try an experimental drug and naturopathic options. After only one week on the experimental drug, Gillian’s cancer had spread rapidly and she was unable to tolerate the medication. She was removed from the experimental drug trial and we were referred to the Palliative Care Team. This was the worst news and we couldn’t even wrap our heads around it. We were not ready to give up, and so we began naturopathic injections three days a week. Gillian certainly didn’t look sick and she didn’t seem sick so we kept faith that we would receive a miracle. But as the month of May progressed, we began to realize that we were going to lose our amazing Gillian. It was so surreal – we had been through so much and she had overcome every obstacle with a smile on her face- it just didn’t make any sense. There was no reason, and no meaning, but this was God’s wish. He needed his best angel to come home. Without giving up hope, we told Gillian and Madelyn what we were facing. We stayed strong as a family and celebrated each day we had together, and at night we cried ourselves to sleep. Gillian stayed strong right until the very last day. She underwent more radiation treatments, to relieve her symptoms and pain. We continued to have adventures and enjoy life every day. Three days before she passed away we were still going strong at the Toronto Zoo living life to the fullest.
On June 23rd, 2010 as heaven prepared for her to come home, an earthquake occurred in Southern Ontario and heavens gates opened. An hour later we said good-bye to our beautiful angel, who was on loan to us for far too short of time. Gillian was so much to so many people. She taught us all so much and she amazed us every single day. We are so proud to call her our daughter, our sister, our granddaughter, cousin and friend. Gillian did cancer well... but cancer didn’t do Gillian well.