In early 2008, my five-year-old daughter Madeline started feeling unwell. She seemed to be catching lots of colds and was often complaining of stomach trouble. At first, the doctors believed she was having some digestive problems and sent her for a variety of tests, but all the tests they ran came back indicating that nothing was wrong. Seeing as Maddie was just five years old, the doctors then started to consider that maybe her symptoms were more emotional and that maybe she was just trying to get our attention.
By May, Maddie’s symptoms were getting worse and she was throwing up every single morning. When this first started happening, she would throw up right after she woke up, but then she’d be fine and able to carry on with the rest of her day. As things progressed, she would throw up two or three times after waking up. We were really starting to worry, but because Maddie always felt better by lunch time and was not really losing any weight, the doctors were stumped. We were then referred to a pediatrician and sent for some ultrasounds. Six weeks passed. Then Maddie started complaining of headaches and being dizzy.
On Sunday June 15, 2008, Father’s Day, she got so sick and dizzy overnight she couldn’t sleep, so in the early hours of the morning I took her to the emergency centre at Children’s. The nurses did an assessment in triage and said Madeline was showing the signs and symptoms of meningitis because she had jittery eyes, which they call nystagmus, and her head was tilted to one side. A CAT scan was immediately ordered. After the CAT scan was finished, we went back to our room in emergency and I heard them page an emergency room doctor to come to radiology. I looked at my sister, who was there with us, and said “It’s bad.”
Soon after, a social worker and the doctor came into the room. The doctor knelt down in front of me and said, “We have found a brain tumour.” At that point, all I could do was say, “Thank you,” as it had been six longs weeks of illness and suffering for Maddie. I was just so relieved that they were finally acknowledging something was really wrong with my child and now I knew it was something that could be fixed.
Maddie was admitted right away and scheduled for immediate brain surgery to remove the tumour. Within 48 hours she was brought into the operating room for surgery. The eight hours it took to finish her surgery were some of the longest hours of my life. I remember thinking that day that the surgery to remove this tumour was taking longer than she took to come into this world.
Going into the surgery they didn’t know what the results would be. They told me Maddie might not be able to walk or talk again as they did not know how badly the tumour was enmeshed into her brain. As soon as the neurosurgeon came into the waiting room, I immediately jumped up and ran over to him. The first thing he said to me was that I could “Sit down.” I replied, “No, I am okay. I do not need to.” The doctor gave a back sigh and jokingly replied to me, “Well after that long of a surgery I need to!”
The results of Maddie’s surgery were super positive. She was breathing on her own and the surgeon told us that the tumour wasn’t quite as stuck as they had thought it would be. At this point we really believed everything was going to be all right!
The first thing Maddie asked for when she woke up in the ICU was Swiss Chalet. At this point we didn’t know if the tumour was cancerous or not. We spent ten more days in hospital, while she was recovering, waiting for pathology.
The results came back: Maddie had cancer.
She was diagnosed with an ependymoma anaplastic tumour. Because this type of tumour is a chemo-resistant tumour, the only option for recovery was surgery and radiation. Even though they had removed all of the tumour during the surgery, Maddie would have to do six weeks of radiation therapy as well, because they explained to us, removing the tumour is like scraping a bowl of ice cream and they needed to ensure they got every last bit of it.
We were also told Maddie had a 50% chance of the tumour reoccurring, but that if it was to reoccur, it would most likely happen in first year or so. The neurologist told us they would be monitoring her with MRI scans every four months, so if the tumour started to regrow, they could catch it quickly and she wouldn’t get that sick again.
Maddie started radiation about a month after her surgery. We went over to the Tom Baker Cancer Centre every day for radiation. At the beginning, the radiologist said she would have to be sedated as she was so young, but it was really important to us to work with Maddie, so she would not have to be sedated. The first time they tried to do her treatment she was far too scared and wiggly. I asked them if she could take a break and try again. While we were there, another little girl came down the hall who we had met on the unit. She also had a brain tumour. She was arriving for her daily radiation treatment. Her mom and I talked about it and her mom thought maybe if Maddie could watch her daughter have radiation, Maddie might be able to do it too. Maddie went in and watched this brave little girl on the screen and then she decided she would be able to go in and do her radiation – wiggle-free.
Maddie finished treatment on September 30th, 2008 and then waited. We returned to normal life and moved on. Every four months Maddie would go in for an MRI and the results always came back with no evidence of disease. We were absolutely thrilled. We hit the first year milestone – nothing. And then the second year milestone – nothing. We believed this is it, we’ve beaten it. So we let our guard down.
In 2010, everything was going so well. My husband and I bought a new house and soon after found out we were pregnant with our son. Maddie was super excited to be a big sister!
Maddie was scheduled for her routine MRI in April 2011, but we pushed it back a couple weeks, so I was able to go with her, as my due date was also around that time. A few days before she was to have her MRI, she vomited before school. At first I just thought she had the flu as it had been three years since her treatment and I never really worried anymore that the tumour could be back. After she threw up, she asked if she could go out to play because she said she felt much better. My stomach dropped and I started to worry. But then I convinced myself I was just being silly, because Maddie had just had a clear MRI in December.
Early the next morning, Maddie came into my room and told me her head hurt and she threw up again. I was on the phone with oncology by 8 am that morning. After hearing my concerns, the primary nurse told us that since we had an MRI scheduled on the following Monday, we should just wait for the MRI unless something changed or she got worse. Shortly after hanging up, her primary oncologist called me to see what was going on. I told the oncologist that Maddie was throwing up in the morning again and I could see that her eyes were doing the jiggling again. The doctor said she couldn’t justify an emergency MRI because one was already scheduled, but suggested we bring Maddie to the clinic the next day and they would do a CAT scan.
The oncologist who was on call in the clinic that day did a quick check and said Maddie looked really good and probably just had a cold. She went for the CAT scan and we sat there waiting and waiting and waiting. Finally, the doctor came out and gestured for me to come into his office. Once inside, he told me it looked like the tumour had come back. He explained they couldn’t see the extent of it on the CAT scan, but they said Maddie would probably be scheduled for surgery right away. An MRI was planned for that afternoon to see how bad it was.
One of the hardest things I have ever had to do in my life was return to the waiting room and tell Maddie that her cancer was back. She was just eight years old. I said to her, “Don’t worry, you beat it the first time. You can do this. And we’ll get through it.”
That afternoon they did the MRI and after another agonizing wait, our regular oncologist gestured to my husband and me to come in and talk with her. Just us.
On May 12, 2011, my husband and I were told the tumour had relapsed and metastasized to Maddie’s brain and all down into her spine and that the neurologist had determined that the tumour was inoperable. We were also told it was unlikely they could do more radiation due to the fact that Maddie had already had so much.
We were in total and absolute shock. We had a six-week-old baby and a daughter with an inoperable tumour. Our oncologist told us she would bring Maddie’s case to the tumour board next week and that she would see what options they could find for us.
They didn’t tell us that day that Maddie was going to die, but we all knew her prognosis was not looking good.
A week later we found out that the tumour board had agreed to enroll Maddie for a clinical trial, which was a chemotherapy trial for this specific type of tumour relapse. So we enrolled in the trial and went to the Stollery Children’s Hospital in Edmonton, where we started chemotherapy treatment. Luckily Maddie was able to do this type of chemo at home, so the treatment wasn’t too invasive.
All of the doctors and social workers started talking to us about quality of life for Maddie. We decided from then on, we would ask her every day what she wanted to do and, whatever she decided, we would do it. So we went to the Science Centre, we went to the Titanic Exhibit, we went shopping, we went to West Edmonton Mall and stayed in a theme room, and she dyed her hair pink and purple.
Maddie told us that what she wanted most of all was to see the ocean. We booked a trip to the Mayan Rivera for Maddie and 16 of our family members. Right before we were scheduled to go, she was so sick I debated cancelling the trip. Our doctor said to us, “She can vomit at home or she can vomit with an ocean view.” So we went. And she never got sick once. She was on the beach from sun up to sun down basking in the sun, enjoying her family and dancing. Every day at noon we went back to the room so she could take her chemo – otherwise it was the most memorable and wonderful family vacation.
On Saturday June 25th, 2011, just six days after returning from Mexico, Maddie collapsed at home and was rushed to the Alberta Children’s Hospital by ambulance. She had severe hydrocephalus, an accumulation of fluid on the brain. In six weeks the tumour had grown five times the size it had been at diagnosis. It had blocked her ventricles. It was at this time that we were finally told that Maddie was palliative and there was nothing more the doctors or treatment could do for her.
They told us to prepare ourselves; Maddie was going to go.
In the middle of July we moved into the Rotary Flames House. Shortly after, we discovered that Maddie was blind. She didn’t even tell us. She was so brave and strong she did not want us to be upset. We only figured out, because she was missing the bowl with her spoon.
Near the end, Maddie was withdrawn and quiet most of the time. One evening she suddenly had a wonderful burst of energy. She asked for pizza and told us she wanted to go home. We washed her hair and went for a nice walk. Our preference was for Maddie to pass away at home, and since her pain was finally under control, we started preparing to go home.
But the next day, July 25th 2011, Maddie couldn’t seem to wake up, and was in and out of sleep for most of the day. She was able to talk and communicate with us, but she was just very sleepy. She did ask for dinner, she wanted chili and bannock, but when her dinner arrived, she just said, “Ok,” and went back to sleep.
In the evening, I was about to give my infant son a quick bath, when my sister called out to me to ask me if Maddie was breathing because her lips were turning blue. The Nurse came in right away and checked on Maddie. She told me it was time and to get my husband into the room right away. Maddie passed away quickly and peacefully with all of us by her side and we were so extremely relieved that she was no longer in pain or suffering.
We were first introduced to Kids Cancer Care when Maddie was first diagnosed. She went to camp SunRise that summer. Our family has also attended Family Camp at Camp Kindle since 2008 and we now go to Bereaved Family Camp each year too.
We have met so many amazing people through the foundation. They have all been so wonderful to us, right from first diagnosis.
Maddie was registered for her first overnight camp in summer 2011 after being at Kids Cancer Care’s SunRise day camps for three years. She was so excited. They used to make pillow cases for all the campers with their name on them. Maddie was too sick to attend camp, so Kids Cancer Care staff members Mary and Sharlene came to see us at Rotary Flames House. They brought Maddie her yellow camp bucket hat and her camp pillow case. Maddie loved that they brought this little piece of camp to her.
I just love Mary. Mary was the first staff person that connected with Maddie at our first Family Camp. Maddie was shy and took a while to warm up to adults, after what she had been through. But she adored Mary right from the start and was glued to her side the whole weekend at camp. Mary even did Maddie’s hair and nails at a make-shift spa session at the camp. We had such an amazing time.
Kids Cancer Care is still there for us and I still attend everything I can.
After Maddie passed away, we went on to have another son in 2013, and a year later, we adopted a little girl from birth. Our kids attend all the Kids Cancer Care events and functions and we can’t wait for next summer when all three get to go to camp SunRise together for the first time!
I sit on the Parent Education Committee that was developed last year and have also done media interviews for Kids Cancer Care. Any way I can help and give back, I do. People sometimes say to me “Why do you still go to all those things? Why do you put yourself through that?”
This is why: so we can continue to support other families who have been through what we have been through and so we can surrounded ourselves by people who truly understand.
At Kids Cancer Care, you don’t have to apologize for the way you feel, or for being emotional. Everyone just knows and it’s okay, and it’s accepted. And all the kids are just so resilient and wonderful. Their bravery and strength inspire me to do better every day.
Most importantly, I always want our children to have an appreciation and an understanding of the life their sister had. They get to do all these amazing things that not a lot of kids get to do, because of everything their sister went through. To me, this is and will always be, Maddie’s lasting legacy to them.
– Allison Campbell, Maddie’s mom