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 30^th, 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 25^th, 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 25^th 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

The above blog first appeared on Kids Cancer Care’s website in 2017.

Here is a 2022 update from Allison:

Right now, across Alberta, hundreds of kids are getting excited to attend summer camp at Camp Kindle for the first time since the pandemic and make a lifetime of memories. 

It breaks my heart that Maddie never got to attend sleepover camp, but this year, your donations will send Maddie’s siblings to overnight camp! They get to attend their very first sleepover camp with other children who have or have had a brother or sister with cancer.

With your support, Calgary researchers are investigating an aggressive brain cancer with the hope of slowing – and one day stopping – its fatal progression.

Last year, Lyndsay and Kevin Heaton faced the unimaginable. After a year of aggressive cancer treatments, their daughter Jessica passed away just after her first birthday. Losing Jessica is devastating for the Heaton family, but they are confident her short life will have purpose. When asked if they would consider donating her tumour to medical research, the Heatons knew exactly what that purpose was – to advance glioblastoma research for children like Jessica.

With your support, the Childhood Cancer Research Program has recruited a bright new cancer researcher to Calgary. Dr. Marco Gallo recently joined the Experimental and Applied Therapeutics research effort at the University of Calgary and Alberta Children’s Hospital Research Institute, where he is investigating the epigenetics and epigenomics of brain tumours, with a special emphasis on glioblastoma (GBM).

GBM is a highly aggressive cancer that begins in the brain and almost always recurs after treatment. Most GBM patients do not live longer than a year after diagnosis and fewer than five per cent are alive after five years.

Dr. Gallo is hoping to change this.

Studying the DNA structure of GBM cells, Dr. Gallo and his research team have discovered that GBM stem cells have a characteristic way of packaging their DNA. Armed with this knowledge, Dr. Gallo hopes to develop targeted drugs, capable of altering this DNA packaging to minimize, and one day prevent, the chances of relapse.

While their ultimate goal is to eradicate GBM altogether, their immediate goal is to turn GBM into a chronic illness – something that is no longer life-threatening but requires life-long management.

First, they must learn how to keep the cancer from growing and spreading. To do this, Dr. Gallo and his team are studying GBM samples from U of C’s Tumour Bank. Generously donated by families who have lost loved ones to glioblastoma, these tumour samples are vital to Dr. Gallo’s work. They are accelerating the progress of finding a cure.

“We are so grateful for the families who have made the very emotional decision to donate tumours to support our research,” says Dr. Gallo. “We take this responsibility very seriously and we are determined to reduce the number of families who face this diagnosis and provide more options and more hope for the ones who do.”

Knowing that researchers are working to help families like their own gives Lyndsay and Kevin hope. “Their fight is our fight and through Jessica and the wonderful researchers who work with her legacy, we’re able to have hope that someday other families won’t have to experience the loss of their children,” says Lyndsay. “This work very much helps keep our hope alive and underscores for us that Jessica’s life was so incredibly special and meaningful.”

Thank you for keeping hope alive 

Adapted with permission from the Alberta Children’s Hospital Foundation.

When CANA partnered with Kids Cancer Care to celebrate its 75^th anniversary year, they knew their employees would jump in to raise funds and meet their $75,000 fundraising goal. What they didn’t know was that even the children of CANA would get involved.

CANA launched its 75 for 75 fundraising campaign in December 2016 and within months the kids of CANA employees were already rolling up their sleeves to help. They sold firewood, held bake sales and bottle drives. Six-year-old Clayton McLeod even turned his birthday into a fundraising moment, encouraging friends and family to donate to Kids Cancer Care in lieu of birthday gifts through our Give More Birthday program. Clayton raised over $900 for Kids Cancer Care.

Three-year-old Zoey Van Staalduine also rose to the occasion. “We sold bundles of firewood, collected bottles and cans and made cookies and brownies for a kids bake sale at CANA,” says Zoey’s mom Christie Simpson of Shepard Development, a CANA Group company. “I wasn’t sure if Zoey would understand what we were doing, because she’s only three, but I was amazed at her level of understanding, interest and compassion. We had a lot of fun doing our Kids Cancer Care projects on weekends as a family. Zoey was quick to remind us on Saturday morning what we had to get done for Kids Cancer Care each weekend! She was our chief baker, firewood bundler and bottle depot unloader.”

After a full year of fundraising, CANA employees raised $101,704, far surpassing their $75,000 target. CANA employees held bake sales and yard sales, shaved their heads, ran in the Calgary Marathon and sponsored a table at the Dad and Daughter Gala. Their president Fabrizio Carinelli took part in Kids Cancer Care’s High Hopes Challenge and finished as the top fundraiser.

But that’s not all. CANA employees and sub-contractors also gave their time, carrying out renovations at Camp Kindle at no cost to the foundation.

“There is no other place on earth quite like Camp Kindle,” says Luke Simpson, Director of Business Development and Marketing at CANA. “When I came to my High Hopes Challenge reunion this year and I got to see the kids at the camp and see the smiles on their faces again, the feeling was magical; I knew right then that this was going to be the charity we worked with for our campaign. I was overwhelmed by the response we got from our clients and sub-trades. Without them none of this would have been possible, so I want to thank all of them for making this campaign the success it was.”

There’s no doubt, that CANA is creating a culture of giving right from the top. When the company launched the fundraising campaign, John Simpson, Chairman of the Board, Owner and CEO of CANA, promised to match his employees’ fundraising efforts dollar for dollar. With Mr. Simpson’s generous matching gift, their total contribution to Kids Cancer Care this year is $203,408.

“We are so grateful to everyone at CANA,” says Christine McIver, Founder and CEO of Kids Cancer Care. “Each summer, we send about 485 kids to camp and these funds will help send 135 those kids to Camp Kindle next summer. Thank you CANA! Happy 75^th Anniversary!”    

A YEAR OF GIVING

CANA’s 75th Anniversary BBQ – CANA employees, sub-trades and their families experienced the magic of Camp Kindle firsthand during a company BBQ. Photos by Don Molyneaux Photography.

Spruce Meadows – CANA hosted families from the Kids Cancer Care community at their suite at the Spruce Meadows Masters Tournament.

CANA Stampede Event – After months of fundraising, Luke Simpson and Dwayne Dubois of CANA shaved their heads for children with cancer at CANA’s annual Stampede party.

High Hopes Challenge – CANA president Fabrizio Marinella took part in Kids Cancer Care’s High Hope Challenge and raised more than $20,000, making him the top fundraiser of the 15 corporate leaders who participated. Photos by Brangwyn Jones Photography.

Our son Cohyn Joel Jaskela was diagnosed at 14 months old with ATRT (atypical tetatoid rhabdoid tumour), which is a very rare and aggressive brain and spinal cord tumour.

About a week before taking Cohyn into the hospital, I had measured his head, which sounds weird, but I was a nurse at the Alberta Children’s Hospital and I worked on the neuro unit. To this day I still do not know why I measured his head, but I did and we thank God for that. His head circumference went from 50% to 96% in less than two months from his 12-month checkup.

The day before we took Cohyn into the hospital he started to lose his balance and was saying less words. By the time we got him to the hospital he could barely sit on his own and was not saying any words. But he was still happy little Cohyn, waving and showing off for the doctors and nurses.

We did not have to wait in the emergency waiting room as they took us right in and within 45 minutes Cohyn had a CAT scan, which showed a massive tumour in his brain and throughout his spinal cord. He also had massive hydrocephalus, which is fluid collection on the brain.

At first we could not believe it. Cohyn was always a happy and very healthy child, never even had a cold in his life. We were not angry, but in disbelief and only wanted to know what we could do to help our special little boy. I also struggled with the idea that I am a nurse and should have caught this earlier.

Right after Cohyn had a CAT scan he received an IV and then went for an MRI and straight into ICU. Within 26 hours of us bringing Cohyn to the hospital he had so much increased pressure in his head that he actually coded, which means he stopped breathing and his heart rate was lower than 40 beats per minute. They could not even get him into the operating room and had to put an emergency EVD (external ventricular drain) into his head in the ICU and he was ventilated. He was only ventilated for 24 hours and then the pressure lowered and he started to breathe on his own again.

Since Cohyn’s brain surgery was so big the surgeon wanted to have his team do the surgery, so we had to wait five days over a weekend to get the surgery done. That was a very long wait as we were both very anxious, but knew that everything was in God’s hands and Cohyn would come through the surgery.

The day of his brain surgery we were very nervous and I don’t think either of us had slept for almost a week. I remember going back to Ronald MacDonald House and just lying in the bed, unable to sleep, so we came back to the hospital early, even though we knew the doctor would call when they were done. Cohyn’s first surgery went really well. It was 3 ½ hours long and they got 95% of the brain tumour, but would not do surgery on the spinal cord as it was too dangerous.

Cohyn was doing really well after surgery and we both thought we would be out of the ICU quickly and starting chemotherapy on the Oncology unit soon, which changed very quickly. Within 3 days of surgery Cohyn started to have seizures and his drain was leaking because of increased pressure. Our brave man Cohyn had two sutures with no freezing to stop the drain from leaking. I thought I was going to faint, as I was in the room for everything and would not leave. A couple days after this he had more seizures.

Cohyn was now on a large dose of seizure medication that his body kept metabolizing too quickly, so he would have more seizures from a low concentration of the seizure medication in the blood stream. They finally stabilized his medications and pulled his EVD drain out and we are off to the Oncology unit. We were very excited to get started on the chemotherapy as that was ultimately going to help our child.

When we got to the Oncology unit, we had many teams following us and we almost felt overwhelmed for the first couple days. They all wanted to do exams on Cohyn. We had ICU, Oncology, Endocrine, Neurosurgury, Neurology and Hematology. Within a couple days of being on the Oncology unit, Cohyn started to get a bubble of fluid on the top of his head, which meant increased pressure and back to ICU. He had a CAT scan and off to surgery for another EVD drain. More complications. More CAT scans and more surgeries. They had to insert an internal shunt, which is a drain from his brain to his belly.

We could not believe what was happening to us. Our poor little Cohyn had to go through so much. It had been two weeks and we had not even started chemotherapy yet. We got through every day finding something positive about the day and engulfing Jesus strength, courage and wisdom. Also Cohyn’s happiness and laughter really helped us through. He was our inspiration as he was the one going through all these terrible things and yet he was so happy. It was all about playing for Cohyn!!

We finally made it to the Oncology unit and started chemotherapy. We started on a protocol which would be four months in the hospital with five different rounds of therapy. The first two rounds involved five different chemotherapy drugs, one of them high dose Methotrexate, administered within a week.The last three rounds involved two different high dose chemotherapies with stem cell transplants. We were nervous, but excited to start chemotherapy, so we could move on with our lives, not realizing that the worst was yet to come.

Two days into the chemotherapy, Cohyn started to develop signs of increased pressure in his head. Of course this was at 1 am and off for a CAT scan we went. The findings were devastating as he had massive, massive blood clots that had developed in his brain. We were back in ICU and could not make it to the operating room and had to externalize his shunt, which meant taking the bottom end of the shunt out of his belly to decrease the pressure, which was done in ICU.

They then told us that we had to put him on a blood thinner, but because he had just had surgery the potential to bleed was very great. Still, the potential for a stroke was greater. We were faced with another very big decision. We chose to put him on heparin and pray that he would not bleed. Our prayers were answered and within 72 hours we were back on the Oncology unit.

The next day he had an MRI, which showed that the blood clots were not getting any bigger, but the tumour on his spinal cord was bleeding into itself. If it ruptured it would be fatal, so again, we were faced with a very big decision. Should we start him on chemotherapy again with such a big risk of this tumour rupturing? With the help of our Heavenly Father we started him on chemotherapy and within a couple days that tumour stopped bleeding. After we finished the round of chemotherapy, Cohyn was back in for another surgery for another shunt.

If you can believe it, by this surgery we were not as nervous and it was almost normal to us. We just gave him a kiss and off he went with the nurses for another surgery. He never had a care in the world!!!

Again, the next day after his surgery, another CAT scan to make sure the shunt was in the right spot and that his brain was tolerating all the procedures.   I remember the first time he went in for a CAT scan and MRI how nervous we were and how upsetting it was to see our precious child have to be put to sleep for the MRI or held down for the CAT scan. Now, it was almost normal to us, as he had been through so much in the last month.

The next two weeks were full of tests and tests and more tests. Cohyn had to have an ultrasound of his kidneys to make sure the tumour did not migrate there. He had problems with his heart rate dipping really low, so he had many CAT scans, ECGs and a 24-hour ECG monitor (Holter monitor). He also got an infection from his mouth sores and teething, so that meant antibiotics and a shunt tap, which is a needle through his head into his shunt, to make sure there is no infection in his shunt.

Cohyn also had to have blood work done every four hours and, even though he had a central line, they had to poke him for his blood thinner test as well as two pokes a day of heparin in his legs. It felt like everyday was so busy with all the tests, doctors and nurses checking Cohyn as well as his own play time.

The next step was to collect stem cells, which was done in ICU and they had trouble getting a femoral line, which delayed our chemo by a week because he had an open area in his groin from all the pokes. Every day, it seemed like something else was going wrong. Then his heart rate was really high and he had to go for another Echo and ECG. His central line was blocked, so we had to go for surgery for a new broviac. Cohyn was also vomiting so much from the chemotherapy that he was started on IV nutrition.

We felt so bad for Cohyn that nothing ever seemed to go right for him. It was always one thing after the next for him, but as long as he could play he was happy. He was so forgiving and loved everyone. Jesus’s love lit up his eyes and shone through to everyone around. He was our amazing little man!!

Throughout this journey Cohyn found happiness in everyday. We have so many fond memories of Cohyn in hospital. Since he was a transplant patient he was right next to the nursing station. This was great for him as he loved to sit in his stroller in his doorway by the nursing station and flirt with the doctors, nurses, cleaning staff and anyone who would walk by. Cohyn loved giving high-fives and blowing kisses to everyone.

His other loves were his toys, music, books, and of course, the playroom. Once a week the music therapist would come into Cohyn’s room and they would play instruments and sing songs for hours. We would also go to the playroom everyday for a couple hours and Cohyn would play with all the toys there. I still don’t know how we managed all the lines and Cohyn crawling, but we managed.

Cohyn really enjoyed when the sports teams and Paul Brandt came in to visit. He also loved playing BINGO and watching the clown. Another fond memory was one day when the clown was in the playroom and the kids were playing the laughing game. This was right up Cohyn’s alley as he loved to laugh and would laugh all the time out of turn. From this experience Cohyn learned to laugh in many different ways and his laugh would change from time to time. Even through all the tests and procedures, as soon as the nurses were done, he would give them a high-five or blow them a kiss. He loved everyone and was very forgiving, which made this experience a lot easier.

The next step was getting ready for the stem cell transplants which meant Echo, ECG, MRI, lumbar puncture, chest X- ray and X-ray of the wrist for bone density, urine samples, throat and nasal swab and blood work. We were a little nervous with Cohyn starting stem cells transplant, as we had known another child who had gone through this protocol and had trouble and ended up in ICU with problems with his lungs. We just had to trust in God and accept that it is not in our hands and Cohyn would do great and HE DID. Cohyn breezed through three rounds of stem cell transplants, which included a bath every six hours, dressing changes around the clock, all the monitoring and isolation. His lungs, heart and hearing were all protected and he had no damage to any organ.

He did have trouble with vomiting and fevers, which kept us in hospital longer. All we wanted was to take him home since we had been in hospital since July 12, 2007.

Miracle after miracle happened and we were able to take Cohyn home on December 8, 2007. We were so excited and he was doing excellent. The MRI showed only a pea-size tumour in his brain and a small tumour on the C1 section of the spinal cord.

It was amazing to see how all the tumour had disappeared without radiation. Since Cohyn’s tumours were extensive and spread throughout his brain and spinal cord we choose not to do radiation, as it would have disabled him and throughout this experience, our focus was always “Quality over quantity of life.”

We left the hospital on an oral chemotherapy, which was a trial drug. Cohyn was doing really well. We were loving our life with him at home. Cohyn had another surgery to remove his central line, had an EEG in order to make sure he would not have any more seizures and was slowly coming off all his medications.

He was feeling so good that we took him to Arizona, Mexico, Niagara Falls and all over British Columbia. We would have never guessed that the next MRI would show a fuzzy spot, which they thought was nothing, to Cohyn relapsing right after his second birthday with no signs or symptoms. Cohyn was starting to walk on his own, was talking more and was playing more independently, who would have ever imagined. We had just gone in for a scheduled MRI. We could not believe it.

We were faced with all the decisions again. How could this be? How could our son Cohyn, who seemed so healthy, relapse and need to go through more treatment again?

We made the decision to start him on the IRS 3 protocol minus the radiation. The next day, we were back in the hospital, getting a Port (central line) surgically inserted. This surgery was upsetting, but we knew it had to be done for our child to get rid of the rest of this terrible disease.

We decided to do this protocol through the out-patient clinic, which meant taking Cohyn home and then bringing him into clinic on the days he needed chemotherapy, blood work and other tests. Cohyn did have to be admitted when he went neutrepenic and got another fever. This was very disappointing as we had spent so much time in the hospital and could not imagine spending more time in the hospital, but we did whatever we had to do to keep our special boy as safe and healthy as he could be.

We finally had some good news as Cohyn’s MRI came back with the tumours shrinking. This meant that the chemotherapy was working. Cohyn went in to have his shunt removed and a G-tube inserted.

Cohyn was doing really well again during the summer. We always treated him as if he was not sick. He did everything that a normal two-year-old would do. We took him to the Calgary Zoo, Calaway Park, West Edmonton Mall, the mountains, rodeos, camping, swimming at the lake, on the boat and on the golf cart and more. Cohyn thrived on our positive energy and made every moment of his life count.

These happy times ended quickly in October, 2008, when we brought Cohyn into the hospital, thinking he was vomiting from an allergy to the antibiotics. To our surprise, as Cohyn had no other signs or symptoms, his tumours were growing, but this time they were a superbug and in an area where they could not do surgery.

The pressure in his head was so great that he went in for emergency surgery and had an EVD drain put in to decrease the pressure. About three days later, he went for another surgery to have a biopsy done and another EVD drain inserted, as the spinal fluid had too much blood in it to put in an internal shunt. We waited about another week to get an internal shunt put in.

In the meantime, Cohyn was such a happy kid as long as he could play ball, hockey and go to the playroom. One of my fondest memories of Cohyn during treatment was chasing him around the hospital with two IV poles as he played hockey with the doctors and nurses in the hospital hallways, laughing and saying, “HOCKEY, HOCKEY!!!” He sure loved hockey.

We actually took him to the Calgary Flames game two days before his last admission to the hospital. We sat third row and his eyes were so big. He would not even talk to us and kept pointing at the ice and the hockey players. He sat through two whole periods and would have watched the third, but we had chemotherapy the next day, so we had to leave early. Cohyn loved sports so much. When we were in clinic getting chemotherapy, we would turn on the sports channel instead of cartoons, so he would sit still during his treatment.

We decided to start Cohyn on an experimental drug, which meant going to the clinic almost everyday for chemotherapy for one week and then the next week off. When on experimental drugs, it is a very strict protocol and Cohyn had to have many tests pre-chemotherapy. He had an MRI, ECG, Echo and lots of blood work.

By this time we were so used to all these different procedures and we thought he was too as it was not a fight to get him to sit still for the procedures.

The day before we started the experimental drug we had to take him into the hospital as he was vomiting. To our surprise, his tumours had increased 30% and we had another emergency CAT scan. We completed four days of the experimental drug and Cohyn had a massive seizure, which had us back in the hospital. Never to leave again. Cohyn Joel Jaskela went to be with Jesus on December 23, 2008.

Throughout this journey with Cohyn, our family, extended family, friends and even strangers learned so much from a special little boy, who really could not even tell us what he thought. Through his gestures, he brought happiness into a very sad situation. Cohyn never felt bad for himself. As long as he could play, he was happy. He brought courage, love and trust into every situation in life and was determined to live life and life abundantly.

We were very fortunate to have a great support system between family, friends, hospital staff and Jesus. When times were tough, there was always someone there to lean on. What was very important to us was keeping a strong marriage with positive energy and Cohyn sure thrived on that. One way we accomplished this was having grandparents stay the night, so we could get some sleep, while they had time to spend with Cohyn. This also gave us a chance to leave the hospital and spend some quality time together.

We keep telling ourselves the only thing worse than watching him leave this earth is the possibility that we may have never known him at all. Even without speaking, Cohyn taught us the true meaning of life – love and friendship with a rock foundation. The little things really do not matter. Cohyn redefined the meaning of “fight the fight” and we are so proud of him. We just thank God that we had the extra year and a half with our special angel and that we will eventually be with him for eternity.

Babies are angels who fly to the earth. Their wings disappear at the time of their birth. One look in their eyes and we’re never the same. They’re part of us now and that part has a name. That part is your heart and a bond that won’t sever. Our baby Cohyn is an angel and we love him forever.

~ Cohyn’s mother Trisha

Read more about the Jaskela family and Cohyn’s living legacy here.

Cohyn’s Photo Gallery

Dr. Doug Mahoney’s lab is one of three in the world looking at a new immunotherapy combination that is showing promise for killing cancer.

Immunotherapy is a promising new arena in the global fight against cancer, where scientists and clinicians search for ways to harness the body’s own immune system to attack and kill cancer. Thanks to your support, a Calgary research team has made an important discovery in immunotherapy that uses existing drugs in a whole new way.

“What we found is a combination of cancer therapies that complement each other to help the immune system clear the cancer,” says Dr. Doug Mahoney, a Kids Cancer Care-funded researcher at the University of Calgary’s Cumming School of Medicine and the Alberta Children’s Hospital Research Institute. “Our results suggest that we’ve been looking at these cancer drugs the wrong way — as tumour-targeting drugs — instead of what we now feel is their most important biological role: as immune stimulating therapy.”

Ramping up the immune system to kill cancer

Cancer cells are able to survive because they know how to hide from the body’s immune system. They also know how to control certain immune cells. Some cancerous tumours can reprogram immune cells to block other immune cells from attacking, leaving the tumour free to grow.

Treatments aimed at revving up the immune system’s attack on the cancer may be the most promising approach to cancer therapy since the evolution of combination chemotherapy. Research shows that single therapies, targeting only one part of the immune system, are effective in treating only a small percentage of patients. Results from Dr. Mahoney’s research are consistent with other recent findings, which suggest that smart combinations of therapies are even more effective in battling some cancers.

A two-pronged approach

In Dr. Mahoney’s study, researchers combined two therapies, each targeting a different part of the immune system. The first one boosts the immune system, followed by a second one, which stops the tumour from reprogramming immune cells.

“This combination of drugs allowed the immune cells to do what they’re supposed to do,” says Dr. Mahoney. “We were able to cure cancer in 20 to 60 per cent of our animal models. It’s a very promising result against two very deadly forms of cancer: an aggressive breast cancer and a rare pediatric muscle cancer.”

When the researchers added a third complementary immunotherapy, the cure rate went as high as 80 to 100 per cent. Results of the study are published in Nature Communications.

Drugs seen in a new light

“These results change a lot,” says Dr. Mahoney. “What’s interesting is that neither drug was developed as an immunotherapy. For nearly two decades they have been studied for their ability to directly kill cancer cells. Viewing these drugs through the lens of immunotherapy, will impact the way we study them and try to figure out how to make them work better. From a clinical perspective, it changes the way we will try to translate these drugs.”

Mahoney says we’ll know more about the impact this study will have on cancer patients in the next five years. His lab is one of three in the world looking at this immunotherapy combination. In the other two locations, clinical trials are about to start based on a similar results.

This research study was supported by the Canadian Cancer Society, the Alliance for Cancer Gene Therapy, and the Cancer Research Society. Doug Mahoney’s lab, the Trican Childhood Cancer Therapeutics Lab, is supported by Trican Well Service, Kids Cancer Care Foundation of Alberta, Alberta Children’s Hospital Foundation and Believe in the Gold Foundation.

Dr. Doug Mahoney (PhD) is an assistant professor in the Departments of Microbiology, Immunology and Infectious Diseases; and Biochemistry and Molecular Biology at the University of Calgary Cumming School of Medicine, a member of Arnie Charbonneau Cancer and Alberta Children’s Hospital Research Institutes and a member of the Experimental and Applied Therapeutics research effort at the Childhood Cancer Research Program.

~ Revised with permission from the University of Calgary’s Cumming School of Medicine

Sloan and Ryder are blood brothers. They’re not just best friends who nicked their palms with a jackknife and squeezed their palms together to mix their blood. No, these boys are blood brothers in the truest sense of the title.

In 2008, I had just given birth to Sloan and Ryder’s little brother Cruz when Sloan was diagnosed with acute myeloid leukemia. He had just turned two. When Sloan relapsed after his fourth round of chemotherapy, my husband Rodney and I knew his only hope for survival was a stem cell transplant.

Stem cell transplants are extremely high-risk and life-threatening procedures that involve months of high-dose chemotherapy and radiation to wipe out the patient’s immune system to replace it with healthy blood cells.

Still reeling from this news, we discovered that Sloan’s brother Ryder was an identical donor match for transplant. In the frightening and turbulent world of cancer and transplantation, we had just hit the jackpot.

The odds of a sibling match are only 25 per cent, but transplants with sibling donors have the best possible outcomes. There are fewer complications, like graft versus host disease, and the chances of long-term survival are much higher. Still, it’s a high-risk procedure that demands round-the-clock care and a huge commitment from the entire family.

During a stem cell transplant, they essentially take your child up to death’s door and then start rebuilding him. If it doesn’t work, the child dies because there’s nothing left of him, no immune system is left. It was gut-wrenching to see Sloan like this. Preparing for transplantation was far worse than his previous chemotherapies. He was so sick he would vomit his own stomach lining. It was horrible to watch Sloan endure that kind of pain.

It was a gruelling experience that lasted well over a year. Rodney took a leave of absence from work and we alternated shifts at the hospital — three nights on and three nights off. Cruz was still nursing, so he was always right there with me and Sloan at the hospital. His bedroom was a playpen in the bathroom of Sloan’s hospital room.

The intense chemo and radiation treatments left Sloan with a dangerously low immune system and required that he be isolated from the outside world for months afterwards.

Before transplant, Sloan spent 72 days without a break in hospital. Then it was another full year before he recovered. It was like serving jail time. We were so isolated. We lost all our sense of freedom. Camp was the only thing Sloan could do that whole year.

Constantly filling in for each other at the hospital or at home, Rodney and I hadn’t spent any time together in over a year. Camp was our first break too.

We survived the transplant, but not without its traumatic aftershock. I suffered from severe insomnia and anxiety afterwards and was eventually treated for post-traumatic stress disorder. It started when we brought Sloan home. I would stay up at night, listening to his cough, worrying about his cancer coming back. I think the hospital provided me with a sense of security; daily blood cell counts and caring hospital staff ensured that we were on top of it. Once we were at home, I was plagued with fear that his cancer would return.

We’re so fortunate for modern medicine, blood donors and the doctors and nurses who took such excellent care to ensure Sloan has an opportunity to live a healthy, normal childhood. Although childhood cancer has forever changed us, we are so grateful to have met so many wonderful hospital staff, volunteers and friends through Kids Cancer Care, who have impacted Sloan’s journey to recovery.

Sloan has been cancer-free for almost nine years now. He still goes for baseline testing every year and will continue to be annually monitored for the rest of his life. While many of the long-term side effects are still unknown, what is certain is that he is at high-risk for certain heart conditions and secondary cancers.

Thankfully, he hasn’t shown any signs of cognitive impairment. Sloan is a strong student in both reading and math. Last year, he received a certificate of distinction from The Calgary Elementary School Math Contest, sponsored by the Mount Royal University. Sloan is also a passionate Rubik’s Cube competitor.

All three boys are growing like wildflowers, endlessly roughhousing and teasing each other as brothers do. When Ryder gets in trouble for teasing his brother, he’ll say, “C’mom mom, I saved his life, give me a break.’”

We’ve regained our stride and we have a healthy appreciation for life.

I have no illusions about death. We don’t know what Sloan’s life expectancy is, or ours, so we try to embrace our life now. Every day we have together is a gift.

– Karin McGinn, Sloan and Ryder’s mom

Blood brothers
Karin McGinn exhibited her work, Blood Brothers, at the Marion Nicoll Gallery and +15 at the Epcor Centre for Performing Arts in 2014. The individual life-size figures in this fibre work commemorate the bond shared between her sons Sloan and Ryder through a courageous gift of life. When two-year-old Sloan was diagnosed with a highly aggressive blood cancer in 2008, four-year-old Ryder donated his stem cells to save his brother’s life. The transplant was successful and the two boys and their little brother Cruz are thriving today. 

Kids Cancer Care has partnered with Canadian Blood Services for Childhood Cancer Awareness Month. On September 19th, Sloan and Ryder will appear at the special Grand Opening of the new Blood Donor Clinic in Calgary. It’s in you to give – book your blood donation appointment in honour of Sloan today. Please contact the Lifebus/Group appointment coordinator at 403-410-2722 or via email.

Taylor was diagnosed with leukemia the year she was supposed to start grade one. She spent two and a half grueling years on treatment. Her story is one of many shared on special dedication boards at registration for Tour for Kids Alberta, a three-day cycling adventure through the Canadian Rockies, where participants fundraise to ride, with all proceeds to Kids Cancer Care.

These special boards each share a different story of a childhood cancer warrior, fondly known by Tour for Kids as ambassadors.

Grant was 15 when he was diagnosed with acute lymphoblastic leukemia. Three weeks later he was in remission. However, the cancer would change to acute myeloid leukemia and, later that year, he was diagnosed with skin leukemia. He passed away six months after his first diagnosis.

Liam. Stephen. Briony. Alexander. Dominic.

These are the childhood cancer warriors that are top of mind for the cyclists on the epic cycling tour through the Canadian Rockies. Each day of riding, a special dedication to one of these children affected by cancer.

It’s always been about the kids for Jeff Rushton, Founder, Chair and Very Passionate Volunteer at the Coast to Coast Against Cancer Foundation. Fourteen years ago, Jeff and some friends started Coast to Coast, the Ontario-based organization behind Tour for Kids. “When we started this foundation, we really wanted one thing: we wanted to make a meaningful difference in the lives of kids and their families going through childhood cancer,” Jeff says.

And that’s exactly what they have done in the 11 years since Jeff and his team first brought Tour for Kids to Alberta. In total, Tour for Kids has raised $2.5 million dollars for Kids Cancer Care. Through various fundraising events and programs, including the Sears National Ride, Inside Ride, and of course, Tour for Kids, they have raised over $35 million dollars for 50 childhood cancer charities and hospitals across Canada.

Their model is low cost. Hard costs are covered by corporate sponsors. That means Coast to Coast has always given 100 per cent of donations raised to the charities they support.

But what makes the event stand out is the people.

Jeff himself is there at the crack of dawn to greet the riders on the first day and then he joins them on the ride, for every single kilometre. At the end of the weekend, Jeff is there to hand out medals and pat each rider on the back.

“The ride takes you to the edge physically and spiritually,” Jeff says, “as you push beyond your own limits and listen to the story of the child you’re riding for.”

Kids Cancer Care event coordinator Kelsey Morrison adds, “It’s a real team effort. The riders, the organizers, the volunteers. No one is afraid of getting dirty or lending a hand to make the weekend the best experience possible for everyone.”

Kelly Raymond, Kids Cancer Care volunteer assistant agrees, “There is so much comradery. There is a real human, powerful side to the event, almost everyone has a connection to childhood cancer or has been touched by these kids.”

After the ride starts, volunteers start to pack up the dedication boards at registration.

“I need to get a picture of Grant’s dedication board before they load up,” says Mel, the volunteer co-lead, working with Kelly to oversee the 84 volunteers who work the event. Mel, her daughter Ali and husband Jim have volunteered on the ride for six years. She is also Grant’s mom.

She’s not alone. Liam’s mom has been a rider two years in a row. Stephen’s dad rides too. Briony’s mom normally rides, but volunteered this year due to an injury. Briony’s sister is the volunteer massage therapist who organizes all the massage therapists and RMTs for the weekend. Alexander’s mom and dad are part of the volunteer crew. And Dominic’s aunt rides every year.

On the second night of the ride, participants stay at Kids Cancer Care’s Camp Kindle where all the kids go each summer thanks to Tour for Kids. First, the counsellors speak of their own experiences as a childhood cancer survivor and sibling. Then, the Inkpen family, a family whose son Foster is currently undergoing treatment, speaks at dinner, reminding everyone in the room where their fundraising dollars go.

“Camp Kindle is our family’s island where we dock,” says Candace Inkpen, standing before a crowd of cyclists. “Knowing that both kids were in amazing hands at Camp Kindle helped me let go. Just a little. And that is because of you all.”

And in that crowd is Taylor. Now 28 and a registered nurse, she rides every year with her dad Dean Wheatley.

“Taylor Wheatley is amazing,” says Kelly. “She and her dad ride all weekend and the rest of the Wheatley family volunteers. And then on Monday, after riding hundreds of kilometres all weekend, she’s at SunRise camp, volunteering for a week with our youngest campers.”

That’s what the ride is for so many. Jeff sums it up best, “We give a lot, but we get so much out of it. It’s been an incredible journey…and we’re just beginning.”

Thank you Coast to Coast Against Cancer Foundation, Jeff, Taylor, Mel, and all the volunteers, sponsors and cyclists who make this event possible. By doing so, you make an invaluable impact in the lives of children affected by cancer and their families

Our cancer journey began like many families whose children are diagnosed with leukemia – with symptoms and signs that we initially discounted as common, normal ailments of childhood. There were no red flags, no reason for cancer to even be a blip on our mind. But looking back now, we can pinpoint the start of Foster’s cancer journey.

The Holiday Curse

When Foster was three years old in November 2015, we took him to a pediatrician for leg pain. It was only in his left leg, the leg he’d broken about six months earlier. As a precaution, we had X-rays done. Everything came back perfect, so the doctor thought it was just growing pains.

Fast forward a few weeks. December 25, 2015, Christmas morning. There was no 5 am wake up call to see if Santa had visited. In fact, we had to wake Foster up and bring him downstairs because he was so tired, feverish and nauseous. He spent the whole day on the couch barely able to open more than a couple of presents. It was sad to see him like that on Christmas Day, especially since only eight months earlier he had broken his leg at Eastertime. Two major holidays and Foster was out for the count, unable to enjoy these special occasions!

On January 6, 2016, Foster turned four years old. There was cake, balloons, presents and sickness again. What we thought was just the flu, seemed to come and go since Christmas. It wasn’t too concerning at the time. Tylenol would bring the fever down. He would have a bad day or two, but then he’d bounce back to his regular self. Illnesses always seemed to hit Foster the harder and he took longer to recover, so it wasn’t out of the ordinary for him. We started to think he had the holiday curse!

A short while later we booked a family vacation. We didn’t want the holiday curse to continue, so we decided to take Foster to the doctor for a check-up to make sure he was clear to travel. The doctor checked him over and seemed to think he was at the tail end of the flu. It was safe to go on our vacation. Whew!

We headed off on our vacation and arrived with two bouncing excited kids. The first few days were absolutely amazing, though Foster seemed tired and irritable. Then it happened, Foster got ill again. Fever. Cough. Headache. Runny nose. Nothing serious we thought. Just another cold from travelling and being run down from the first few days of vacation. He spent the next couple of days in the hotel room. Timing just wasn’t great for this little guy. First Easter, then Christmas, then his birthday, and now vacation was a bust.

It seemed like he might have a sinus infection, so we took him to a clinic to make sure he would be alright to fly back home. They assessed Foster and asked the questions we got all the time: “Is he always this pale?” “Does he bruise like this all the time?”  You see, Foster has oculocutaneous albinism, which means he has lower levels of melanin. Among other things, this means he has pale skin, which means his bruises are more pronounced and noticeable. The doctor came to the same conclusion. It was a sinus infection and we left with antibiotics. As soon as he had the antibiotics, he instantly looked and felt better. We were ecstatic to see him enjoying a day or two of fun, before leaving for home.

The Unbelievable

After a long flight, we arrived home the morning of January 26, 2016. Both kids were exhausted, but Foster seemed to be feeling much better, until the next day. He woke up complaining about his leg again. We just wrote it off as growing pains again because he just had a clear X-ray a couple of months earlier and there were no visible signs of anything wrong. No redness. No swelling. No bruises. Nothing.

This is where a date, January 28, 2016, becomes permanently etched in my mind. I remember every moment of that day – dropping the kids off at school and preschool, picking them up, taking our daughter Kaidence to skating lessons, Foster and me watching her from the stands. Though, that night was different. Foster’s leg pain seemed to be getting worse. He could barely walk on it. During the skating lesson, my husband picked Foster up and took him to the Alberta Children’s Hospital. We thought, “It must just be a complication from when he broke his leg. What else could it be?”

What else could it be? That question will haunt me forever. My husband and Foster arrived at the hospital around 7 pm. Brian sent a cute picture of Foster waiting in the ER, then an update, “We’re just waiting for X-rays.” Then, Brian got those horrible words first. I can’t even imagine what he was going through by himself in the ER when he heard those words, “Foster has leukemia.” When Brian phoned, I thought he was joking around when he told me to sit down. You see Brian is the family jokester. He is always making us smile, even with his lame daddy humour. But I quickly realized from the crack in his voice that this was serious. I will always remember that moment, when I could hear the pain in his voice, telling me that Foster has leukemia. My brain, my heart, still wouldn’t process it though. I must have told him multiple times, “This is not funny. This can’t be true. This cannot be the ‘what else.’”

The New Us

“What else” turned out to be high-risk B-cell acute lymphoblastic leukemia. Leukemia is a cancer of the blood that starts in the bone marrow. The leukemia cells invade the blood quickly (acute) and if not treated, they could be fatal within a few months. These leukemia cells were overcrowding Foster’s blood system and his blood just couldn’t function or develop properly.

When Foster was admitted that night, his immune system was non-existent. His little body had no defense. That leg pain? An infection in the joints of his foot. Those bruises? Low platelets. The fatigue? Low hemoglobin. All of those flus and sinus infections? Illnesses that he couldn’t fight off adequately. My little one was going through so much and we had no clue.

Within a week, Foster had three surgeries, MRIs, ultrasounds, ECHO and EKG exams, two blood transfusions, IV antibiotics, a bone marrow aspirate and his first IV chemotherapy. His leg, or actually, his foot was getting worse. The antibiotics weren’t helping and they needed to flush out the joint to remove as much infection as possible, before it moved into the bone and into his whole system.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

It seemed ridiculous to me, that we were going to start treatment when he was still fighting the infection in his foot, but now I get it. Now I realize that every day that we didn’t start killing off the leukemia cells was another day that Foster might not respond to treatment. The infection in his foot was now physically visible. It was red, swollen and hot, it was real. The leukemia we couldn’t see, but it was worse. Time was of the essence.

February 1, 2016, the first day of treatment – the first day of what will be over three years of treatment. In walk two nurses, although they looked more like blue aliens. They were wearing what looked like blue hazmat suits – gowns, masks, eye protection, gloves. One carried a small plastic pouch. The pouch looked innocent enough, like antibiotics or something, but it contained volatile poison. They checked and double checked the ID bands. They hooked up this “medicine” to Foster and it broke my heart. Our 30-pound little boy was getting chemotherapy. This doesn’t happen to little kids. This is now our new normal.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

The Frontline

Our new normal included hospital admissions, febrile neutropenia (fever and low immune system), lumbar punctures, chemotherapy port placement, tests, scans, blood transfusions, antibiotics, steroids, IV chemotherapy, intrathecal chemotherapy, oral chemotherapy, bone marrow aspirates, physical therapy, occupational therapy, neuropsychological evaluations….

Our new normal meant being isolated most of the time. Isolation in the hospital and isolation at home. There was no school, no play dates, no events, no parties, no playgrounds for Foster. There were lots of disappointments, cancellations, fear, loneliness for Kaidence. We couldn’t plan anything because we never knew when we would end up in the hospital with a fever or infection. We couldn’t run errands or have friends over because the risk of infection was too great when Foster was neutropenic (extremely low immune system).

We now have anti-bacterial gel in every room of our home. A suitcase pre-packed and ready to go at a moment’s notice for admissions to the hospital. The first sign of a cough or runny nose and that person is isolated in a room until there are no more symptoms. Our family is strong, but more often than not, we weren’t able to be all together at the same time. One parent was always at the hospital with Foster and the other at home with Kaidence.

The frontline is intense. For us, it lasted about ten months. Every day felt like we were walking in a field of land mines and we were doing our best avoid them. In those ten months, Foster had multiple infections, which required IV antibiotics and hospital admissions. Each one just as scary as the next. The possibility of having to delay chemotherapy was real, as was the possibility that he may never recover from the infection. If the leukemia itself didn’t take Foster, the infection could. Every day felt like we were walking in a field of land mines and we were doing our best avoid them.

The Future

We made it though. Foster is now in maintenance, which consists of 12 cycles (each about three months long). We reached the maintenance milestone on November 10^th, 2016. For the first four cycles of maintenance Foster takes oral chemotherapy every day, a steroid pulse for one week each month, intrathecal chemotherapy via lumbar punctures once every two months, IV chemotherapy once a month and IV antibiotics once a month. We reach cycle five this October, where everything is the same except he has intrathecal therapy by lumbar puncture only once each cycle.

Foster was able to return to school during maintenance. Now we’re able to venture outside the house without worrying so much about the land mines. They are still there, but not as many. But Foster has still missed more than 50 per cent of school days due to hospital appointments, illness and infections. Now, the hospital visits are less about the chemotherapy and more about the effects of chemotherapy on his body and mind.

The future is scary. The survival rates and relapse rates for his type of leukemia are scary. The late effects of chemotherapy are scary. Everything is now scary to us, be it a bruise, a low fever, a runny nose, a bump, a rash, a cough. Anything can send us into panic mode.

But the future is also brilliant. We have two wonderful, amazing little kids who you can’t but smile and be happy around. Their inner happiness and brightness just radiates and it is contagious. I can handle that kind of contagion. Every day is a day we are grateful for having our children with us. I know the future holds great things for both of them. They are going to do great things. They are the future.

Thank you

Brian and I, our family and our friends had no previous experience with childhood cancer. It was like we were suddenly on a lifeboat, drifting in the ocean, trying to find a place to land. We were isolated. When you have two very social and extroverted children, this is heartbreaking.

Even in Foster’s current phase of treatment, maintenance, there are still many birthday parties, play dates, school days, events that have vanished. But that is where Kids Cancer Care comes in. Both Foster and Kaidence went to Camp Kindle this year for the first time. Seeing and hearing them connect with other children and siblings is something I will never forget – and neither will they. Kaidence cried on the bus ride home from Camp Kindle because she didn’t want to leave!

As you can imagine, I have struggled with anxiety since diagnosis. Both Foster and Kaidence have been next to me, or next to someone I absolutely trust, every second of every day. There is no way I would even consider sending Foster or Kaidence to any other camp. Camp Kindle is our family’s island where we dock. Knowing that both kids were in amazing hands at Camp Kindle helped me to let go. Just a little. Well, maybe just a millimeter. And that is thanks to the many generous people who support Kids Cancer Care.

No one wants to be a member of the kids’ cancer club, but I have to say the members are the most wonderful, caring, generous, heartfelt people I have ever met. From the cyclists in Tour for Kids, to the staff and volunteers, to the families, the businesses and donors, you are beautiful. Without you, we would still feel isolated. But because of you, we feel and experience understanding and inclusion. From isolation to embracement, all because of you. Thank you.

~ Candace, Foster’s mom

I’ve had events in my life that I thought were crashes but they turned out to be speed bumps, very small speed bumps. I can say without a doubt, that December 18, 2009 was when my wife Tara and I’s world actually crashed. This was the day that our son was diagnosed with a brain tumour.

Alexander was born on the 13th of November in 2007. He was perfect and things stayed that way until his second birthday. He had come down with the H1N1 flu. Up to this point Alexander was very active, running and climbing like a little monkey. But now, with the effects of the flu, he started walking like a drunken man. Also, he had tremors in his hands. We knew something was off. Over the next month we saw doctors, physiotherapists, specialists, etc. By the end of the month, things were getting more concerning. Along with the drunken walk and hand tremors, he also had a slight head tilt, back muscles more developed on his left side and he had started choking on his saliva. Soon we found ourselves at the Alberta Children’s Hospital. After many hours, neurology was convinced that we were still seeing the effects of the flu and sent us home after putting us on a three- to four-month wait list for a MRI.

On the 18^th of December, we were back. Alexander was throwing up and complaining of a nonstop headache. They sent him for a CT scan. This brings us back to the point our world crashed.

Suddenly, we moved from a four-month wait for a MRI to one hour. A lemon-sized tumour was removed three days later. When they brought him back to the Pediatric Intensive Care Unit after surgery, he had a six-inch incision in the back of his head. I found myself thinking, “He’s so small; how can this be happening to a little boy?”

After the surgery, Alexander had to have a lot of physiotherapy to learn how walk again and use his hands again. One of the side effects was mutism, so he also had to learn to talk again.

At this point, we were told he had medulloblastoma. If you’re going have a tumour, this is the one you want. A 95 per cent survival rate sounded really good to us on paper – but we still had an uneasy feeling that it was not going to turn out okay. Trust me; we never wanted to be more wrong in our whole life.

Alexander was so brave through all of it. Over the 10 months that he was sick, Alexander had two brain surgery’s, a dual Broviac installed, a central line in his chest, a central line in his leg, two external ventricular drains in his head, a third ventricle installed, stem cells removed, countless blood draws, CT scans, MRIs and countless other procedures. Through all this, he rarely complained. Even in the end, when the pathologist explained what the tumour had done to his brain (which was pretty horrid), all Alexander had ever done was point to the back of his head and say, “Owie,” and continue playing. Looking back, I realise how easy it was to be strong… because he was strong.

Alexander’s protocol consisted of six rounds of chemo with the last three rounds being stem cell rescue. After the third round he got a MRI. The results showed that he had a spot on his brain, which we were told may or may not be a tumour. He also had five tumours in the nerve bundle of his spine, which were inoperable.

Over the next five weeks, we completed the first round of stem cell rescue and added five rounds of intrathecal chemo, which is chemo injected into his spine. At this point, they did another MRI to see if the chemo was working. Not so much. The spot on his brain was definitely a tumour and he now had eight tumours on his spine. We stopped the chemo completely.

The uneasy feeling was getting really strong now. The chemo didn’t even slow the tumours down.

Radiation was something that scared the hell out of us. Depending on the dose of radiation, children under three can be severely brain damaged. Unfortunately, Alexander’s tumours were showing themselves to be extremely resistant to treatment. This meant our only option was to give him a serious dose of radiation. He received 31 doses in total and almost the same for his spine.

Thirty-one doses of radiation and he never complained. Large blisters on his head and still no complaints. Burns so bad his head peeled and, you guessed it, no complaints. To this day, we marvel at his strength.

We waited five weeks for the next MRI. The radiation had done absolutely nothing. He still had the spinal tumours and the brain tumours had grown fast while on radiation, which is very rare. We were told they could do one more brain surgery, but there was no way to get it all.

When they went in for this surgery, they realized the tumour was not what it had appeared to be. His tumour was actually ETANTR, embryonal tumour with abundant neuropil and true rosettes. This is a tumour that can mask itself and then change its cell structure to reveal its true self. No one has ever lived with this tumour past 10 months from diagnosis. Alexander was only the 36th case recorded.

They gave us a couple of options to possibly extend his life a little bit, but it would mean more hospital visits and that’s not how we wanted to live our last days, so we decided against those options.

Despite a bout of meningitis, we went on our last family trip that September to Hawaii. He had a private swim with two dolphins for 30 minutes and we also bought and released 31 butterflies; one for each round of radiation. The rest of the time was spent swimming and sitting in the hot tub. Every time we asked him what he wanted to do, the answer was “Hot Tub.”

It was sad to leave Hawaii because it meant we were going home to spend his last days. We had made a bucket list before we left for Hawaii and we were going to try our best to complete all of it.

The first thing we did when we got home was go to Akisha’s birthday party. Akisha was his girlfreind and her party was at a jungle gym. What could be better?

After the party, we hooked up the travel trailer and went to Kids Cancer Care’s Camp Kindle for a weekend. We brought along one of his best friends and camp aide, Samantha. While we were still at camp, I put Alexander on my lap and let him drive the truck pulling the trailer. Driving the truck, another thing off the bucket list.

Next, we went home and packed for Banff National Park. While in Banff, he got to go on a helicopter ride over the mountains, swim in the hot springs and take a gondola ride up the mountain.

From Banff, we drove straight to Stony Plain Alberta to visit his grandparents. A couple days later, we went to West Edmonton Mall and the indoor water park. While we were there, he got to go behind the scenes at the aquarium and feed the sea turtles, etc. We also took him to a pet store to play with puppies a couple days in a row. By now, he was getting very tired and sleeping most of the time, so we knew we were close. He went to bed that night and got up the next day unable to walk. I guess it’s time to go home.

We checked into the Rotary Flames House on the 11th of October. We spent the next 13 days playing, watching movies, reading books and anything else Alexander wanted to do. By this point, his right eye had failed him and his hand tremors were really bad. His spirit did not falter at all.

One evening, Alexander had just finished eating supper and looked at me, raised his hands to me and said, “Upstairs.” We went upstairs to bed and I cuddled with him for about ten minutes. Tara came in to say good night, we all cuddled up, and he went to sleep about five minutes later. At the time, we didn’t know it was the last time we would put our son to bed.

About two hours after falling asleep, he had a seizure and went into a coma that he never came out of. Over the next few hours he went down to about two breaths a minute and we thought we would lose him that night. We held him sitting up between us in a big family hug for about an hour, but he stayed with us. At that point we laid him down and his breathing evened out and became more regular. By seven the next morning his condition hadn’t changed, so we decided to treat it like any other day. I started by reading him all the children’s books we had with us and then we all watched Toopy and Binoo for a couple of hours. The hospice we were at has a large common area with a large fish tank, projector TV and a large bean bag mattress that he loved to lay on. We believe that even though he was in a coma, he still knew what was going on around him so we took him to the bean bag bed and spent the day there. During the day, we played music, read him books, gave him a nice bath and rinsed out his mouth every 30 minutes to keep him comfortable.

We spent 29 hours making him comfortable, but now looking back we realize he spent 29 hours making us comfortable enough to let him go. We knew for many months that his time was close and we thought we were prepared for it, but he knew better. He knew we needed time to read to him and stroke his hair, time for hugs and quiet “I love yous” and time for us to tell each other we would be okay.

We took him back to bed about 8:00 that night. We had just spent one of the hardest, but most beautiful, days ever. We would be lying if we said we hadn’t cried our hearts out that day or laid on the bed writhing in anguish, trying to imagine life without our “Mister Man.”

His breathing had become more shallow and ragged over the last few hours until it finally stopped. We lay with him and told him he had been brave long enough and he could go now. We had been warned about the “big gasp” that was going to come, but it still scared the hell out of us. It happened over and over. He’d stop breathing for a minute, and then gasp. We realize that he was not in pain when it seemed he was fighting for breath, but that it was just a change in breathing patterns towards the end. This does not make us feel any better though, the most horrid thing a parent can go through is to watch your child gasp for breath as he dies.

Every time this happened, we talked to him and tried to tell him it was okay to let go; he would come back. At some point we realized he was waiting for something. Finally we realized he didn’t want us to see him go, so we kissed him good night and went to sleep.

He had waited for us to go to sleep before quietly passing. At 1:09 a.m. on the 23^rd of October, 2010, he was gone. That was the moment our lives ended. Life will continue on a different path, but life as we had known it, was over.

After a good bit of crying, we washed his face, changed his diaper and dressed him in his favourite pyjamas. We donated his tumour for research, which meant it had to be removed within two hours of him passing. We carried him in our arms to the hospital for the tumour removal.

We decided to have a celebration of life in keeping with the happy life he led. There were balloons, temporary tattoos, bubbles, glow bracelets and a clown. We released over 200 balloons while a dear friend played the bagpipes. It was a beautiful day to celebrate a beautiful life and 130 people came to celebrate with us.

We spread his ashes on his third birthday in the ocean. A baby turtle came to the surface before we scattered his ashes. At the end his hair had grown back and his tumour had been removed, so when his ashes were scattered he was a normal boy, tumour free.”

-Jonathan Brown, Alexander’s father

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