“Kids Cancer Care is the smile you haven’t seen on your child’s face for a while. Their worries melt away and you get to see that happy smile again.” — Kaila

Jack and his twin brother Adam had just celebrated their first birthday. They were busy little guys, following in the footsteps of their big sisters Aiya (3) and Nora (2). Jack and Adam were both walking at 10 months, so when Jack suddenly stopped walking and reverted to crawling, his parents Kaila and Calvin Harapnuk were concerned.

Although they were worried, it wasn’t the crawling that troubled them most. Jack had stopped sleeping at night. “He was fine during the day,” says Kaila. “But he wouldn’t lie down to go to sleep at night. One of us had to hold him upright or he’d cry all night.”

“We could see he wasn’t as happy, but we didn’t know what was going on,” says Calvin.

As the nights grew worse and Jack’s distress melded into days, the Harapnuks grew increasingly concerned and took him to see a pediatrician. The pediatrician thought Jack may be experiencing joint pain from a build-up of inflammation from a cold.

On the August long weekend in 2019, the Harapnuks were referred to emergency services at the Alberta Children’s Hospital. The consensus seemed to be that it was joint pain from a cold, but the neurologist on duty wasn’t comfortable sending Jack home, so he ordered an MRI for the next day.

The MRI revealed a massive tumour encompassing the entire right side of his abdomen. Jack had stage 4 neuroblastoma. They started him on emergency chemotherapy the next day. The goal was to shrink the tumour with chemo and later remove it in surgery.

Jack would spend 200 days in the hospital, undergoing multiple surgeries and multiple rounds of chemotherapy and radiation. There were many scary times when it looked like Jack may not make it — when his white blood cells were dangerously low or when his oxygen levels were plummeting, and he needed to be intubated in the PICU. These frightening moments were woven with interludes of hope and prayer.

Calvin would take a short leave from work while Kaila paused her home-based business. With four children under the age of five, juggling work, household duties, and extracurricular activities while also caring for a child with cancer was emotionally and logistically overwhelming.

Caring for a child with cancer is like living in pandemic times. Families are forced to isolate for months at a time because a cold or flu could be fatal for a child with compromised immunity due to chemotherapy. As the eldest child in the Harapnuk household, Aiya understood more about Jack’s cancer experience. Her role as the responsible big sister was reinforced and she became a bit of a worrier.

The family got to know about Kids Cancer Care and started participating in the programs. Pizza Nights and Cooking and Caring programs were a big help to ease the load by giving Mom and Dad one less thing to worry about. “Pizza Nights were such a gift,” recalls Kaila. “It was often the only thing Jack would eat. He couldn’t actually go right into the Sunshine Room, but his tube could stretch from his room to the doorway of the Sunshine Room, so parents from the Kids Cancer Care community used to come and sit outside the doorway and chat with us. It was our socialization for the week.”

“Cooking and Caring meals were huge!” says Calvin. “Kids Cancer Care knows what’s going to happen to a family when a child is diagnosed with cancer. As a new family, you have no idea what to expect but Kids Cancer Care does, and they think of everything.”

The Beads of Courage program is designed to help children understand what’s happening to their bodies by giving them a tangible way to record their experience. Each bead represents a treatment or milestone on the journey. When a child is too young to make the Beads of Courage, his family can help record the journey for him. Jack’s Beads of Courage are exceptionally long because his cancer treatment was complex with many surprises and setbacks. “Jack is so proud of beads,” says Kaila.

Jack’s family was a part of many programs throughout the years. “We are so thankful to Kids Cancer Care for making it easy for us to do family things together and not worry about the financial burden,” says Kaila. “We were able to do the Polar Express with the whole family and take the girls to Theatre Calgary to see A Christmas Carol. Now more than ever we realize how important every minute is that we get to spend with all our kids as time is so valuable right now.”

The full extent of Jack’s side effects will develop over time. He has permanent hearing loss and while he is Adam’s identical twin, he will always be smaller. With so much time on treatment, Jack has some catching up to do. His balance and coordination are off and he gets tired more easily. With your support, Jack is rebuilding his strength through one-to-one sessions with our Ph.D. exercise specialist and attending group exercise sessions with his siblings.

“They focus mostly on Jack at PEER, but his brother and sisters participate too,” says Calvin. “Jack will do it because they do.”

Aiya and Nora are working with our child life specialist to understand and process their feelings. They talk about cancer and Jack’s cancer treatments. They also make slime, stress balloons, and bubbles, which they use to help manage their feelings. Aiya and Nora also made paintings and a wooden car for Jack. Working one-to-one or in group settings, our certified child life specialist uses medical play to help children cope with medical tests and procedures. She introduces positive coping skills to transform the child’s fear and anxiety into a sense of control and, even mastery, over their experience.

Our camp programs are helping the Harapnuk kids to forget about their worries and be kids again. Aiya cherishes her newfound independence and the friendships she made at Camp Kindle. She came home with a Kindle Award, which she won for making sure everyone was involved in activities at camp. Jack, Adam, and Nora attend our SunRise day camp. With his siblings nearby, Jack is socializing more with other kids and becoming a little more independent.

Our parent programs offer parents a chance to enjoy a rare date night while having fun connecting with other parents in similar circumstances. “Calvin and I did the Parent Cooking Class at the Grey Eagle,” says Kaila. “It was really good. It was nice to spend time together as a couple again. We haven’t had much time as a couple.”

Jack’s treatment took more than three years to complete. There were many touch-and-go moments. While he and his mother were at the hospital fighting for his life, his siblings were at home, missing Mom and Baby Jack. They missed precious time with their parents, so crucial to their development.

“We haven’t been able to spend focused time with our children, doing their ABCs and numbers with them,” says Kaila. “Our tutor Polina meets one-to-one with both Aiya and Nora every Saturday. She’s amazing! And the girls love her.”

Jack hasn’t started school yet, but if he needs support in the classroom one day, our Cancer in the Classroom program will be there for him. Free to Alberta schools, the interactive presentation helps dispel the myths of cancer and fosters greater compassion and understanding in children.

Jack wants to be a police officer when he grows up. Whichever career he chooses, Kids Cancer Care will be there with a Derek Wandzura Memorial Scholarship to help Jack prepare for that career with post-secondary education.

Briony was a vibrant, red-headed 16-year-old, who loved practical jokes and pushing people’s buttons. In July 2006, just after moving to Calgary, she started showing signs that something wasn’t right. She was dizzy all the time and was having mood swings, which wasn’t like her. An emergency MRI would forever change her life.

She was diagnosed with a rare brain cancer, Anaplastic Astrocytoma. The tumour was inoperable, so Briony underwent 42 days of radiation with chemotherapy in the hopes of shrinking it.

1

3000

1

3000

Eventually, Briony became allergic to the anti-nausea drug and her organs started deteriorating from the chemo. When her body could no longer tolerate the treatment, she went off all treatment. 

That summer in 2008, Briony and her family enjoyed some much-needed normalcy. They took a Wish Trip to Australia, a place she’d always wanted to visit, and she later flew out to Penticton, to spend time with her friends.  

On November 17, 2008, Briony was given the news that the tumour was in its final, aggressive stage and that she would not have much time left to live. We gathered her friends and family while she was still able to enjoy their company and had a final house party.

On February 14, 2009, Briony passed away quietly at home with her family and puppy with her. We miss her with all our hearts. She is the wind at her mother Lynn’s back as she rides in the Cycle Challenge – Ride of Courage annually in Briony’s honor.

Though we spent many weeks at a time in the hospital, she never lost her sense of humour, often playing jokes on the nurses and doctors. She would help the little kids on the unit, as she felt they were given a raw deal. She dressed up for Halloween and went door to door to their hospital rooms in reverse Halloween, so the little ones who were too sick could have treats too.

Briony’s Mom Lynn

Hey, I’m Stephen Radu, I’m 30 years old, and my journey with cancer started when I was 13.

Years of fun and laughter shared with my family and friends changed in one day.

It was the summer of 2006 and I started having extremely bad headaches, for the first few months, I figured out that a quick nap was the trick to feeling better. I started grade 8 that year and everything felt normal, for a while. The headaches became more frequent, and my parents started taking me to the doctor’s office who would order different tests to determine what was wrong, but none of those tests could pinpoint the cause.

I started to get other symptoms, such as tiredness and nausea, that made it genuinely difficult to focus on schoolwork, and as a grade-A student, this really frustrated me. I had stopped playing soccer and quit my job cleaning at a local auto repair shop, thinking that doing too much was the reason I was getting sick, but that didn’t help to relieve any of my symptoms.

Again, more trips to the doctors with no answers, but one morning in November my mom came to wake me up. I could hardly talk as my tongue was swollen. We assumed it was just an allergic reaction, so my mom got me into the car and drove to the local hospital. After spending the day there, I went to the Red Deer hospital, and underwent a previously scheduled CT scan where a large mass was found at my brain stem. My dad, mom, and I stopped quickly at home to gather a few overnight things and we were off to the Stollery in Edmonton where the doctors diagnosed me with a Primitive Neuroectodermal Tumor (PNET). Here is where things get hazy for me so I will let my parents fill in the details of my treatments.

“When we received Stephen’s PNET diagnosis on November 24th, 2006, we were in a state of shock, frustration, and anger. We also knew that we were in the right place for his treatment, and that Stephen’s positive attitude would be a huge asset in the battle ahead. He underwent multiple surgeries and had some serious setbacks, the scariest being cerebral mutism, a side effect of his brain surgery.

The worst part of this was that he could not talk for many months, and he lost most motor functions, all of this going on while he went through many rounds of chemo, radiation, and other surgeries. We had doctors tell us that he may never talk again but we knew Stephen better than that and he eventually began to “wake up”.

Since the amazing day at the Children’s Hospital in Calgary where, after four months of mutism, he asked for a drink of water (and later for an orange, a cheeseburger and a question about the $20 bill he’d left in his pants when he was admitted), Stephen made amazing progress toward recovery.

Our family is so grateful for the support we received during those very scary days – from family, friends, our community, and organizations like KCC, who deeply understand the challenges of the cancer journey.

We quickly came to appreciate KCC’s contributions to the daily grind that is cancer treatment including pizza nights, gift certificates for nights out of the hospital, bringing in the Calgary Flame and Stampede’s chuckwagon drivers, and especially Camp Kindle.”

As a result of the surgery, I lost all movement and speech and was unable to go back to school due to a compromised immune system but was given the wonderful support of family and friends offering help and encouragement to me and my family. They came to visit us in the hospital and brought movies, books and magazines for us to occupy our time while my health gradually improved enough to leave the hospital. 

I spent hours in physiotherapy and speech therapy but eventually, I was able to return to school with all my friends that had supported me, and later that year I got to experience camp for the first time with my sibling right beside me!

It seems like a pretty simple thing, but camp is a wonderful place where I could connect with others, have fun, build confidence, and create positive memories after years of difficult times. The emotional support the councilors gave just made everything fun again. I was surrounded by a bunch of kids that were or have been going through the same journey as me and there was an immediate understanding that everyone is just here to have fun and it is a place where you feel “normal”. Every year I looked forward to seeing my old camp pals, and I’ve also made lifelong friendships with some incredible people, as well as a whole list of campfire songs that will be stuck in my head for the rest of my life.

It was in 2010 that things got very cool, until then Kids Cancer Care shared the camp Horizon with other disabled children. That year they bought their own camp near the town of Water Valley, and I was among the first campers at the new, yet to be renovated camp!

It was an amazing time exploring everything the camp had to offer, and I am happy to have been on the team that named the camp, Camp Kindle along with the on-site clinic, Rekindle Clinic!

In 2010 I was chosen to be one of three ambassadors for Kids Cancer Care’s Tour for Kids which is a three-day 300+ kilometer bike ride to raise funds for children with cancer. Together, my dad and I raised $7,220, and with the help of the other riders, a grand total of $287,000 was raised that weekend. Since only 5 per cent of all the cancer research funding in Canada is allocated to childhood cancer, it was great to raise all that money going towards helping young people affected by cancer!

My Dad still cycles in this event every summer, which is being renamed the Cycle Challenge – Ride of Courage, and I am at his side volunteering and supporting all the riders with snacks and cheers. We have met so many amazing people who have been impacted by childhood cancer, they’re my volunteer family!   

My journey with Kids Cancer Care did not stop there as I was then awarded the David Wandzura Memorial Scholarship in 2012, helping me pursue higher education. At that time, I was unsure of my career path, so I started with history and psychology classes and decided business classes were the right way to go!

There are things that I enjoyed before being diagnosed that the unkind effects of cancer treatment took from me. I lost all of my hair because of the chemo and radiation therapy, I find it quite hard to play the guitar due to the deterioration of my fine motor skills, I can’t play soccer and since my balance isn’t the same, I’m unable to ride a two-wheeled bike.

However, everything I lost from Cancer doesn’t compare to what I’ve gained. Many years later, I am proud to say that I am a survivor. I graduated from Red Deer College in 2017 with a business administration diploma majoring in marketing.

I enjoy relaxing and spending time with family and friends, reading books, listening to music, and playing video games.

Cancer changed my life in so many ways, but it also taught me the importance of resilience, and hope!

Thank you for taking the time to read my story, and I want to express my gratitude to everyone who helps Kids Cancer Care by donating, volunteering their time, or holding fundraisers!

-Stephen Radu

There is a magical place north-west of Calgary called Camp Kindle. A place where kids escape their physical and mental struggles of cancer, find belonging with each other, and importantly, heal. Kids impacted by this cruel disease are learning that cancer is something lived rather than conquered.

“My name is Chloe. I am 10 years old, and I have cancer. My favorite time of the year is summer because that’s when I get to go to Camp Kindle. I love going to camp because I get to do lots of crafts, I’m in nature and I meet new people, like my friends Mario and Auralia. Camp makes me feel so happy!”

Chloe

Cancer and treatments have lasting, and sometimes, lifelong effects on kids’ bodies and minds. They face the risk of multiple issues such as blindness, deafness, heart or kidney problems, growth and mobility challenges, and more. And beyond these, kids also deal with mental and psychosocial issues.

Similar to post-traumatic stress disorder (PTSD), kids can be left with physical wounds from childhood cancer but can also carry psychological wounds that will never go away. And this is where Camp Kindle comes in for them and their families.  

Research conducted by Dr. Catherine Laing at the University of Calgary revealed the vital role that cancer camp plays in the healing and recovery of children and their families. Dr. Laing’s research revealed that cancer camp helps children with cancer and families:

1. They find acceptance and belonging at a time when forced isolation and harsh medical treatments leave kids with cancer feeling estranged from their peers.
2. Understand their grief in a new light as something to be lived rather than conquered.
3. Make sense of their traumatic experiences through storytelling and sharing with others in similar situations.

Medical professionals address the complex physical needs of children with cancer, whereas camp addresses their emotional and psychological needs.

Not only does Camp Kindle provide a place of healing for kids who have cancer, but it also plays a significant role for their whole family. Summer Camp programs are open to siblings, who often struggle with feelings of fear and guilt, abandonment and jealousy as parents shift much-needed attention to their sick child, as well as children whose parents have cancer. Camp Kindle also offers year-round camp opportunities for families who can stay for a weekend to escape from their daily cancer struggles and reconnect as a family.

Camp Kindle means so many things to so many people.

To find out more about Camp Kindle and all the other programs and services Kids Cancer Care provide for children and their families, please visit our website at www.kidscancercare.ab.ca or contact us at 403-216-9210.  

During the initial days, I was sleeping a lot, day and night. Nobody really noticed that I was sleeping so much since I have always been a heavy sleeper. After a few days, our family doctor suggested we do some blood tests, and after the results, I was immediately sent to the emergency department. The first night at the hospital, they told my mom that they were suspecting leukemia, and we were then sent to the oncology department. We did not even know what oncology meant at the time! A week later, they confirmed that I had leukemia, and if my parents gave consent, they would start treatment right away because I had a type of leukemia that can spread quickly. My mom only had 3 hours to make this decision.

When my mom first heard the diagnosis, she cried a lot in the office. My dad was not even in Turkey at the time. Once my parents gave consent, my treatment began. I received some blood transfusions.

The next day, I was at the doctor’s office for them to explain my diagnosis. The doctor first asked if I knew what my diagnosis might be. I answered that given all the kids on the unit who have lost their hair and seeing the doctor’s office full of accomplishments around cancer treatments, I guessed it was cancer. And I was right. The doctor then explained to me the treatment processes. When the doctor was explaining my future treatment options, all I could think about was my hair that I love so much and at the time had dyed purple. My first question to the doctor was “will I lose my hair?” At that time, I was unaware of all the side effects I could face from chemotherapy.

My family decided to move to Canada but the journey was not going to be easy. We had already been away from our dad for 5 years and the wait for our visas was not over. We finally got our visa one month after my bone marrow transplant. Even though we were away from my dad for so long, when we finally got our visa to move, my doctor was very upset about us moving mid-treatment. My mom went to the hospital’s patient rights department as well to explain the situation to transfer treatment to a physician. My mom also discussed these issues with a lawyer, who reassured her of some help.

On the day we were supposed to leave, my mom had no hope that we would even be allowed to board the plane. My mom only let my grandma know that we left Turkey once we were actually on the airplane.

During my time in the hospital in Turkey, I started a project called the Wall of Life. It was a wall full of motivational comments from kids who completed their treatment and kids on active treatment. This project was finally starting up by the time I was leaving and sadly I had to leave it behind!

Moving to Canada was great. My treatment options were different here. In Turkey, mydoctor had given me a list of food items that I couldn’t eat. I lost a lot of weight due to that and went from 125 pounds to 66 pounds. Even my mom lost 22 pounds because of all my food restrictions. That was not the case in Canada. My doctor in Turkey did not recommend that I leave for Canada mid-treatment and sharing my medical history and, any accompanying paperwork became difficult. My current physician therefore never got a full history of all the treatments I received.

Since treatment, I have been experiencing difficulties walking. My current physician attributed my walking difficulties to food restrictions since I was not getting proper nourishment. When I moved to Canada, I started physiotherapy right away, and I received hearing aids due to the hearing loss I was experiencing as a side effect of my treatment. My physician in Turkey was so worried about exposure to infections that any treatment I could have received for my hearing loss was delayed.

When a child is going through something as terrible as cancer, it is the whole family that is affected. I have siblings and they were impacted too during my treatment. Esra Nur is my sweet younger sister who is currently 11 years old. When I was on active treatment, my mom used to stay with me at the hospital a lot. Since my dad was away, my two other sisters took care of Esra Nur. At the time of my diagnosis, my older sister Elif Nalan, who is now 20, was preparing for her university exams. Sadly, she was not able to prepare for the university entrance exams because she was helping to take care of our younger sister Esra Nur as my mom, or my eldest sister used to be in the hospital with me often. My eldest sister Meryem Sena, who is currently 22, was my bone marrow donor. She and my mom would take turns caring for me in the hospital. Since she was my bone marrow donor, she took time from her university studies for the procedure.

Moving to Canada has opened us to so much like finding Kids Cancer Care. I go to their PEER exercise program once a week. I started playing golf with them and it was my first time doing so! It is such a beautiful memory for me. I am also a volunteer with the Teen Leadership Program (TLP). I love volunteering with them and getting a chance to help others.

I LOVE Camp Kindle! It is the best thing that my cancer journey has given me. I love everything about it — the songs we sing around the campfire, the delicious food, and the activities. My favorite is the rope course. I love the adrenaline rush, so I love the zipline and the giant swing. I also love that my sister Esra gets to experience Camp Kindle with me. Other kids who are going through similar journeys should definitely experience camp! The staff and volunteers at camp are so genuine and kind. I love camp and am sad to leave every time.

I have completed my chemotherapy treatment and my bone marrow transplant was successful. I do wear hearing aids since treatment, and I do have issues with walking. I wear a brace and use a walker to get around. Even though I am done with active treatment, I have a lot of side effects that I now have to deal with. I also could not go to school for two years and am currently in school with those two years younger than me.

I want to say thank you from the bottom of my heart to Kids Cancer Care for helping me in this journey. I want to thank the volunteers for selflessly spending time with us and opening up their hearts to us. Though I am currently a volunteer with TLP, when I gain all the strength back that I have lost from treatment, I want to continue volunteering with Kids Cancer Care.

I also want to thank the donors and let them know that every cent they donate goes to so many beautiful programs. Thank you so much for giving me and other kids like me the opportunity to enjoy such fun activities and programs. One day I want to donate as well, just like you.

— Sylvia

I’m Brad Rains, I’m 29 yrs old and I am a cancer survivor. I was 6 yrs old when I was diagnosed with Non-Hodgkin’s Lymphoma, cancer that appears in the lymph system that affects boys more often than girls around age 5 to 11.

One day in February of 2000, I felt a pea size bump, which I called a thump on my right upper back. I showed my parents and, at the time, we didn’t think it was anything to worry about. But it grew to the size of a silver dollar over the next couple of days. We went to see our family doctor, who sent us to see a dermatologist, who did a punch biopsy and said I’ll see you in 3 weeks to go over the results. Unfortunately, he called back 3 days later and said he needed to see my parents in his office right away. My parents were sick with worry. They knew it couldn’t be good news and it wasn’t.  The next day we had an appointment at the oncology clinic and my cancer adventure started.

I remember my mother explaining cancer to me. We were standing at the front door of our home and we both started crying. The next day when we were at the hospital waiting to see the oncologist, I asked my Mom: “Am I going to be like Terry Fox, am I going to die?” The Dr. couldn’t tell us yes or no but he did tell me he would work very hard to help me get better.

I had test after test after test and because I was a busy 6-year-old and found it hard to lay still for some of the tests they had to Velcro me to the exam tables just in case I wiggled during a scan. The next day I was scheduled for a procedure to put a central line into my chest. A central line is a tube that feeds chemo into your body. 

With all the tests over and my central line in place, my chemotherapy treatments started. It wasn’t too bad. But as part of my treatment, I had to learn how to swallow pills. The nurses tried everything. They gave me tiny little capsules. They hid them in my food, and they put them in my juice. I got really good at finding them. Finally, I learned how to swallow pills. My mom hit on this idea, one day when she noticed that mini M&Ms were the same size as the little pills from the hospital, so she asked me to try swallowing them. I did and found that chocolate M&Ms were much easier to take than medicine. And after that, I could swallow pills.

It wasn’t long before the effects of the chemotherapy started to show. My hair began to fall out and my face became round and chubby. This was a result of the prednisone. The prednisone made me feel hungry all the time and I ate all the time. Soon I began to look a bit round and chubby everywhere. When I was sick and on treatment at the hospital, my Mom stayed with me and my Dad stayed at home with my brother and sister. It was confusing and sad for them because they were little too and it was hard for everyone to be apart. When I was at home my sister would help my Mom with my medications and with my central line dressing. My brother helped to keep me safe by not roughhousing and tackling me as regular brothers do. Until my central line was removed and then I was a fair game again.

One of the many risks of chemo is the possibility of late effects. Certain types of chemotherapy are hard on the heart, and in late 2020 when I was 27, I experienced one of those late effects and had a heart attack. I was admitted to Foothills Hospital for a week. I was lucky and didn’t require a stent. Now, I have new medications to deal with blood thinners, cholesterol, and blood pressure medications. I was not able to work or drive for a month, and worst of all I was not able to participate in the 2021 AFL (Alberta Football League) season. To this day I am still on some medication and have to see a cardiologist on a regular basis. Being 27 and having a heart attack is really eye-opening.

In the summer of 2000, while I was still going through the treatment, my older brother Mitchell and my sister Ashlynn and I went to Camp Sunmaker for the first time. That first camp experience was a lot of fun, and it made such a difference to have my brother and sister there with me. Kids Cancer Care is one of the few organizations that include siblings at camp. They understand that a cancer diagnosis affects the whole family. This was a great comfort to me. When you’re on treatment and not feeling 100% it would be much harder to be away from home even at camp — without the support of your brother and sister.

One of the coolest things about the camp is that everyone gets a chance to do everything — from the giant swing to the climbing wall, the high ropes, low ropes, arts and crafts, swimming and teepees. At camp, everyone is equal. We are all included in the camp activities. 

Every year I went to camp, I met new friends and always looked forward to seeing my old friends. Friends I met during my very first week of camp.  Being with other campers made me feel strong, we are a special group.

At Camp, we all belong. When you’re a kid with cancer spending most of your time at the hospital or at home, belonging is really important.

Being diagnosed with cancer and having a subsequent heart attack has taught me that life can change in an instant, so it is important to live NOW. My family, friends, and Kids Cancer Care help me to do this. Every day when I wake up healthy and strong, I know I fought and won the battle. 

Since I have grown up and become an adult Kids Cancer Care has also grown up. They are far more than a camp. Kids Cancer Care now offers therapeutic exercise classes to help kids fight the reconditioning effects of treatment. They offer tutoring for kids who struggle with learning issues due to the effects of treatment on their growing brains. And they offer scholarships, so cancer survivors like me can follow their dreams. A lot of families who have a child with cancer struggle financially because dealing with cancer-related health problems gets really expensive. I received a scholarship in 2016 where I went on to get my bachelor’s of Child Studies majoring in Child and Youth Care Counselling.

I am currently working at The Alex Youth Health Centre as a Case Manager. At The Youth Health Centre, we provide comprehensive health services in a multidisciplinary team through a welcoming, accessible, confidential, non-judgmental, and youth-friendly environment. The goals of the Youth Health Centre (YHC) are to provide integrated health, counselling, and social services to reduce barriers for youth aged 12 to 24 and to improve clients’ outcomes. Thank you for supporting Kids Cancer Care. Every year in this province, approximately 190 kids like me are diagnosed with cancer and thousands more are living with the disease and its aftereffects. Please know that by supporting this foundation you are making a difference. Whether it’s at camp, in the research lab or in the hospital ward, your support is touching the lives of kids like me and my family.

— Brad Rains

As a six-year-old boy, I had no idea of the severity and the stresses of childhood cancer. I believe I had a very skewed and sheltered perception of the reality of it. However, my childhood was nowhere near normal. 

My sister Sofia was diagnosed with medulloblastoma, a type of brain cancer, when she was four years old. I was then six and in the middle of kindergarten. One of my earliest memories related to Sofia’s cancer was when she was at a soccer game. She fell and threw up violently. She didn’t stop for hours, and I could tell my parents were getting extremely worried. I can vaguely remember their nervous and stressed faces throughout the rest of the day and night. I remember that my dad thought it was a virus or infection, but my mom had a sinking, a gut feeling that it was something more. They ended up taking Sofia for an MRI, and after that, everything changed. From the perspective of a six-year-old, I had no understanding of the gravity of the situation, but still felt the impacts of all that was going on.

When I first saw Sofia in the hospital, she was unlike anything I had ever seen before. It was a blur of beeps, doctors, and tubes. I saw Sofia lying motionless in bed, and it kind of reminded me of the hospital scene from the movie E.T. I was appalled and didn’t know what to think. One of the most surprising things about Sofia was all the tubes and drains connected to her body. I remember my mom ‘feeding’ her through an NG tube, which I didn’t understand. I remember thinking, “Why can’t she just eat normally, and what is the purpose of the tube in her nose?”

Sofia also had a tube connected to her chest, which caused her pain. Mom would inject some sort of medicine through this, and even after the tube was taken out, there was a huge scar, which she still has to this day.

Next, Sofia underwent surgery to have the tumour removed. After the surgery, the doctors diagnosed her with something called posterior fossa syndrome. This resulted in her being unable to move, see, or function in any way. This was shocking as in my mind other children who had surgeries came out just fine. My parents were in disbelief and were confused as to why this had happened. 

During Sofia’s treatment, we started to invest in physiotherapy and speech therapy. I vividly remember the therapists teaching Sofia basic speaking skills and basic vocabulary. I was confused as to why she had to relearn all these basic skills. In addition to this, she was always in a wheelchair, not being able to walk at all. The physiotherapists tried to help, but it was months before she could even walk with assistance. Sofia also had no hair, which was a result of the chemotherapy, and now as a seven-year-old, I found this so different from how I knew her. 

After Sofia’s surgery, our home life changed so much. I would often wake up in the morning as a kid, to see my grandma waiting for me downstairs. She would tell me that my parents had gone to the hospital with Sofia again in the middle of the night. I would sometimes get frustrated that they were never around, and would always rely on friends, uncles, aunts, and others to look after me and drive me places. My parents tried their best to give me a normal childhood with sports and extracurricular activities, but it was extremely difficult and a huge challenge. They would constantly be at appointments or meetings for Sofia, all while managing their own jobs. In fact, it was too stressful that my mom had to take some time off work, so she could be with Sofia. I can only imagine the impact it had on my parents back then.

In the winter of grade 1, my parents announced that our family was going to go to Houston, Texas for a couple of months. This was because the chemotherapy was unsuccessful, and Sofia needed brain radiation to be completely rid of the cancer. My parents made it seem like a Christmas vacation and got me really excited for it. However, when we got there, it was the same as Calgary. Waking up to one parent with Sofia gone, staying in hospital waiting rooms for hours, and an overall sense of loneliness was ever-present. I remember waking up at 10 am and having to play by myself quietly because my parents and Sofia were asleep until 2 pm, as they were at the hospital late the night before.

I did make friends with some of Sofia’s doctors, and they were extremely kind and thoughtful. One of the doctors would always give me new puzzles to solve and talked with me every day. This went on for about a month; however, my parents then told me I was going back to Calgary for school. I was under the impression we would all go back together, but my mom, Sofia, and Sonya, who was only two at the time, were going to stay behind to complete the radiation. In all, I spent two more months in Calgary while the others were in Texas, and I was still confused as to why they didn’t come home. I remember celebrating my birthday in January, with only my dad, and FaceTiming my mom and sisters. I was overjoyed when they finally came home, but Sofia wasn’t the same. It felt like all the progress with speech and coordination she had built up over the past year was thrown out the window. It was like starting from zero again. 

After the radiation was finally completed, and Sofia was deemed cancer free, there was a stage of pure celebration and pure joy. However, the true effects were slowly starting to appear, and it was a very difficult life, and nowhere near back to normal. Although Sofia was cancer free, the treatment had permanently damaged her brain, and so her struggles with speech and coordination were still present. She did physio every day, and we hired numerous therapists throughout the following years. She is still practicing to this day and is still working so hard at physio, speech, occupational therapy, and with her psychologist.

Sofia also received additional support through Kids Cancer Care’s therapeutic exercise program PEER. Kids Cancer Care has a Ph.D. exercise specialist who worked with researchers at the University of Calgary Wellness Lab and health care professionals at the Alberta Children’s Hospital to develop this exercise program especially for kids affected by cancer. It helps patients and survivors manage the immediate and long-term side effects of cancer treatments. Both Sofia and Sonya go twice a week and they love it because they get to have fun being active together, while socializing with other kids affected by cancer.

In terms of schooling, Sofia was supposed to go to school with me; however, as a result of her treatment, she had to attend Gordon Townsend School at the Alberta Children’s Hospital. It would have been impossible for her to attend a normal public school due to all the support she needed and because her immune system was so compromised by the chemo. From my point of view, I was disappointed that she wouldn’t be able to attend the same school as me and I didn’t understand that there was no way to make it to work. 

In addition to all these things, lots of the initial support received during her treatment time began to change. In the beginning, there were always people around and in my house: friends, family, neighbours, with many dropping off meals and toys for me and my sisters, etc. (which was extremely helpful and appreciated). As a child, it likely helped to shelter me from the horrible reality of what was happening with Sofia. However, after her treatment, things changed and there wasn’t that same flurry of people around. For me, it was like people believed that everything was now all of a sudden better because she was cancer free…but that was far from the truth.

We did however find new ways to gain support, and one of the biggest ones was through Kids Cancer Care. The community of people there were relatable and considerate and helped my sisters and me create so many new memories. My first year at Camp Kindle was an amazing experience. I also remember things like going on the Polar Express, meeting the Flames Hockey team, and skiing at Canada Olympic Park with Kids Cancer Care. This year, I have joined the Teen Leadership Program and I am looking forward to the opportunities this program offers. Overall, the Kids Cancer Care community helped me feel like I belong, and also made Sofia and Sonya feel welcomed and happy as well.

Now, eight years since the original diagnosis, great progress has been made, and I am extremely proud of all the work Sofia has put in to get where she is today. However, there are some things that will never be the same again. She will most likely always have hearing, cognitive and balance challenges, she won’t grow much hair at all, and she may not gain much height. However, we can only hope going forward that lots of progress will be made, and she will keep improving, one step at a time.

Read the poem that Shaan has written for her sister Sofia below.

My sister….

Our journey with childhood cancer began when Sofia was just four years old. The memories we had made until that point were really blissful, and when I look back at them now, they almost seem like a fairy-tale.

Sofia was starting to blossom into a beautiful and caring little girl. She was always happy to play with her big brother Shaan and was already showing an incredibly nurturing and loving nature with her younger sister Sonya, who was two at the time.

The lovely and delicate Miss Sofia was very sensitive, and was actually afraid of Santa Claus the first time he came to daycare, although she conquered her fears the following year and was able to sit on his lap without crying.

One day at a soccer practice, Sofia stumbled and fell, but what was unusual was she began to vomit. We were reassured by many that day and in the following weeks that her symptoms were not that unusual, given that there were viruses circulating and that the chances of them representing something more sinister were low.

Perhaps I was in denial, but I tried to rationalize these events each day after that first fall. Being physicians, both myself and my wife Shelly, recognized that there were other possible explanations, and while Shelly was pushing for more investigation, I tried to play the reassuring father and husband , hoping and praying that the symptoms would resolve.

But they didn’t. Even on the day of the MRI, when Sofia was still able to do a somersault in gymnastics and after being examined by pediatricians with absolutely no abnormal findings, I felt confident that they were going to reassure us that everything was fine and there was nothing to worry about.

I will never forget that moment, coming out of the MRI suite when the technician directed me toward a room where Shelly was sitting, waiting for me to return. Shelly had already been devastated by the images and what the radiologist had said. The images revealed a massive brain tumour, which we later confirmed as a group 3 metastatic medulloblastoma – one of the worst and most aggressive forms of childhood brain cancer.

Our world came crashing down in an instant.

While I am not a neurologist or oncologist, after seeing the images myself, I knew that life would never be the same, and that Sofia was destined for a long and painful journey that was only just beginning.

What followed was a whirlwind of events, many of which I have blocked from my memory, I’m sure as a defense mechanism. After the emergency surgery to remove the bulk of the primary tumour, Sofia suffered from posterior fossa syndrome, or cerebellar mutism. This meant that she could not move, talk, walk, or even see to interact with us. She must have been so terrified in those initial days, waking up in that state, with tubes all over, and not being able to do anything but cry.

Shelly and I faced life-altering decisions about further treatments with chemotherapy and radiation while helping her to rehabilitate and learn how to move again. Sofia did slowly start to recover, and I remember that it was on Father’s Day on the oncology ward when I was pushing her around in a wheelchair that she started to show signs of movement again – the best Father’s Day present I could hope for.

Over the next six months, we struggled through one of the most aggressive chemotherapy regimens possible in the hopes of eliminating the cancer so we could minimize craniospinal radiation, the side effects of which we had researched in excruciating detail.

The whole family temporarily moved to Houston where Sofia received proton radiation at the MD Anderson Cancer Centre. We were hopeful that we could overcome the cancer with this final leg of therapy with a low-dose approach. Unfortunately, Sofia didn’t seem to be able to catch a break. The cerebrospinal fluid still showed cancer cells even after the ‘atom bomb’ of chemotherapy she had suffered through. This meant we had no choice but to give her the high-dose radiation. The radiation caused significant cerebellar and further brain damage, and this has affected many different functions that will remain significant issues for the rest of her life.

Throughout all of these treatments, Sofia seemed so brave, strong, and accepting. Our hearts hurt with every needle poke, NG tube, and toxic therapy she received, but she endured. And although she has had a number of complications since, she has maintained that lovely, delicate, and caring charisma that she has always had, and that draws people to her. The challenges that she has been left to deal with include hearing, balance, motor skills, speech, and cognition.

With the support of many specialists, Sofia has made a lot of progress over the years. She has relearned to feed herself and to walk with a walker. Her language skills have also improved. She understands more and is better able to follow conversations.

With all of her ongoing challenges, Kids Cancer Care’s PEER program and Education Support Programs are outstanding resources that are helping Sofia on her long road to recovery.

PEER is an evidence-based therapeutic exercise and physiotherapy program developed by a multidisciplinary team of researchers at the University of Calgary and the Alberta Children’s Hospital.

For two hours each week, Sofia engages in therapeutic exercise at PEER. She works one-to-one with Kids Cancer Care’s Ph.D. exercise specialist to build her bone mass, core strength, balance, flexibility, muscular and cardiovascular capacity, and her overall physical literacy.  PEER also offers enormous social benefits. Both of our daughters attend PEER and they have a great time being active together while connecting with other kids.

Sofia is also receiving tutoring support through the Education Support Program at Kids Cancer Care. She and her tutor work diligently on her math and reading skills, filling a critical gap not met through school or other therapeutic services. But it isn’t only for academic gain. Sofia’s tutor is amazing and helps her so much. They had a strong bond and that connection really motivate Sofia to work even harder.

Sofia just started junior high, which means she had to move to a new school. Navigating this transition and finding the right school with the right support has been challenging to say the least. She was just starting to feel settled in her new school when she fell and suffered a concussion. She also fractured her hip but is healing nicely. Kids Cancer Care’s education support specialist is helping us to navigate the education system so we can ensure Sofia is receiving the right support moving forward.

Sofia will always have to work exceedingly hard for the smallest of gains and as hard as she works, she will never be fully independent. Shelly and I worry about Sofia when we’re gone. Our goal is to help her become a little more independent each day.

Everyone in the family helps with Sofia’s care and support. As Shaan and Sonya mature, they are taking on more responsibility. Sonya helps with her morning and evening medications while Shaan gives Sofia her daily growth hormone injection.

Shaan and Sonya also enjoy social time with their sister. They’ve learned to make sure her hearing aids are in before speaking to her and they are always so gentle with her. Sonya plays tummy-time games with Sofia to help build her core and Shaan reads her a bedtime story each night. Shaan is now 14 and is able to babysit. He understands that he can never leave her side. His focus has to be 100 per cent on Sofia.

While Shelly and I are extremely proud of our children, we worry about the toll that caregiving may have on them. We want them to have responsibilities and to understand they need to help their sister. But we don’t want them to feel burdened by it. We want them to have a normal childhood too. We want them to love being with Sofia.

Spending time together as a whole family is not as easy as it may seem. It can be hard to do activities together as Sofia can’t always do what the others can and not everyone wants to do crafts.

We worry about Sofia’s isolation.

This is where Kids Cancer Care has really helped a lot. Their programs and events make family outings and activities easier for families like ours. It means a lot to our family to attend these events – from Camp Kindle in the summer, theatre nights, and to the Polar Express train ride in the winter. Kids Cancer Care even helped Sofia go adaptive skiing at COP during Family Ski Day, while her brother and sister also skied. Sofia was out there for two hours. She didn’t want to come in. Check out the video of Sofia adaptive skiing below.

This summer our children also enjoyed a week at Camp Kindle together. For one week, they rediscovered what it means to be free and what it feels like to be “normal” again. They couldn’t quite articulate it but you could tell they felt it. They made friendships and memories they will cherish for years.

These programs and events give our family a chance to create unforgettable memories as a family. They provide a sense of belonging, and help our kids feel that there are people who understand what it’s like to go through this. Most importantly, they help us to cherish every day we have with Sofia, and make new memories with each one.

Our journey was extremely difficult – the weeks and months spent in the hospital – trying to balance the needs of a two-year-old and six-year-old, while doing chemotherapy with another child and moving the family to a different city for treatment. Watching a delicate and defenseless child suffer through the adverse effects of therapies is unbelievably difficult. We were so thankful and felt blessed to have the support of many friends and family in that acute phase, who helped look after the kids and bring us meals and toys among many other things.

There have been many people and organizations that have played a helpful part in getting our family and Sofia to this point, but Kids Cancer Care certainly is unique. They were there from the beginning with Pizza Nights on the oncology ward and have been there ever since. Kids Cancer Care seems to understand that dealing with a disease like this is a long-term issue for the family, and that support is really very important for many months and even years after a major event like this transforms a family.

We are really very grateful for all of the volunteers who help us participate in these programs and events. We are also very grateful to all of the people who support Kids Cancer Care with financial gifts. We thank you for your support of this fantastic organization that has meant so much to us, and want you to know that your help and involvement in Kids Cancer Care has been invaluable for many families. Your generosity and kindness will undoubtedly be felt by many in the future. Thank you.

~ Naushad Hirani, Sofia’s father

Sofia’s photo gallery

Iqra Rahamatullah is looking forward to a bright future in medicine, but a few short years ago, her future wasn’t quite as certain. In grade 11, Iqra was living one day at a time, managing treatments for Ewing sarcoma and juggling the demands of high school.

“I was not feeling well,” says Iqra. “I was taking a lot of days off school, dealing with a lot of symptoms like brain fog, memory impairment, and fatigue. I had a lot of obstacles that the usual student doesn’t have, and I felt like it really put me back.”

While Iqra’s experience is common for youth affected by cancer, many do not have such a bright future.

“Young cancer survivors have lower educational outcomes and are not employed at the same rates as their peers. We need to support them in improving that,” says Dr. Fiona Schulte, Ph.D., an associate professor and researcher at the University of Calgary Cumming School of Medicine and Alberta Children’s Hospital Research Institute. “All too often our idea is that when kids finish their cancer treatments, the hard part is done. But for many, the hardest parts are still to come.”

Also a registered psychologist at the Hematology, Oncology Transplantation program at the Alberta Children’s Hospital, Fiona recently co-chaired a multidisciplinary international task force to develop global recommendations for the surveillance of education and employment outcomes of young cancer survivors. The goal is to better support them, so they don’t fall behind their peers.

Published in the journal Cancer, the international guidelines recommend that all survivors receive regular screening for educational and employment outcomes, like the regular physical screening they receive as cancer survivors.

“Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult cancer,” says Fiona. “We now have a clinical practice guideline with internationally harmonized recommendations for surveillance of education and employment in survivors diagnosed before 30 years of age, which can improve their quality of life.”

Kids Cancer Care’s educational programs were developed with these issues in mind: “The intention behind everything we do is to help children survive and thrive in body, mind, and spirit,” says Christine McIver, founder, and CEO of Kids Cancer Care. “We know that radiation and chemotherapy can compromise kids’ cognitive function, so we want to support them in their education. We recognize the need for interventions and developed our educational programs in response to this.”

Iqra can attest to the need for support. “I had a lot of family and school support available and was able to get the grades I needed, but without that support, I feel like things could have gone wrong for me.”

Thanks to your generous support, our Education Support team can focus on building strong relationships between tutors and learners. This provides a safe space where kids are not only supported in subject matter and learning skills but also in building their confidence in learning and a deep sense of belonging.

“The magic here is bringing together one-to-one personalized, targeted learning support that goes beyond specific educational metrics and builds skills that kids can carry back into the classroom and into their personal lives,” says Leslie Friesen, education support specialist at Kids Cancer Care.

Our Education Support Program is presented in memory of Steven Fowler who loved school and loved learning. We are deeply grateful to the Fowler family and all our generous donors who support our education program. Together, we are improving education outcomes and creating brighter futures for young people affected by cancer.

~ Revised with permission from the University of Calgary’s Cumming School of Medicine and the Alberta Children’s Hospital Research Institute.

To mark National Volunteer Week, we’re celebrating another outstanding volunteer — Hoppy! 

Val (Hoppy) Hopwood first bounded into our lives at Kids Cancer Care in 2006. Since that time, she has volunteered every year with one exception. “I’ve volunteered at camp every single year except for the year I was married.” Even though she was planning a wedding, scheduled for the week after camp, Val was determined to volunteer. But when her mother suffered a stroke, Val was forced to concede and accept that camp just wasn’t in the cards that summer.   

A paramedic of 21 years, Val was first introduced to Kids Cancer Care by a former Kids Cancer Care volunteer and paramedic Brent Chiswell, who sadly passed away from cancer a few years ago. While Brent introduced Val to Kids Cancer Care, it was another volunteer Ernie Greenwood who inspired her most. 

“Ernie is such a great guy,” she says. “He was retired and going out to camp every summer as a one-to-one aide. I used to think, ‘If he can do, I can too.’” And she did.  

After a two-year hiatus during the pandemic, Val is looking forward to camp this summer. “It’s one week that I can act like a kid without anyone judging me. I love it. I plan my summer around camp every year.”  

When asked what keeps her coming back year after year, Val’s response is unequivocal. “Every year, I learn something new from the kids. They teach me that life isn’t so bad. I get upset over a bad hair day and then I see a child hiking with an artificial limb without complaint and it puts everything into perspective for me. They’re really remarkable kids.” 

Thank you, Hoppy and all the amazing volunteers, who make camp possible for our kids!  

Let’s close National Volunteer Week with a bang by giving our volunteers the biggest shout out ever! Everything we do depends on you — our superfantabulous volunteers! 

If you’re interested in volunteering at camp this summer, click here.