“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.
This June we have the absolute pleasure of awarding 12 young adults scholarships to support them in furthering their educational journeys, and we have the pleasure of sharing these students with you. The Derek Wandzura Memorial Scholarship was named in memory of a charming little boy who, with his smile and engaging personality, would hold the attention of any room. We know Derek would be “thrilled beyond belief to know that this scholarship was in his name,” said his mother Christine Mclver.
Four of these recipients also received Tiana’s Top up which is in honor of Tina Shoebridge who was one of Kids Cancer Care’s first campers. After battling cancer 5 times Tiana Relapsed once again in 2020 at the age of 40. Her life partner Colin Binding established Tiana’s Top up in her memory intended for individuals who demonstrate three virtues Tiana herself lived; supporting her community through volunteer service, bringing hope to others by being positive even in the face of adversity, and encouraging others to strive to be and do better. The recipients of the top up are Amanda Johnson, Baylen Lapierre, Breah McGladdery and Jaxon Leavitt.
Over the last 15 years 208 deserving young people have received over
$400,000 in scholarships, and we are so proud to continue that tradition.
AMAN RAVJI
Perseverance is the word that comes to mind when describing Aman Ravji.
Diagnosed with stage 4 osteosarcoma in late 2019, Aman has persevered through
treatment ever since, never giving up no matter how difficult the situation is.
His strength and perseverance have served him in his leadership endeavours. He is a valuable member of the Kids Cancer Care Teen Leadership Program and his school’s leadership class, volunteering in the community at his local mosque and for children at a daycare. Aman has also shared his wisdom and leadership in the creation and presentation of a TED-Ed Talk on the topic of radical acceptance. Wow!
Aman plans to attend Mount Royal University in the fall where his
leadership skills and entrepreneurial drive will thrive in their business
program. We would like to wish Aman a huge congratulations, his passion and
desire to create something positive in the world are evident and we know from
first-hand experience what a positive impact he has made already!
AMANDA JOHNSON
Diagnosed with myelodysplastic syndrome and acute myeloid leukemia at the
young age of 2, Amanda Johnson was given only a 30 per cent chance of survival.
She relapsed at age 4. Defying the odds twice, Amanda now deals with the
long-term effects of cancer every day and she overcomes each day with strength
and resilience. She is truly an inspiration.
A standout comment from one of her teachers compares Amanda to St.
Theresa of Calcutta and St. Therese of Lisieux, consistently putting others
ahead of herself while being a ray of light for those around her — even in
times of great pain. We see Amandas light, in her volunteer and fundraising
efforts in the Teen Leadership Program, in her role as a Kids Cancer Care
spokes kid, and a kid coach in our High Hopes Challenge. And we have
experienced her light in her poetry.
We know Amanda will continue to shine her light at the University of
Victoria. This young woman plans to study sociology while learning from and
continuing to help others. It is our pleasure to congratulate Amanda, we have
loved being a part of her journey!
ARLO JACOBSEN
At the age of 14, Arlo Jacobsen was diagnosed with Wilm’s tumour. It turned his life upside down. His kidney was surgically removed, and he now faces the physical and psychological impact of cancer. As if cancer wasn’t enough, Arlo completed chemotherapy in March 2020. Just as the world was going into lockdown because of the pandemic and Arlo was looking forward to some normalcy, he faced isolation again. Kids Cancer Care’s Teen Leadership program helped him process, grow and connect at a time when everyone was craving connection.
Arlo is a caregiver by nature. He cares for his 30-some plants, 20-year-old cat, and has earned his certification as a volunteer medical first responder volunteer with St. Johns Ambulance.
This fall, he’ll be stepping into the Bachelor of Nursing program at the University of British Columbia Okanagan Campus. Since the age of 6, Arlo has known he wants to be a nurse. While the motivation and reason may have changed throughout his life, his highest goal has always been to help. With great pleasure we congratulate Arlo! His future patients will be lucky to be cared for by him.
BAYLEN LAPIERRE
Positivity and optimism are two words that personify Baylen LaPierre. He radiates these qualities and so too did his scholarship application. At the age of 13 Baylen was diagnosed with stage 4 brain cancer, Pineoblastoma. Having a cancer located in the brain near the pituitary gland and ocular nerve has had an impact on learning, but Baylen perseveres and advocates for himself and his education daily.
Baylen plans to become a dataanalyst as he loves math and numbers. He will be attending University of British Columbia Okanagan campus for a business analytics degree. We can’t wait to see which school Baylen ends up at. His positivity and love of life are contagious, his smile infectious, and his involvement in Kids Cancer Care has made an amazing impact. We would like to thank Baylen for his volunteer service as a Kids Cancer Care spokes kid and as a teen leader!
And most important, we would like to wish a huge congratulations to
Baylen!We have loved having him in our community.
MICHAEL ARTHUR
Michael Arthur is a two-time cancer survivor of Acute Myeloid Leukemia and T-cell Acute Lymphoblastic Leukemia. A hardcore hockey enthusiast, Michael loved playing before his cancer diagnoses. These days, he enjoys watching his brother compete and catches as many NHL games as he can.
As an active volunteer, Michael shares his love of hockey by supporting the coaching efforts of local hockey teams. This fall, Michael will be eching out time in his busy schedule to pursue a nursing degree at the University of Calgary. We hope Michael’s future brings you scores of opportunities. We know he’ll become an all-star in the nursing field.
JADE KAZAKOFF
In April 2020, after a few months of not feeling well, and going to various hospitals and clinics to determine what was wrong, Jade Kazakoff was diagnosed with T-cell Acute Lymphoblastic Leukemia and Central Nervous System-3B disease. With the support of her family and the impact of her Beads of Courage, Jade was able to process, accept and share her cancer journey with others.
Throughout high school, and particularly in grade 11, Jade discovered a
love and appreciation for construction during a cabinet-making class. This
piqued her interest even more, and now Jade has decided to pursue a diploma in
architectural technologies at SAIT this fall. We can’t wait to see the future Jade
builds! Congratulations, and we wish her the best of luck.
LAUREN CHARBONNEAU
Lauren Charbonneau was diagnosed with a Wilms Tumour when she was 2 years old. Also known by her self-declared camp name Clover, her involvement with Kids Cancer Care began at age 6. She has jumped into just about every program ever since. Lauren writes in her scholarship essay that Kids Cancer Care holds a special place in her heart. She says the support and joy we have given her is unmatched, and yet it is she who continuallybrings US joy.
Fun fact for you, Lauren is also a national-level baton twirler, which
has brought her to places like New Brunswick for competition. With a keen
interest in Asian culture, Lauren is pursuing a diploma in Hospitality and
Tourism Management.
A big congratulations to Lauren as she journeys into this next adventure
in life. We have no doubt that she will continue to bring joy to those around
her. We happily congratulate Lauren and look forward to witnessing the impact
she has on her communities.
BREAH MCGLADDERY
Breah McGladdery was diagnosed with Hodgkin’s Lymphoma in October of 2022, completing treatment in January of 2023. Breah is described as someone with grit, and nowhere is this is more evident than in her fight against cancer and in her push for safer communities.
Breah serves as a student representative on the Town of Carstairs Community Policing Advisory Committee. The intersection between this committee and her schooling has afforded Breah the opportunity to put into motion proactive strategies and programs such as ‘positive tickets’ at her high school. She plans to continue her education in the policing field by taking the criminology and justice studies program at Lethbridge College.
This educational path has the potential to open a range of career
opportunities for Breah where she will continue to impact her community in
positive ways.We look forward to seeing the impact Breah will have in the community by
creating safe spaces for all to thrive. Congratulations!
JAXON LEAVITT
Residing in Drumheller, Jaxon Leavitt was diagnosed with Acute Lymphoblastic Leukemia in 2013, which meant a lot of driving to and from Calgary for treatments. It also meant time away from his family, missing his siblings and his home.
Jaxon has taken on many roles in his life, but the ones he loves most are
being assistant captain and assistant coach in hockey. These leadership and
volunteer roles have helped Jaxon realize that he wants to pursue a career to
support himself and his family, but also one in which he can make an impact in
the lives of others.
Jaxon has been accepted into the University of British Columbia’s
combined degree program in Bachelor of Applied Science and Master of
Management. Wow! Congratulations to Jaxon, as he takes this big step in his
life to pursue his passion for helping others.
KAI VAN DER LOOS
In 2014 Kai Van der Loos was diagnosed with a Soft Tissue Sarcoma that was so rare, he had to fly to Texas for surgery to remove it. Diagnosed in grade 3, Kai did not return to school full-time until grade 7. This impacted Kai’s learning and knowledge.
He took it upon himself to advocate for his need for a tutor and that is
how Kai became involved in Kids Cancer Care’s tutoring program. Matched with a
Kids Cancer Care tutor a few years ago now, Kai works tirelessly on his
schoolwork and time management. He and his tutor initially began their tutoring
journey by reading Percy Jackson: The Lightning Thief to improve his
reading comprehension, but now it is a tradition for them to read a book
together each summer.
As with Percy Jackson, he shows immense strength and bravery. As he steps
into this next chapter of life, pursuing the university entrance program at
Mount Royal University, we are excited to see what the next book, the next
chapter and next sentence will bring. Congratulations, Kai!
PAUL SARARU
In 2019, during Paul Sararu’s first few days of high school, he was
diagnosed with osteosarcoma in his knee. What should have been a routine X-ray
to check on a knee injury from a month prior led to a crisis in his world.
After treatment and a total knee replacement, Paul had to pivot his love for
all sports and through that found a new passion for one sport in particular,
golf.
Paul is dedicated to entrepreneurship, helping to run Joy to Job, a
non-profit organization that allows high school students to explore different
career paths by connecting them to qualified professionals through webinars.
Paul also founded an AI company that helps integrate language models, such as
ChatGPT, into educational institutions in a safe and ethical way to encourage
learning and curiosity.
With all of this in mind, it is no surprise that Paul is pursuing a
Bachelor of Commerce, with a specialization in finance at the University of
Calgary. We look forward to seeing Paul score a hole-in-one on the golf course
and in life! Congratulations!
DR. LESLIE ROBERTSON
We would also like to acknowledge Dr. Leslie Robertson, who has been volunteering on our scholarship committee since 2008. We have been made all the better for her attendance in our community and we are so grateful for her brilliance, insight, and positivity. We truly shine brighter because of her brilliance.
Dr. Robertson will be stepping down from her volunteer responsibilities after this year, and in the spirit of beginning new chapters, we so excited to see what life brings her in these next phases.
A heartfelt congratulations to all our outstanding scholarship recipients, you have earned it! We can’t wait to see what you do in the next chapters of your lives and from everyone here at Kids Cancer Care GOOD LUCK!
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
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.
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:
They find acceptance and belonging at a
time when forced isolation and harsh medical treatments leave kids with cancer
feeling estranged from their peers.
Understand their grief in a new light as
something to be lived rather than conquered.
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….
Iqra Rahamatullah
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.
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.
Published in the journalCancer, 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.
Thank you to our generous fundraising partners who make our programs and services possible