Natasha’s ripple: I have more to say

“If I die, really make sure, like make sure I’m not sleeping. If I go into a coffin to bury me, put a straw down just in case they made a mistake and I’m still alive. Or put a string down with a bell.” — Natasha.

Natasha Gould was 11 years old when she first started having conversations with her parents about her passing. She was energetic, whip-smart, and a natural leader. Natasha’s life was far too brief, but she found her purpose and lived it passionately.

The diagnosis

It was March 2015 when Natasha first started experiencing problems with her coordination and walking. She suddenly started tripping over her feet and falling. One day, she came home with a black eye from a fall.

When Natasha bolted down the stairs one morning, asking, “Why didn’t anyone tell me my face was drooping?” her mother Saskia Van Breevoort knew it was serious. “That’s it,” she said. “We’re going to the hospital.”

That morning, Natasha and her mother went to the hospital. Natasha was whisked away for an emergency MRI that same day. Saskia went in to hold her hand because she was a little claustrophobic in tight spaces. By this time, Natasha’s father Bill Gould had arrived and was in the waiting room.

They learned that day on May 1, 2015 that their daughter had brain cancer. It was diffuse intrinsic pontine glioma (DIPG). DIPG is not a solid tumour. It is a diffuse tumour, so it is interwoven with healthy brain tissue, making it inoperable. They also learned that DIPG is largely incurable and has an average life expectancy of about 11 months.

“It’s very surreal when you get that news, and you hear the words: ‘Terminal. 1% survival. No cure’,” says Saskia.

“The doctor’s advice was to have the summer of a lifetime,” Bill says.

Natasha underwent two rounds of radiation to shrink the tumour, but the most it shrunk was 15%. They still celebrated.

To undergo radiation to the brain, staff create a mesh mask perfectly contoured to the patient’s face. The mask is then bolted to the gurney to keep the patient’s head still so only cancerous tissue, and not healthy tissue, is targeted. 

When Natasha asked to do more radiation, her parents had to tell her that the radiation would not save her life. “Natasha, you don’t have to do this,” Bill explained. “This won’t save your life. It will only prolong your life.”

A star is born

Early in treatment, Natasha started blogging about her experience. It wasn’t long before she amassed quite a following and eventually caught the attention of Mike Gillette of  The  Truth365 and CureFest. The Truth365 and CureFest are American-based non-profits that advocate for more research funding for children’s cancer research.

As part of their advocacy work, The Truth365 features a different child with cancer every day of the year. Mike flew to Calgary to interview Natasha. He was so impressed, after interviewing her, he invited her to speak at CureFest 2015 in Washington, D.C.

Natasha was all in.

The night before CureFest, about 250 people were gathering to hold a candlelight vigil in Lafayette Park, across the street from the White House. When they arrived, the park was closed, and the United States Secret Service denied them access. This bothered Natasha immensely and she ruminated on it all night. The next day, she seized the moment and publicly raised her concerns during the preamble to her CureFest speech.

No one could have predicted what would come next. Natasha made national headlines. The story spread like wildfire, resulting in a public apology by the Director of the Secret Service Joseph Clancy, who would later become a lifelong friend of the family.

Troubled by the misunderstanding and turn of events, Joseph Clancy reached out to Mike Gillette and invited them back to Lafayette Park: “How about in a month’s time, you come back, and I guarantee it won’t be cancelled.”

When CureFest returned a month later, the U.S. Secret Service had included Natasha’s website and brand colours on their website. Joseph Clancy later recorded a video for Natasha’s Celebration of Life.

As the brain cancer increasingly limited her physical functioning, Natasha grew stronger in spirit and resolve. She blossomed into a formidable activist, giving numerous media interviews in Canada and the U.S. She also gave a TEDx Talk for which she received a standing ovation. 

Natasha was sick with a cold but when she started speaking on that TEDx stage, she came alive. She didn’t want to get off the stage. “I have more to say,” Natasha said backstage. “I have more to say.

If Natasha had lived to be an adult, she would have likely pursued a career in the arts, communications, or journalism.

“She gets this from her mother Saskia,” Bill points out. “I think my response would have been to go hide under a rock somewhere, but Natasha wanted to be proactive. She wanted to rise up and share her story. It was ramping up of her personality.”

“She was forever writing a song, forever writing a story,” says Saskia. “This was a natural extension of who she was. She became an advocate for other kids fighting cancer.”

Natasha understood the disparity in funding between adult and children’s cancer research. She was passionate about righting this inequity, as are her parents today.

“Think of all the technological improvements you have every time you upgrade your iPhone,” says Saskia. “We have the technology, the wisdom, and the knowledge, and with God’s help, we can come together to collaborate to find a cure. Only five per cent of cancer research funding goes to children’s cancer research. When you look at the years lost for children, the aggregate of that just doesn’t make sense.” 

Bill agrees: “They’ve made advances in radiotherapy but the basic protocol for DIPG hasn’t changed for many, many decades. In fact, Neil Armstrong’s daughter died of DIPG in 1962, before he went to the moon, and the protocol is still the same.”

Waiting for a miracle

As Natasha’s condition worsened, they began having conversations about the afterlife.

“Your faith grows stronger,” says Saskia. “You’re waiting for a miracle to happen. Either here or in heaven your miracle will manifest.”

“Mom, what’s heaven like?” Natasha would ask. 

Saskia would reply, “’Well, Opa is there, and he always wanted a farm. I’m sure he has a piglet for you,’ [Natasha always wanted a piglet.] ‘And your lesson horse Play is there.’” [Play was a lesson horse, the only horse Natasha ever bonded with, and that horse had passed.]

“We had lots of conversations like this,” Bill recalls. “She was worried about being alone or waiting for us.”

Bill tried to comfort his daughter: “Here on earth, you’re time-bound, but in heaven, you’re not, so in a blink of an eye, we’ll be with you again. We’ll be right there with you.”

Even in their own pain, Bill and Saskia’s only concern was Natasha.

“One of the hardest parts of Natasha’s journey was she was very resilient, but at the end, she did become very tired,” says Bill. “Physically her body was shutting down. The cruel part of this disease is cognitively you’re absolutely intact to observe your body shutting down around you. And the last weeks when she couldn’t speak. She wasn’t swallowing. We lost that connection. I know she was with God and God was with her, but we lost that connection with her. In that way, she was isolated from me, and we couldn’t be with her.”

“We just kept talking to her,” Saskia explains. “Telling her she was not alone. God was there, that God was going to show up for her in a bigger way because of her circumstances. He wasn’t not going to be there for her. It was so unbelievable, Natasha could not communicate with her parents, her brother, other family. Those last days were really, really hard.”

Losing Natasha

The world lost a bright light on August 4, 2016, when Natasha took her last breath with her parents and brother Liam by her side.

“It was an awful and sacred moment to experience someone’s spirit leaving their body,” says Saskia.

About 100 close friends and family had arranged to show up outside the home with candles that evening to show their love and light for Natasha. She passed away at 7:30 p.m., two hours before the scheduled time. Not knowing she had passed they arrived at the scheduled time, which meant that a stream of close friends could come in to view and touch Natasha one last time. 

Natasha’s ripple

The cost of inadequate research funding is the loss of young lives and unimaginable pain for loved ones. Bill and Saskia are trying to change this.

In the weeks after Natasha’s passing, they began organizing the first CureFest Canada. Bill and Saskia organized CureFest Canada for four consecutive years before COVID-19 hit in 2020. Today, they work with CureFest International to live-stream it through the U.S.

During those four years, Bill and Saskia held candle light vigils in honour of the children who pass away from cancer. They brought together children’s cancer groups from across Alberta to advocate for children with cancer at CureFest. Working with Natasha’s friends and cousins, they brought together dancers, musicians, politicians, cancer researchers, health care professionals, children and parents, and the local media to advocate for more research funding for children’s cancers.

In the first year of CureFest, Bill and Saskia included a bicycle ride as Natasha had requested that kids ride their bikes at her Celebration of Life. In 2018, they commissioned a giant Beads of Courage, which they displayed during CureFest, to show people what children with cancer go through during treatment. While at the hospital, children with cancer receive Beads of Courage to help them record their cancer experience. Each bead represents a different treatment or milestone on their journey. The colourful beads are a tangible keepsake for children to help them understand their cancer experience and explain it to others.

“Every day on Facebook, I see more children being diagnosed with DIPG and because of our experience, we know what the probable outcome will be, and we know the fear and the panic and the researching under every rock, thinking, ‘There’s gotta’ be a way,’” says Saskia.

“And of course, if you took all those kids from around the world who are diagnosed with DIPG every day and put them in a school bus that went over a cliff, you would hear about it,” says Bill. “People would be outraged.”

But people don’t hear about DIPG as it quietly kills a child here and a child there and no one, but their family and friends, ever know about it.

Sometimes it’s difficult to not be angry, but Bill and Saskia strive for a balance.

“One of our missions in this process was to live in joy for our son Liam and in Natasha’s honour because life is worth living,” says Saskia. “To fight every day would be in contrast to living in joy every day. It’s a balance.”

Hope on the horizon

With support from our generous community, Kids Cancer Care and countless parents like Bill and Saskia are working to change the funding disparity to give kids a fighting chance. Thanks to your donations, a change in protocol for DIPG may be on the horizon.

Dr. Aru Narendran, a Kids Cancer Care-funded researcher at the University of Calgary and the Alberta Children’s Hospital, is collaborating with a group of American scientists on a vaccine for DIPG.

Approved by the Health Canada and the FDA for a phase one clinical trial in Canada and the U.S., children from across North America are currently participating in the trial.

“The basic principle of vaccines is to re-stimulate or re-educate the immune system, so it can identify a foreign agent, be it a virus, bacteria or cancer cell, to initiate an immune response,” says Dr. Narendran.

Cancer cells show up in the body frequently, but the immune system normally detects the cells as foreign and initiates an immune response to kill them. Dr. Narendran seeks to understand the fundamental biology behind why and how some cancer cells manage to trick the immune system and escape notice.

“When a normal cell becomes cancerous, it expresses new proteins that are not found in healthy cells,” says Dr. Narendran. “These new proteins, called antigens or neo-antigens, set off warning bells in the immune system.”

Developed by a group of American scientists, the DIPG vaccine was created to identify and attack a specific group of neo-antigens involved in DIPG. The goal of the trial is to determine the safety of the vaccine in children.

By looking at the anti-DIPG cancer cell antibodies, which form in children who receive the vaccine, Dr. Narendran’s team is seeking to better understand its benefits, particularly a phenomenon known as neo-antigen spreading.

“When we are infected by a bacterium or virus, the immune system initially recognizes only parts of that intruder, say, A, B, and C proteins,” explains Dr. Narendran “The immune system then stages a response to A, B, and C, but after a while, it spreads and can act on F, G, H, I, J, and K proteins. It’s like a ripple in a pond; it just keeps spreading outward.”

Dr. Narendran has observed a similar response in cancer studies in the lab: “We noticed that the immune response following the vaccine increases gradually and widely against the DIPG cells. This is an absolutely fascinating way by which the immune system carefully and effectively increases its offense against its target.”

The goal of his research is to finetune the vaccine into a super-vaccine that is both safe and more and more effective in targeting and killing DIPG cancer.

“I would love to see a cure for DIPG in my lifetime,” says Bill. “I would celebrate that, absolutely, that would be a joyous day. There would be a small part of me thinking, ‘Why couldn’t we have had it in time for Natasha?’ but I would be joyous just knowing that other parents and children won’t have to go through what we did.”

To read more about Natasha and her cancer journey, visit her blog here.

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 data analyst 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 continually brings 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!

Susanne and Peter Glanville noticed that their two-year-old son regressed to crawling suddenly. They knew something wasn’t right. With his recent temper tantrums and fussy eating, they thought he was just going through his terrible twos. But when Eddie started vomiting in the mornings, their doctor became concerned.

On Jan 11, 2018, Eddie was taken to an emergency at the Alberta Children’s Hospital and went for a CT scan. The scan gave the parents an absolute shock when it revealed that Eddie had a brain tumour. As Susanne and Peter scrambled to absorb the news, their baby boy went in for emergency brain surgery. The parents at that time relied on faith, family members, and staff at the Children’s Hospital.

That surgery would change everything. Post-surgery, Eddie experienced posterior fossa syndrome — a condition that affects balance and coordination and the ability to swallow, speak, and walk. Eddie needed immense care and his parents would take turns living at the hospital. Eddie’s older brother Luke was 6 years old at that time.

There was a lot of stress during the initial days of the diagnosis and surgery. Family was a big support for parents to take care of Luke, while Eddie was away at the hospital. After months of chemotherapy and two stem cell transplants, the cancer was finally eradicated. But they had a long recovery journey ahead of them.  

The Glanville family was introduced to Kids Cancer Care during their time at the hospital. Thanks to generous donors like you, we were able to support them every step of the way: “We were able to connect with volunteers and other families at Pizza Nights in the hospital, and over time, we started taking in more resources. Kids Cancer Care was always front and center — not just in the critical stage but as we came into a better place.”

When they left the hospital, they didn’t know how their lives were going to be. The first 8 months were the most for difficult Eddie and his family. They started with Eddie’s recovery journey. Eddie is an eager, independent, determined, fun child who loves to laugh. Through all this Eddie maintained his childhood ability to keep going. His day-to-day tasks require a lot of support and logistics but he is a determined child with a lot of potential. He is not the one to give up.

Eddy shares a special bond with his older brother Luke. And, for both the brothers, there’s no better place than camp. With the support of generous donors, the camp was able to give the boys a magical camp experience in 2019 and 2022. Now, they’re counting down the days to summer camp again.

“More than anything, they just need to be kids,” says Susanne.

Although Eddie can now swallow food, he still needs to sip his drinks through a Gtube (gastrostomy tube). He’s unable to walk or stand without support and he uses a wheelchair. While his speech is impaired, Eddie’s a great little reader and speller. If people can’t understand him, he spells out the words.

“We’re so grateful to Kids Cancer Care,” says Susanne. “The staff put so much thought and care into setting up the right resources for Eddie at Camp SunRise. It’s not often that someone can be his one-to-one aide all day, but Kids Cancer Care arranged it, so Eddie could experience camp just like the other kids.”

With your support, we are able to make our programs fully inclusive for all children. Knowing their son could experience the joys of childhood after so much pain and suffering was healing for Susanne and Peter.

“Kids Cancer Care recognizes that siblings need support too, says Susanne. “The whole family needs to heal. It’s such a lifelong journey — spiritually, socially, and mentally. When bad things happen, you have to look for the light. Kids Cancer Care is that light. All the support makes the impossible, possible.”

Thank you for making summer camp possible for Eddie and his brother Luke and the hundreds of children in Alberta impacted by cancer.

“Why did you wish for something that you knew would never come true? Isn’t that a waste of a wish?”

“Well,” smiled Arya, “because there’s always a chance.”  

This is the story of strong and resilient Arya who definitely lived up to the strength of her name. Arya means lioness and one could always see the determination in her eyes. She was lion-hearted, five years old, fighting a deadly disease with all her might. In March 2017, Arya was diagnosed with infratentorial anaplastic ependymoma type A – an aggressive brain cancer – shortly after her third birthday. When Arya’s cancer recurred 14 months after her initial diagnosis, it was considered terminal.

We were devastated by the news and wanted to do the best for our daughter in whatever time was left. With Arya’s terminal diagnosis, there were only two things that helped us to sleep at night. Firstly, to make Arya’s short life the best it could possibly be. We wanted her life to be full of adventure, love, excitement, friends, and inspiration. We tried to do as many things as possible on Arya’s bucket list, and we began prioritizing family time and adventures over careers and college savings. Secondly, to try novel treatments (many in the form of clinical trials) to maintain Arya’s quality of life for as long as possible and hopefully contribute to finding quality treatments for others who will walk the same path as Arya. I spent many late nights reading the latest academic research papers on cancer immunotherapy and brain tumors and trying to qualify Arya for clinical trials that might offer her a bit of stability.  

What does it mean to have a good life? For Arya, it meant having a chance to try new things. She was always excited at the prospect of any new adventure and the first to yell “yeah!” when we proposed an outing. We worked around her treatment schedule to plan as many fun adventures as we could. In 2019, Arya’s goal was to spend 50 nights in a tent! If you would like to read about her adventures, check out her blog here.

When a child is diagnosed with cancer, it affects the entire family, and our family was no different. Aeo and Zephyr, Arya’s older twin brothers, were often without a mom, as I spent most days with Arya at her appointments. And there were several occasions when we traveled for clinical trials and had to leave Aeo and Zephyr behind with relatives. They grew up early and started handling responsibilities without any guidance. They learned to get themselves ready for school and walk to school on their own whenever Arya and I weren’t home. I often struggle with how much of their lives I missed out on in the three and a half years that Arya battled cancer. The sibling experience is just as important to acknowledge and I’m so grateful to see how Aeo and Zephyr are now becoming more helpful, knowledgeable, kind, and capable young men every year.

During this tough phase, there were many communities and organizations that helped and supported us. One of them is the Kids Cancer Care Foundation of Alberta. Arya was one of the first kids to take advantage of the newly expanded PEER exercise program. Working one-to-one with the Ph.D. PEER exercise specialist, Arya engaged regularly in yoga, sports, exercise games, and gymnastics. The increased physical activity helped Arya counter radiation’s side effects by rebuilding her gross motor skills; building bone density to reduce her chances of bone degeneration; and restoring brain neuroplasticity to prevent cognitive delays. Arya regained most of her gross motor skills, balance, and coordination. She was almost back in the normal range and loved PEER.

On June 20th, 2018, we were looking forward to celebrating one-year cancer-free with Arya.  Unfortunately, we didn’t receive the happy news we were hoping for. Arya’s one-year MRI scan revealed a mass on her spine at T11, that was indicative of metastatic disease. Regardless of this upsetting news, we chose to continue with our family holiday that had been planned, and we were determined to make sure that the kids had a fun summer.

2020 was especially challenging for Arya. She dealt with a huge number of health issues, a very intensive period of treatment, and more emotional struggles than in the past. We were very concerned that this quick decline meant that we might be nearing the end, but just as the rest of Arya’s stories have had its ups and downs, Arya surprised us with a dramatic improvement overall.

Swallowing — the most concerning factor during her treatment — took center stage during recovery. We worked with an SLP (speech/language pathologist) to try some strategies to help Arya to get down small amounts of food safely and to help her breathe at night. After a week of no improvement, discussions around feeding tubes started, as Arya was weak and had dropped a lot of weight. Then, 10 days after surgery, Arya suddenly ate a bowl of oatmeal without coughing, and we were optimistic that recovery was on its way!

On July 20th, Arya finished her 5th course of radiation! She had now undergone radiation treatment at the ages of 3, 4, and 5, and now, another course at age 6. The next day, July 21st, Arya finished her 7-day course of trial chemotherapy. She was now off all the meds she’d used so frequently in the previous 4 weeks. She had completed an intense period of daily treatments, dealt with severe nerve pain and drug side effects, and attended a ridiculous number of follow-up appointments (vision, hearing, PT/OT, check-ups, etc.). She earned herself many new Beads of Courage in the last two months, including 40 new beads in the last 28 days. Kids Cancer Care funds the Beads of Courage program, which helps children understand their cancer experience. Each colourful bead represents a medical treatment or milestone along the way, offering kids a tangible marker of the treatments they have endured.

In 2019, Arya, and her three brothers (and mama, papa) attended Camp Kindle’s Spring Family Camp. Camp Kindle is run by Kids Cancer Care and is offered to families impacted by cancer. They also offer summer camps for young children with a parent battling cancer, as well as for bereaved siblings. This is a fantastic organization that has supported us greatly. Arya had an amazing time during her weekend at the camp, she tried archery, and went on a little hike to a challenge course with us! Her brothers had a lot of fun experience too and we’re very grateful to the staff and volunteers for it!

Over the course of Arya’s journey, she participated in 4 (almost 5) clinical trials, as well as 3 investigational treatments off-trial. Arya previously had 2 tumour samples banked for research. We also donated her tumour and brain after her death to help advance knowledge and research into brain cancer. We hope that her journey will contribute greatly to what is known about pediatric cancer and immunotherapy, and we hope that these contributions eventually save other families from a similar tragedy.

For the most part, her quality of life was great, right up to her last 36 hours. She was still attending school the week before Thanksgiving, playing with friends, and hanging out on the playground. She even went out to McDonalds to have her favourite Chicken Nuggets for dinner on her last day. She came home to a slice of pumpkin pie, and asked for seconds of ice cream! She was braver than any 6-year-old should ever have to be. She smiled in the face of adversity, right up to her last day.  

Arya passed away peacefully the next morning at home in her parents’ arms, just steps from where she was born. She was just 8 weeks away from her 7^th birthday. She always had a big smile and was known for wanting to do everything again!

On the weekend of Bereaved Mother’s Day, our family was also treated to a special retreat at Camp Kindle. Kids Cancer Care offers a Spring Family Camp weekend, and a Bereaved Family Camp weekend. Though it felt uncomfortable arriving there without Arya, it was a weekend of family time and Arya was well included in our time there. We created a family rock portrait and painted and hid some rocks outside for Arya. We all enjoyed some archery, rock climbing, ropes course fun, hiking, camp games, and crafts. And in typical Alberta fashion, we had all four seasons and every type of weather during our 48 hours there!

Arya departed this world on October 15^th, 2020. Her absence has left a void in our family that is beyond our ability to comprehend. Yet, her life has taught us so much, and we are incredibly grateful for the gift she has given us. In Arya’s passing, I have found that living a quality life and improving treatment options still drives me forward each day. 

— Petra McDougall, Arya’s mother

P.S. Wasting Wishes is an illustrated children’s book, co-authored by sweet Arya! The story is a true conversation between Arya and her mother Petra. Fantasy, reality, and hope weave together a heart-warming story in this true account of a day in the life of a 5-year-old child living with a terminal disease. Purchase the book here. Proceeds from the book will be donated to Kids Cancer Care.

July 11-13, 2025 – Registration opens January 15
Water Valley, Alberta

Join us for the premier all-inclusive cycling event of the summer with 3 cycling options to choose from: 3-day Group Ride, single day Sunday Ride or virtual Flex Ride. No matter how you choose to participate, every dollar you raise will go directly to sending kids to camp!

Raise a minimum of $1500 and send a kid to Camp Kindle!

SEE CYCLING OPTIONS AND REGISTER NOW

Check out Ride of Courage 2024 photos below!

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3000

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We are the Haggas family. 

Parents: Mark and Sue, children: eight-year-old Meghan and eleven-year-old big brother Ryan. Pets: Edalynn the Beta Fish, Toothless the Leopard Gecko, and beloved family dog Nurse Treasure. This is our story of childhood cancer during the COVID-19 pandemic.

On February 11, 2020, our lives changed the day our five-year-old daughter Meghan was diagnosed with high-risk pre-B acute lymphoblastic leukemia (ALL).

The day after our son Ryan’s birthday in early February, Meghan developed a bad cold. We thought nothing of it until 10 days and a few nosebleeds later, the cold showed no signs of letting up. We took Meghan to a walk-in clinic, thinking it was tonsillitis. The doctor put her on some antibiotics, but she wasn’t getting any better. 

The morning of February 11, 2020, I was at home running my daycare business, with Meghan keeping me company. She was sad to have missed out on her kindergarten field trip to the Red Deer Hospital that day due to her cold. My husband had just dropped Ryan off at school. No sooner had he done that than I was calling to ask him to come home as Meghan was having another nosebleed. On the advice of HealthLink, my husband took Meghan to the emergency centre at the Red Deer Hospital. I contacted my day home family to inform them I was closing for the day and drove to the Red Deer Hospital to meet up with Mark. Meghan was sent for a chest X-ray and blood work. Mark left the hospital to pick up Ryan from school as we figured it would take a while to receive the test results. We would meet them at home probably with a prescription of antibiotics for Meghan.

I was alone in the hospital room of the ER ward with Meghan when the doctor came in. Closing the door behind him, he sat down across from us. He said the chest X-ray results were clear, but the blood work was abnormal. Then he immediately told me it was cancer, blood cancer, leukemia. The doctor calmly went on to say the oncology team in Calgary at the Alberta Children’s Hospital would further determine the details of the diagnosis, but there was no doubt, with the levels in her blood, that this was leukemia. I then heard the phrases…”life-threatening…blood transfusion to begin immediately along with cancer treatment.” The doctor told me I had time to call my husband to ask him to drop off an overnight bag for us. They had already arranged to have an ambulance take us to Calgary. The doctor opened the hospital room door and left.

I gave Meghan (or Muffin as we call her) a kiss on her head and told her I had to go into the hallway for a minute. I slowly closed the door, watching her scribble in a coloring book I’d packed that morning when she’d left with Mark for the hospital. The minute-to-minute business of the ER continued rushing around me as I collapsed to my knees, going over in my head what I was about to tell my husband.

When I called him, Mark was in the hallway of our children’s elementary school, chatting and laughing with the school’s admin, picking up Ryan after a fun full day of grade three. I then called my parents in Newfoundland who immediately booked a cross-Canada flight to be with us. I then went back to Meghan’s hospital room and sat with her.

What is anyone thinking at a moment like this? What goes through your mind when you think of a childhood cancer diagnosis? Do you think of years of watching your child suffer through painful procedures and possible gut-wrenching outcomes? Do you think of your support systems? Do you think of your other children and how it may affect them to see a sibling go through treatment? Do you wonder who will take care of them if you are at the hospital?

The oncology team at the Alberta Children’s Hospital gave us the heartbreaking news of Meghan’s diagnosis and a glimpse of the long road ahead. It would include two and half years of treatment for her high-risk leukemia.

Our first 10 days in the oncology unit were emotionally difficult. The pediatric oncology social worker made a referral for a room at the Calgary Ronald McDonald House (RMH). She also gave us information about Kids Cancer Care and Fostership.

My husband and I took turns walking across the sidewalk to RMH for naps or a warm meal in the middle of the night, while the other parent slept beside Meghan in her hospital bed, holding her hand. My sister came from Yellowknife and stayed at a hotel in Calgary for those first three days. Visiting back and forth with Meghan, bringing her PJs and stuffies, making her laugh, as my sister and I stole glances of disbelief at the journey ahead for our family.   

Our son Ryan went home to Red Deer. His grandparents took care of him, while we dealt with Meghan’s first hospital stay, first blood transfusions, first surgery (chest port implantation), and first IV and oral chemotherapies. 

Five-year-old Meghan was scared. 

For Meghan, the fear of never getting out of the hospital and never getting better was very real. She went from being a little five-year-old, enjoying her first few months of kindergarten, dancing in ballet concerts, and playing soccer with her buddies to being a pediatric cancer patient.

We learned from the oncology team that after 10 days our family would be discharged until our next visit. Being able to tell Meghan this news was amazing! We were staying at RMH for a few more days before heading home to Red Deer with her numerous daily medications. In those dark moments of fear, describing the RMH craft room, the big cozy beds, and the other children there, gave Meghan light, gave us hope. The playroom at RMH was open. We met other medical families and their littles in the dining room. During that first week at the Alberta Children’s Hospital, we met other families going through the initial diagnosis like us, families going through treatment and a parent’s worst nightmare, relapse.  

We settled at home in Red Deer with our medical journals and numerous medications. We absorbed a ton of information that first week. The oncology team taught us how to keep a pediatric cancer patient safe from bacterial infections. This is necessary as the chemotherapy literally takes their immune system to zero. We ordered wall-mounted hand sanitizers for both the front and back entrances of our home. We kept Meghan home from school, and barred anyone who may have a cold from visiting our home. These were all logical steps in this new reality for our family.

Friends dropped off meals, Ryan went back to school and Meghan rested in bed with the family dog napping beside her. The dog was especially wonderful during at-home medication time. We would say meds and the dog would run to wherever Meghan was, so she could snuggle him while she took her numerous yucky-tasting oral chemotherapies. Meghan and Ryan video-chatted with their auntie and cousins up in Yellowknife and were excited for her to fly down again soon for a visit.

At home, we read through pamphlets from the oncology team and social worker. Mark and I soon learned about Camp Kindle, a summer camp where Ryan could meet siblings like him, and Meghan could make friendships with children like her. During weekly visits to the oncology out-patient clinic, we passed Kids Cancer Care posters of smiling bald-headed children at camp. “Well,” we thought, “thank goodness our kids will have this support system as they go through this nightmare.”

After a few weeks, we said goodbye to the grandparents and thanked them for their support. Big hugs as they left for the airport with a promise for them to hop on a plane at a moment’s notice should we need them. It was around this time that we received news that a child of one of the cancer families we connected with at Alberta Children’s Hospital had passed away. I visited in person with a few close friends, sharing coffees, tears, and laughter as the healing strength of a hug is so important when dealing with such unbelievable stress as a medical family.

I bet you can figure out what world event shook us and many other medical families next—the COVID-19 virus.

The COVID-19 virus and connecting with Kids Cancer Care resources.

We talked with Meghan about the back and chest pokes that were planned to occur once a week, then once a month. She was scared. She was tired of the process. It was hard. Five months into treatment, Meghan’s hair completely fell out. She told us no one looked like her. I contacted Kids Cancer Care and discovered some amazing staff working on innovative Zoom programs to encourage social connection between pediatric cancer families.

We connected with the PEER program through Zoom once a week. This allowed Meghan and her brother to talk to kids like them while playing fun online games and participating in Zoom-based exercise and physiotherapy sessions. Kids Cancer Care also offered weekly Zoom programs with craft activities. I signed up too and loved the Zoom aerobics classes with other Kids Cancer Care Moms! 

Why the emphasis on creative Zoom-based cancer support for families? You guessed it! The risk of COVID-19. Kids Cancer Care had moved programs online to support families, while protecting medically vulnerable children like our six-year-old medically fragile, immune-compromised little Leukemia Warrior Princess Meghan. That COVID-19 virus was now a global phenomenon.

• Schools closed
• Recreation centers closed
• Playgrounds were roped off with yellow police tape
• Family members could no longer fly in to visit
• For a time, my husband was the only member of the household allowed to go out in public to do grocery shopping
• Seeing friends in person to hug was too risky
• Common areas and playrooms at Ronald McDonald House closed
• Summer camp at Camp Kindle closed
• Siblings were no longer permitted in the out-patient clinic of the oncology ward at the hospital
• Only one parent at a time was permitted in the oncology out-patient unit of the Alberta Children’s Hospital

Long periods of time between 2020 and 2022 passed when the only other people my children saw were Kids Cancer Care children and staff on Zoom and Meghan’s oncology team. I stopped working those two and half years to take care of Meghan. We switched from online school after two months to begin homeschooling to better accommodate Meghan’s medical appointments and energy levels. 

As much as other well-meaning bystanders or friends tried, we felt that Kids Cancer Care staff and families were the only people who could truly understand and relate to the journey we were on.

In August 2020, we had our first of three experiences as a family at Camp Kindle. Meghan was well enough to travel but she was feeling nauseated and crummy most of the time. Kids Cancer Care provided us, for free of charge, three-night accommodations at Camp Kindle and full use of the facilities.  We took them up on their offer, packed our food, packed all of Meghan’s medications, and away we went! This place must be seen to be believed. The scenery is amazing, but the sheer amount of effort Kids Cancer Care staff and volunteers go through to give cancer families the opportunity to enjoy the great outdoors together while keeping in mind that pediatric cancer patients need access to cozy beds, bathrooms, and living rooms is fantastic! Often during our first stay, my husband and son would enjoy a cozy campfire outside while I read a book inside, watching over Meghan as she slept off the nauseating side effects of oral steroids and chemotherapy. Meghan would then wake up and sit outside on my lap listening to the nearby brook and the birds in the rustling trees. 

Fast forward to August 2021. Seven-year-old Meghan had moved into the maintenance phase of treatment and was now receiving spinal and IV chemotherapies at the Alberta Children’s Hospital only once a month, as opposed to every weekend. She continued with her daily oral chemotherapies at home but had more good days than bad and her immune system was slowly growing stronger as the IV chemotherapy decreased. In discussion with our oncology team, we decided to return to in-person school for both of our children in September 2021. 

Another wonderful program for Kids Cancer Care families is their Cancer in the Classroom presentation. Meghan had left school halfway through kindergarten and was now returning to grade two. How would we navigate this transition? Our family worked with Kids Cancer Care staff to develop a customized presentation, on which Megan took the lead. The presentation explained to her grade-two classmates why she had been away from school for so long, why she would still be missing school for medical appointments (Meghan was still on a 30-day cycle of IV chemotherapies, oral steroids and at-home chemotherapies) and anything else she wanted to share with the class.

This was a surreal moment!! My husband and I sat in the back of the grade-two classroom in the tiny chairs (our son Ryan was just down the hall in his grade-five class), colorful math and learning posters covering the walls of the room, as our seven-year-old girl sat in front of her peers and proudly told them all about her cancer journey. Ms. Kimberly Zoomed in from the Kids Cancer Care office in Calgary as Meghan walked the class through the presentation. Kids Cancer Care also gave Meghan a Monkey in My Chair stuffy, which the teacher would place in Meghan’s seat on the days she could not be there. What a fantastic way to promote empathy and compassion in classrooms for medical children.

On Meghan’s two-year cancer diagnosis anniversary, her elementary school completed a social justice project and collected toy donations for Kids Cancer Care programs. Meghan and I were able to deliver this huge amount of gifts to Kids Cancer Care on our way to one of Meghan’s monthly IV chemo appointments at the hospital.

Eight-year-old Meghan completed her two and half years of active treatment on June 19, 2022. We were pleased that the surgery on June 20^th to remove her chest port was a success as this allowed time for her to recover before attending her first Camp Kindle summer camp with her brother Ryan from July 4^th to July 8th.

Our children were finally able to meet in person the other cancer children and siblings they had been Zooming with for the past two and half years!!

We take things one day at a time because sometimes the future possibilities can seem overwhelming. Having the Kids Cancer Care support network has helped us cope with the never-ending ups and downs of a childhood cancer diagnosis, active treatment, and long-term treatment.

Thank you, Kids Cancer Care.

Love,

Meghan and family

XOX

When I was two and half years old, I was busy playing dress up with her older sister Allison. I squeezed into a shirt that was way too small. When my mother finally rolled it off my arms and head, she noticed it had left little dark spots. Mom immediately booked an appointment with the pediatrician, thinking I should be eating more of those vegetables I hated and still hate today.

The appointment was scheduled for Friday afternoon, March 30, 2007 at 4:45 pm. By 5:30 pm that same day, I had my first blood draw. In less than 24 hours I was admitted to our local children’s hospital in Spokane for further testing. Five days later, they received the results. I was diagnosed with MDS (myelodysplastic syndrome) and AML (acute myeloid leukemia), both are types of blood cancers. Those little dark spots?  Petechiae. The first of many visible signs that I had cancer.

I had only one treatment option — a bone marrow transplant. We didn’t have to look far for a donor as my four-year-old sister Allison was a six out of six match. My treatment regime included total body irradiation. In my opinion, this is similar to having your entire body placed in a microwave oven. As I was too small for the machine, I was placed on a gurney against the wall with a radiation beam concentrated on her entire body. Combined with high doses of chemotherapy, this would kill all the cancer cells and all the healthy cells in my body.

I became very sick from the treatment. I had painful blisters in her mouth and throughout my GI tract, making eating nearly impossible. My skin was burnt bright red and my gorgeous blonde hair began to fall out in chunks. I was receiving blood transfusions daily and platelets every three days. I spent most of my days in isolation as her immune system was depleted, putting me at risk if I was exposed to something. The purpose of the protocol was to take my immune system to ground zero, so my body was less likely to reject the donor cells. I spent the next five months in a hospital room.

Once I was cleared to go home, I was excited to see my bedroom, toys, and dogs. I was scheduled to start pre-school in the fall of 2008. That was all put on hold when I relapsed.  I would spend my fourth birthday in the hospital, waiting for another bone marrow transplant. This hospital stay was much longer. I had more complications and a thirty per cent chance of survival.

My second transplant would be in Calgary at the Alberta Children’s Hospital with a life-saving donation of a stranger’s cord blood. At this time, my family was introduced to Kids Cancer Care. My sisters Allison and Annaka were able to attend Kids Cancer Care programs as siblings, but I was too sick. One of the first programs I attended was the Halloween Howler. It was hosted in the gym at the hospital, but I was in isolation, so the volunteers, dressed in their costumes, came to my hospital room, and waved through the window. The following summer, I attended SunRise, a weeklong day camp that included one night at the big camp. I only remember that night by a picture of myself standing on the dance floor with my blanket, watching the big kids dance.

I may look like an ordinary kid, but my 4′ 11″ stature tells another story. I had cataracts at age five and have artificial lenses. They will need to be replaced in a couple of years once I reach adulthood. The high-dose chemotherapy and total body irradiation damaged the development of my teeth, so I will need dental impants. Before I am able to have dental implants, I will need reconstructive jaw surgery, which involves taking a bone graft from my hip. I have 70 per cent lung capacity and my bones are extremely brittle. The list of my long-term side effects is endless. Some are known, while others are yet to be discovered. I will see specialists multiple times a year for the rest of my life.

Through the years I have participated in many Kids Cancer Care programs and events. I have taken part in the High Hopes Challenge at Camp Kindle, helping to raise much-needed funds for kids like me. I participate in the PEER exercise program, which helps reduce long-term side effects and makes movement fun.

I am also in the Teen Leadership Program, known as TLP. The TLP program helps teens build leadership skills while having opportunities to give back. One of my first TLP events was volunteering at Halloween Howler, the very same event I had experienced through my hospital window when I was four. I had come full circle.

All of these programs would not be possible without the support of generous donors. Thank you for your continued support.

~ Amanda

I was 14 years old and halfway through my grade eight finals when I was diagnosed with high-risk leukemia. That was when my life changed forever. I went from being an annoying little teenager to a “mature” one in a matter of minutes. To be very honest, I don’t actually remember being diagnosed.…Sounds weird right? I know. It was like that for most of my treatment actually. I guess it’s my brain’s way of protecting me, which I am extremely grateful for. I have had to rely on the memory of my parents for some of this.

As you can imagine, the news was devastating. None of us knew what to do or what to think. We were told that my treatment plan would consist of two and a half years of chemotherapy. Going into treatment, I had a sense of how intense it can be from hearing about others or seeing cancer patients on TV, but truly having it was a completely different thing. It was more than I could have ever imagined. It rapidly became one of those things you can only know when you have it.  

Mom and Dad stopped working straight away and decided it would be best to focus on the situation until I was stable and okay. My little sister Kya went to visit family in Winnipeg for a while.

I’m really happy she was away, because exactly one month after diagnosis, I ended up having a really rare side effect to the chemo.  Paralysis. It is expected when on treatment to feel numbness or tingling in the limbs, but definitely not actual paralysis. It was getting harder and harder to move until one day I actually couldn’t move at all. It was like a wave. Starting with my toes, moving up to my ankles, then my knees, and my hips. I couldn’t even reposition myself on the couch.   Because it was spreading so quickly, my oncologist told us to call an ambulance right away. I ended up spending a few nights in the ICU as a precaution. They were worried it would spread to my lungs, in which case I would need ventilators to breathe. Thankfully it stopped mid-stomach, so I didn’t need them after all.

After gaining my feeling back, I had lost nearly all of my muscle mass and literally couldn’t even move on my own. But this time, instead of not being able to move my legs, I couldn’t move anything. I had to be spoon fed—as a teenager! It was terrible.  I was in so much pain in my muscles, my nerves, and especially my joints. Let me tell you, literally learning how to stand on my own again took six weeks of in-hospital rehab. Walking and getting upstairs took way longer and it was A struggle. The pain was excruciating, but I still pushed through and eventually was able to do those normal things again. It was a HUGE accomplishment. 

Thankfully, I had Kids Cancer Care’s PEER exercise program a few times a week, which helped me TONS with my recovery. PEER is basically a personalised rehabilitation exercise and stretching program  depending on what you need it for. PEER was developed by researchers at the University of Calgary and health care professionals at the Alberta Children’s Hospital. The goal of the program is to keep kids moving and make sure they don’t become too weak because of treatment. This is incredible and if you know anyone with cancer, you know that it is much needed! It’s basically fun physiotherapy. It helps reduce the immediate and long-term side effects of cancer treatments. And so, I participated a couple times a week and got better. I still participate in it today.

A couple months after that horrible time, I experienced yet again another rare side effect. Unfortunately, this was the one and only thing that I remember every moment of. Brain swelling is not fun at all. I couldn’t speak. I couldn’t move. I could barely breathe, and I was choking. They thought I was having a stroke. Not being able to control a single muscle in your body is terrifying. Not even being able to blink or breathe is something I was never prepared for. All I wanted to do was tell my parents I love them, because I thought I was dying, but I couldn’t say it. 

Again, my body was all pain. Everything hurt so badly but there was no way for me to communicate that to anyone. I won’t talk too much about this experience because I really don’t feel like breaking down in front of everyone right now. It was honestly the most traumatising thing I have ever experienced, and it still gives me PTSD to this day. I don’t think I’ll ever get over it.

The last two and a half years haven’t been an easy road, lots of gravel, with occasional boulders if you know what I mean. So, as you can tell, treatment has been pretty rough. Thankfully I am now finished. (I finished in October!!). But I am now dealing with the long-term side effects. In my case, it is a severe case of avascular necrosis. Basically, this happens when there’s not enough blood flow in the bones.  They deteriorate and die, which means I am the equivalent of a piece of glass right now. It causes a lot of pain, like, A LOT of pain, but I have had it for a couple of years and so I am kind of used to it. It does prevent me from doing some of the things I used to love, for example volleyball. Jumping is risky, dangerous, and extremely painful.  

My takeaways from treatment are that when you have the opportunity to do something, go and do it before it’s too late, before you can’t anymore, because you never know when that will be. Being sick also taught me to live in the moment and to not take things for granted.

Like I said earlier, I only remember a handful of things that have happened throughout those two and a half years. What a lot of people don’t think about are the after-effects of treatment, when the hair grows back… I still have monthly visits to the hospital because of my bone condition, and so I’ve been hearing a lot of stories about what happened to me throughout my journey. Although my cancer treatment has ended, as I stand here before you today, my truth is that I am struggling mentally to process all that has happened…

Now, this is where Kids Cancer Care comes in… Throughout the entirety of my treatment they have been there for me and my family whether it was Pizza Night at the hospital, or some of their programs that they provide for kids and families. I have been part of so many of their programs, like PEER and Teen Leadership, both of which I am still in. The staff have been there for me the whole time and were a great support to my family.

One of my family’s favourite things is Camp Kindle. Since I was diagnosed, I have been isolating to prevent any sickness, and then Covid hit, so it just amplified the isolation. Our family isolated completely for two and half years, like we literally went nowhere, not even to the grocery store.  Camp was the one and only place we felt safe and comfortable visiting, because we know Kids Cancer Care does not risk anything when it comes to the health and safety of the kids. We always look forward to the time we will spend there next and it has become one of my family’s happy places! It truly means more to us than we could ever tell.

As an older sister, I worry about my little sister Kya a lot. Having cancer and not being able to explain to her what is going on or trying to “be okay” to stay strong for her was extremely difficult. I was always in and out of the hospital, and sometimes she wasn’t allowed to come visit me. During the pandemic, Kids Cancer Care had little Zoom calls with princesses, or activities for her to do, which made me feel so much more comfortable being away from her. Knowing that she had fun and wasn’t worrying about me in that moment, most importantly, meant a lot to me. Kya is also part of the PEER exercise program because she does have a lot of pain and problems herself, and it’s also a great way for her to meet other cancer siblings her age.  

Thanks to Kids Cancer Care, I have made so many new friends that truly understand me. I can tell others the crazy things I’ve been through, but they will never understand. It feels so amazing to be connected with others my age who I can have real conversations with, some of whom I’m sure we’ll be friends for a long time! Most of them I met through the Teen Leadership Program which is a program directed for older teens to learn leadership and life skills. One example would be learning how to apply for university and all the tools and tricks we’ll need to know when the time comes. We also organise and participate in fundraising events and volunteer at local non-profit organisations. It’s a lot of fun! 

Another thing Kids Cancer Care has provided is a tutor… Treatment causes this thing called “brain fog”. It slows down your thought process and makes it difficult to remember things. I was majorly affected in this area, as I wasn’t able to fully comprehend the school material. I have had my tutor for a year, and we actually became friends. I think of her as a friend that is just helping me out, because again we really understand each other in ways not many people can (because she too had childhood cancer). Fun fact! She was also a spokeskid for Kids Cancer Care at one point. It’s nice because we share a lot of the same interests as well! 

One day I hope to become an optometrist, I just love everything about optometry, and since it is a very pricey schooling program, I will definitely be applying for the Kids Cancer Care scholarship!

Of course, all that happened absolutely sucked. The uncertainty of what the next day, of what the next hour, would hold for me was absolutely terrifying.  With that being said, it’s nothing like it would have been without the support that Kids Cancer Care has provided for me and my family…the support, the fun, and most importantly the distractions. I honestly cannot imagine what these past two and a half years would have looked like without them.

Honestly this, this right here, me writing this for you, is an opportunity that I will forever be grateful for.

Thank you so much for reading my story, and for your time. Thank you for supporting Kids Cancer Care.        

~ Mikah, Kids Cancer Care spokeskid, cancer survivor, future optometrist and superhero

Sam’s battle with cancer started in October 2015. Sam jumped on his brother and got a bump on his face that just wouldn’t go away. We were fortunate that our family physician was suspicious, did some blood work, and diagnosed it as Leukemia.

This was such a scary time for us, made worse as it comes with such an overwhelming feeling of helplessness. As parents, we all would fight any battle on behalf of our children if we could, but with cancer, they are forced to fight. And they must endure all the terrible side effects of the strong medications and treatments necessary to save their life. Still completely in the depths of shock and fear we were told to check into the oncology department at the children’s hospital.

It is amazing to think back and realize that Kids Cancer Care was with us through our entire journey. We first met volunteers from this amazing organization in week one of living at the hospital. They provide pizza to the kids and parents who are forced to be in the hospital for long stretches. This gives the families something to look forward to, but also provided an opportunity to connect with other parents at the hospital.

Another of the amazing programs that Kids Cancer Care provides is Child Life specialists, who help kids deal with the anxiety and fear of having to face difficult surgeries and procedures. They provide dolls that kids can play perform the procedures on, like having a semi-permanent Intravenous access device (IVAD) installed because the kids will be connected to IV machines so many times during their treatment.

Also, while we were in the hospital for our first couple of weeks, the team from Kids Cancer Care sent volunteers to our house to fill the freezer with delicious and nutritious meals as part of a program called Cooking and Caring. It was so appreciated and exactly what our divided family needed with us parents switching in and out of the hospital every two days to have one parent at the hospital and the other at home with our other two kids. (Which we did for 200 days).

Most battles with cancer have similar themes of alternating low points, some days suffering the consequences of the cure are very difficult and then there are periods between harsher treatments where feelings of relief and hope are more prevalent. This was so very true when the oncology doctors explained that Sam had Acute Lymphoblastic Leukemia (ALL). If you have to get the unimaginable bad news that your child has cancer, this is the better kind. The oncology doctors and researchers have figured out how to cure ALL will few long-term side effects, 85% or more of the time.  This knowledge helped with our fear of the unknown immensely.

The first treatment phase is called induction where they try to get ahead of the cancer with some high-dose steroids and chemotherapies. After the worst of the negative effects from the steroids wore off, Sam was feeling okay and able to enjoy some of the programming that Kids Cancer Care provides.

This feeling did not last long. Cancer is a mutation to healthy cells and the aggressiveness of the cancer can be studied by testing the DNA of the cancer cells. Sam went from low risk, straightforward treatment to extremely high risk, very poor prognosis with this single test. This meant that the doctors had to abandon the established protocols and choose a more aggressive treatment to fight against this rare leukemia. Sam needed a bone marrow transplant. This constant roller coaster of increased fear started to take its toll, and this news was a horrible shock.

The science around the bone marrow transplant has been steadily improving for the last number of years, and we caught a break that Sam’s older brother William was a match and could be his donor. So, after the doctors at the children’s hospital, in comes our next hero!

Here is where the pattern of good news followed by bad news really starts to take on deeper and darker consequences. In the period leading up to the bone marrow transplant, children are extremely immune compromised. Sam contracted a severe cellulitis skin infection. It got so bad they were starting to test and treat it as if it was flesh eating disease. We have learned over the years, the more doctors present means the worse the situation is. Daily meetings between Oncology, Infectious Disease, and plastic surgery doctors is not a situation any family wants to be in. The pain from this infection was so horrible for Sam, that he was put on a morphine drip just to try to have a tolerable existence. He would cry and scream in pain with every diaper change which was made worse because the strong antibiotics he was on were causing him major stomach issues.

In order to get ready for the bone marrow transplant, the doctors have to zero out Sam’s old immune system which involves some very serious chemotherapies and two doses of full body radiation. Sam got to ride in ambulance to the Tom Baker Cancer Center (he liked that part). We as parents had to suffer watching him be sedated and packed into what was eerily similar to a coffin. Visually and mentally it was one of the hardest days of the process. This is also the day we had moved into the children’s hospital for what would be our longest continuous stretch. Every bone marrow transplant comes with a minimum stay of 45 days while the child’s new immune system hopefully takes hold and begins to function.

Thankfully Sam was so strong and he was more worried about his poor brother having to get a needle and small surgical procedure to enable the stem cell donation. As they wheeled William away for this process Sam brought us and some of the nurses to tears when he yelled after him down the hallway, “Be brave William, I’m so proud of you!”  Five hours of Scooby Do movies later the collection from William was complete, and super successful.

Infusion day was symbolic of the final road to recovery, but was quiet and calm. This was much needed as the effects of the bridging treatment to get to transplant were about to set in with the full force of their terrible side effects.

Day nine post-transplant mouth sores from one of the chemotherapies appeared, making it so painful for Sam that he couldn’t swallow or talk for four days. He was still able to show his inner strength with the odd smile, even through tears of pain.

After the mouth sores started to heal there was another short break of calm, and Sammy the Soldier had enough strength and will to finally sit up and paint. It was a simple thing, but after watching him suffer so much in literal silence, it was very meaningful and memorable. For the next little while, Sam started to heal.

That was until the worst April Fools Day we could ever imagine. On the night of March 31st, Sam developed breathing difficulties that got so severe he was admitted to the Intensive Care Unit. He had a lung infection so bad that he had to be intubated, restrained, and put into essentially a medical coma so he wouldn’t try to pull out the tube supplying his oxygen. This was the first time we had to seriously reflect on the fact he might not make it. Our oncologist was so supportive and amazing, but he also had to be honest. When we asked him what we were up against, he said “oncology patients in the ICU is not good. I hate that I have to tell you that there is a chance of mortality.”

For seven days Sammy fought for his life. He would regain a small amount of consciousness from time to time, so we could tell him how much we loved him, and he would reach for one of his favorite things, then the ICU nurse would push more sedation to get him back to sleep. This was a dark time. It is often the side effects of treatment, like compromised immunity to fight infection, that often takes cancer patients, before cancer does.

Thankfully his fledgling immune system and the medications were able to get him through the infection. Good news…. Immediately followed by bad news. Another life-threatening risk to bone marrow transplant patients is Post Transplant Lymphoma Disease. Which developed in Sam the same day they removed the breathing tube. The treatment for this involves an infusion that completely kills all the patient’s B-cells. These are the cells that develop the body’s immunity. To this day, they still haven’t recovered for him, resulting in the need for monthly infusions to support his immune system.

Sammy the Soldier’s fight against cancer was long and arduous, with periods of hope and optimism followed quickly by pain, suffering, and fear of the worst. Sam’s story is one of hope, perseverance, and strength. He made it. We are so lucky. Not all kids do.

Now Sam is healthy, happy, and doing Grade Four things. He is looking forward to his second stay at Kids Cancer Care’s Camp Kindle this summer! During the long phases in the hospital, having things to look forward to are so important. Camp Kindle was for sure one of these for Sam. There were others: Yoga and craft nights, Mother’s Day events, the Polar Express, Cool Yule theater tickets, and tutoring are all different ways that this amazing organization has supported our family through this ordeal. It is outstanding how they think of so many ways to support Alberta’s oncology community. Having subsequently learned of Kids Cancer Care’s investment in the research labs attached to the University of Calgary and ongoing donations to research to help save kids’ lives, it is with our whole hearts we would like to thank Kids Cancer Care for their ongoing work and unwavering efforts to support families like ours and the kids that have to face this horrible disease.

Thank you Kids Cancer Care!
Dean and Kelli Duffin

The Duffin family was featured in Leaving Thomas’ music video for “We Got This”, an original song inspired by Kids Cancer Care’s families.

Quinn Laudersmith was diagnosed with Wilms tumour at a young age, and he’s proud to say he’s a survivor. His cancer journey presented him with many challenges that he has overcome. Quinn also maintains a positive attitude and continuously thrives to improve as a person. 

His close contacts describe him as thoughtful, courteous, and mature for his age, but he is also kind, good natured and has a great sense of humour. Quinn has given back to the community in countless ways — raising $70,000 for Kids Cancer Care, helping seniors, serving as a cadet, and canvassing for the Heart and Stroke Foundation. He enjoys everything to do with avant-garde fashion. Historically, avant-garde in the French military referred to a small military group that scouted ahead of the main force. Quinn hopes to create a business in the men’s fashion industry that does just that — stays a head of the industry. He’s jump starting his career with a degree in business administration at Mount Royal University.