“I’m very glad I did it. It was absolutely amazing.”– Jo Pricca
If you ask Jo Pricca how cancer changed her life, you might be surprised by her answer.
Having high-risk leukemia as a teenager sucks. For Jo, it meant nearly four years of harsh treatments, missing school, missing friends, losing hair, gaining weight, and losing confidence.
Jo’s 13th birthday
Thanks to you, early in her cancer journey, Jo found Kids Cancer Care and a new lease on life. It wasn’t something she immediately embraced. As with most teens, Jo needed some coaxing.
“Cancer treatments can really take a toll on kids,” says Carolina Vina-Chamorro, the PhD. exercise specialist who oversees our PEER exercise program. “It diminishes their muscular and cardiovascular strength and affects their balance and coordination. All of this can impact their confidence and motivation.”
Jo at a PEER event in 2020
Quite understandably, Jo didn’t always feel up for an exercise class after a long day of chemo, but with a bit of urging from her parents Nadene and Omar, she went.
When the pandemic hit and group exercise sessions were no longer possible, Jo started one-to-one sessions with a PEER volunteer Rachel McInnes. It was just what she needed.
“The one-to-one sessions really helped because it gave me extra support and helped with my motivation and commitment,” says Jo. “It was also really good because we got to build a bond and it was like, the human connection was really important because we were able to actually do activities in person at times.”
Jo’s fitness tests bear this out. “We saw huge improvements,” says Carolina who tested Jo in March and again in July. “Her aerobic capacity improved by 10%, but her recovery after exercise and her overall strength improved drastically—by 100%. Her activity levels more than quadrupled but it was her motivation and attitude that saw the biggest gains. She’s amazing!”
Perhaps most importantly, when Jo’s family registered for the Kids Cancer Care Cycle Challenge in July and the Teen Leadership Program (TLP) embarked on a three-day bike trip in August, Jo was more than eager to take on these adventures.
L-R Jo and her parents Omar and Nadene take on the Kids Cancer Care Cycle Challenge.
In August, 21 teens set out on two weekend bike trips, which involved raising funds for the trip, grocery shopping, cooking their own meals, pitching their own tents, camping, hanging out by the campfire and visiting Urban Farm School, where they learned all about gardening and composting.
“It was the perfect way to cap off a really difficult year,” says Kaity Doiron, who oversees the TLP program. “It was a tough year for the teens, and after a year and a half of Zoom and isolation, they really needed this. They needed to connect in person.”
The Teen Leaders on their bike trip in August 2021.
Jo couldn’t agree more. As with many of the teens on the trip, she had already endured years of cancer-related isolation before the pandemic. “It was nice to finally connect with everyone in person and have those really silly conversations. We stayed up really late the first night, just giggling.”
Now entering her third year of TLP and preparing for veterinary studies at Olds College in the fall of 2022, Jo is proud of the positive changes she’s made in her life and grateful for the leadership opportunities offered by the program—even if it meant crouching to walk over wire mesh on a highway underpass with panniers and a bicycle in tow.
Jo
“The teamwork was amazing,” says Jo. “We worked together and passed our panniers to each other, like an assembly line. Then we walked our bikes over one by one. It was scary with two lanes of traffic overhead, but it wasn’t as bad as I thought it would be.”
While Jo enjoyed every minute of the trip, she was grateful to return home, where a hot shower and a warm bed waited.
Special thanks to RBC for supporting our Teen Leadership Program and to the Flames Foundation for sponsoring our PEER exercise program with support from Truman Insurance. Together, you and other generous donors are transforming young lives.
Omar and Jo at the 2018 Kids Cancer Care Dad and Daughter Gala
Jo in hospital
Jo and her dad Omar at the Polar Express with other Kids Cancer Care families
Jo takes on the Kids Cancer Care Cycle Challenge
Jo and other teen leaders wrap up a year of TLP with a BBQ event
I’ve pulled out all the old tricks — balloon basketball, baking muffins and banana bread, basement fort-building, glow-stick baths, board games, crafts, our own little dance parties and walking in the fresh air every day.
Aria and I spent months at home with very few visitors, when she was on treatment for stage 3 hepatoblastoma — a rare liver cancer. She was 14 months old and, as a single parent working full-time, I was blessed to be able to take a leave of absence from teaching.
Aria endured countless blood transfusions, months of chemotherapy and an eight-hour surgery to remove the tumour and 70 per cent of her liver.
The treatments weakened her immune system, so I got into a daily routine of disinfecting our entire home, while listening to our favourite music.
Our only outings were scheduled admissions for chemotherapy and appointments at the hospital. We passed the time doing crafts, going for drives and walks.
Thank goodness Kids Cancer Care was there for us. I loved their weekly Pizza Nights at the hospital. It was so comforting to meet parents whose children had made it safely to the other side of cancer. Aria was beyond excited to attend their SunRise day camp. She still talks about how she rode on the school bus to go camping — at Camp Kindle.
Fast forward to the COVID-19 crisis and the feeling is all too familiar. Aria’s immune system is still fragile. She is currently fighting an atypical presentation of mono — a rare case where the mono attacks the liver.
We’re on protective isolation. The doctor fears her liver couldn’t take it, if she were to become infected by COVID-19.
I’ve pulled out all the old tricks — balloon basketball, baking muffins and banana bread, basement fort-building, glow-stick baths, board games, crafts, our own little dance parties and walking in the fresh air every day.
We are fortunate to have Kids Cancer Care in our corner again. They are supporting families in isolation by moving programs online. These days, Aria and I are enjoying their online exercise classes for tots via Facebook Live.
After her first online class, Aria said, “Playing jump-over-the-snake and rescue-the-teddies game was so fun. It made me tired!”
She truly loved it and especially loved how Carolina mentioned her name in class. It brought a big smile to her face.
It’s amazing to feel a part of a community, even in this time of isolation. Thank you!
~ Aria’s Mom, Stephanie Boettcher
Thank you for being there for Aria during her isolation.
Mackenzie on nursing duty at SunRise.
With the recent outbreak of measles and talk in the media about the growing anti-vaccination movement, Mackenzie, Kids Cancer Care’s nursing manager, thought you may want to get the straight facts on this disease and on vaccinations in general.
As a member of Kids Cancer Care, we are part of a community that supports immuno-compromised children, who cannot be immunized due to their treatment regimen and are therefore vulnerable to infection. This is a responsibility that Kids Cancer Care takes seriously and, as a member of our community, I know it is something you also take seriously.
The spread of infectious diseases can be effectively mitigated by the immunization of eligible individuals. Immunization not only protects the individual, but also those at risk of infection. If you are interested in learning more about immunization safety and efficacy, please click here.
About measles Contrary to popular belief, measles is not a benign childhood disease. It’s actually a pretty nasty one. It’s potentially dangerous to long-term health and can even be life-threatening at times. It is strongly recommended that you seriously consider getting vaccinated against the measles.
Measles is a highly contagious disease caused by a virus in the paramyxovirus family. The measles virus infects the respiratory tract, and then spreads to the rest of the body. It can be spread when an infected person coughs or sneezes. The virus stays active and contagious in the air or on surfaces for up to two hours. It can also be spread through direct contact with an infected person. An individual with measles is contagious from one day BEFORE the onset of symptoms to four days AFTER disappearance of the red blotchy rash. (Alberta Health Services, 2019; Government of Canada, 2019; World Health Organization, 2018)
Measles vaccine Before the introduction of measles vaccine in 1963 and widespread vaccination initiatives, major measles epidemics occurred approximately every two to three years and caused an estimated 2.6 million deaths each year. (World Health Organization, 2018) Measles vaccination prevented approximately 21.2 million deaths globally between 2000 and 2017, accounting for an 80 per cent drop in measles-related deaths.
Measles: complications and death In 2017, despite the availability of a safe and effective vaccine, there were a total of 110,000 measles-related deaths worldwide. The majority of these deaths occurred in children under the age of five. (World Health Organization, 2018)
Most measles-related deaths are caused by complications associated with the disease. Approximately 40 per cent of infected individuals experience serious complications from the virus, including the following:
Blindness
Encephalitis
(an infection that causes swelling of the brain)
Severe
diarrhea and subsequent dehydration
Ear
infections
Severe
respiratory infections (e.g., pneumonia) (World Health Organization, 2018).
Serious complications are more common in children under the age five and in adults over the age of 30. (World Health Organization, 2018)
Measles in Canada Although measles was eliminated in Canada in 1998, the disease is not uncommon in other parts of the world and Canada has imported cases of the disease through travel of unvaccinated individuals.
In 2016, 11 laboratory-confirmed cases of measles were reported in Canada.Nine of the 11 cases were individuals who had not been vaccinated. The vaccination status of the other two were unknown. Five cases required hospitalization. All of the five hospitalizations involved children under four years of age. (Government of Canada, 2017; Government of Canada, 2019; Public Health Agency of Canada, 2019)
To date, in 2019,
51 laboratory-confirmed cases of the measles have been reported in Canada. These
cases were reported in Quebec, British Columbia, the Northwest Territories, Ontario,
and in Alberta. As of today, there are currently six active cases of measles in
Canada including a recent case in Edmonton and area. (Government
of Canada, 2019; Public
Health Agency of Canada, 2019)
Facts about measles
Measles can be prevented with vaccination.
Measles occurs worldwide and is a highly contagious respiratory infectious disease. Unvaccinated persons can catch this airborne virus by walking through a room up to two hours after an infected person was in the room.
Symptoms include:
Fever of 38.3°C or higher
Cough
Runny nose
Red eyes
Red, blotchy rash that spreads from behind the ears onto the face, trunk, arms and legs and usually occurs three to seven days after the onset of fever
An individual with measles is contagious from one day BEFORE the onset of symptoms to four days AFTER the disappearance of the red blotchy rash.
There is no cure for the measles virus. Treatment is meant to manage symptoms of the virus and prevent serious complications.
Measles is 100 per cent preventable with vaccination.
The measles vaccine is available as measles-mumps-rubella (MMR) or measles-mumps-rubella-varicella (MMR-Var).
Two doses of the vaccine are recommended to ensure immunity.
Common Questions about Measles If you have more questions about measles, please visit the Alberta Health Services immunization page here.
What is the recommended immunization schedule? Click here for doctor-recommended immunization schedule.
What is Herd Immunity? Herd immunity or community immunity occurs when large groups of people within a population are immunized. This helps to prevent the spread of communicable diseases, such as measles, and protect not only the individuals who have been immunized but also vulnerable members of the community who cannot be immunized. Infants too young to be immunized, individuals with compromised immune systems, patients undergoing cancer treatment, transplant recipients and the elderly rely on herd immunity to give them some degree of protection against some communicable diseases. (Alberta Health Services, 2019; Government of Canada, 2019)
Is Herd Immunity a good alternative to the measles vaccine? For herd immunity to be effective and help prevent the spread of measles within a large group of people, 95 per cent of the population must be immunized against the disease. For children and adults who are able to be immunized, herd immunity does not give enough individual protection to be considered a good alternative to getting immunized. (Alberta Health Services, 2019; Government of Canada, 2019) Where can I learn more about recommended immunizations? Alberta Health Services has a wealth of peer-reviewed, research-based information on immunizations. You can find it here.
Where can I learn more about vaccine safety? Questions or concerns? Mackenzie Murawsky, Kids Cancer Care’s nursing manager, would very much like the opportunity to speak with you. Please feel free to contact Mackenzie by phone or email.
I’m going to show you the best Santa-But-Not-Actually-Santa pictures you’ve ever seen. Let me set them up. ~ Dave Kelly
Theatre Calgary has been doing A Christmas Carol in this city every year for over three decades. Stephen Hair has been playing Scrooge for over 25 years. It’s a tremendous production every year and every year he’s a tremendous Scrooge.
For 20 of those years, on the Sunday before the official opening night, Theatre Calgary has been doing a special Christmas Carol for a very special audience. Alanna Schwartz has been going to that Sunday show every year since 2002. And she has pictures to prove it. That’s where the Santa-But-Not-Actually-Santa pictures come in.
The Sunday night show is hosted by Kids Cancer Care, a tremendous group that does exactly what the name says. That night young people can show up with an IV pole, with a mask, or with a nurse and no one bats an eye. And if you’re six-year-old Alanna and you’re six months into chemo and radiation, you might show up with a wig and a hat…and your cousin Kenzie.
“Little Miss A was so sick,” explained her mom Jody. “When they portrayed Tiny Tim’s death in the play, I was a basket case trying to be brave as I sat beside Alanna and held her skinny little hand.”
After the show, the cast came out to say hello, and Alanna and Kenzie got to meet Stephen Hair. “He was so kind, so warm, and the kids were vibrating,” Jody said. “My heart was full.”
“Then,” she said, “something magical happened.”
An oncology doctor who knew Jody walked up to her with a Mom and her teenage daughter. “I have someone you should meet,” said the Doc. The Mom asked Jody how Alanna was doing. Clearly this woman knew a hat and wig when she saw one. Jody talked a bit about Alanna and her diagnosis; her heart still full from the play, full from trying to be a brave mom and not a scared mom. Then the woman looked at Jody and said, “My daughter had the same thing,” and put her arms around the teenage daughter standing beside her. A beautiful, healthy young woman.
“You could have knocked me over.” Jody told me. “We were looking for just a bit of joy and that night I found it in Stephen Hair and in A Christmas Carol, and then, in the middle of it all, I also found hope: this mom had her arms around living proof that you can beat cancer.”
And for the past 16 productions of Christmas Carol, Alanna and her cousin Kenzie have gone every year. They go because the show is great. They go because Stephen is great. And they go because Jody tells them you never know if a Trying-To-Be-Brave Mom is there with their sick child – and they need hope.
“Some people have pictures with Santa at the mall to monitor how their kids have grown. We have Stephen as Scrooge pictures.”
“This is 2004. She had hair! Not much, but she had hair!”
2005. Stephen was doing his best “humbug” face – but the kids knew better.
“This is 2006. We thought Alanna’s hair would catch up to Scrooge’s…but Stephen had a new wig.”
2010. Look at those two! Alanna was turning 15. Stephen looks proud here – and he should be.
2013. She was 18 years old. Can you believe that?
Last year, 2017.
This was last year. The picture isn’t great. Alanna’s boyfriend took it. I like to say that. Alanna’s boyfriend. Not because he’s a bad photographer. I just like to say it. Alanna’s boyfriend.
And so, this Sunday Stephen Hair and the rest of the cast are going to put a special performance of this year’s brand new A Christmas Carol. It’s a show that gives people joy, a show that gives people warmth and, even if they don’t realize it, it’s a show that gives people hope.
Join Dave for another Christmas edition of Dave Kelly Live, Calgary’s talk variety show. Featuring special guests, surprise appearances and the best in Canadian talent, stories and music. This show will feature the Calgary Stampede’s Young Canadians. Once again, Dave will be joined by our house supergroup, The Flat Whites, world-renowned visual artist Mandy Stobo, and the man with the beer – Jim Button. Click here for tickets.
Published with permission from Dave Kelly.
I’ve often thought that someday I should go back to the beginning and read and print all the saved emails, print out all the stories I’ve shared on the blog I started to keep friends and family in the loop when Macey was diagnosed with cancer. Writing this piece for Childhood Cancer Awareness Month seemed like the perfect opportunity to start this project. So I printed 176 pages of the blog and then started reading over emails. It brought me to tears. And it brought me back to the beginning. The beginning of what seemed a nightmare.
The little tidbits I read were enough. I’m not ready yet. I will be someday, but not now. I’m not ready to read every word yet. It feels like a long time ago that we were at the beginning, but reading back in time, it also feels fresh—that time of sinking heart, amazing love and the start of a great, big, awful battle.
My ‘give-chemo’ alarm just went off. It’s become so normal, but I do remember the thought striking me many months ago that not every mom has alarms to remind her to go upstairs and administer oral chemo medicine to their now three-year old daughter. I also remember how quickly I went from feeling lost and new to the cancer journey, to feeling like I should somehow comfort others who had just received the horrific news that their baby or child has cancer.
Macey
The worst night of our lives was Monday, December 1, 2014. On that night we arrived at the Alberta Children’s Hospital in Calgary with our daughter Macey, who was 21-months old. She had slept the entire day. She also had bruising on her face and body that wouldn’t go away and, over the weekend, she’d had some mild nose-bleeds. For three months prior, she had also had a series of illnesses that wouldn’t let up — an extended hospital stay for what they thought was dehydration/infection, a lymph node infection that landed us in emergency. Macey had stopped crawling and did not like to be put down, probably because of bone pain we were unaware of.
When we arrived at the hospital, Macey was the pale colour of the hospital walls and she was lying over our shoulder like a rag doll. She was limp and lifeless. The triage nurse ushered us in immediately to see a doctor and our hearts felt the impending doom of something serious.
That night of tests was excruciatingly long. It was so difficult to get blood samples. Macey ended up looking like a pin cushion and was poked in every possible location multiple times — feet, hands, elbows, head. They had many people and specialized teams attempting. There were X-rays and tests with names I cannot even remember now. We walked her and rocked her and tried to soothe her.
A lovely doctor came in around midnight and suggested we sit down. I cannot even write this without reliving that life-altering moment and the emotion that came with it. She told us, with tears in her eyes, that our daughter had leukemia. Cancer. Our baby. They don’t belong together. We were devastated.
We didn’t sleep that night and were transferred to the ICU because Macey was having some complications, including pneumonia. It took a few days to isolate what type of leukemia she had and to start treatment. She was so sick that they couldn’t administer chemo until her health had improved. It is possible that if we hadn’t taken Macey in on December 1st she may not have woken up the following morning. That is how low her red blood cell count was at that point. She was diagnosed with high-risk acute lymphoblastic leukemia and she received her first dose of chemo on December 4, 2014, which was my birthday—one I will never forget.
Not only are those initial days a blur, but also the last year and half. There are some things I remember, such as when she lost her first tuft of hair. I remember the generosity and kindness of family, friends, and strangers. My husband Josh’s office created The Macey Project and showered us with support in practical, financial and emotional capacities. They continue their support today and really seem to understand that the burden of childhood cancer is carried for much longer than at the front end of diagnosis.
Macey spent the entire month of December in the hospital and, later, at a friend’s home in Calgary, so we could be closer to the hospital (a total of seven weeks).We have two boys, Hudson and Sawyer, who were five and four years old at the time. It was difficult for them to have their mom and baby sister gone for such a long time. Even harder than that first month, were the many months to follow where, at any given moment, Macey and Mom were off to the hospital.
Fevers and illness came often and came at inopportune times. The logistical nightmare of childhood cancer is something so real for families. Having to pull yourself away from your boys, who are clinging to your leg in tears, to take your sick daughter to the hospital, is heartbreaking. Missing fun things or planned things or things the boys would have enjoyed became par for the course. For example, in May 2015, I wrote in our blog: “Today Hudson (my oldest) turns 6. And, sadly, we are doing present-opening over FaceTime because Macey ended up at the hospital with a fever.”
Macey’s cancer experience was also emotionally tough on her big brothers Sawyer (left) and Hudson
After six months of treatment, I wrote: “It has been 6 months now since Macey was diagnosed on December 1, 2014. I cannot believe that amount of time has gone by. If one way of measuring life’s success is based on accomplishments, travel, fun adventures, books read, or miles run, we don’t have too many successes to speak of. But, our yardstick has changed. And, if you measure our success in smiles and strength from Macey, milestones that she has newly reached, and pure survival of our family unit, then I think we are successful. Praise God for getting us to this point.”
A visit from big brother Hudson
We attended the Kids Cancer Care Parents’ Quest for the Cure gala in March 2015 (and we had the privilege of attending again in 2016). At the gala, they played a video — the sad and touching kind of video that makes you wonder why the injustice of kids having cancer exists. It was in that moment that I realized I was living that. We were one of those stories. We had lived a blurry three months of holding a bald baby and watching her suffer and fight. And fight she did. Her strength is inspirational. At that gala one of the speakers was talking to us at the end of the evening and encouraged us several times to not overlook the impact this was having and could have on our boys. That stuck with us and from that moment on we took advantage of all the Kids Cancer Care opportunities we could.
Macey and Mom, inseparable at the hospital
Kids Cancer Care gave my boys a reason to smile, while their parents lived a distracted life. Acquaintances and friends did that too — taking our boys for a day or a night or for a fun activity. They’ve been able to attend many fun things courtesy of Kids Cancer Care, such as camp, Family Ski Day, the Polar Express adventure, and more. Macey even got to experience two days of camp this summer, 2016!
Sawyer and Hudson joined Kids Cancer Care for a week at our SunRise day camp this summer. Macey was sick, so she could only join us for two days.
Feeling a bit under the weather, Macey gets a little shut-eye at SunRise day camp
“Two days with Macey gave me enough magical moments to fill an entire year,” says Jenna Schwanke, childlife specialist at Kids Cancer Care. “Macey’s mom hadn’t planned on her going, because she’d just fractured her leg the night before, but we assured Mom that we had the support to care for her and, if Macey was up for it, we were definitely up for it.”
In her purple tutu and orange cast, Macey was carried in the arms of one volunteer after another. She later joined in on the activities as best she could.
“Amid the pain, she giggled and laughed and became our little hero of the day on Friday,” says Jenna. “I was blown away by the support of her big brothers. No distance was far enough to prevent these little guys from hearing Macey call their names, to which, they came a running and rushed to her side. The three Bangsund kids make up one incredible team and we can’t wait for Macey and her brothers to return for a full week of camp next year.”
The Bangsund boys hit the slopes at Family Ski Day
There are Beads of Courage that Macey has been collecting since the beginning. This is also a Kids Cancer Care initiative and it is an amazing way to tell her story. It is a visual representation of all that she has endured. There is more treatment left for Macey and yet she already has 500 beads. These beads are different colours and shapes, each representing a medical procedure or milestone such as blood transfusions, needle pokes, surgery, chemo, hospital overnights, hair loss, lumbar punctures, X-rays, MRIs, birthdays, isolation, clinic visits, and more. One day, when she is older, Macey will learn all about her strength, represented by these beautiful beads.
The unpredictability and disruptiveness of life with childhood cancer has been a lesson in disguise for our family. In the very early days we learned that our plans are not our own. We are not in control and the strength we need to brave this journey would be provided in small doses by a force much greater than the strength we could ever muster on our own. We learned to live in the moment in a way that only something like this can teach. Joy could be found in heartache and hope was hidden in the darkness. The support around us bolstered us and helped us crawl through the unknown life-territory we had been forced to travel.
The sensitivity and love of Macey’s brothers is something truly beautiful. I’ve heard her oldest brother Hudson say a couple of times, “I wish it was I who was sick instead of Macey.” I wrote in the blog in September of 2015: “They are learning compassion and patience in a way that no 5- or 6-year-old should have to. I am learning the same. My daughter is learning strength and resilience, while teaching the same to me. She shows the doctors and nurses and strangers love, because somehow she has love to share.”
In the last phase of treatment, Macey is now enjoying regular toddler adventures such as walking, climbing and leaving behind a welcome trail of toys where ever she goes
There were many hospital stays, scares, and dark times. Even with all the support it can feel like a lonely journey. Sometimes hospital stays would be reminiscent of the beginning, her being so sick. She lost her hair, it grew, and she lost it again. Now it is amazing and beautiful and has grown so much! It is almost time for a ponytail. I still remember the day her immune-fighting cells were of a count high enough that I could take Macey to Walmart or Costco and the joy that filled my heart. Oh, to show off my beautiful daughter and not have her isolated from the world! This is a mundane activity that became a great pleasure. Contrast that activity with Macey being on a morphine infusion (through IV) to manage pain, along with IV nutrition to give nourishment, and you see how amazing these small victories are!
This year, we saw Macey take her first steps, which was very exciting. She also climbed our stairs for the first time in July, 2016. Her words are coming now and it is the cutest thing to hear: Music to our ears. She has a mind of her own and lets us know what she needs and wants. Any mess she makes in our home is welcome because it means she is home and healthy and making a mess, like a regular toddler. We are thankful for the messes and we are thankful for how far she has come and the battle she has most valiantly fought so far.
You don’t come through this and remain the same person you were. Things change — perspective, priorities, friendships and more. As I wrote in my blog on July 15, 2016, “Sometimes the joy gets overshadowed, but writing this snapshot today, celebrating Macey, reminds me of all of the good — of how far Macey has come. There was a time not long ago, where there wasn’t a toddler trail of toys all over the house and where hospital stays were more prevalent than milestones. Watching Macey trouble-make, mess-make and noise-make is what dreams are made of. My prayer is to not lose sight of that. Some days the gloom overshadows the joy, but the real miracle is Macey and watching her develop into a delightful, beautiful and loving child.”
It all started with extreme pain in my back and knees. What I thought was just an injury from playing volleyball turned out to be a tumour in my abdomen. The tumour was massive. It was 20 by 10 cm—about the size of a cantaloupe. I was 15 and had to quickly come to terms with the fact that, not only was I dealing with cancer; I was carrying around a 15-pound tumour in my abdomen that I hadn’t even noticed growing.
They called it neuroblastoma, a type of cancer that forms in nerve tissue. In the beginning, I had no clue what neuroblastoma is but, over the past three years, I’ve learned all about that and more.
My doctors at the Alberta Children’s Hospital had to come up with a plan of attack and that meant I had to go through four rounds of chemotherapy. But after four rounds of chemo, the tumour still wasn’t shrinking. That was bad news.
Fortunately, surgery was still an option. But the tumour was wrapped around my aorta, so that was extremely bad news.
But my surgeons fought for me and they didn’t give up. They put their heads together and decided they would try surgery in the hopes of getting as much of the tumour as possible—even if that meant removing only a portion of it.
I honestly can’t imagine how they felt going into surgery that day. I mean, I was gonna’ sleep through the whole thing. They had the hard part.
Well, if you can believe it, after 14 hours, my amazing surgery team was able to get the whole thing!! Imagine the skills and patience it took to do that. No one could believe they got the entire tumour. It was incredible news and a TOTAL game-changer!
And the cancer journey begins
Before surgery, I had asked them to take pictures of my tumour for me. And they did! Not like a selfie or anything. I can assure you it was all very professional.
Following surgery, I had to spend five days in ICU. Believe it or not, one of the hardest parts of my entire treatment was lying in bed with a breathing tube down my throat and not being able to talk for FOUR days! It was agony. It was the quietest I have ever been!
Even though, today, my cancer is gone and I am cured, I made friends who didn’t survive. And, that is why supporting pediatric cancer research through organizations like Kids Cancer Care is so important. It’s about saving EVERY kid. And making sure they survive with fewer side-effects from the very treatments that saved them.
So I survived cancer and people call me brave. I guess so. But imagine how daunting it must have been for my surgeons to go into that operating room. Imagine the skill it took to take out the entire tumour and not damage my aorta.
Imagine the pressure.
And the surgery is successful! But their job’s not done. Now, they have to ask me if they can have my tumour for research—to help other kids.
They did ask me. And I have to be honest. I hesitated, just for a moment, only because I kinda’ wanted to keep it myself. Like maybe get a shadow box for it and keep it in my room. That might have been cool. But then I realized my tumour would do more good in the hands of world-class researchers, so of course, I said they could have it.
I was given the opportunity to visit my surgeon Dr. Paul Beaudry in his research lab. He is studying my tumour to invent new treatments that will help kids like me in the future.
Maddie with her surgeron Dr. Paul Beaudry
Dr. Beaudry is what they call a clinician-researcher and is part of the Experimental and Applied Therapeutics research initiative, which Kids Cancer Care helps fund, at the Alberta Children’s Hospital Research Institute and the University of Calgary.
What’s cool is that what he learns from my tumour can be applied by cancer researchers, not just here in Calgary, but all over the world.
So basically my tumour is famous!
In all seriousness, these amazing people helped me. They accomplished the near impossible and they gave me my life back. I am alive today because of medical research and modern health care.
Since surgery, I have been recovering and getting back to doing the things I love to do. I’ve have had to alter my life in more ways than one since my diagnosis. I stopped playing volleyball, which I never thought I would have to do, but that missing piece from my life has now been replaced with things like going to Camp Kindle!
I was told all about camp while going through treatment. Every time I went to the hospital, my nurses would tell me: “You have to try it! At least go for one weekend and give it a go.” I was very hesitant to go though because I would know no one.
I finally decided I would go to Teen Camp and try it out. My mom signed me up and next thing I knew I was on a school bus heading out to Camp Kindle. Everyone had friends; they were all really close and I didn’t know anyone. Not knowing anyone at camp is like walking into school as the new kid. But soon enough I was a part of everything going on. They made me feel as if I had been going to camp for a long time! It’s hard to express exactly how they made me feel included or what they did to make me feel welcome, but they just did. Everyone is so kind and cares about each other. There wasn’t just one thing they did to make me feel a part of camp; it was the many little things they did throughout the weekend, like hanging out with me, sharing stories, laughing, showing me around and sharing camp traditions with me. By the end of that weekend I didn’t even want to go home!
Maddie and friends at Camp Kindle
Since that first weekend of camp I have continued to go! I have met so many amazing people who I have stayed connected with outside of camp too. These people mean so much to me, because we can connect in a way that I am not able to with other friends. We have all been through similar situations and we have all changed because of it. I can tell my friends from camp anything and I know that, no matter what, they won’t judge me. Even if I do something really funny and embarrass myself, because I’m good at that, I know they are there for me. They all have such big hearts, great personalities. They are hilarious and that is only the beginning of the long list of things they are. I can’t imagine my life without them anymore because they mean so much to me.
I am so thankful for the opportunity to go to camp because it is a place where cancer doesn’t define me. I can just go and be with people who are now my best friends. Camp Kindle is a place where you can feel comfortable and you are able to forget about what is going on and just have fun! It doesn’t matter what stage of your cancer journey you’re in, you are always welcome and accepted no matter what! It doesn’t matter if your family can’t afford it because you don’t have to pay for it, which is all thanks to people in the community who donate or raise money, so kids like me can go to camp.
In El Salvador, building homes for impoverished families through Kids Cancer Care’s Teen Leadership program
Camp also opens up so many doors for everyone and it has opened many doors for me. For instance, the Teen Leadership Program, where we volunteer at many events such as Kids Cancer Care’s Dad and Daughter Gala and Parents’ Quest for a Cure gala. I’ve been involved in Teen Leadership for the two years. We get to work on our fundraising skills and raise funds to travel over spring break to help impoverished communities in developing nations. I have been incredibly lucky to have gone to El Salvador on spring break of 2015 and the Dominican Republic this past spring break. These trips are so eye-opening and have made me grow so much. They are such an amazing experience and I am beyond lucky to have been able to participate on them.
It’s not only through research and camp that Kids Cancer Care helps families like mine.
For starters,PEER This is an exercise and physiotherapy program for childhood cancer patients that helps us regain our strength and get back to doing the things we love.
Through their Cooking and Caring program, Kids Cancer Care also delivered home-cooked meals to our family, so my mom didn’t have to worry about cooking for a while. Imagine a freezer full of food. That was us.
And I was fortunate enough to receive a scholarship from Kids Cancer Care in June 2016, so I can further my education and achieve my goal of becoming a psychologist. I started university this fall.
Proud Mom and Dad with Maddie after she received a Kids Cancer Care Derek Wandzura Memorial Scholarship
Being part of Kids Cancer Care and everyone involved is truly an amazing community to be part of. They all support you and make sure you are doing well in a hard time—and even AFTER the hard time.
We should all be grateful to be a part of a community that gives us a sense of warmth. It makes everyone’s journey so much easier to deal with and noone is ever alone.
Kids Cancer Care is a big family and we all have one common end goal—to make sure everyone has a sense of belonging when going through cancer. I don’t know what I would do without Kids Cancer Care because they have done so much for my family and opened so many doors for me.
When I was sick, there were fundraisers held in my honour, but that’s because people knew me and knew about my cancer journey. They were my friends and family.
The fact that people in the community choose to help kids like me, doctors and researchers by supporting Kids Cancer Care—so many people you don’t even know—means so much to me. It’s truly amazing. I can’t thank you enough.
Before Kevin and Cameron Olmats were old enough to understand, their brand new baby brother became very sick. Little Ethan was only three months old, when he was diagnosed with infant acute lymphoblastic leukemia. Although his time on earth was brief, Ethan made a lasting impression on everyone he met—especially his big brothers.
Ethan at the hospital. Still smiling, even while going through cancer.
Ethan’s brothers meant the world to him. His little face would light up in a smile every time they visited him at the hospital. And, Mom and Dad made sure that was often. From the beginning, they included the older boys in Ethan’s cancer journey, while also juggling work schedules and extracurricular activities to ensure that life for Cameron and Kevin, who were three and seven at the time, remained relatively normal.
It’s an approach they maintain today. They speak openly about Ethan and the loss of his joyful presence.
“During our Christmas dinner last year, we were talking about Ethan and how his next birthday, in May, would have been his first double digit birthday. The big 10!” says Mom, Colleen Olmats. “We talked about what we should do to commemorate the milestone. Ideas were going back and forth and then Kevin said, ‘I know what we should do to make it special and make it mean something. I’ll shave my head in memory of Ethan!'”
That’s when Cameron chimed in, “So will I!” That was it. It was decided.
The boys didn’t cut their hair again from that point forward and they started spreading the word about their shave in Ethan’s name. When they discovered that William Aberhart High School was holding a shave event on June 2, Kevin and Cameron joined their ranks.Together, the Olmats brothers raised over $5,000, bringing William Aberhart High School’s fundraising total to over $8,000.
Kevin and Cameron know first-hand the impact Kids Cancer Care programs can have in the lives of kids and families like theirs, so raising money for the foundation was a natural choice for them.
The Olmats first encountered Kids Cancer Care during Pizza Nights at the hospital when Ethan was on treatment. During Weekly Pizza Nights, they met other families on the unit as well as Kids Cancer Care volunteers, whose own children had also been through cancer. These volunteer parents would become lifelong friends, offering the Olmats support throughout Ethan’s cancer journey and beyond.
“They became a lifeline for my parents and Cameron and I,” says Kevin. “It’s hard to talk to friends about cancer when they’ve never experienced it themselves. They try, but they can’t really relate, so they can’t really offer support in the ways you need it. These friends could. And it was Kids Cancer Care that brought these friends to us.”
The Olmats family soon started going to Cool Yule, Family Camp, Family Ski Days, summer camp and much more, where they found healing and comfort in their darkest time.
“I still remember the love I felt from Tracey Huddy [former Kids Cancer Care social worker] as we sat on the stone of the fireplace at Camp Kindle and talked about Ethan’s death,” says Kevin. “I don’t remember the words now, but I do remember she gave me exactly what I needed at that time to feel like I could one day be whole again. She helped me to understand the feelings I was going through and that what I was experiencing was a normal part of the grieving process.”
“Just being with other families like ours has helped us immensely with our healing journey,” says Colleen. “They helped show us we could laugh again without feeling guilty. They helped us to become strong again, to live again and to keep moving forward with our lives–just as Ethan would want us to.”
Thank you, Kevin and Cameron! You are shave superheroes!
And thank you to all the brave students of William Aberhart High School, who shaved their heads and raised funds for young people like Kevin and Cameron, whose lives have been interrupted by childhood cancer.
“Gabriel has had a Mohawk since pre-school. It’s his identity. I don’t know why but he’s always insisted on keeping it. We’ve been encouraging him for years to cut it, but he never would, until now,”–Gabriel’s mom Stephanie Lynn.
Gabriel’s signature Mohawk even showed up in his artwork. Note the Mohawk blood donor (centre) in the award-winning drawing Gabriel made for the Canadian Blood Services at Survivor Day.
The Mohawk has been Gabriel’s signature look ever since he was a youngster. But about a month before his father’s 50th birthday,12-year-old Gabriel suddenly announced that he was getting rid of the Mohawk.
“I want to get rid of it,” he said. “I want to cut it off at dad’s birthday party and raise money for Kids
Cancer Care.”
Gabriel and his younger brothers Shaine (10) and Darius (8) have been participating in Kids Cancer Care’s camp and outreach programs for years—from Pizza Nights at the hospital when Shaine was on treatment, to fun and adventure at Camp Kindle. Gabriel felt it was time to give back.
“He came up with this all on his own,” says Stephanie. “I don’t know what changed; if it’s because he’s going into junior high next year or if it’s because of all the change we’ve had this year, but something shifted and now he’s done with it.”
As with many Albertans, the Lynn family has had a tough year in 2016. Mom lost her job and Dad has lost most of his contract work. With grade seven on the horizon for Gabriel, maybe it seemed like the right time for a change. Whatever his reason for making the change, Gabriel raised a fair chunk of change for Kids Cancer Care.
“His goal was $500, but he raised $1,275,” says Stephanie. “He wanted to raise enough money to send a kid to camp.”
It costs $1,500 to send one child to Camp Kindle for one week, so Gabriel was very close. You can help Gabriel meet his goal of sending one child to camp, by donating here.
Thank you Gabriel! You’re a shave hero!
“Here in the heart of me, that’s where you’ll always be.” I am told that one of the greatest fears of families who lose a child to cancer is that their child will be forgotten. More than anything, they want to keep their child alive, if not in body, then at very least, in their hearts and in the hearts of others.
On the evening of September 30th, some 20 families affected by childhood cancer gathered at Eau Claire Market to do just that: honour the lives and memories of children taken by cancer. Not losing sight of the family nature of Kids Cancer Care, Time To Remember was suitably child-friendly with hot chocolate to warm our spirits as kids and parents of all ages crafted lanterns in honour of their lost loved ones.
Each family, each individual, brings their own special meaning to Time to Remember. I brought the only thing I could, a sincere desire to show solidarity with these families. In talking with families, I discovered that the experience of Time to Remember does not begin at 7 pm when they arrive at Eau Claire; it starts in the morning as they begin rummaging through old photos to choose just the right one for their lantern, each photo stirring new memories.
Time to Remember is a ritual, a rite, that begins early in the day and goes deep into the night. It brings families from all walks of life together to witness and share in their common loss. The symbolism of the warm light of the lanterns cutting through the darkness was not lost on the group meandering through Prince’s Island Park. The procession of families arrived at its destination, the amphitheatre of Market Square, where each family placed their child’s lantern. Gathered around the soft glow of these tiny lanterns, the group shared in a singing of Daniel Lavoie’s, Here in the heart of me. And with those words echoing through the night, Childhood Cancer Awareness Month came to a close.
Time to Remember is a fitting close to Childhood Cancer Awareness Month, an international initiative designed to illuminate the tragedy of childhood cancer and its devastating wake. With an overall survival rate of 82% for Canadian children with cancer, it is easy to lose sight of the work that remains. And yet, despite huge advances in research and care, childhood cancer is still the number one disease killing children today. So what of the children who do not make it? What of the families who lose these children? While remembering there children, Time to Remember reminds us of the work to be done — a cure for every child. You can easily fall into despondency when considering such tragedy, but hearing the families’ stories and how they have come through somehow offers you a healthy perspective on how best to support them–even if it’s as simple as just showing up.
I find it difficult to summarize the diverse experiences of these families into one message, but if I had to choose, it would be to always react to life positively and in such a way that honours its fragility and impermanence.
–Blair, childhood cancer survivor and volunteer
PS. You can get a sense of the evening from this photo collage of Time to Remember 2013, created by Monique de St. Croix of Unique Perspectives. We’re working on our photo collage for the 2014 event, so be sure to check back here or on our YouTube channel.
Thank you to our generous fundraising partners who make our programs and services possible
boys didn’t cut their hair again from that point forward and they started spreading the word about their shave in Ethan’s name. When they discovered that William Aberhart High School was holding a shave event on June 2, Kevin and Cameron joined their ranks.Together, the Olmats brothers raised over $5,000, bringing William Aberhart High School’s fundraising total to over $8,000.
