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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My sister….

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

It was simply a sore throat… swollen glands…  possibly mono.  How on earth did three visits to the walk-in clinic over Christmas break and two visits to Alberta Children’s Hospital over a sore throat become cancer?  How was it our vibrant, energetic, active, healthy 13-year-old boy Ty’s blood stream was 90% cancer cells? It was acute myeloid leukemia (AML)—not a good kind of leukemia. January 19, 2009 at 1:47 pm our childhood cancer journey began.

That same evening at 8:59 pm, Ty was admitted. Our family hospital separation began. Ty’s little sister (Tanaya) and his stepdad stayed at home, while Ty and I moved into the hospital. Medical staff warned us it would be a long, difficult journey. Ty underwent the protocol for AML, where the high-dose chemo took him to the brink of death several times over the next 6 months. The intensity of the chemo destroyed his immune system, presenting an ongoing threat of infection thus keeping him mostly in isolation and with few days out of the hospital. School was attended in his hospital room, friends were estranged.

On July 31, 2009, he was discharged – cancer-free. June 4, 2010, after feeling ill, a visit to the oncology unit confirmed our worst fear – the cancer had returned. This time holding a bigger threat. Once again remission would have to be achieved and because the intense chemo did not work, a bone marrow transplant was the only option. Finding a donor would be difficult, because Ty was of mixed race (dad black – mom white) the chances of finding a 100% match were less than 5%. By God’s grace, matches were found and a dual cord blood transplant was received September 17, 2010. The transplant was successful! 

Unfortunately, in March 2011 graft vs host disease (GVHD) began attacking: skin, eyes, mouth and lungs. Everything that could go wrong seemed to. He had infection after infection bacterial and viral, fevers often, making hospital stays long and frequent. Outbreaks of the GVHD produced deep painful crevasses in his hands and feet. Two life threatening visits to the intensive care unit resulted in unanswered testing and “perplexed” doctors. During the third visit to the intensive care unit, September 10, 2012 at 4:18 am, Jesus took Ty home. Seven days later would mark two years cancer-free, after that date, the chances of relapse was next to none.

Ty shared a hope for two things:

1. First – That the gold ribbon, for the battle against childhood cancer, be as readily recognized as the pink;
2. Second – That no child would suffer the way he did. 

The few opportunities he had to raise awareness, he embraced with passion. Speaking at a bone marrow drive, he left the audience with the challenge: “If I do this and little kids have to do it, you can do it!”

The only exposure Ty had with camp was in 2009 and his experience was not what I had envisioned.  Ty had been discharged from only three days prior, the expectation for change, independence and fun was just too much too soon. “Mummy,” he later told me, “we have been in a 10’ x 10’ room together for almost 8 months, you just can’t leave me like that.” He had missed the natural separation teenagers experience. Although physically he was 14, mentally he was not.

The Kids Cancer Care Foundation of Alberta holds so much more for families than just camp. Families in the unit continue to be Blessed with supper every Wednesday with fresh warm pizza. Kids cancer parents volunteer their time to serve, to encourage and to bring HOPE. Wednesday was one day of the week that I did not have to worry about dinner, one night in the week we could all eat together as a family, one night in the week… I just knew.

Ty was blessed when we received a call from Kids Cancer Care, inviting him to attend a helicopter learn and fly. We were both surprized and thrilled to learn he actually got to take over the controls and fly! He spent a day attending a PGA tournament held in Banff. The kids got instruction at the course driving range by some big-time names in golf and later personally met several of the players.

I actually am the one who has been the most involved and received the most from Kids Cancer Care.  From pizza night while in hospital to Bereaved Camp 10 years later, Kids Cancer Care has been a lifeline for me. I have received an enormous amount of support and encouragement from Kids Cancer Care over the 11 years being involved. I have attended Bereaved Camp since it started six years ago, it’s a weekend when families who have lost a child are surrounded with others who have lived the same experience. We bond, we grieve, we celebrate and we heal together. Time to Remember was put in place to celebrate our kids who have gone to Heaven. Every September for the past 7 years Kids Cancer Care invites families to join for a “Time to Remember.” They put an amazing amount of thought and energy into this special evening remembering our kids. Most recently I got involved with the foundation on my bicycle. I went from a couch potato to riding 78 km in a day, raising money for this incredible organization. 

In 2009, I became a member of a club I would wish upon no one; however, I have met the most incredible selfless people through this journey. Kids Cancer Care, which was started due to the horrific disease of childhood cancer, has become an amazing support to so many families in so many ways. 

I don’t know why God allows cancer. I especially don’t understand why He allows kids to get cancer.  However, I believe in His promises. I trust He does the best for all His children whom He loves dearly.   He blessed us with this amazing organization who give and continue to give, an organization who directly supports families affected by childhood cancer everyday—thanks to the generous supporters in our community.

2legit2quit (it’s Ty face book “about”)

Our journey began in August 2017. We picked up Jocelyn from science camp in Drumheller when we knew something was not right. After several visits to the clinic over two weeks, we noticed Jocelyn progressively getting worse. 

She was very pale and weak and just felt crappy. On August 13^th we took Jocelyn in for routine blood work, and then again on the 17^th at the walk-in clinic. We took her in one more time on the 21^st for a glucose fasting test because the doctor thought she could be diabetic. On the 25^th we met with an endocrinologist who instructed us on how to use a glucometer and was going to send us home. Our intuition kept telling us that something was wrong, so we asked the doctor if it could be something else since she did not look or feel well. 

The endocrinologist examined her one more time and advised us to take her for more blood work as she agreed that Jocelyn did not look well. We headed to the urgent care clinic where her blood count indicated she likely had leukemia. Jocelyn was transported by ambulance to the Alberta’s Children Hospital. 

Not even the emergency doctor at the children’s hospital could believe that she was cracking jokes with a hemoglobin count in the 30s!  

A few days later, our world turned upside down. Jocelyn was diagnosed with leukemia. We spent the next few weeks living at the hospital. We had to learn an entirely new vocabulary and so many new procedures. All the different chemotherapy drug names, lumbar punctures, bone marrow extracts, and surgery for the IVAD placement were overwhelming.

Even after we could go home, we had to keep learning about the different assortment of pills, instructions and clinic appointments. But we never let it stop us from fulfilling responsibilities at home and work. 

Through all the phases of treatment and the different challenges that each brought, Jocelyn always grew stronger. As she entered her interim maintenance phase over the holidays, one of the more difficult periods of her treatment, I described it to my friends as brutal and I wasn’t the one going through treatment. At the time, we would stay at the hospital for three or four nights while we waited for the four cycles of high-dose chemotherapy to clear her system before going home. 

But the relief of finally returning home sours quickly. The treatment kicks in and starts hitting hard. I was not prepared for the reality that was: Go to hospital, get treatment, come home and watch Jocelyn weaken to the point where I would wake up and check that she was still breathing. But she always stayed strong.  

In the final months before reaching our goal phase, long-term maintenance, it was difficult for Jocelyn and challenging for us. Procedural anxiety alongside mental and physical strains followed us during every visit. But achieving long-term maintenance was all we were focused on. 

As we went through each phase, Kids Cancer Care was there for us. From the Pizza Nights where volunteers would serve pizza to exhausted and emotionally drained kids and parents, to the PEER exercise program where Jocelyn could blow off some steam and rebuild her strength through exercise. 

It was wonderful to see Jocelyn laugh, have fun and push herself with people who understood. It was not easy to convince her to go, especially when we’d already been at the hospital for hours of treatment, but she was always better for it. 

They also gave Jocelyn the opportunity to go to Camp Kindle. Although she was hesitant at first, she fondly remembers her time there and would love to do it again. She even told me that ‘Maybe someday, I can become a counsellor and help kids like me.’ 

With all the emotional and mental strain from the procedures, chemotherapies, scans and medical equipment, Jocelyn’s thoughts took a dive. She wondered what would happen with her friends and family if she didn’t make it. Jocelyn was scared to voice her thoughts because everyone was counting on her to make it through. She was isolated from her friends since she had a weak immune system and didn’t know if she would ever get back to her former life. That’s a lot for a kid to carry around inside.

Kids Cancer Care programs helped her feel like a normal kid. She was able to go to summer camp where she didn’t need to worry about getting sick. She was surrounded by amazing volunteers, nurses and kids who faced similar struggles. And she no longer felt disconnected. Kids Cancer Care helped Jocelyn work through all the struggles she faced so she can return to a normal life again. She is now part of the Teen Leadership Program and continues to grow every day. 

Earlier in Jocelyn’s treatment I discovered a charity cycling event called Tour for Kids – Alberta with proceeds going to Camp Kindle.  

As a cyclist, I was shocked that I’d never heard about this event and even more shocked that I registered despite adding 25 pounds of stress eating to my frame! But this was the least I could do to support Jocelyn and other kids battling cancer. I would train and finish this 300-kilometre ride, even if it killed me. If my baby girl could endure what she had, then I could do this ride. If my bike squealed in protest, so be it! 

I know what it’s like. You’re constantly bombarded with ‘please donate’ or ‘please sponsor’ from all corners and causes, but you STILL choose to give. 

Maybe in the back of our minds there is still a lingering fear: “it could happen to me or to someone I love” and god forbid cancer ever strike the heart of your world. 

But I promise you this: if that should happen, Kids Cancer Care will be there for you and your family. 

• Omar Pricca, Jocelyn’s dad 

When I was eight years old, I began experiencing unexplainable symptoms. After consulting every dermatologist in the city, my mom thought it might be a good idea to consult an immunologist as dermatologists were not helping. After what felt like thousands of pokes, hundreds of tests and too many hospital stays to count, it was determined through genetic testing that I had a rare gene mutation called TTC7A.

As it turns out, this specific mutation was only discovered a year prior to my diagnosis. I was the oldest living individual with TTC7A at the time, so I was pretty much a guinea pig when it came to treatment. This gene mutation affected my immune system so much that it was only working at seven per cent and could essentially give out at any moment. To find out more about TTC7A and a possible course of treatment, we traveled to Montreal and met with the doctor who discovered this mutation. He was in the process of a research study to find out more about TTC7A and requested that I be part of the study. His research determined that I would need a bone marrow transplant.

Now imagine being 15 years old and being told that you would have to undergo a bone marrow transplant and that you may not survive. Definitely not something the average 15-year-old would have to worry about.

Because of the complexity of my situation, we consulted centres across North America. It just so happened that the immunologist from Texas Children’s Hospital was in Calgary for a conference and I was able to have a short consultation with him. It was then that he recommended his center for the transplant. After careful consideration and a trip to Houston to meet the doctors, we made the decision to go to Texas Children’s Hospital to undergo this journey.

By May 2015, a month after consultation in Texas, my parents and I packed up our things, said goodbye to our family and friends, and headed to Houston. We arrived on Friday, unpacked our apartment and prepared for what was sure to be a long and difficult journey.

On Sunday night, I checked into the hospital so that I could begin chemotherapy the next morning. After 32 doses of chemo spread over eight days, I was given the okay to receive my new bone marrow cells. At 3:30 a.m. on June 23, 2015, I was re-born. I was given the chance at a full life. A life without month-long hospital stays, too many pokes to count and endless medications. My donor, who I did not know at the time, gave me the ability to not worry about getting sick, to not be self-conscious in the outside world and to live a normal life.

This was not to say that my journey ended there. As a result of numerous complications, I was not allowed to eat for three months. I was connected to multiple medications around the clock and had to receive two additional donations from the donor. I remained in isolation for 15 months where I spent up to five days a week at the hospital and had to undergo multiple bone marrow biopsies.

After 15 months, we were finally able to travel home. Once back in Calgary, it was flu season, so I was still not able to go out in public. This meant I was receiving my high school education at home while my friends were in school and I was not able to attend any parties or gatherings.

Fast forward six months, I was at the Alberta Children’s Hospital undergoing my usual monthly infusion and I was told about a Teen Leadership Program that Kids Cancer Care was offering. I was finally allowed to leave isolation and became interested in meeting some people who had gone through similar experiences. I felt alone for so long, therefore it took some convincing from my ever-loving parents. But after orientation, we felt the program would be a great fit for me. I was 18 at the time so I was only able to be a part of the program for a year, but I thoroughly enjoyed the time I spent with this group. It got me out of the house, I was able to socialize with people who could understand what I had experienced, and I no longer felt like an outsider. It was normal to have lost your hair and have a port in your chest. It was normal to know all the medical terms and to be best friends with your nurses. I think what resonated with me the most was the fact that people didn’t pity me when I told my story, the way that so many had before.

I spent the year getting to know the other teens, doing fundraisers and gaining my confidence back. Throughout my treatment I lost my way to loving myself. Being around the people in this group who accepted me for me, really helped to begin the process of self-love and acceptance. Although I was not able to participate in the final trip due to medical circumstances, I can honestly say it was a program that I will remember forever.

I was also asked to be a kid coach for the High Hopes Challenge and was able to help raise money for a cause close to my heart. Having spent only a day at Camp Kindle, I got to experience only a fraction of what other youth got to do over the course of the summer. Seeing how the camp was able to let kids be kids and allow them to forget about being sick was the most amazing part. The focus on fun and normalcy was evident in the attitudes of everyone in sight.

I am proud to say that I am coming up on my fifth anniversary of my transplant and doing better than ever. I still struggle with some lingering effects of my transplant; however, I am on my way to becoming my best self. I have learned over the years that I am not alone. I have a support system and I can openly tell my story. I no longer fear of the outside world and I can proudly say that I am a transplant survivor. I will always be grateful to those who helped me along my journey to become the oldest living individual with this gene mutation. The donor who donated the bone marrow not only gave me life, but gave me a second set of DNA…. How cool is that!?

“We’ve been in isolation, social distancing, for close to a year. Now with the threat of COVID-19, we’re even more cautious. And yet, in a strange and unexpected way, this pandemic is opening up the world to Mikah in a whole new way.” ~ Lina Dupuis

It was the week of Mikah’s grade-eight final exams when she started running a fever and complaining of a heaviness in her chest. After two visits to emergency, Mikah suddenly found herself in an ambulance, speeding towards the Alberta Children’s Hospital.

“There was an entourage of medical staff waiting for us when we arrived,” recalls Mikah’s mother Lina Dupuis. “I knew in that moment it was serious.” 

That evening, on June 23, 2019, Mikah was diagnosed with high-risk acute lymphoblastic leukemia. 

While undergoing harsh cancer treatments, Mikah is also experiencing the rarest of side effects — nerve and muscle weakness and brain swelling. Unable to walk, talk and even swallow, Mikah has endured long periods of recovery and rehabilitation. 

“The hardest pill for Mikah has been missing her first year of high school,” says Lina, explaining that in their district, high school begins in grade nine. “There’s the fear and anxiety of starting high school, but there’s also the excitement and independence. Mikah is missing all of that.”

Mikah wants so badly to go to Camp Kindle too, but each time she registers, a major side effect lands her in the hospital. And, just when she was starting to feel better, our spring Teen Camp was cancelled due to COVID-19. 

Fortunately, with your support, we are building a vibrant online community to help teens like Mikah and her sister Kya in their isolation. 

Shortly after COVID-19 was declared a pandemic, our exercise specialist Dr. Carolina Chamorro Vina began exploring innovative ways to deliver her PEER exercise program online. 

With your generous support, last March, Carolina offered our first-ever online exercise program for teens. 

“This program was so good for her,” says Lina. “There was even a little boy participating from his hospital bed. He may not have been able do everything, but he could see this amazing community. No judgement. No staring. Just a big community of kids who get it.”  

Mikah and her peers are now rebuilding their strength every Tuesday and Thursday through these virtual exercise classes. They love the sense of community the program offers. 

“The research is clear,” says Carolina. “Regular exercise helps mitigate the deconditioning effects of cancer treatments and helps reduce the long-term health problems associated with cancer treatments. It also improves mental and physical well-being.”  

While acknowledging that cancer and COVID-19 have brought suffering, Lina is quick to recognize their blessings: “All of these things are opening up for Mikah now. PEER online is giving her something to look forward to every week and a community she can connect with.”   

Thank you, Calgary Flames Foundation and other generous donors, for supporting our PEER exercise program.

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.

Davis was 10 years old when he was diagnosed with stage 4 neuroblastoma. Davis used to call March 8, 2006 “the stupidest day ever,” but it wasn’t the first time he’d been diagnosed and it wasn’t the first time he’d battled cancer. Davis just didn’t remember the first time because he was so young.

In October 1995, at three months, Davis was diagnosed with histiocytosis X and was treated with high-dose chemotherapy. When he was five months old we almost lost him. By the time Davis was 15 months, he was a happy healthy toddler and we gave him a little sister six days after his second birthday.

All was perfect in our world. Davis continued with yearly checkups in the oncology clinic. He was 10 years old now and his sister Jessie was eight. At the end of February, we took Davis and Jessie on a surprise trip to Disneyland. A couple of months before the Disney trip, Davis started complaining of leg pain, but our family doctor assured us it was just “growing pains” and that he would fine. Davis had just had a checkup at the oncology clinic in January, so we were convinced he was okay. His pain would come and go and I prayed he would be pain-free for the trip to Disneyland. Davis was such a trooper and insisted he was okay, but for five of the seven days in Disneyland, we rented a wheelchair for him. He tired quickly and just couldn’t walk properly.

The day after we returned home, I took Davis back to the oncology clinic. I knew they would get to the bottom of these “growing pains.” Three days later, after many scans and tests, on March 8, everything crashed. Davis had been healthy for nine years. Cancer was the last thing I expected to hear. I literally fell to the floor the moment the doctor shared the results. What is neuroblastoma? I couldn’t even pronounce it! My husband Brad was at work and Jessie was at school. Davis had fallen asleep in the waiting room, so a nurse had moved him to a bed somewhere. I sat on the floor in that tiny exam room and sobbed.

Brad arrived and we talked with the doctors, but I don’t remember a word that was spoken. I only had the word cancer swirling around in my head and this other strange word — neuroblastoma. We took Davis home and soon Jessie came home from school. The four of us sat in the living room and talked, and cried, and talked and cried some more. Davis really didn’t say too much when he learned what lay ahead, but I do remember him having a sense of relief. It was a relief to finally know that there was a very real reason for his leg pain and now he could be fixed.

The next day, Davis was admitted to the Alberta Children’s Hospital and our cancer journey began. Over the next 14 months, Davis fought hard and he did it with complete and total determination. Never once did he say, “Why me?” Never once did he complain about needles or taking yucky meds or not being able to go home. The first five months involved high-dose chemotherapy, then surgery to remove what was left of his tumour. The tumour was attached to his right adrenal gland, so that came out too. After recovering from surgery, it was time to prepare for his bone marrow transplants.

In July and August, Davis had more high-dose chemo and we celebrated his 11^th birthday in between two transplants. During those six months, Davis and I had spent far more nights in the children’s hospital than in our own beds at home. The longest stretch was 48 nights, sometimes with a day pass, but back in for the night. Davis would play bingo with the other kids in the unit via walkie-talkie. He mastered a lot of video games and we always watched The Ellen Show at four every afternoon. Sometimes we would sneak out (giggling) in the middle of the night with Davis holding onto his IV pole(s) and me speed-wheeling him through the deserted halls of the hospital at 3 AM. We definitely made our own fun!

Oh but there was a lot of ugly too. Davis dropped down to just under 60 pounds. He had a puke bucket within arm’s reach 24/7 and there was one chemo that required him to have a bath every four hours for five days because it burned his skin black and peeled off. It was a world of endless scans and procedures, bone biopsies, chemo, pokes, surgeries, sleepless nights, fear and uncertainty and many tears. I learned how to soundlessly sob myself to sleep every night. Davis could not handle me crying under any circumstance. He could be in a drug-induced sleep or barely out of a sedation and, if he heard one tiny sob come out of me, his eyes would fly open and he’d give me his stern look, “No crying Mum!”

Yes, there was a lot of ugly, but all through this he was still my sweet beautiful boy. We all had the drive and determination to do whatever it took to get our boy healthy again and our family back under one roof.

In September and October, Davis had 15 radiation treatments and then started maintenance medication. By November, he was doing great and back up to just over 100 pounds. Davis had completely missed the last few months of grade six and the first few months of grade seven. In December of 2006, 10 months after diagnosis, he was so happy to be able to go back to school for a few days here and there. He convinced his doctor to have his Broviac (port) removed. Five days before Christmas, out it came. He declared this to be, “The best Christmas present EVER!” In January 2007, he was back at school full-time and completely in remission. All was perfect again in our world.

A couple of months into Davis’s treatment we had learned about Kids Cancer Care. Camp was just starting up for the summer, Davis was far too sick to go anywhere, but Jessie was given the opportunity to go for a week. She said no! She refused to go without Davis and said she would just wait until they could go together when he was all better. In July 2007, that time finally arrived. We took them to the meeting place and off they went on the yellow school bus. I don’t think I slept a wink that week and I’m sure I bit off every one of my fingernails. I knew they were in good hands and Davis had all his meds with him. I didn’t know at the time, but that week at camp was the beginning of a new family for us — Kids Cancer Care.

When we picked them up a week later, Davis and Jess both talked non-stop about their camp adventures. They couldn’t wait to go back again. I remember asking Davis a few days later if he’d met any boys his age at camp, kids he could talk to about his cancer journey . He said, “Mum, at camp there is no cancer. We all know we’re the same, but we leave cancer at home and just have fun.” My wise-beyond-his-years little boy had just turned 12.

Over the next 17 months, we lived a normal happy life. Well, it was our new normal. There was still anxiety and fear, but we all worked together to combat these fears. As the weeks and months went by, we all learned to breathe a little easier. Davis was still having blood work done every few weeks and scans every three months, so with each good result, we were able to start putting the nightmare behind us.

They both went to camp again in the summer of 2008 and we enjoyed lots of other Kids Cancer Care programs and events in between. We had a new family of friends that just “got us” at a time when there was many others who could never truly understand what we had been through. All was good in our world. Little did we know what was to come.

At the end of September 2008, Davis suddenly had severe back pain and on October 2^nd our worse nightmare was confirmed. The dreaded beast was back. All these things came rushing back to us that we thought were locked up in the past forever. The cancer was back in his bone marrow. His knees and upper legs, shoulders and upper arms, and areas of his skull, were all infected. Davis was 13 and had just started grade eight. It was like living in a really bad dream, or maybe more like a reoccurring nightmare. He was mad as hell to be back in the fight, but he had a let’s-get-at-it attitude. Nothing was going to slow him down. He would do whatever it took to fight it, while fitting in all the fun stuff in between.

If this is how it was going to be for a while, then we had to adopt Davis’s attitude and look at the positives. Davis was loved by his nurses, doctors and caregivers in the hospital and they were all such wonderful and amazing people. Knowing everyone already made it a bit less scary for him. The fact that he pretty much knew what to expect made it a little easier as well.

Davis had surgery to have a port put in (no Broviac this time) and his treatment started. Five days of out-patient chemo, where he was hooked up for about seven hours a day in the hospital and then home for the night. Three weeks to get his blood counts back up and then another five days of chemo. By early November, his hair was gone again, but he looked forward to going to school because he was the only kid who was allowed to wear a hat in class.

His scans in December 2008 and, then in March of 2009, showed a bit of improvement, but the cancer was still there. June scans showed no improvement at all, so it was on to plan B. Davis’s body really needed a rest from the high-dose chemo he’d been on for the past nine months, so he went to low-dose oral VP-16 that he took at home. His scans started to improve again and we had a great summer. Both Davis and Jessie went back to summer camp and had a great time. Davis also went to Teen Camp in the spring and fall and just loved it. It’s such a magical place where he could be free of everything and just have fun.

We sailed along in our new normal for the next 11 months and Davis’s scans continued to improve. In January 2010, he had his port removed and he only had one tiny spot in his right groin area that was showing any disease. We were all doing the happy dance once again. He wasn’t NED (no evidence of disease) yet, so he stayed on the oral VP-16, but we just knew he would be cancer- and chemo-free soon.

It didn’t turn out that way. In April 2010, we crashed for the third time. Davis’s scan was not good and was showing new glowing areas of the beast. On to plan C with a combo chemo of Temozolomide and Irinotecan. They are both an oral chemo, so no need for a port this time. Davis was thrilled about not having a port put back in his chest, but really bummed when he lost his hair again, for the third time!

In June, his scans were unchanged. In July, he turned 15. Davis moved on to more new drugs and, in August, had his first MIBG therapy (radioactive infusions) at the Edmonton Cross Cancer Institute. His second therapy was in October, when more new glowing spots showed up in the results.

In September 2010, Davis started high school. In October, he was accepted into Kids Cancer Care’s Teen Leadership Program. He was so excited about it. Throughout the fall and winter the kids volunteer and organize fundraising events to pay for a volunteer service trip abroad. Davis’s teen group was to go to Mexico in March for five days and build homes for families in need. He was so happy to be accepted into this program and worked hard at his fundraising for the trip. Davis had good days, but there were more and more bad days, and by mid November, he wasn’t able to go to school anymore. More complications had arisen, including a large lump on his head. The CT scan revealed three new metastatic lesions on his skull. In early December, he had his third MIBG therapy in Edmonton, but it was mainly for pain control. The results were not good. Everything glowed.

Davis went on to have 10 radiation treatments on the back of his head, finishing three days before Christmas. He’d lost about 15 pounds in six weeks. January 2011, Davis had another five rounds of radiation on his brain stem and continued with different combinations of chemo. He’d lost the muscle in the right side of his face and slurred a bit. The hearing in his right ear was gone.

I was on the road of learning to accept things that were out of my control, but I don’t think I was quite there yet. I had learned the true meaning of hope and how I really needed to hold on to it. I was not going to give up or let go of hope, but I did need to learn to accept things as they happened.

At the end of February 2011, the Kids Cancer Care’s teen leadership group did a special fundraising event for their Mexico trip and tied it with the launch of the new Kids Cancer Care logo. Davis was to be their spokeskid for the media and fundraising event. He had written his speech, but he still wasn’t sure if he had the courage to get up on stage. He was very conscious of his drooping eye and mouth and was afraid no one would understand him because he couldn’t quite speak clearly. He received so much encouragement from all the other teens and I was beyond proud of him when he got up on stage and read his own words. The last line of his speech still echoes in my mind: “I don’t know what the future holds for me, or if I even have a future, but I do what I can, I keep pushing forward and I refuse to give up.”

Afterwards, he was mobbed by reporters in his first media scrum. Davis was on the news that night and in the Calgary Herald the next day. Here was our boy, fighting for his life, but was more concerned, and determined, to get to Mexico with his team and help build homes for families in need.

Just a few days before the trip, we realized there was no way Davis could go, he was far too weak. He came up with the idea that maybe Jessie could go for him. He was devastated, but I think a bit relieved as well. Jessie was just 13, at least two years younger than all the other teens, but she was determined to go and make her brother proud. Kids Cancer Care welcomed her with open arms and every night Jessie and the teens Skyped Davis from Mexico with updates on their daily activities. They included him in every way they could and he was so happy to still be part of the team.

Davis absolutely refused to give up. He was set on beating the cancer forever and living his life to the fullest. Our boy showed more determination than any 15-year-old boy could possibly have. On March 17^th we were told there was nothing more that could be done. Davis was so tired; he’d been fighting for five long years. No, he didn’t give up, but his body was failing him and he accepted his fate with grace. The only thing he was afraid of was being forgotten. We assured him that would NEVER happen. On March 26^th 2011, Davis passed away. He is forever 15. We love him and miss him every single day.

Davis has not been forgotten. After Jessie’s first service trip the Calgary Rotarians built a miniature house for Davis. When Davis passed away, Jessie returned it to Kids Cancer Care. Now every year, the Teen Leadership Program awards a teen, who has exhibited Davis’s strength of character and leadership, a Davis Weisner Award. That teen takes home the miniature Davis house for the year.

Our lives have forever changed trying to live each day without Davis. I can’t imagine where we would be without our Kids Cancer Care family, supporting and lifting us up these past eight and half years since Davis has been gone. Jessie continued with the Teen Leadership Program for the next four years and also went to summer and teen camp where she made life-long friends. She has done so many speeches for fundraisers and events over the years and, in 2015, she was a kid coach in the Kids Cancer Care High Hopes Challenge. Her passion for fundraising and spreading awareness for childhood cancer grows stronger all the time.

I truly believe in the old proverb, “It takes a village to raise a child,” and Kids Cancer Care has definitely been our village. They did, and have done, an incredible job for both of my children!

~ Davis’s mother Janine

“For a month leading up to the diagnosis, Lily had been complaining about soreness. After the first of several doctor visits, we were told it seemed like a muscle issue so we treated it with Tylenol and Advil. After a few more days without the pain subsiding, she was given muscle relaxers. Three days later, Lily and her father, Jeff, were in the ER at 11:00 PM getting an x-ray for sore knees. This was a girl who wasn’t ill very often and always very full of energy.  This wasn’t our Lily!

One night when Lily was trying to fall asleep, she looked up at me with the saddest face, crying, ‘What is wrong with me, Mom?!  I am in SOOOO much pain!’ I didn’t know what to do or to say, all I knew what that I wanted to make Lily feel better so I said, ‘Think of those poor kids in the cancer ward…they’re in a lot of pain. That is bad!’ Oh, how prophetic those words were!

After spending a listless Christmas holiday, Lily ended up back in the ER with sore wrists. She had lost 13 pounds in three weeks, so I also booked an appointment with our family doctor to get some further testing. The ER doctor ran some tests so that our family doctor would have Lily’s bloodwork at our next appointment. This was the first time Lily had to do bloodwork, which was pretty traumatic for a girl who didn’t love needles!

The next morning at work, a staff member said that my husband was waiting for me in the entryway of the school. That’s when I knew something was wrong. Jeff told me the gut-wrenching news that the doctors thought Lily had Leukemia and that we needed to go to the oncology clinic at the Alberta Children’s Hospital as soon as possible. I was numb! I immediately went into what I call ‘intense focus’ and tried to get everything I could in order. I remember shaking as I gave directions to my students, asking them to help whoever was going to cover my class. I then grabbed my other daughter Macy off the playground, picked up Lily from my Aunt’s house then headed straight to Calgary to the Children’s Hospital.

When we picked Lily up, she had a bazillion questions, ‘What’s wrong with me? Am I going to die? I’m scared!’ I kept trying to reassure her and told her that we would know as soon we talked to the doctors. She wasn’t aware of what oncology meant. She had no idea what was going to happen next. It was the longest hour drive of our lives. All I could do at that moment was reassure Lily, all while wondering how our lives were going to change. I texted our family and church family and asked them to pray for us.

Finally, we made it to the clinic and sat down. Lily looked around at the posters on the wall and noticed the word cancer. Fearfully, she looked up at me and said, ‘I HAVE CANCER… I AM GOING TO DIE AREN’T I MOM?!’ That was extremely difficult to hear. I continued to reassure her and told her we had to wait to hear from the doctor. I guess I was hoping it wasn’t going to be said.

As we sat in the examination room, Lily looked around at all the different signs. She underwent many tests, cuddled and cried as we waited for an answer. Much later, Lily confessed that while we were sitting there, she was writing her obituary in her head, dividing up all her possessions gathered in her 13 years of life.

Finally, Dr. Anderson and our primary nurse JoJo walked into the room. Our hearts stopped as he confirmed our worst fears. Lily did indeed have Leukemia… but it’s a type of Leukemia called Acute Lymphoblastic Leukemia (ALL) which the survival rate is 98%. With those statistics, I knew we had a fighting chance, and that ALL wasn’t a death sentence. Dr. Anderson reassured us that Lily didn’t have any other complications and that he felt very hopeful. All I could think of was all those Terry Fox runs I’d helped plan and how much money it raised for cancer research. I was so thankful that all that would help MY DAUGHTER! We can beat this cancer!

We moved to unit one and settled into our room. Lily was filling out the whiteboard with her personal information. When she got to the question, ‘Primary language spoken,’ she wrote ‘Pig Latin.’ I knew then that everything was going to be okay. After everything, Lily’s humour remained intact and that’s what was going to help us get through this. That night as we sat in our room Lily looked at me and said in her cheeky voice, ‘Remember Mom… what you said that night when I said I was in a lot of pain?’ I remembered. I gulped and answered, ‘Yes.’ Lily responded, ‘I guess I DO know how those kids in the cancer ward feel!’ We had a laugh and a cry over that!

The first eight days in the hospital, we met some amazing individuals. The first night, a student nurse distracted Lily by singing as she attempted to put in her IV multiple times. We were treated to Pizza Night and used our unlimited trips to the movie library as a way to help up get through the long sleepless nights.

We met with our social worker, Wendy, who took us through all of our questions and informed us about Kids Cancer Care. Lily met her Child Life Specialist Chantal, who played a vital role in her visits to the hospital. Chantal brought a bright energy to the room that Lily fed off of and the two of them made a strong connection. Once Chantal found out that Lily was into music, she connected her with a music specialist named Mark. Mark dropped off a full keyboard which gave Lily something different to do while we were there. We were surrounded by love on all sides.

My husband kept our family and friends informed while we were in the hospital. He drove back and forth to be with our other daughter, Macy. When I thought about Macy, sitting at home wondering what was going on, it made me cry. One night, when Macy was visiting and Lily had left the room, she asked me with tears in her eyes if her sister was going to die.

The first few days were a whirlwind, so many decisions needed to be made like, did we want a port? What was happening next in treatment? What happens after this first induction round? Lily had qualified to represent our zone in fencing at the Alberta Winter Games, who did I need to call for this to be cancelled? What about her planned school sailing trip in April? All of these questions were running through my head.

During our round table meeting, I remember sitting with Jeff as Lily’s case was introduced. It was mentioned that she was a high risk Leukemia patient and Jeff broke down crying. I handed him the Kleenex box as I stayed focused and listened to everything that was said about Lily’s case. It was like I was hyper-focused and had a God-given peace to take in everything that had to be learned.

There was so much support from family and friends who took time away from their scheduled activities to be with Macy, our dog Remy, to bring us food, give us hugs and many, many prayers. Coming home from the hospital was a mixed bag of emotions. I so wanted to be home but was scared to leave the security of the hospital staff knowing way more about this than I did. I finally broke down on my first trip to the pharmacy when the pharmacist asked why I was getting this prescription. I had to say it out loud, ‘My daughter has leukemia!‘ Those were hard words to say.

The next 10 months were full of treatment trips to the clinic. Lily lost so much of her muscle strength that she would collapse while trying to walk to the washroom from her bed. We had to use the wheelchair. I got a few looks from people when I jokingly dropped her off at the top of the parking lot and said to her, “Maybe I will come back and get you!” Lily would always try to look as pathetic as possible to make people ask if she needed help… just to rub it in when I went to park the vehicle. Our humour got us through that.

During the treatment, Lily had an allergic reaction to one of the chemo drugs. To see your child lose her ability to breath in less than three minutes was the scariest moment for me as a Mom. Her allergy caused us to change chemo drugs, which in turn meant instead of one fifteen-minute treatment, she had six treatments spread over 12 days. We got very familiar with the hour plus drive in rush hour traffic. Our trips to the hospital were made bearable by karaoke singing to many different musical soundtracks, choosing the most beautiful route to get to the hospital, and looking forward to what we were going to eat when Lily got home. After major milestones, the family was known to visit Red Lobster in celebration. Lily’s insatiable appetite, while on prednisone, wasn’t easy on the bank account, especially after seeing all the Lobsterfest advertisements!

After the first month of treatment, we were given the news that Lily hadn’t reached the remission stage yet, so this meant even more treatments. But after her second round, we learned that Lily had met the remission standard! I knew we had the possibility of a marrow transplant if she wasn’t in remission and that was one bridge I really didn’t want to cross. By this time, I was back at work and Lily and her Dad were at an overnight stay at the hospital, so she told me the great news over the phone. I was ecstatic, but when I hung up it really hit me. I just sobbed with relief. We could do this!

If there is such a thing as perfect timing for cancer, we had it with treatments over summer. Lily was not so immune-compromised, which meant she could attend a variety of summer fun activities such as summer camp, a friend’s wedding, visiting with grandparents and cousins and of course, going to see Les Miserables.

Kids Cancer Care has provided our daughters with many unique opportunities. Lily and Macy got to see pandas at the Calgary Zoo, which wouldn’t have happened otherwise because Lily can’t go to places that can compromise her immunity. Both girls went to Camp Kindle and had a great time meeting new friends, doing crafts, playing in the outdoors and sleeping at Sunseeker Lodge! Last November, we climbed aboard the Polar Express Train Ride in our PJs, another very memorable night.

Jeff and I even got to spend an evening with other parents at a Kids Cancer Care cooking event. It was a great opportunity to meet people who we’d recognize from the clinic but didn’t get to chance to talk to. All of us parents could speak the same language without needing to explain what it meant. These events have been a blessing to our family, a bit of normalcy in a not so normal life.

During her 11 months of treatment, Lily missed a lot of school due to her treatment schedules and low immunity.  The school was so generous and worked with us to make sure Lily was ready to start grade nine in the fall. They also made sure to schedule subjects in the first semester that was easier for her to do independently. Now that she’s back in school as full time as possible, Lily has realized how much she missed the interaction with other students and teachers. During the exam break, she was going to go to the school to study, even when she didn’t have to. Lily was very blessed to not have any trouble in her academic pursuits due to treatment and has maintained her great marks.

On December 23, 2018, we officially started our two-year maintenance phase of treatment. This means we will be taking chemo pills daily at home and doing monthly visits to the hospital for IV chemo. The road is long but at least the prognosis is good. We’ve felt the love and support of many amazing people, friends from before and those we’ve met since January 18, 2018. For these reasons and the many amazing things that have come from this journey, I feel blessed.”

~ Michelle, Lily’s Mom

“When Laura was seven and had just started grade three, she started having problems reading her home reading. Like most parents, we thought that Laura needed eyeglasses. After work on Thursday, Sept. 17, 2015, we took her for an eye exam. The eye doctor was concerned with a flicker that he had noticed on Laura’s left eye so he made a referral to a colleague at the eye clinic at the Foothills Hospital. Because of Laura’s age, we were able to see the specialist the next morning.

After a very hard and long morning at the hospital, the eye specialist wanted Laura to have an MRI at the Alberta Children’s Hospital. It seemed like we were there within minutes. Lots of doctors came in to see Laura and she was asked to complete many neurological tests which she passed without problems. Within an hour of going to the Alberta Children’s Hospital, Laura went for her first MRI.

The results of the MRI were heart stopping. The vibrant and energetic girl who had passed all of the neurological tests had a tumour behind her eyes. Within minutes of the MRI being completed, a neurosurgeon told us that Laura needed a tube in her head or else she would not make it. The tumour was stopping the flow of her brain fluid so the tube was needed to stabilize her.

Less than 24 hours since her eye doctor found the flicker in her eye, Laura was whisked away to have her first brain surgery. It was crazy to think that she needed such a procedure. While Laura was being wheeled into surgery she was chatting to the neurosurgeon and nurses about where she had recently gotten her toe nails done.

When Laura emerged from her first neurosurgery she had limited sight. It was hard for us to support her with this limitation. Laura went into the surgery only struggling to read, now she was struggling to see things. Laura’s surgery was on a Friday afternoon so she recovered over the weekend while the doctors started to plan out her second neurosurgery. They needed to find out more about her tumour so they could determine the best treatment plan.

Laura who is usually a happy little girl was not thrilled about the tube in her head or that she had to stay at the hospital. Laura cried a couple of times while asking the nurses to let her go back to school. The staff remarked a number of times that even when Laura was sad she would use her manners when she spoke to them. As the weekend rolled by, Laura’s spirits raised and she started to be her happy and bubbly self again.

On Tuesday, Sept. 22, Laura went in for her big neurosurgery. The doctor was going to take a biopsy of the tumour so that a treatment plan could be created. It was the worst day of our lives. The surgery took most of the day. We were not given any rates on outcomes of her tumour or her surgery. We kissed Laura as she was wheeled into surgery not knowing if our daughter would come back to us.

When Laura woke up she could not see anything. As she woke up more Laura asked me “when do I get my dog?” I told her that her dog was at home and that when she came home he would be there for her. She replied, “No mommy, I get a special dog now. We learned about them in grade one.” At that moment I knew that Laura was fine. She had come through this surgery and she was going to be just fine.

Over the next week Laura remained in the hospital recovering from this major surgery. From the biopsy we found out that Laura has Pilocytic Astrocytoma. When we were told this we had no clue what the doctors were saying. What we found out was that this tumour was a slow growing tumour that had been there for some time. The doctors told us that the treatment plan was going to be chemotherapy. Up until that point I had never thought of the situation as being cancer. It was a lot to take in. My baby has cancer. Cancer in her brain!

The chemo plan was not as easy as just starting with the drugs. Laura had to go in for a third surgery. This time the doctors had to insert a port where her chemo would be administered. Once everything was in place Laura started her yearlong chemo treatment plan. This plan did not please Laura because it meant a year of being poked in the chest and hours at the hospital. All Laura wanted was to return to school and be with her friends.

Due to Laura’s vision impairment and heavy chemo schedule, she was unable to return to school. Laura was exhausted and still healing from three surgeries; not to mention all of the follow up appointments and MRI’s she needed. These busy months gave Laura’s school time to prepare for her return.

On top of all of the doctor’s appointments and chemo, Laura was learning to function with very little sight. Laura could only see some general colours and blobby shapes. She needed to learn how to function in the world being blind. In December 2015, just before her eighth birthday, Laura received her first white cane. Thankfully Laura took to using it instantly and was able to walk around and explore like any other child.

Laura returned to school part-time in January 2016. At this time her chemo treatments had reduced from weekly to monthly. Laura was happy about the increased breaks from being poked and had an increase in energy. Laura would need the extra energy to start learning Braille.

In February 2016, we finally got some fantastic news! The last MRI had shown a significant shrinkage in Laura’s tumour! It was the best news we had received in months! Laura was thrilled! All the pokes had made a difference though she still hated them. The rest of the year became a routine of monthly visits to oncology with lots of follow ups from her new eye doctor, endocrinologist and MRI’s every three months. Throughout the rest of the chemo treatment we didn’t see any further reduction in her tumour. As the year went on Laura started to get sick from one of her chemo medications. She was able to get through 12 out of the 13 treatments before having too much of a reaction to the drug.

In October 2016, the doctors reported that Laura had done amazing and that she would now only be monitored by oncology and MRI’s. Laura was thrilled, no more chemo! The following year went well. Laura felt great and was able to get back into some normal childhood activities, of course they were modified for the blind.

In October 2017, Laura went in for a routine MRI. When we went into her follow up appointment to see how things were going, we were told that all is stable and that the tumour looked the same as her last MRI which was three months prior. We asked if they could compare the recent MRI pictures with her MRI from a year ago. A couple of days later I received a phone call from Laura’s oncologist. She explained that she had taken Laura’s scans to the cancer panel to see what they thought. She reported that it looked like Laura’s tumour had become thicker and there was some debate as to whether or not it was any bigger.

The oncologist explained that the panel wanted to preserve what sight Laura had and that they were recommending another round of chemo. We agreed wholeheartedly. She began her second chemo treatment almost a whole year after she finished her first treatment.

Laura was not happy and she did not want to give up her hobbies and school activities for more chemo. She was in the school play and needed to go to the rehearsals. Additionally, she had also started raising money for the Canadian National Institute for the Blind’s guide dog program. She did not want to stop her crafting or selling her crafts. “People need guide dogs mommy.” With the help of Laura’s amazing primary nurse who helped schedule things, Laura was able to perform in the school play and she managed to raise over $1000 for the guide dog program.

Laura did not tolerate her new chemo treatment as well as her initial treatment. Laura started to lose her hair and she found herself more exhausted than she had ever been. In February 2018 we found out that Laura had little nodules showing up on her scans. The doctors were unsure of what they were looking at and they didn’t know if it was connected to the tumour. Things became clearer in April when they found that the nodules were connected to her tumour. It was terrifying to know that her tumour had really reared its head again!

Given the results of the MRI, the oncologist recommended a change in her chemo treatment. Laura had been on the therapy for months and the tumour was growing. We started the third treatment plan in May. Laura was excited because this was an oral treatment. Unfortunately, Laura ended up with even more side-effects on this third treatment plan. Laura was happy that her hair was thickening and growing back. However, in August she ended up with a minor toe infection. This toe infection slowly grew and spread and by September 2018, the infection became too much and Laura was hospitalized to get control over the infection.

Laura was now in grade six and she was not happy about missing school, especially because she missed band and Laura loves to play her flute. That is one thing that I can say about Laura, she does not let her blindness slow her down. We are pleased that Laura has had the opportunity to participate in many activities with Kids Cancer Care such as the panda brunch and attending camp programs. In October 2018, Laura was placed on her fourth chemo treatment plan. This is the plan that she is currently on today. On December 31, 2018, we received some amazing news. Laura’s tumour had shrunk! The year of growth was over! She is now attending school full time but misses’ classes for chemo treatments and other appointments. We are looking forward to 2019 being another year where Laura is able to beat back her tumour!”

~ Jennifer, Laura the Superstar’s Mom

Laura’s photo album