Jessica’s story

“She is clothed with strength and dignity, and she laughs without fear of the future”
Proverbs 31:25

Jessica is my daughter and also my superhero. She even has a superhero alter ego: BatBaby. Her superhero powers are strength, courage, and love.

Names are pretty meaningful for Jessica. As we drove to the hospital on the morning of her birth, I googled the meaning of the names we had shortlisted, and saw that Jessica meant “a gift from God”. This baby was indeed a gift as it was a miracle that we were even pregnant in the first place. We also knew that our baby had a mass in her brain, so my hope was that the meaning of the name Jessica would help to ensure her survival. Because when you give a gift, you don’t ask for it back.

What had been a textbook pregnancy, very quickly turned into the stuff of nightmares in the final month. At a routine ultrasound at eight months, we were told that there appeared to be something in the brain that hadn’t been there four weeks earlier. We met with the doctor afterwards and were told that it could be many different things. The only way of knowing more was for me to have a fetal MRI. An appointment was made for me to go to the Alberta Children’s Hospital for this to be undertaken.

As the days passed and the shock started to subside, I very quickly learnt that I had to stop asking “Why?” There were no answers to any questions that started with that word and I was going to very quickly drive myself insane if I kept asking them. I set out my intentions from that point on. I had no way of knowing what was going to happen, but what I did know was that I had to be strong for my baby and to focus on a positive outcome. Nobody knew where this path was going to take us, and so I had to keep my head and my heart filled with hope. I knew this baby had already beaten the odds to be here. She was a fighter. Her Ninja-like movements in my tummy confirmed this on a daily basis!

The fetal MRI ruled out quite a lot of things but it still didn’t give us any answers. Oddly enough, cancer was never mentioned to us. I tried to just focus on what we did know (which was not a lot) rather than on what we didn’t. Although thoughts of cancer had lingered since the ultrasound, I had tried so hard not to give my negative thoughts and fears any power. It was felt that it was in the baby’s best interest to be delivered by C-section. I was told to be prepared that my baby would have to have an MRI very soon after birth and may also have to be taken to the Neonatal Intensive Care Unit (NICU) following assessments. Nobody knew what to expect at all.

On July 7th, 2015, Jessica arrived in the world at 9.36 am. As they brought her round for me to see her, my heart just soared that she was finally here and that she was deemed healthy enough to be able to stay with me. She was the most beautiful baby girl that I have ever seen and she instantly captured my heart.

The next day, she was taken in for an MRI. As I walked through the corridors of the hospital, my heart sank as we turned a corner and I saw a sign saying Tom Baker Cancer Centre. As I sat at the foot of the MRI machine and watched my one-day-old baby girl be tightly swaddled up and strapped into a support, I was filled with so much love and admiration for her. The technician gave her a soother to suck on. As she was moved back into the machine, all I could see was this orange soother going up and down just like Maggie Simpson. She took it all in her stride.

Unfortunately, the MRI didn’t bring good news. The doctor informed us later that day that it did appear to be a tumour. He wanted more detailed imaging, and so for the second time that day, Jessica was taken for another MRI. This time though they had to put an IV in her hand in which they injected a contrast dye.

The following day we were discharged with a follow-up appointment scheduled a few days later with an oncologist at the Alberta Children’s Hospital. As we started to gather our things together we were visited by two doctors who both said things to me that day that gave me the courage and the perspective that I needed to navigate the road ahead. Firstly, the doctor who discharged Jessica said to me, “Right now she is healthy. Enjoy her.” I understood what she was saying. I needed to live in the moment and to make it as beautiful as I could. Tomorrow isn’t guaranteed for anybody. If the worst was ever to happen, I needed to ensure that there was a lifetime of beautiful memories to hold on to. Every day had to be treated for the precious gift that it was. We were then visited by a neurosurgeon who assured us that they were going to monitor Jessica so closely that they would see what was happening with the mass before it could affect her. We were so grateful that whatever this was had been detected so early on and that there was a medical team on top of things. I instinctively knew that she was in the best hands and his words that day enabled us in that moment to focus on just being Jessica’s mommy and daddy. We felt safe and confident in taking her home.

The next few weeks were filled with visits to the children’s hospital. It was hoped that the tumour was benign and that Jessica would grow quicker than it would, but until such time that a biopsy could be performed, we would not know for certain what exactly we were dealing with. We were made aware of what to look out for that would indicate any growth and we tried our best to not be crippled with anxiety.

In the meantime though, Jessica was the most contented and laid back baby who adored snuggles. She fit into our family life with ease and rarely cried. Even when she woke during the night for feeds, she would just lie there until you picked her up and would then go straight back to sleep again after. She appeared so healthy.

Our bubble was very soon about to burst though. After a routine MRI at six weeks, I received a phone call from our primary nurse telling me that the tumour had doubled in size and basically our only option now was surgery. My head was spinning. Suddenly, what had started to feel like ‘normal’ family life, was turned upside down. I was being told that my six-week-old baby urgently required brain surgery.

We met with her neurosurgeon the following morning and he informed us that his intention was to remove the whole tumour, but if she started to lose a lot of blood, which was highly likely, then he would stop and just perform a biopsy. We sat in that room hanging on to every word that he said about what would be the best outcome and what would be the very worst. It was terrifying and surreal, but we had no choice except to sign the consent forms and to put our complete faith in these people, because this was now our only hope.

The evening before Jessica’s surgery, I held her all night long, committing to memory every detail on her face and how she felt in my arms. The next day, at just seven weeks of age, we hugged and kissed our baby girl and told her we loved her as we struggled to hand her over to her neurosurgeon, at the same time praying that he would be handing her back to us again.

After what felt like an eternity, Jessica’s doctor walked into the room and told us that the operation had been a success. He had performed a total resection. When we arrived in the Paediatric Intensive Care Unit (PICU) and saw Jessica, I was shocked at what I saw. Jessica was hooked up to so many machines and looked gravely ill. She looked so unhealthy and it forced me to face my fears. Although still undiagnosed at this point, I knew I was witnessing firsthand the effects of cancer and what we were up against. I realised there and then that there was a very strong possibility that Jessica could actually die.

Jessica struggled with pain for several days following her surgery. After a few days though she had improved enough to be moved up to the unit, but following a seizure, a Code Blue was called. That was one of the most terrifying moments of my life. Hearing all the alarms sounding and seeing the room rapidly fill with so many people, I just felt so helpless as I stood there watching them working on my baby girl, terrified that we were losing her. She was stabilised and taken back down to the PICU where she stayed for a few more days.

Once back on the unit again we had a visit from her oncologist who told us that initial pathology results were back, and that the tumour was malignant but that further testing was required to determine the exact diagnosis. Even though by this point I already knew it was cancer, hearing those actual words spoken was like a knife to my heart.

It took four weeks for the exact diagnosis to come back. It was a congenital glioblastoma multiforme, which is extremely rare in babies. So rare that less than 60 babies worldwide have been born with it. It was recommended that Jessica have between six to ten cycles of chemotherapy. This was based on research published in 2012 where four babies had all responded successfully to two different drugs following their surgeries. Her doctors intention was to cure. They say that hope is the oxygen of the human spirit and so we held on to that hope as tightly as we could.

To be asked to consent for our baby to be given chemotherapy, whilst albeit a straightforward decision in the sense that this was the only chance of survival that Jessica had at this point, was still a decision that tore our hearts apart. We were allowing our daughter to have toxic drugs pumped into her tiny, precious body. Drugs that are so harsh, nurses wear protective clothing just to carry them into the room. Such is the strength of the drugs required to fight cancer. We were frightened and overwhelmed. We had no idea what to expect or how we would protect her whilst she was immune compromised.

Jessica was admitted to the pediatric cancer unit, Unit One in September 2015 where she underwent another surgery to have a Broviac central line inserted into her chest through which the chemo would be administered. Whilst under general anaesthetic, Jessica also had another MRI and a lumbar puncture, which both came back clear. Her first chemo happened the next day. It was so hard to watch. I had so many feelings of guilt for putting Jessica through it, but I had to believe that this was her best chance for survival and that we were allowing her the ability to fight this. Jessica would be admitted every four weeks for her chemo which would take place over three days. We were told to be prepared for hospitalisations in between as she would likely pick up infections. We were also trained in what to do should her central line break. How they got us to leave the safety of the hospital after that first admission I will never know.

None of the subsequent chemo cycles were any easier. Every time she was admitted, I would cry for what was to come. What made it even harder was the fact that Jessica was a baby and couldn’t tell me how she was feeling. I was scared that I wasn’t advocating enough for her. I knew that the drugs made her feel nauseous because her feeding dropped off almost immediately and she would throw up for several days after. She never looked ill though. In fact, she appeared so healthy and smiled her way through every cycle even though her eyes conveyed to me how hard it actually was for her. She never lost her hair and was hitting all of her developmental milestones. She astounded everyone. I have no idea how she did it, but she always seemed to bounce back so well. It was as though she was saying “OK, that’s another one done! Bring on the next one!” Her strength and endurance were remarkable, beyond anything that I have ever witnessed in my life.

At her clinic appointment for her sixth chemo cycle, we were told that if we were happy for this to be her final cycle, then so too was her medical team. To say we were shocked was an understatement. Although we knew that she had been prescribed between six to ten cycles, we never knew from one cycle to the next exactly how many she would have. During that admission we had many long discussions with her doctor and primary nurse. It was one of the hardest decisions we have ever had to make. We went back and forth, but ultimately we felt that we had to look at this with logical minds. We couldn’t continue to put these drugs into her body if she no longer required them. We had always put our complete faith and trust in Jessica’s team and we knew that her doctor would never offer this to us if he wasn’t confident himself. The babies, on which her treatment protocol was based, were all cured. After much soul searching, we finally agreed that this would be Jessica’s final chemo cycle. Jessica wore a BatBaby onesie during that admission that said “Stay Calm, I Got This.” It was as though she was giving us her consent.

One month later, a routine MRI came back clear, with the exception of a cyst that had been growing in her ventricle since December 2015. Her doctors weren’t too concerned though as its growth had been slow, so they were just continuing to monitor it.

Just three weeks later, on April 5th, 2016, we filmed a dressing change on Jessica’s central line which was scheduled to be removed the following week. We wanted to show her when she was older how amazing she did during dressing changes. Even nurses would comment how calm she was. She would just lie there smiling up at us and would usually giggle when we pulled the dressing off. As we put Jessica to bed that night she was her normal, happy little self. We had no idea of the horror that awaited us.

Early the next morning, Jessica woke up crying and was inconsolable. She then began to throw up and started choking. We called 911 and were taken to the children’s hospital. As I held her in my arms on the way to the hospital, her heart rate was slowly starting to drop. By the time we arrived she was unconscious. I was convinced it was the cyst that had grown, but as her oncologist and primary nurse arrived in the emergency room and stood in the doorway, I could tell by the look on their faces that there was more to this.

Jessica was taken for an MRI and we did our best to try and stay positive. Eventually our pager buzzed telling us to return to the MRI department. As the doors opened, Jessica’s doctor stood there with tears in his eyes and said, “I’m so sorry. The cancer’s come back”. The tumour had grown so fast it had hemorrhaged. They had already intubated her in preparation for any surgery and she was taken to the PICU where we waited for her neurosurgeon to join us.

We were told that it was a mess inside her brain. Her doctor was prepared to operate if we agreed, but we were told that should the cancer return, then he wouldn’t be able to do so again. Our hearts were breaking as we had to quickly decide our baby girl’s fate. Having to make an informed decision within minutes, all whilst in a complete state of shock and highly emotional, was absolute torture. What I did know though was that I couldn’t give up on Jessica. She had fought so hard to be with us that I just knew in my heart she wasn’t ready to go anywhere. She was still here and she was fighting. Struggling with our emotions and the enormity of the situation that we now found ourselves in, we signed the paperwork, and once again in the space of only a few months, we hugged and kissed Jessica and told her how much we loved her as she was taken away for brain surgery. She was just one day shy of turning nine months old.

Jessica made it through her surgery, but this time her doctor was only able to perform a partial resection. As I looked at my baby girl lying there in the huge crib with all of these machines monitoring her, intubated and with a drain coming out of her head, my heart was broken and I felt so defeated. I couldn’t believe that we were back in this position again. We had been so convinced that she was finally on the path to remission.

The pain was more intense this time for her and it took a lot longer to get under control. It was so hard to see her struggle so much. The energy in the PICU was unlike anywhere else in the hospital. Life and death hang in the balance and your senses are constantly under attack. Everything I saw, heard and felt in there are forever seared into my soul. Those feelings of fear and being so lost and powerless to help Jessica as we lived from moment to moment will haunt me forever.

Knowing how aggressive Jessica’s tumour was, her doctor started chemotherapy a week later. The new protocol consisted this time of three different drugs, one of which was an oral one that we were trained to administer. She also started a formula-based ketogenic diet. We were told that they weren’t as hopeful this time around, but wherever there was hope, we all grabbed it with both hands. In all honesty, they could have told me that she only had a one percent chance of survival, but I once read that if you’re in that one per cent, of which somebody has to be for that figure to exist, then you have a 100% chance of survival. It was that simple in my head. If Jessica could be so brave and strong, then I owed it to her to put on my positive pants and fight alongside her.

This particular hospital admission lasted five weeks because Jessica caught an infection. The drugs were a lot tougher on her little body and completely wiped out her immune system and made her throw up more. She even started to lose her hair which I found so hard to accept. I knew that babies could be bald, but now Jessica looked like she had cancer. Every day I had a visual reminder of what we were up against and it terrified me. Remarkably though, Jessica still continued to greet everyone who came her way with the most beautiful smiles and took everything in her stride. Doctors and nurses were always allowed to perform whatever tests they wanted to so long as they shared their medical ‘toys’ with her. Her very favourite was her orange syringe, which went everywhere with her! Even in all of this darkness, Jessica could still see light and find rainbows. She brought her own sunshine and it was so inspiring to watch.

After Jessica’s relapse her cancer just never gave her a break and following another partial seizure, an MRI confirmed that there were now multiple tumours growing in her brain. We were absolutely devastated. Jessica was now eligible for clinical trials, albeit a limited number of them because she still wasn’t yet one year old. Her tumour was also being tested for certain markers, that if present, she would be able to try a new drug being trialled at the Hospital for Sick Kids, which was showing positive results. We were also told that radiation was another possibility, but because of her age, this would cause brain damage. Our heads and hearts were all over the place.

However, during the following meetings we had with her medical team, many of the different options that had been presented to us became unsuitable for one reason or another. All that we were eventually left with was radiation and we were all struggling to commit to putting her through this. I remember saying to her doctor though, “She’s not ready to go yet. She hasn’t done what she came here to do.” On some level, I already knew the reality that we were now facing, but Jessica was still fighting hard, so I had to stay focused on helping her to achieve her purpose, whatever that was going to be. Somehow though, I just knew that she was guiding me towards it.

Late one Sunday afternoon in June, Jessica started throwing up. She was sat on my husband Kevin’s knee making no sounds or movement and was just limp and lethargic as she was vomiting. We went straight to the hospital and were admitted. Her nurse brought in some medication including a steroid. I knew that they were trying to reduce any swelling in her brain caused by the tumours.

Jessica responded well to the medication and on June 28th, our son had his preschool graduation ceremony. Jessica had had her MRI first thing that morning and we were given an overnight pass along with 24 hours’ worth of medication so that we could enjoy Jake’s graduation together as a family. It was a wonderful day and afterwards we took Jake to his favourite restaurant for dinner. As we were leaving we got a call from Jessica’s primary nurse. We already knew that the MRI wasn’t good as they had received a preliminary report before we left the hospital. However, the full report was now back. The tumours were now huge. We were told that all the medication that they had given us to give to Jessica throughout the night needed to be given to her immediately in one dose to keep her safe. We were in a complete state of shock. Neither of us said anything to each other but we knew we were on the precipice of facing our worst nightmare.

Up until that point, Jessica had slept every night in her crib in our room because I was terrified of her having seizures. I knew though that she needed to spend the night in her own room. We moved her crib in there and put an inflatable mattress on the floor which my hubby, son and I all slept on. When the alarm went off the next morning to go back to the Alberta Children’s Hospital my heart sank. I knew that Jessica had just spent her last night at home with us.

We arrived back on the unit and met with Jessica’s doctor that afternoon. I was dreading hearing the words come out of his mouth and was desperately trying to prevent an anxiety attack from escalating. With tears in his eyes he told us there was nothing more that they could do for her. The tumours had grown so large that radiation was not even an option anymore due to the initial swelling it would create. We were all in agreement that Jessica should be allowed the dignity of being able to peacefully pass away in our arms. Everyone was in shock, because aside from her recent vomiting episode, Jessica had been, and still was, presenting so well which belied just how bad the imaging was. They predicted that she had one to two weeks left.

We were absolutely devastated as we tried to get our heads around the fact that our daughter was going to die very soon. Immediately after that meeting though, there was a visible shift in Jessica’s demeanour. It was almost as though she had been waiting for us to be told that she was terminal. I could see it in her eyes and in her smile, just some sense of knowing. Only now did she allow herself to rest. Such was the incredible amount of love that she had for us. Despite our devastation though, we were filled with gratitude for the time that her team, our hospital family, had given us with her. We asked if we could remain on the unit with them as these were the people who had been with Jessica from birth. They had supported us through every joyous and every heartbreaking moment of her journey. She was as much their baby as she was ours. We were determined that Jessica’s final days were going to be filled with the same amount of love, laughter and positivity that she had known all her life and everyone rallied around her. She made it to her first birthday and she was treated like a princess.

Jessica continued to astound everyone with her incredible strength and fighting spirit. However, it was becoming evident that the tumours were growing, and as a result, her pain was intensifying. We noticed though that if we held her during the night, the duration between her requiring extra shots of pain medication extended and she was more settled. From then on, Jessica was held in our arms 24/7. Proof of the power of love and her awareness of us because she would only allow either Kevin or myself to hold her by this point.

On the evening of July 16^th, after what had been a very peaceful day for Jessica, she suddenly screamed out in pain. We called for her nurse and within moments of her receiving an extra dose of pain medication, Jessica fell silent and limp in my arms. I was holding her against me and couldn’t see her face. As fear crept through my body, I asked her nurse if she was still with us, as we all stood there in shock. This wasn’t supposed to be how it would happen, with no warning whatsoever. As the nurse put a stethoscope against her back, Jessica took a big gasp of air and then visibly started breathing again.

After the nurse left the room, I was left alone with Jessica for a few moments. I was still stood up, cradling her in my arms as I gently rocked her in a desperate attempt to somehow be able to soothe my baby girl. Tears were streaming down my face as I realised how close we’d just come to losing her. As I looked down at her beautiful, chubby little face, she gave me the most precious gift possible. She opened her eyes. She was staring right at me with those gorgeous blue eyes. The last time that I had seen them, which was days before because of how heavily sedated she now was, they were affected by the pressure from her tumours, but right now, they were perfect, and she was looking straight at me. I knew that she was telling me that it was time and was asking me to let her go, because up until that moment, I hadn’t been able to do so. Jessica had waited for me to be ready. She was giving me the gift of being able to say goodbye to each other. Time momentarily seemed to stand still as I stood there looking into her eyes, the windows to her soul, and told her what she needed to hear me say.

There was a sense of peace that descended upon Jessica’s room that night. I read to her what I knew was going to be her last bedtime story and I held her tightly all night long, once again, taking in every detail of her face and how she felt in my arms, as we edged closer and closer towards the moment that I had desperately hoped would never happen.

The next day, July 17th, 2016, after the most graceful and courageous fight, Jessica took her final breath, and a piece of our hearts, as she passed away in my arms. Kevin had said that as I had been the one who brought her into this world, I should also be the one holding her as she left it.

We had already consented to donate Jessica’s tumours to research. There was no doubt in my mind that this was part of Jessica’s purpose. What was harder to wrap my head around was that there was a limited window of opportunity for them to remove her tumours after she had passed in order for them to be viable. We therefore allowed them to take Jessica from us quite quickly after she had died so as to maximise their chances of growing a cell line. It was incredibly hard to have to prepare her so soon after she had passed, but knowing that she was going to be that stepping stone in cancer research, so that hopefully one day, in the not too distant future, no family ever has to endure the heartbreak of saying goodbye to their child, spurred us on. Their fight is now also our fight, alongside the incredible research doctors working with Jessica’s donation. Thankfully, the researchers were able to create a cell line which is now classed as established, which basically means that it will now live in the lab forever. It’s believed that it is currently the only one in the world for this tumour type.

Throughout Jessica’s life we were always supported by Kids Cancer Care. We were given home cooked meals to help ease the strain of hospital life and I always looked forward to their Pizza Night on the unit. It was such a welcome break from the hospital cafeteria and also allowed me a respite as I chatted briefly with the volunteers, all of whom have had children diagnosed with cancer. Even now Kids Cancer Care continues to support our family and they always ensure that we get the opportunities to heal our hearts and to honour Jessica through their Time to Remember evening for bereaved families and at their Bereaved Family Camp at Camp Kindle. On this special weekend each year, we get to just switch off and enjoy the beautiful surroundings and fun activities. We’re also given so many wonderful opportunities to create lots of special family time with Jake such as watching the Calgary Hitmen, attending the Kids Cancer Care Halloween Howler, and probably Jake’s most favourite experience: riding the Polar Express at Aspen Crossing. Jake also gets to spend a whole week at summer camp surrounded by fun, kind and dedicated people who understand what he has been through. The volunteers and staff that we have had the pleasure of meeting at Kids Cancer Care are just incredible and we are so grateful for them. We are also so grateful to all the generous donors who make it possible for them to support families like us during the toughest and darkest period in our lives.

It’s been two years since we said goodbye to Jessica and the scars from this journey haven’t faded. Once you’ve walked this path you can never un-see or un-hear the horrors of childhood cancer. It still hurts more than I could ever say. My arms and my heart ache for Jessica and not a day goes by that I don’t think about her, but I carry her in my heart and I know that she will always be with me. Jessica is more than her diagnosis though and more than her death. Cancer does not define her. Jessica is one of the most amazing and inspirational people I have ever met who taught us so much about life and love. Although my arms feel empty, my heart is so full. I’m so blessed that she chose me to be her momma. Her love and light shine so bright still and she inspires me to try and live my life by the example she led. She was our cheerleader throughout everything, constantly lifting us and showing us what the important things in life truly are. She will forever be my mischievous little monkey who enjoyed tormenting her brother, but who also worshipped the ground that he walked on; for the snuggles that she gave; for the beautiful smiles that lit up the room and her big, blue eyes that twinkled; for her strength and determination; for the lessons she taught us; and for the gift that she left to this world, the chance to find a cure. Donations to Kids Cancer Care actively help to advance new research, so from the bottom of our hearts, thank you Kids Cancer Care and your donors for helping to keep Jessica’s legacy and hope for other families alive.

Although we live in fear of another tragedy striking (because when that rare occurrence has happened to you, no amount of reasoning can calm your mind anymore), we are incredibly blessed and grateful to have had a whole year and ten days with Jessica. Time gifted to us through the knowledge and expertise of our hospital family, through the power of medical research and the charities and donors who support them, and through the bravery of the families who consented to allow their babies to shape the research that Jessica’s first chemo protocol was based upon. Because of all these individuals, Jessica is forever fully woven into the fabric of our family and all of our traditions. Each and every person made a world of difference to our lives. What pulls us through the pain is love. Our love for each other and for Jessica. We are trying to live our lives with the same grace, gratitude and zest that Jessica did. To live in a way that honours and celebrates her and enables her love and light to be passed on to others and for us to be able to pay forward all the support and kindness shown to us. Every day, just as we did throughout Jessica’s life, we try to choose love and hope over anger and fear. To allow our thoughts, words and actions to come from that place of love where we now carry Jessica in our hearts. And because Jessica is in our hearts, love is our superpower too!

– Lynsday Heaton, Jessica’s momma

You can help save the next Jessica. When you make a gift today, you can help save a child’s life as researchers work to find new and less toxic childhood cancer treatments. Click here to donate.

Most of you reading this probably know at least one person, whose life has been affected by cancer. It might be your uncle, your sister, a friend, a grandparent, someone. Well, you’re about to know one more — me. When I was ten, I was diagnosed with CML, which actually stands for something that I can’t quite pronounce, even to this day. It is a type of leukemia, usually found in adults and rarely in children.

I can tell you one thing, I was shocked. Here I was in the emergency room, because I could barely walk, and the next thing I know they’ve taken blood and moved me into a small private room. I remember telling my mom that something must be wrong because they don’t just move you. Boy was I right.

The first year didn’t seem so bad. Sure I had to spend some time in the hospital to get my white blood cells under control. And ya, I was in a wheel chair for a month and I had to use crutches for a while. I had to go to physio, but my only medication was these tiny yellow capsules. I could swallow four at a time. I even had to go back to school. Things were under control, but then those little yellow pills stopped working and I needed a bone marrow transplant.

A bone marrow transplant is serious business. The goal of the bone marrow transplant was to wipe out all the cancer cells and to destroy my immune system. They needed to wipe out my immune system, so my body wouldn’t reject the donor’s bone marrow. They were essentially replacing my immune system with a new one. This needed to happen, so the new immune system could destroy the cancer cells, which my own immune system couldn’t do. Because they were purposely destroying my immune system with high doses of chemotherapy, I wasn’t able to fight off infection. That meant I had to stay inside, in complete isolation, before and after the transplant to reduce the chances of catching something. Getting sick with a cold or a flu can actually kill you.

Being in the hospital for close to two months and having to stay at home for the rest of the school year made it really hard to keep up with school work. My friends were able to call, but they weren’t allowed to come over because my immune system was low as a result of the chemotherapy. We didn’t want to risk me catching a cold or something. So it was hard to feel a part of things. My teacher tried to include me by making a pretend Adam. They would carry “me” to class and even take “me” to lunch. Too bad “he” didn’t do my homework too. The kids at school could write me letters, which my dad would pick up when he collected my homework assignments.

Having cancer has made me realize a lot of things. You definitely cannot judge someone by how they look. You have no idea what’s happening inside. I remember walking down the mall one day, when I had “the steroid body.” For those of you who don’t know what that is, it’s when you’re carrying about 10 extra pounds — all in your face — from the medications that puff you up so much. Seeing people stop and just stare hurt.

Thanks to the bone marrow transplant, I am now cancer-free. But I will always be aware that I had cancer and I will always fear that someday it may come back. At times, it’s been very hard. You think you’re making progress and then something pops up to set you back. A symptom appears or some count is high and it seems to start all over again. Many years later I still take pills and probably will have to take some form of medication for the rest of my life—but I can live with that.

There are some things that make living with cancer a little easier — thanks to the Kids Cancer Care Foundation of Alberta. I remember my first year at camp. My parents had to talk my older brother into coming with me. He was 17 and had his own teenage life, but I was scared and needed someone I knew with me, or at least to sit with me on the bus, so he came. I felt alone and sacred. After that first year, I made so many friends from camp that it made choosing the week I wanted to go each summer difficult. I always wanted to go the week that most of my friends were there. My parents will tell you that after that first summer, they could barely get a wave from me when the bus was leaving. I was too busy catching up with everyone.

You’ve probably heard how camp is a place where kids with cancer can be normal. How we get to do things like the giant swing and the high ropes. It’s a place where we meet other kids who know what we’ve been through. It’s been a place where I got to safely do things that my parents probably wouldn’t have allowed me to do. Cancer had a tendency to make them over-protective.

Camp was all of this and much more for me. It was a place where no one would stare because I still didn’t have hair. Yes, there were nurses and paramedics to keep us safe and hand out medications, but there were no checkups, no needles and no tests. Really, for me, it was all the things that weren’t at camp that make it a really cool place.

One of my favorite things about camp was the giant swing. The giant swing is about three stories tall. You get pulled up as high as you want to go, and when you’re ready, you pull a cord and then you fall. You feel the wind blowing in your hair, if you actually have hair. It makes you feel so great to soar in the air like that.

Those friendships I made that first year and the following years are the people I’m closest to now. We have common ground and experiences that bring us that much closer together. Even though I’m too old to be a camper now, camp continues to have an impact on my life.

Soon after I turned 14 I started volunteering at Kids Cancer Care’s Camp SunRise, a camp for young kids ages three to seven. Then as I grew older, I continued on to teen camps. I’m able to relate to the campers and I can say, “I understand how you feel” and mean it. I can hopefully let them see that yes, cancer sucks, but more importantly it doesn’t have to define you.

In addition to camp, Kids Cancer Care offers several other programs. Over the years, I went to a sporting event or two and enjoyed movies, fireworks and game nights. These things helped maintain a sense of belonging and of being a regular teenager.

Kids Cancer Care has also provided me with some amazing opportunities. Their Teen Leadership Program helped me to move out of my comfort zone. It gave me the confidence and the skills to try new things. In June of 2012, I received a Kids Cancer Care Derek Wandzura Memorial Scholarship, which helped start me on my current path. This year, I graduated with a Bachelor of Child Studies Degree and in September I will be continuing with a Bachelor of Education. As a future educator, I hope to bring the compassion and understanding I received at camp to the classroom and beyond.

I can’t say enough about all the wonderful, caring people I’ve met along my journey — at camp and at the hospital. My entire transplant team at the Alberta Children’s Hospital was great. They listened to my concerns, even when I wasn’t talking, because they can tell just by looking at you that something’s up. From doctors to nurses to new friends I’ll have forever — they have all helped make this experience a little easier.

My cancer experience has taught me to live life to the fullest. Have fun, be kind and do what’s right. That’s my motto.

And then there are people like you who help make all of this possible. Thank you for supporting Kids Cancer Care. You have helped make the ONE thing that is good about cancer possible for me and other kids. Thank you. Camp and the friendships we develop there mean the world to us at that time in our lives.

At 25, I am looking towards my future. What I want my career to be, what kind of man I want to become. As I think about those things and look back on my cancer journey, I realize that even though cancer does not define me it has definitely shaped me. Both you and Kids Cancer Care continue to play a part in that. Thank you.

“After that we thought we were prepared for anything, but nothing could prepare us for the cancer diagnosis.”

Our son Joshua was diagnosed with autism at the age of three. It was a terrifying time for us and a diagnosis that to this day, regularly tests our strength.

Before this, Joshua was diagnosed with craniosynostosis when he was just a few months old. This is when the separate pieces of his skull started to fuse together prematurely. In most kids this happens around age two. For Josh, this must have started shortly after he was born. He had to have surgery to reshape his skull when he was just 6 months old. This left him with his distinctive scar which is usually covered with hair. His entire head was so swollen that he couldn’t open his eyes for several days. As part of his recovery, Josh wore a helmet for a few months which helped his head take / maintain a proper shape while he healed. He was a busy crawler so this actually helped sometimes when he would bang into table legs, walls, us!

After that we thought we were prepared for anything, but nothing could prepare us for the cancer diagnosis in January 2011 when Josh was five. Josh had a tumour in his brain. Now, we found ourselves even more terrified. Terrified that we were going to lose our son.

Josh underwent a pretty intense surgery to remove the tumour. Between the tumour and the surgery to remove it, Josh couldn’t walk on his own for many months. He also endured months of radiation and chemotherapy, which made him sick, very weak and immunocompromised. Also, his lack of hair during treatment meant that this normally hidden scar for the earlier surgery was very obvious. During treatment he had his sixth birthday, but because he couldn’t have a party with other kids, he refused to be six for months afterwards. It was a very difficult time for our entire family, even his younger sister Jessica wasn’t allowed to be around other kids for fear that she would bring home a cold.

Children with autism can have high levels of anxiety. Josh does not do well with change. His cancer completely tore apart every ounce of routine we had worked so hard to build for him.

We couldn’t leave Joshua for a second. Not even to grab a coffee. One of us had to be with him every second at the hospital. My husband Michael and I were determined to create a new normal – even with chemotherapy, radiation and regular blood transfusions. We both took a leave from work, so we could spell each other off on 24-hour hospital shifts. My mother-in-law Pat moved to Calgary to help with both Josh and Jessica.

Surprisingly, Joshua’s autism became an unlikely ally in his battle against cancer. Even the negative routine of invasive medical treatments became a source of routine and comfort for him.

Hearing that your child has cancer is as horrible as you can imagine. But even worse was watching our son endure the awful procedures necessary to get rid of the cancer. And, it didn’t just affect Josh. Jessica once asked us if she would also have to go to the hospital when she turned five. She worried her hair would also fall out. As a parent, it is heartbreaking to see the toll cancer has taken on not only one, but both of your children.

This is why I am so grateful for Kids Cancer Care and all they have done for our entire family. In the summer of 2011, between rounds of chemo, both kids attended their SunRise program, a day camp for younger patients and siblings. Josh loved that he could be around other kids – because Kids Cancer Care creates a safe and supportive environment for kids on and off treatment. For a few days during that awful year, he was just a kid again.

During 2011, we also went to parties and other Kids Cancer Care functions like Hitmen games in germ-controlled private suites.

For the past seven years, we’ve been able to attend so many wonderful programs from the Polar Express train ride at Aspen Crossing to Family Camp in the fall to cooking classes and more. We are so grateful to attend these programs and to see the friends with have made through Kids Cancer Care.

And now both kids go to summer camps at Camp Kindle. They love camp and can’t wait to go each year. Although we miss them, it gives Michael and me a wonderful break too.

From start to finish, Josh’s treatment was less than a year. I wish that was the end of cancer for Josh. Unfortunately, Josh is one of the 75% of children who survive cancer, but live with life-altering side effects. Josh walks with a limp and gets tired easily. It pains me when I hear that the boys at school tease him because he can’t keep up. They taunt him as they lap him in gym class. They call him lazy and say he’s a baby.

Once again, this is where Kids Cancer Care comes in. Last September, Josh was scheduled to attend his first day of PEER (Pediatric Cancer Patients and Survivors Engaging in Exercise for Recovery). PEER helps children affected by cancer to rebuild their fundamental movement skills (e.g., running, jumping, catching and throwing), while also building muscle strength, aerobic capacity, flexibility and balance.

That day, Josh had a particularly bad day at school and refused to go to PEER. Michael and I encouraged him and he finally, yet reluctantly, agreed to go.

He had the time of his life.

He came out of the gym with the biggest grin on his face. PEER is the best thing ever for Josh. When we asked him if he wanted to go to PEER again, Josh answered, “Yes! They’re just like me there.” My heart melted.

At PEER, he’s free to be himself. He can just be a kid without being different. He’s also benefitted from weekly tutoring sessions through Kids Cancer Care’s Education Support Program.

Thanks to all the staff in the office and at camp, the PEER and Educational Support volunteers, and everyone who supports this organization – Kids Cancer Care makes our little worlds brighter. And for that, we are eternally grateful.”

– Victoria, Josh and Jessica’s mom

What’s black and white and eats 40 kilograms of bamboo a day, poops five kilograms a day and has one of the strongest bites in the animal kingdom? Thanks to you, 49 kids from the Kids Cancer Care community can probably answer this.

Forty nine kids currently battling cancer received VIP treatment at the Calgary Zoo this month, when they were treated to a private visit with the pandas before the gates opened to the public.

The trip to the zoo was a rare treat for these kids, who normally have to avoid public places because their immune systems are compromised by chemotherapy and radiation, making it difficult for them to fend off communicable diseases such as the common cold or flu.

“We used to come here as a family at least once a week,” says Lisa Mechor, whose seven-year-old son Cole is battling high-risk acute lymphoblastic leukemia. “We’ve had a zoo membership since he was little and now we go nowhere. The risk is just too high for these kids to be out in public in heavily populated areas with lots of people.”

Infection is serious for children on treatment and is the leading cause of complications and death, so staff at the Calgary Zoo and Kids Cancer Care went to great lengths beforehand to make the areas as germ-free as possible. The staff thoroughly cleaned the Panda Passage and the Enmax Conservatory, where the children enjoyed a hearty pancake breakfast before seeing the pandas, and then wiped down all the surfaces with hospital-grade disinfectant.

“Cole really enjoyed the outing!” says Lisa. “I am always amazed at how much work Kids Cancer Care goes to in order to pull things off so perfectly! They understand what we are going through and it’s always nice to see some of the families we see at the hospital out having some fun!”

“This is such a great experience,” agrees Candace Inkpen, whose six-year-old son Foster is battling high-risk B-cell acute lymphoblastic leukemia. “His classmates went to the zoo to see the pandas, but he couldn’t join them.” Foster misses about 50 per cent of school because he is sick or a classmate is sick.

Kids like Cole and Foster would not have been able to see the pandas if it wasn’t for the private viewing, which was made possible by the Calgary Chinese Cultural Centre. Last May, volunteers from the Calgary Chinese Cultural Centre held a gala fundraising dinner and raised enough money to give 550 children with cancer and 650 seniors from the Calgary Chinese community a chance to see the pandas over the next three years.

“If you can make even part of the day fun for him, that’s a victory,” says Lisa . “This is something we wouldn’t otherwise be able to do.”

The private visit was especially meaningful for 10-year-old Laura Rushforth, who has been battling a brain cancer for the last three years. With 98 per cent of her vision gone, Laura is only able to see things in high contrast, things like black and white panda bears.

“For Laura to see the pandas, to get up close, because she has to get up close to see the contrast, is amazing,” says Laura’s mother Jennifer Rushforth.

“He’s adorable,” Laura said, looking at the daddy panda through her high-powered spyglass. “I can really see the contrast between the panda and the rocks on the ground around them. It’s really fun and interesting that I can see them, where they are and what they’re doing.”

Cole also left the zoo totally smitten: “I like pandas better. I used to like giraffes, but now pandas are my favourite.”

Foster and his big sister Kaidence feel the same way. “I love them,” says Kaidence. “They’re cute.”

“Me too,” chimes in Foster. “They eat a lot — like me!”

“We’re so lucky,” says Lisa. “I hope that down the road, it’ll be days like today that Cole remembers.”

Thank you for giving kids with cancer a chance to be kids and for giving them the opportunity to see the adorable pandas while they are here.

Panda Quick Facts

1. Did you know that pandas eat 40 kilograms of bamboo per day and poop five kilograms per day?
2. Pandas eat all day long, eating for about 10 to 14 hours a day.
3. To feed these hungry pandas, 1,200 kilograms of sustainably sourced bamboo is shipped from China each week.
4. Pandas live about 20 years in the wild and about 30 years in a zoo.
5. Pandas are good sleepers too. They sleep about 10 hours every day.
6. Did you know pandas have five pads on their front paw and one pseudo thumb, which they use to grab and hold the bamboo stock.
7. The panda has one of the strongest bites in the animal kingdom
8. Where pandas live in China in six different mountain regions.
9. There are four pandas currently living at the Calgary Zoo. The panda family consists of a mother and father and a brother and sister.
10. The pandas are leaving in the fall of 2019.

“They were so wonderful. With everything they were going through, they took it upon themselves to reach out and find us. We expected to go home the next day, so we had nothing with us. Lyle brought us pajamas and clothes and shoes. They brought us supper.” ~ Rheanna Deboer

It started as a perfect summer day. Jeff and Rheanna Deboer were preparing for a family camping trip. On a whim, they decided to make a rather large detour to Calgary, so their two-year-old son Brenden could see a doctor at the Alberta Children’s Hospital. Brenden had been vomiting daily for the past two months and after three trips to the emergency and countless medical appointments, they were no closer to understanding their son’s condition. They left Brenden’s older siblings Emily and Dustin with their grandparents and headed north to Calgary.

“We were really just going to the hospital to rule things out before our holiday,” recalls Rheanna. “We didn’t expect to come to Calgary and find a brain tumour. We expected to go back home that night, but Brenden went in for a CT scan and 20 minutes later we were meeting with the whole neurology team.”

Brenden was diagnosed with a rare brain cancer called ependymoma and scheduled for surgery the very next morning. There they were, alone and frightened in a strange city, miles away from home, eons away from their holiday plans and without so much as a change of clothes.

In another hospital room just down the hall, another family was facing a similar nightmare. Only two weeks earlier, their two-year-old daughter Ella had been diagnosed with a brain tumour – pilocytic astrocytoma. Everything that could go wrong, did go wrong for Ella – surgeries, feeding tubes, breathing problems, pneumonia, infections, fevers, facial paralysis, balance and coordination issues, vision and hearing loss.

The two families happened to share the same neurosurgeon Dr. Gallagher. “After checking in on Ella, Dr. Gallagher paused and came back into the room,” recalls Ella’s mother Christie Reimer. “She said, ‘I have a family that just came in and they’re going through something very similar to you.’”

Ella’s parents, Christie and Lyle Reimer, looked at each other and immediately started looking for the Deboers.

“We hadn’t left Ella’s side for a second for the past two weeks and now here we were searching the hospital for this couple we didn’t even know,” says Christie.

It wasn’t long before they found the Deboers and they became instant friends.

“They were so wonderful,” says Rheanna Deboer. “With everything they were going through, they took it upon themselves to reach out and find us. We expected to go home the next day, so we had nothing with us. Lyle brought us pajamas and clothes and shoes. They brought us supper.”

“We talk every day now,” says Christie. “It’s so nice having someone to relate to.”

Families like the Reimers and Deboers need strong support systems while navigating childhood cancer, but the forced isolation of the disease makes it difficult to maintain relationships. It can be difficult for friends and families to understand.

That’s where you come in. The Deboer and Reimer families can continue to build their friendship through free programs that your support makes possible — programs such as Family Camp, The Polar Express and Cooking and Caring.

Thanks to you, the Deboer and Reimer families were able to reconnect at our spring Family Camp. They went for nature walks, participated in arts and crafts and took in the Water Valley Rodeo. Little Brenden was able to try out the climbing wall with his older brother and sister, Dustin (6) and Emily (7) — thanks to a special volunteer named Broch, who went the extra mile to find a climbing harness small enough for Brenden.

“They put the harness on Brenden and belayed him and he climbed right up,” says Rheanna. “He climbed pretty high too.”

Brenden is now finished treatment, but the Deboers still come to Calgary every four months for close monitoring. So far all the MRIs have come back clear.

“It’s such a relief that he’s doing well,” says Rheanna, “but when you go through something like this you not only carry your own worries for your own child; you also worry about all the other children. I feel so bad for the other families whose circumstances are so much worse. When we think of little Ella and everything she is going through, we feel grateful for our circumstances.”

Ella’s tumour is incurable. Sadly, it will continue to grow. To slow the growth, she is undergoing a total of 70 rounds of chemotherapy. This will take a year and half to complete. At three years of age, this is half of her life. “That’s a long time to be on chemotherapy,” says Rheanna.

Thankfully, with your support, Ella is building her strength and working on her balance and coordination during weekly exercise sessions at PEER (Pediatric Oncology Patients and Survivors Engaging in Exercise for Recovery).

Ella also enjoyed her first summer camp experience this year. Still a toddler, Ella goes to our SunRise day camp in Calgary. Each day, when Christie picks Ella up from camp, she asks her daughter what she did at camp today. Each day Ella replies, “I’ll tell you about that tomorrow mom.” Ella is clearly pleased with her new-found independence at this special camp. She calls it Camp Cookie — after her one-to-one volunteer aide Maisa El Kardy, whose camp name is Cookie.

Christie is relieved that Ella is making new friends at Kids Cancer Care programs. “She lost all of her friends from before cancer, but she’s starting to make friends with Sitara and Sophia at PEER.” Ella also found a new best friend at SunRise this summer — a little boy named Henry.

“We’re so grateful for Kids Cancer Care,” says Rheanna. “We’re grateful for the meals and the special family outings and the connections we’ve made with other families. These friendships are so important. We still go to Calgary every four months for MRIs, but we’re feeling optimistic and grateful for every day we have with Brenden and our other children.”

Thank you for helping to create a healing and supportive community for families facing childhood cancer.

“To receive an award in the name of Terry Fox, who has impacted the lives of so many people, is an incredible honour. I was shocked when I received the call and incredibly humbled to know I had won it.” ~ Campbell Laidlaw

While most teenagers are procrastinating about doing their homework, Colette Benko and Campbell Laidlaw are out changing the world. Their academic, humanitarian and athletic contributions were recognized last spring when they each received a prestigious Terry Fox Humanitarian Award to pursue university studies in the fall.

“To receive an award in the name of Terry Fox, who has impacted the lives of so many people, is an incredible honour,” says Campbell, who is using his scholarship to earn a combined degree in business and kinesiology with an ultimate goal of becoming a doctor. “I was shocked when I received the call and incredibly humbled to know I had won it.”

Colette was equally surprised and honoured to receive the award in the Canadian hero’s name. “I was very surprised and honoured to receive the award,” echoes Colette, who is studying medical sciences at the University of Western Ontario. “Growing up, Terry Fox was one of my role models. I have always been inspired by his resilience and dedication. There are so many amazing youth across Canada doing outstanding work and each is having such a large impact in the community, I didn’t expect to win it actually.”

The Terry Fox Humanitarian Award was established in 1982 to honour the Canadian hero’s legacy while inspiring young Canadians to continue the work he started through the pursuit of higher education. Worth $28,000, the award recognizes young Canadians who demonstrate the highest ideals and qualities of citizenship and humanitarian service through their academic, athletic, fitness, health and voluntary community service. With that in mind, the Government of Canada laid the foundation for the scholarship fund through two major endowments: $5 million in 1982 and $10 million in 2006.

Since that time, hundreds of young Canadians, aspiring to make the world a better place, have received the scholarship. Colette and Campbell were among the 21 Canadians selected in 2018 to receive the prestigious award.

Colette and Campbell are both cancer survivors who have long been active with Kids Cancer Care and the larger community. As former teen leaders and spokeskids, they are both living the ideals of Terry Fox in their own way.

Your support played a key role in shaping Colette and Campbell into the leaders they are today. By supporting our programs, you provide young people from across Alberta with rich opportunities that safely push them outside their comfort zone and beyond their cancer experiences, so they can grow as individuals and reach their full potential.

“Kids Cancer care has helped to form me into the person I am today,” says Colette. “Without their support through my journey I would not have had the confidence to share my story. This has helped tremendously in finding my identity and how I could aid in the fight against cancer and advocating for pediatric patients.”

Campbell agrees: “Being a teen leader and spokeskid for Kid Cancer Care helped me develop from a shy kid into someone who is confident and loves to interact with people. I truly believe this experience has helped make me who I am today.”

Diagnosed with stage-four neuroblastoma at age two, Campbell was given only a five per cent chance of surviving. He endured repeated rounds of chemotherapy, surgery, bone marrow transplants and radiation. As a result, Campbell is hearing impaired today and has faced a lifetime of orthodontic issues – braces, implants and jaw surgery – but he hasn’t let this stop him from living a full, active life. He simply grew his hair long, so other kids couldn’t see his high-powered hearing aids, and hit the slopes to perfect his freestyle skiing skills. In the summer, Campbell perfected his golf game and became an accomplished golfer.

As a teen leader in our Teen Leadership Program, Campbell served as a role model and mentor to younger children with cancer, showing them there is life beyond cancer. He also demonstrated his philanthropic spirit by raising $2,500 to complete a humanitarian service trip to El Salvador, where he and other teen leaders from the Teen Leadership Program helped build homes for low-income families.

Representing Kids Cancer Care as our spokeskid in 2013 and 2014, Campbell helped raise much-needed funds and awareness for other children facing this disease. Quiet and unassuming by nature, he pushed beyond his comfort zone to excel in this role by repeatedly reworking and rehearsing his speech until he perfected it. His hard work paid off because more than once he received a standing ovation.

Campbell has big plans for life: “My goal is to use my combined degree in business and kinesiology as a stepping stone for medical school,” he says. “I would really like to have a business background, so one day I will be able to have my own practice.”

Colette also has ambitious plans for a career in the medical field and it’s her own experience with cancer that is her driving to help others with cancer. Colette was diagnosed with cancer in 2014, when she was 13 years old. For years, Colette had been a long-distance runner and a competitive Irish dancer. At the time of her diagnosis, she was preparing for the North American Irish Dance Championships and although she managed to compete that year, it would be the last time she ever danced. Sadly, Colette sustained damage to her femoral nerve during surgery and now dancing and running are out of the question for her.

Like Campbell, Colette served as an official spokeskid for Kids Cancer Care, inspiring audiences with her story of courage and hope. She also volunteered through our Teen Leadership Program, where she served some of our city’s most vulnerable populations. Colette later made a humanitarian service trip to the Dominican Republic, where she and other teen leaders from the Teen Leadership Program built a school for low-income families.

As a cancer survivor, Colette has faced her share of adversity, but she is determined to transform her own suffering into helping others. A bright and gifted student, Colette is determined to improve the lives of other children with cancer by pursuing a career in cancer research. If her past accomplishments are any indicator of her future success, Colette has a promising career as a cancer researcher ahead of her.

As a high school student, Colette worked as a research student in the lab of Dr. Aru Narendran at the University of Calgary. Under his direction, she led a research project that won multiple national and international science awards. More importantly, however, her research into neuroblastoma is showing promise beyond the laboratory in the real world. The drug she investigated is now going into a phase one clinical trial at children’s hospitals across North America through POETIC (Pediatric Oncology Experimental Therapeutics Investigators Consortium). Quite a feat for a high school student.

Designed to inspire great acts of citizenship and humanitarian service, the Terry Fox Humanitarian Award is tailor made for young Canadians like Colette and Campbell, who not only believe in a better world, but also strive to make it better.

Thank you for believing in a better world for kids with cancer. You are not only changing the lives of young people like Colette and Campbell; you are changing the lives of countless people to follow – the many individuals they touch through their courage and commitment to making the world a better place.

Thank you for shaping tomorrow’s leaders.

“When the kids come into the clinic and I tell them I used to go to camp too, they don’t believe me, so I show them my leg and then they believe me. And there’s an instant bond. They call me Penguin, my camp name, because penguins also have a little waddle to their step, like me!” ~ Samantha Andres

As a child I looked forward to summer camp all year long. It was a week away with my brothers, where no one looked at me funny or treated me differently because I have a prosthetic leg. In that way, cancer camp is truly unique. It’s a place where all kids, regardless of their cancer history or ability, can do everything. And, at camp, I did it all — swimming, giant swing, rock climbing. As a child, camp showed me that kids CAN. Now, as Kids Cancer Care’s nursing coordinator, I am showing children that they CAN too. But first we must ensure their health and safety.

As nursing coordinator, I oversee a team of medical staff and volunteers responsible for the medical needs of about 500 children at Camp Kindle and at our SunRise day camps in Calgary and Edmonton. All of these kids are in some way affected by cancer, either directly as a patient or as a sibling.

Children on cancer treatment are often immunosuppressed, so they don’t have the same fighter cells to fend off infection. This puts them at high risk for contracting communicable diseases such as colds and flus or common childhood illnesses such as chickenpox. Infection is serious for children on treatment and it is the leading cause of complications and death, so at Kids Cancer Care we take important measures to ensure that camp is as germ-free as possible and that our campers are safe.

Here’s 10 ways we keep children at camp safe:

1. All of our programs are guided by a medical advisory committee led by a pediatric oncologist. This committee is made up of physicians, nurses and other health care professionals in pediatric oncology and hematology.
2. Camp Kindle is equipped with a modern, fully functioning medical centre, where children receive their daily medications, receive medical care, or just drop by to relax and recharge. The ReKindle Clinic features two private rooms that provide solitude and privacy for children requiring treatment or respite. It is staffed with registered nurses and a pediatric oncology resident and is open 24 hours a day. The nurses are available 24 hours a day.
3. Camp Kindle is a 75-minute drive from the Alberta Children’s Hospital and our SunRise day camps in Calgary and Edmonton are minutes from the hospital.
4. At Camp Kindle and at our SunRise day camps, we follow strict health and safety protocols, ensuring that staff and volunteers are cold- and flu-free. If a volunteer or staff member begins showing signs or symptoms of a cold or a flu, we immediately quarantine them and then send them home. Staff, volunteers, campers or special visitors with runny noses, sore throats, coughs, gastrointestinal illnesses or upset stomachs are not permitted to attend camp.
5. Because hand washing is the most effective way of fighting off unwanted germs and illnesses, we train our staff and volunteers to be good role models for the kids, frequently washing their hands and encouraging the same in children.
6. We also encourage staff, volunteers and campers to wear sunscreen and drink plenty of water during the day. We place sunscreen and water jugs in various locations around camp and ensure that the campers are hydrated and protected from the sun throughout the day.
7. We also ensure that camp is clean and hygienic, which includes having our professional cleaners and staff doing thorough cleanings daily and weekly.
8. Our camp programs have an adult-to-camper ratio of 4:1, ensuring that all kids receive excellent individualized care and supervision.
9. All staff and volunteers undergo police checks and vulnerable sector checks.
10. All staff and volunteers are experienced and well-trained in attending to the unique physical, social and emotional needs of children affected by cancer.

Our camps offer immune-compromised children a controlled environment with well-screened and well-trained staff and volunteers to oversee their well-being, while the kids have fun. Our camps are safe for all children regardless of where they are in their cancer journey, whether they are on treatment, off treatment or they are a sibling. By taking these special precautions to make camp a safe and healthy environment, we’re able to give children affected by cancer the break they need. Thank you for making this possible.

— Samantha (a.k.a. Penguin)

Samantha is a registered nurse, a cancer survivor and former Kids Cancer Care camper.

Longtime volunteer Diane Exner sat down with Tara and Jonathan Brown to discuss their journey with childhood cancer. They shared with Diane why they volunteer each year for Tour For Kids Alberta, a multi-day cycling event that raises funds for Kids Cancer Care and Camp Kindle.

Diane: Thank You, Jonathan and Tara, for taking a few minutes out of your busy lives to talk with me today, and for all you do for Kids Cancer Care; specifically Tour For Kids. We appreciate all you do. I know that Kids Cancer Care and Tour For Kids is a cause close to your heart, I was wondering if you would mind sharing a bit of your story with us?

Jonathan: Our son, Alexander was diagnosed with a brain tumour when he was two years old. He went through 10 months of treatment (chemo, high dose chemo, intrathecal chemo, stem cell transplant, radiation and two brain surgeries). Nothing would stop the tumor. He passed away on October 23, 2010. (He was born November 13, 2007). We donated his brain and tumour to research after he passed away. His tumour ETMR (previously known as ETANTR) was the 36^th documented case in the world. They were able to create a cell line from his tumour donation. This means they have something to do research on now. This is the one and only cell line for ETMR in the world. It’s extremely valuable. Researchers all over the world have asked for it. (Across Canada and the USA, Germany, Switzerland, London, Spain) Several papers have been written about his cell line. The most recent research has shown that a couple chemo combinations show promise is slowing the tumour down. It’s not a cure, but it’s a start in the right direction!

Diane: How long have you been volunteering with Kids Cancer Care and Tour For Kids?

Tara: Seven years now. We started once Alexander passed away. It was something to keep us busy, but now we love it and would love to find a way to volunteer more!

Diane: Can you tell us how you got involved in this particular weekend?

Tara: We were already active volunteers for Kids Cancer Care, but we heard from others who volunteer for T4K how much fun it was. We decided to give it a try, and now we are hooked. We found the perfect job for us, we do the signage. For us, since we can be together, it’s like a big road trip. It’s so much fun! It’s hard work….early mornings and late nights, aching bones, but so much fun!

Diane: This weekend is a three-day commitment for both volunteers and cyclists, and days can be long, tiring and a lot of work. What keeps you motivated to put so many hours in, in such a short period of time?

Tara: This event is special. I think part of that specialness is that it’s three days. You really get a bond with everyone since you are all in it for three days. You work together to fix issues and make things work. Plus, it’s awesome being able to drive around and be with my husband all day. Being able to tell your story and tell people about Alexander is very healing for us.

Diane: What is the atmosphere like over the 3 days? Why do you come back year after year?

Jonathan: Everyone is happy and upbeat. Everyone pulls together to fix issues and keep things running. The cyclists are so thankful to the volunteers and the volunteers are so thankful to the cyclists. It’s a great symbiotic relationship.

Tara: Again, cyclist love to hear our story and hear about Alexander, which is amazing. T4K is an amazing event for Kids Cancer Care. It’s a way for us to help Kids Cancer Care without having to donate money. There’s only so much money we can donate in a year, so being able to donate our time to help raise money is great.

Diane: If someone wanted to get involved in the Tour Four Kids weekend, as a cyclist or volunteer, what would you tell them they could expect from this event? I’ve heard words like ‘intimate’, ‘family’, and ‘life-long friends’ when people talk about this weekend. Would you agree these would be descriptors from your perspective?

Jonathan: Yes definitely. It’s very intimate. Everyone becomes family and life-long friends. You shared a three-day journey with them, it’s inevitable that bonds will be created. Plus, you get to spend a night at Camp Kindle, this is amazing for the cyclists to see first hand where their money will go. And it’s great for volunteers and families to spend time here. We love to go to camp any chance we get, we feel safe and protected there.

Diane: I know you have a very personal connection to this event, would you mind sharing your personal story, and how this has impacted your lives including present day? How has it helped through the healing process?

Tara: Alexander is our only child. He was brought here to help find a cure through his cell line and to give us a purpose. That purpose is to help fund his cell line (which Kids Cancer Care does) and to help other families. When people look at Jonathan and I, they see a couple with no kids. They don’t see the angel by our side. Part of our healing is to tell people about Alexander. It keeps his memory alive and brings joy to us to talk about him. He is still fighting cancer through his cell line… we are so very proud of him.

Diane: Your story started seven years ago, and this event has played an important role in supporting you through it. With this year’s event fast approaching July 13, 14 and 15th, what would you say to those folks to are looking for ways to support. How can they help?

Tara: If you are a cyclist, this is a must-attend event! This is a challenging event, but you are treated like royalty every day. There are massage therapists on hand, there are mechanics on hand, amazing food every day. Supper one night is a steak dinner; the other night is a great supper at camp. Amazing scenery, during your ride too! You can support as a volunteer. Yes, it’s a three-day commitment, but it will be the best thing you ever did. Lastly, you can donate to one of the cyclists, every dollar counts! Oh, if you can’t make the three-day commitment, there are also volunteer opportunities before and after the event.

Ride somewhere meaningful this summer on Tour for Kids Alberta and help send children with cancer to Camp Kindle. If you are interested in registering for Tour for Kids, July 13 to 15, sign up here! 

If you are interested in volunteering for Tour for Kids, please contact Tracey Stahn. 

Dr. Sorana Morrissy is one of Calgary’s newest recruits to the Childhood Cancer Research Lab at the University of Calgary. She is investigating a devastating children’s brain cancer and predicts that one day we may be able to monitor a child’s risk of relapse with a simple blood test. 

With a bold new research lab and a world-renowned tumour bank, Calgary was the ideal place for Dr. Morrissy to relocate her lab and continue her research into medullablastoma, an aggressive pediatric brain cancer. Her research is already offering important insights into this disease. And your support helped bring her here.

“While the prospect of working in a brand new lab environment was compelling, I was especially drawn to the collaborative nature of the work being done at the Alberta Children’s Hospital Research Institute and University of Calgary,” says Dr. Morrissy. “The multidisciplinary approach is invaluable in our quest to find new answers for kids fighting cancer.”

A medical geneticist from the Hospital for Sick Children in Toronto, Dr. Morrissy is working with researchers specializing in brain tumours and the immune system. She is sequencing medullablastoma tumour samples to understand why some cancer cells elude chemotherapies and why others don’t. Employing advanced computer systems, Dr. Morrissy and her research team apply complex mathematical analysis on the genetic code extracted from medullablastoma tumour samples. With this information, they are able to calculate and predict certain responses in the tumours, which they can later test in the lab.

Medullablastoma is the most common type of children’s malignant brain tumours, representing 20 per cent of all children’s brain tumours. Although we have seen significant advances in research and care, about 30 per cent of all children diagnosed with this brain cancer do not survive.

The ultimate goal of Dr. Morrissy’s research is to understand the molecular changes in tumour cells that make them resistant to cancer treatments. Armed with this information, they can begin laying the foundation for identifying and developing new targeted therapies that will save lives without causing devastating permanent damage to the child.

“In Calgary, there may be three to four cases of medullablastoma a year, but in every case, treatment causes heartbreaking damage to these young developing brains,” says Dr. Morrissy. “It’s important for us to find better ways to help these kids and their families.”

None of Dr. Morrissy’s work could be done without a robust collection of tumour samples. Thanks to your support, Calgary boasts one of the largest collections in North America. “The tumour bank here in Calgary is exceptionally rich with large samples,” says Dr. Morrissy. “It allows us to examine cells from different parts of the tumour and see how the tumour grows and adapts over time.”

Dr. Jennifer Chan, who oversees the tumour bank with over 20 types of tumour samples, is pleased to have Dr. Morrissy on the Calgary research team. “It’s exciting to be adding experts like Dr. Morrissy to our exceptional team of researchers in the Childhood Cancer Research Program,” says Dr. Jennifer Chan. “Her findings are already revealing interesting new approaches to tackling this very difficult diagnosis.”

“We know that metastases of medullablastoma are entirely devastating,” says Dr. Morrissy. “It’s important to understand how the cancer cells spread from the primary tumour to distant sites on the brain surface – our research indicates that they cross the blood-brain barrier and travel in the bloodstream throughout the body, homing back to the brain where they grow as deadly metastases. This tells us that perhaps we can monitor the risk of the cancer recurring by doing simple blood tests. It’s a hypothesis at this point, but it gives us a place to start.”

The new Childhood Cancer Research Lab at the University of Calgary Cumming School of Medicine, which opened last December, complements the strong culture of innovation and collaboration that was so attractive to Dr. Morrissy. The open concept and shared work spaces of the lab encourage easy interaction and collaboration among researchers.

“Seasoned researchers will tell you the simple conversations that happen in the lunch room or hallway are where some of the best ideas are born,” says Dr. Chan, the Kids Cancer Care Chair in Pediatric Oncology, who is the brains behind the new research space. “We wanted to create a space that would make those conversations a part of our everyday experience. Since the lab opened in December 2017, we are already seeing more connections being made between labs. It’s very gratifying and our hope is that it will ultimately result in some promising findings for the kids and families we are working so hard to help.”

Adapted with permission from the Alberta Children’s Hospital Foundation

Read more about the new Childhood Cancer Research Lab here.