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

Thanks to you, 16 teens from Kids Cancer Care’s Teen Leadership Program had a life-changing experience in Guadalajara, Mexico, where they experienced childhood cancer from a whole new perspective.

While in Guadalajara, the teens volunteered at a hospital and shelter for children with cancer and a local school. Both the shelter and school are run by a local children’s cancer charity Nariz Roja — Red Nose.

For some teens, visiting the hospital was the most impactful experience of the trip.

“It’s so different from a children’s hospital here in Canada,” says Ryane Nethery, a teen leader on the trip. “There’s no privacy. You can see right into the back where they are mixing the chemo drugs. Once I saw this and heard kids crying, it really hit me.”

Unlike Canadian hospitals, where privacy is absolute and chemotherapies are prepared in a lab offsite, the cancer clinic in Guadalajara was more public and chemotherapies were prepared onsite. 

“I just recently went through cancer, so seeing a clinic in the shape of a circle where you’re forced to stare at each other was shocking for me,” says Madeline Pillipow, one of the teens on the service trip. “I couldn’t imagine being in that position.”

The teens were also surprised to see children on active treatment, sitting and playing on the pavement, while awaiting their turn for chemo.

“When I got home I realized how grateful I am for what I have here,” says Madeline.

When the teens first arrived in Guadalajara, Nikki Lamarche of Kids Cancer Care asked them to reflect and share with each other their personal goals for the trip. For individuals who weren’t sure about their goals, the group brainstormed together to help identify potential learning opportunities.

The teen leaders soon discovered that if you’re paying attention, there are no shortage of learning opportunities — be they personal or professional.

“The locals are very relaxed people,” says Madeline. “I’m usually a very uptight person and I took away that I need to be calmer.”

The teen leaders spent each day volunteering, whether it was mopping floors, painting walls, hauling bricks, serving meals or playing with children at the hospital.

The teens cleaned and painted the shelter and hauled hundreds of bricks to a construction site, where Nariz Roja is building a second shelter. This in turn created jobs and temporary housing for local homeless men, who were able to sleep in the gated construction site, while working on the project.

The Nariz Roja shelter “is similar to Ronald McDonald House here, but just way smaller,” explains Ryane.

Despite language barriers, the teens managed to connect with students from a Nariz Roja school. Each group presented on their culture and traditions. While the Calgary teens worked on their Spanish listening skills, the Mexican teens worked on their English.

In the little free time they had, the teens immersed themselves in Mexican culture and toured the city of Guadalajara, visiting a cathedral and learning salsa dancing.

“It was just so eye-opening,” says Madeline. “I’m so happy we got to do it and I would do it again if I could.”

Ryane couldn’t agree more: “I am learning important life lessons. Helping kids with cancer helps me to make sense of my own cancer and it gives me hope for all of us.”

Thank you RBC and other generous donors for believing in our Teen Leadership Program. You are helping teens affected by cancer to build important transferable skills for life such as team building, leadership, communication, time management, budgeting and career planning.

Photo gallery

Our cancer journey began like many families whose children are diagnosed with leukemia – with symptoms and signs that we initially discounted as common, normal ailments of childhood. There were no red flags, no reason for cancer to even be a blip on our mind. But looking back now, we can pinpoint the start of Foster’s cancer journey.

The Holiday Curse

When Foster was three years old in November 2015, we took him to a pediatrician for leg pain. It was only in his left leg, the leg he’d broken about six months earlier. As a precaution, we had X-rays done. Everything came back perfect, so the doctor thought it was just growing pains.

Fast forward a few weeks. December 25, 2015, Christmas morning. There was no 5 am wake up call to see if Santa had visited. In fact, we had to wake Foster up and bring him downstairs because he was so tired, feverish and nauseous. He spent the whole day on the couch barely able to open more than a couple of presents. It was sad to see him like that on Christmas Day, especially since only eight months earlier he had broken his leg at Eastertime. Two major holidays and Foster was out for the count, unable to enjoy these special occasions!

On January 6, 2016, Foster turned four years old. There was cake, balloons, presents and sickness again. What we thought was just the flu, seemed to come and go since Christmas. It wasn’t too concerning at the time. Tylenol would bring the fever down. He would have a bad day or two, but then he’d bounce back to his regular self. Illnesses always seemed to hit Foster the harder and he took longer to recover, so it wasn’t out of the ordinary for him. We started to think he had the holiday curse!

A short while later we booked a family vacation. We didn’t want the holiday curse to continue, so we decided to take Foster to the doctor for a check-up to make sure he was clear to travel. The doctor checked him over and seemed to think he was at the tail end of the flu. It was safe to go on our vacation. Whew!

We headed off on our vacation and arrived with two bouncing excited kids. The first few days were absolutely amazing, though Foster seemed tired and irritable. Then it happened, Foster got ill again. Fever. Cough. Headache. Runny nose. Nothing serious we thought. Just another cold from travelling and being run down from the first few days of vacation. He spent the next couple of days in the hotel room. Timing just wasn’t great for this little guy. First Easter, then Christmas, then his birthday, and now vacation was a bust.

It seemed like he might have a sinus infection, so we took him to a clinic to make sure he would be alright to fly back home. They assessed Foster and asked the questions we got all the time: “Is he always this pale?” “Does he bruise like this all the time?”  You see, Foster has oculocutaneous albinism, which means he has lower levels of melanin. Among other things, this means he has pale skin, which means his bruises are more pronounced and noticeable. The doctor came to the same conclusion. It was a sinus infection and we left with antibiotics. As soon as he had the antibiotics, he instantly looked and felt better. We were ecstatic to see him enjoying a day or two of fun, before leaving for home.

The Unbelievable

After a long flight, we arrived home the morning of January 26, 2016. Both kids were exhausted, but Foster seemed to be feeling much better, until the next day. He woke up complaining about his leg again. We just wrote it off as growing pains again because he just had a clear X-ray a couple of months earlier and there were no visible signs of anything wrong. No redness. No swelling. No bruises. Nothing.

This is where a date, January 28, 2016, becomes permanently etched in my mind. I remember every moment of that day – dropping the kids off at school and preschool, picking them up, taking our daughter Kaidence to skating lessons, Foster and me watching her from the stands. Though, that night was different. Foster’s leg pain seemed to be getting worse. He could barely walk on it. During the skating lesson, my husband picked Foster up and took him to the Alberta Children’s Hospital. We thought, “It must just be a complication from when he broke his leg. What else could it be?”

What else could it be? That question will haunt me forever. My husband and Foster arrived at the hospital around 7 pm. Brian sent a cute picture of Foster waiting in the ER, then an update, “We’re just waiting for X-rays.” Then, Brian got those horrible words first. I can’t even imagine what he was going through by himself in the ER when he heard those words, “Foster has leukemia.” When Brian phoned, I thought he was joking around when he told me to sit down. You see Brian is the family jokester. He is always making us smile, even with his lame daddy humour. But I quickly realized from the crack in his voice that this was serious. I will always remember that moment, when I could hear the pain in his voice, telling me that Foster has leukemia. My brain, my heart, still wouldn’t process it though. I must have told him multiple times, “This is not funny. This can’t be true. This cannot be the ‘what else.’”

The New Us

“What else” turned out to be high-risk B-cell acute lymphoblastic leukemia. Leukemia is a cancer of the blood that starts in the bone marrow. The leukemia cells invade the blood quickly (acute) and if not treated, they could be fatal within a few months. These leukemia cells were overcrowding Foster’s blood system and his blood just couldn’t function or develop properly.

When Foster was admitted that night, his immune system was non-existent. His little body had no defense. That leg pain? An infection in the joints of his foot. Those bruises? Low platelets. The fatigue? Low hemoglobin. All of those flus and sinus infections? Illnesses that he couldn’t fight off adequately. My little one was going through so much and we had no clue.

Within a week, Foster had three surgeries, MRIs, ultrasounds, ECHO and EKG exams, two blood transfusions, IV antibiotics, a bone marrow aspirate and his first IV chemotherapy. His leg, or actually, his foot was getting worse. The antibiotics weren’t helping and they needed to flush out the joint to remove as much infection as possible, before it moved into the bone and into his whole system.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

It seemed ridiculous to me, that we were going to start treatment when he was still fighting the infection in his foot, but now I get it. Now I realize that every day that we didn’t start killing off the leukemia cells was another day that Foster might not respond to treatment. The infection in his foot was now physically visible. It was red, swollen and hot, it was real. The leukemia we couldn’t see, but it was worse. Time was of the essence.

February 1, 2016, the first day of treatment – the first day of what will be over three years of treatment. In walk two nurses, although they looked more like blue aliens. They were wearing what looked like blue hazmat suits – gowns, masks, eye protection, gloves. One carried a small plastic pouch. The pouch looked innocent enough, like antibiotics or something, but it contained volatile poison. They checked and double checked the ID bands. They hooked up this “medicine” to Foster and it broke my heart. Our 30-pound little boy was getting chemotherapy. This doesn’t happen to little kids. This is now our new normal.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

The Frontline

Our new normal included hospital admissions, febrile neutropenia (fever and low immune system), lumbar punctures, chemotherapy port placement, tests, scans, blood transfusions, antibiotics, steroids, IV chemotherapy, intrathecal chemotherapy, oral chemotherapy, bone marrow aspirates, physical therapy, occupational therapy, neuropsychological evaluations….

Our new normal meant being isolated most of the time. Isolation in the hospital and isolation at home. There was no school, no play dates, no events, no parties, no playgrounds for Foster. There were lots of disappointments, cancellations, fear, loneliness for Kaidence. We couldn’t plan anything because we never knew when we would end up in the hospital with a fever or infection. We couldn’t run errands or have friends over because the risk of infection was too great when Foster was neutropenic (extremely low immune system).

We now have anti-bacterial gel in every room of our home. A suitcase pre-packed and ready to go at a moment’s notice for admissions to the hospital. The first sign of a cough or runny nose and that person is isolated in a room until there are no more symptoms. Our family is strong, but more often than not, we weren’t able to be all together at the same time. One parent was always at the hospital with Foster and the other at home with Kaidence.

The frontline is intense. For us, it lasted about ten months. Every day felt like we were walking in a field of land mines and we were doing our best avoid them. In those ten months, Foster had multiple infections, which required IV antibiotics and hospital admissions. Each one just as scary as the next. The possibility of having to delay chemotherapy was real, as was the possibility that he may never recover from the infection. If the leukemia itself didn’t take Foster, the infection could. Every day felt like we were walking in a field of land mines and we were doing our best avoid them.

The Future

We made it though. Foster is now in maintenance, which consists of 12 cycles (each about three months long). We reached the maintenance milestone on November 10^th, 2016. For the first four cycles of maintenance Foster takes oral chemotherapy every day, a steroid pulse for one week each month, intrathecal chemotherapy via lumbar punctures once every two months, IV chemotherapy once a month and IV antibiotics once a month. We reach cycle five this October, where everything is the same except he has intrathecal therapy by lumbar puncture only once each cycle.

Foster was able to return to school during maintenance. Now we’re able to venture outside the house without worrying so much about the land mines. They are still there, but not as many. But Foster has still missed more than 50 per cent of school days due to hospital appointments, illness and infections. Now, the hospital visits are less about the chemotherapy and more about the effects of chemotherapy on his body and mind.

The future is scary. The survival rates and relapse rates for his type of leukemia are scary. The late effects of chemotherapy are scary. Everything is now scary to us, be it a bruise, a low fever, a runny nose, a bump, a rash, a cough. Anything can send us into panic mode.

But the future is also brilliant. We have two wonderful, amazing little kids who you can’t but smile and be happy around. Their inner happiness and brightness just radiates and it is contagious. I can handle that kind of contagion. Every day is a day we are grateful for having our children with us. I know the future holds great things for both of them. They are going to do great things. They are the future.

Thank you

Brian and I, our family and our friends had no previous experience with childhood cancer. It was like we were suddenly on a lifeboat, drifting in the ocean, trying to find a place to land. We were isolated. When you have two very social and extroverted children, this is heartbreaking.

Even in Foster’s current phase of treatment, maintenance, there are still many birthday parties, play dates, school days, events that have vanished. But that is where Kids Cancer Care comes in. Both Foster and Kaidence went to Camp Kindle this year for the first time. Seeing and hearing them connect with other children and siblings is something I will never forget – and neither will they. Kaidence cried on the bus ride home from Camp Kindle because she didn’t want to leave!

As you can imagine, I have struggled with anxiety since diagnosis. Both Foster and Kaidence have been next to me, or next to someone I absolutely trust, every second of every day. There is no way I would even consider sending Foster or Kaidence to any other camp. Camp Kindle is our family’s island where we dock. Knowing that both kids were in amazing hands at Camp Kindle helped me to let go. Just a little. Well, maybe just a millimeter. And that is thanks to the many generous people who support Kids Cancer Care.

No one wants to be a member of the kids’ cancer club, but I have to say the members are the most wonderful, caring, generous, heartfelt people I have ever met. From the cyclists in Tour for Kids, to the staff and volunteers, to the families, the businesses and donors, you are beautiful. Without you, we would still feel isolated. But because of you, we feel and experience understanding and inclusion. From isolation to embracement, all because of you. Thank you.

~ Candace, Foster’s mom

Foster’s photo gallery

I’ve often thought that someday I should go back to the beginning and read and print all the saved emails, print out all the stories I’ve shared on the blog I started to keep friends and family in the loop when Macey was diagnosed with cancer. Writing this piece for Childhood Cancer Awareness Month seemed like the perfect opportunity to start this project. So I printed 176 pages of the blog and then started reading over emails. It brought me to tears. And it brought me back to the beginning. The beginning of what seemed a nightmare.

The little tidbits I read were enough. I’m not ready yet. I will be someday, but not now. I’m not ready to read every word yet. It feels like a long time ago that we were at the beginning, but reading back in time, it also feels fresh—that time of sinking heart, amazing love and the start of a great, big, awful battle.

My ‘give-chemo’ alarm just went off. It’s become so normal, but I do remember the thought striking me many months ago that not every mom has alarms to remind her to go upstairs and administer oral chemo medicine to their now three-year old daughter. I also remember how quickly I went from feeling lost and new to the cancer journey, to feeling like I should somehow comfort others who had just received the horrific news that their baby or child has cancer.

The worst night of our lives was Monday, December 1, 2014. On that night we arrived at the Alberta Children’s Hospital in Calgary with our daughter Macey, who was 21-months old. She had slept the entire day. She also had bruising on her face and body that wouldn’t go away and, over the weekend, she’d had some mild nose-bleeds. For three months prior, she had also had a series of illnesses that wouldn’t let up — an extended hospital stay for what they thought was dehydration/infection, a lymph node infection that landed us in emergency. Macey had stopped crawling and did not like to be put down, probably because of bone pain we were unaware of.

When we arrived at the hospital, Macey was the pale colour of the hospital walls and she was lying over our shoulder like a rag doll. She was limp and lifeless. The triage nurse ushered us in immediately to see a doctor and our hearts felt the impending doom of something serious.

That night of tests was excruciatingly long. It was so difficult to get blood samples. Macey ended up looking like a pin cushion and was poked in every possible location multiple times — feet, hands, elbows, head. They had many people and specialized teams attempting. There were X-rays and tests with names I cannot even remember now. We walked her and rocked her and tried to soothe her.

A lovely doctor came in around midnight and suggested we sit down. I cannot even write this without reliving that life-altering moment and the emotion that came with it. She told us, with tears in her eyes, that our daughter had leukemia. Cancer. Our baby. They don’t belong together. We were devastated.

We didn’t sleep that night and were transferred to the ICU because Macey was having some complications, including pneumonia. It took a few days to isolate what type of leukemia she had and to start treatment. She was so sick that they couldn’t administer chemo until her health had improved. It is possible that if we hadn’t taken Macey in on December 1^st she may not have woken up the following morning. That is how low her red blood cell count was at that point. She was diagnosed with high-risk acute lymphoblastic leukemia and she received her first dose of chemo on December 4, 2014, which was my birthday—one I will never forget.

Not only are those initial days a blur, but also the last year and half. There are some things I remember, such as when she lost her first tuft of hair. I remember the generosity and kindness of family, friends, and strangers. My husband Josh’s office created The Macey Project and showered us with support in practical, financial and emotional capacities. They continue their support today and really seem to understand that the burden of childhood cancer is carried for much longer than at the front end of diagnosis.

Macey spent the entire month of December in the hospital and, later, at a friend’s home in Calgary, so we could be closer to the hospital (a total of seven weeks).We have two boys, Hudson and Sawyer, who were five and four years old at the time. It was difficult for them to have their mom and baby sister gone for such a long time. Even harder than that first month, were the many months to follow where, at any given moment, Macey and Mom were off to the hospital.

Fevers and illness came often and came at inopportune times. The logistical nightmare of childhood cancer is something so real for families. Having to pull yourself away from your boys, who are clinging to your leg in tears, to take your sick daughter to the hospital, is heartbreaking. Missing fun things or planned things or things the boys would have enjoyed became par for the course. For example, in May 2015, I wrote in our blog: “Today Hudson (my oldest) turns 6. And, sadly, we are doing present-opening over FaceTime because Macey ended up at the hospital with a fever.”

After six months of treatment, I wrote: “It has been 6 months now since Macey was diagnosed on December 1, 2014. I cannot believe that amount of time has gone by. If one way of measuring life’s success is based on accomplishments, travel, fun adventures, books read, or miles run, we don’t have too many successes to speak of. But, our yardstick has changed. And, if you measure our success in smiles and strength from Macey, milestones that she has newly reached, and pure survival of our family unit, then I think we are successful. Praise God for getting us to this point.”

We attended the Kids Cancer Care Parents’ Quest for the Cure gala in March 2015 (and we had the privilege of attending again in 2016). At the gala, they played a video — the sad and touching kind of video that makes you wonder why the injustice of kids having cancer exists. It was in that moment that I realized I was living that. We were one of those stories. We had lived a blurry three months of holding a bald baby and watching her suffer and fight. And fight she did. Her strength is inspirational. At that gala one of the speakers was talking to us at the end of the evening and encouraged us several times to not overlook the impact this was having and could have on our boys. That stuck with us and from that moment on we took advantage of all the Kids Cancer Care opportunities we could.

Kids Cancer Care gave my boys a reason to smile, while their parents lived a distracted life. Acquaintances and friends did that too — taking our boys for a day or a night or for a fun activity. They’ve been able to attend many fun things courtesy of Kids Cancer Care, such as camp, Family Ski Day, the Polar Express adventure, and more. Macey even got to experience two days of camp this summer, 2016!

Sawyer and Hudson joined Kids Cancer Care for a week at our SunRise day camp this summer. Macey was sick, so she could only join us for two days.

“Two days with Macey gave me enough magical moments to fill an entire year,” says Jenna Schwanke, childlife specialist at Kids Cancer Care. “Macey’s mom hadn’t planned on her going, because she’d just fractured her leg the night before, but we assured Mom that we had the support to care for her and, if Macey was up for it, we were definitely up for it.”

In her purple tutu and orange cast, Macey was carried in the arms of one volunteer after another. She later joined in on the activities as best she could.

“Amid the pain, she giggled and laughed and became our little hero of the day on Friday,” says Jenna. “I was blown away by the support of her big brothers. No distance was far enough to prevent these little guys from hearing Macey call their names, to which, they came a running and rushed to her side. The three Bangsund kids make up one incredible team and we can’t wait for Macey and her brothers to return for a full week of camp next year.”

There are Beads of Courage that Macey has been collecting since the beginning. This is also a Kids Cancer Care initiative and it is an amazing way to tell her story. It is a visual representation of all that she has endured. There is more treatment left for Macey and yet she already has 500 beads. These beads are different colours and shapes, each representing a medical procedure or milestone such as blood transfusions, needle pokes, surgery, chemo, hospital overnights, hair loss, lumbar punctures, X-rays, MRIs, birthdays, isolation, clinic visits, and more. One day, when she is older, Macey will learn all about her strength, represented by these beautiful beads.

The unpredictability and disruptiveness of life with childhood cancer has been a lesson in disguise for our family. In the very early days we learned that our plans are not our own. We are not in control and the strength we need to brave this journey would be provided in small doses by a force much greater than the strength we could ever muster on our own. We learned to live in the moment in a way that only something like this can teach. Joy could be found in heartache and hope was hidden in the darkness. The support around us bolstered us and helped us crawl through the unknown life-territory we had been forced to travel.

The sensitivity and love of Macey’s brothers is something truly beautiful. I’ve heard her oldest brother Hudson say a couple of times, “I wish it was I who was sick instead of Macey.” I wrote in the blog in September of 2015: “They are learning compassion and patience in a way that no 5- or 6-year-old should have to. I am learning the same. My daughter is learning strength and resilience, while teaching the same to me. She shows the doctors and nurses and strangers love, because somehow she has love to share.”

There were many hospital stays, scares, and dark times. Even with all the support it can feel like a lonely journey. Sometimes hospital stays would be reminiscent of the beginning, her being so sick. She lost her hair, it grew, and she lost it again. Now it is amazing and beautiful and has grown so much! It is almost time for a ponytail. I still remember the day her immune-fighting cells were of a count high enough that I could take Macey to Walmart or Costco and the joy that filled my heart. Oh, to show off my beautiful daughter and not have her isolated from the world! This is a mundane activity that became a great pleasure. Contrast that activity with Macey being on a morphine infusion (through IV) to manage pain, along with IV nutrition to give nourishment, and you see how amazing these small victories are!

This year, we saw Macey take her first steps, which was very exciting. She also climbed our stairs for the first time in July, 2016. Her words are coming now and it is the cutest thing to hear: Music to our ears. She has a mind of her own and lets us know what she needs and wants. Any mess she makes in our home is welcome because it means she is home and healthy and making a mess, like a regular toddler. We are thankful for the messes and we are thankful for how far she has come and the battle she has most valiantly fought so far.

You don’t come through this and remain the same person you were. Things change — perspective, priorities, friendships and more. As I wrote in my blog on July 15, 2016, “Sometimes the joy gets overshadowed, but writing this snapshot today, celebrating Macey, reminds me of all of the good — of how far Macey has come. There was a time not long ago, where there wasn’t a toddler trail of toys all over the house and where hospital stays were more prevalent than milestones. Watching Macey trouble-make, mess-make and noise-make is what dreams are made of. My prayer is to not lose sight of that. Some days the gloom overshadows the joy, but the real miracle is Macey and watching her develop into a delightful, beautiful and loving child.”

Caitlin Joyce, Macey’s Mom

You can view Caitlin’s complete blog on Macey’s journey here

Macey’s photo gallery

The Cancer Knowledge Network, an online cancer resource, asked writers and editors to share with readers what September means to them. Here’s what Trisha Paul, a medical student at the University of Michigan Medical School, had to say:

Painting wooden figures is an all-time favorite craft for kids at C.S. Mott Children’s Hospital. Five years ago, a little boy with no hair sat beside me, splotching gobs of glittery paint atop a dragon made of wood. I don’t remember the boy’s name, but I remember his face, his kind eyes. When his mom came to get him from the playroom after he had been discharged, he turned to me. “This is for you,” he said. And before I could respond, he had bolted out of the playroom and was halfway down the hall, his left arm reaching up with little fingers curled tight around his mother’s hand.

I will never forget how moving it was for me, how touched I was by his altruism. This little boy, genuinely selfless, didn’t think twice about giving me his carefully crafted creation. He wanted a complete stranger to have it. Children like him inspire me.

September may be over, but not a day went by that I didn’t think about Childhood Cancer Awareness Month. Throughout my journey in medicine, although childhood cancer has been a cause that I’ve been passionate about for many years now, I have tried to keep an open mind about my career selection. But I’m the kind of person who has always known what I’ve wanted. This is who I am, and this is what I am about. I am determined, now more than ever before, to pursue a career in pediatric oncology and palliative care. I want nothing more than to dedicate myself to improving the lives of these children and their families in any way that I can.

But September is not about me. September is about all the children around the world diagnosed with cancer. All the loving parents devastated by the news. The siblings struggling to understand. The families that suffer so deeply. September is just one month, and 30 days is not nearly enough.

“Let’s face it. It’s not ok. It’s not ok that so many children, instead of starting school in September, are being diagnosed with cancer. So many children are spending their days in and out of hospitals instead of in classrooms and outside playing tag at recess.”

September reminds me just how important the cause of childhood cancer is to me, and how important it should be to all of us. Childhood Cancer Awareness Month celebrates the great strides that we have made in caring for children with cancer and, at the same time, looks ahead at the great challenges that remain. This month calls for reflection about how the landscapes of awareness, research, policy, and clinical care have all evolved with time. And, how much farther we still have to go.

The dragon sits atop my bookshelf. It reminds me every day of the little boy who taught me how to be selfless, who showed me the meaning of altruism even if he didn’t know what the word means.

So many of these young patients and their families have touched me over the years. I hope that I can someday return the favor, that I can touch the lives of those affected by childhood cancer with my own version of “glittery dragons.”

~ Trisha Paul

What does September mean to you? Tell us by clicking the Share Your Story button below!

Ms. Paul’s post is part of larger series by the Cancer Knowledge Network called What September means to me. To view more posts about from this series, please click here. 

Trisha Paul is medical student at the University of Michigan Medical School with a B.S. in Honors English, who aspires to become a pediatric oncologist and pediatric palliative care physician. She recently published the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer and she chronicles her explorations in learning, researching and teaching about illness narratives at illnessnarratives.com.

It all started with extreme pain in my back and knees. What I thought was just an injury from playing volleyball turned out to be a tumour in my abdomen. The tumour was massive. It was 20 by 10 cm—about the size of a cantaloupe. I was 15 and had to quickly come to terms with the fact that, not only was I dealing with cancer; I was carrying around a 15-pound tumour in my abdomen that I hadn’t even noticed growing.

They called it neuroblastoma, a type of cancer that forms in nerve tissue. In the beginning, I had no clue what neuroblastoma is but, over the past three years, I’ve learned all about that and more.

My doctors at the Alberta Children’s Hospital had to come up with a plan of attack and that meant I had to go through four rounds of chemotherapy. But after four rounds of chemo, the tumour still wasn’t shrinking. That was bad news.

Fortunately, surgery was still an option. But the tumour was wrapped around my aorta, so that was extremely bad news.

But my surgeons fought for me and they didn’t give up. They put their heads together and decided they would try surgery in the hopes of getting as much of the tumour as possible—even if that meant removing only a portion of it.

I honestly can’t imagine how they felt going into surgery that day. I mean, I was gonna’ sleep through the whole thing. They had the hard part.

Well, if you can believe it, after 14 hours, my amazing surgery team was able to get the whole thing!! Imagine the skills and patience it took to do that. No one could believe they got the entire tumour. It was incredible news and a TOTAL game-changer!

Before surgery, I had asked them to take pictures of my tumour for me. And they did! Not like a selfie or anything. I can assure you it was all very professional.

Following surgery, I had to spend five days in ICU. Believe it or not, one of the hardest parts of my entire treatment was lying in bed with a breathing tube down my throat and not being able to talk for FOUR days! It was agony. It was the quietest I have ever been!

Even though, today, my cancer is gone and I am cured, I made friends who didn’t survive. And, that is why supporting pediatric cancer research through organizations like Kids Cancer Care is so important. It’s about saving EVERY kid. And making sure they survive with fewer side-effects from the very treatments that saved them.

So I survived cancer and people call me brave. I guess so. But imagine how daunting it must have been for my surgeons to go into that operating room. Imagine the skill it took to take out the entire tumour and not damage my aorta.

Imagine the pressure.

And the surgery is successful! But their job’s not done. Now, they have to ask me if they can have my tumour for research—to help other kids.

They did ask me. And I have to be honest. I hesitated, just for a moment, only because I kinda’ wanted to keep it myself. Like maybe get a shadow box for it and keep it in my room. That might have been cool. But then I realized my tumour would do more good in the hands of world-class researchers, so of course, I said they could have it.

I was given the opportunity to visit my surgeon Dr. Paul Beaudry in his research lab. He is studying my tumour to invent new treatments that will help kids like me in the future.

Dr. Beaudry is what they call a clinician-researcher and is part of the Experimental and Applied Therapeutics research initiative, which Kids Cancer Care helps fund, at the Alberta Children’s Hospital Research Institute and the University of Calgary.

What’s cool is that what he learns from my tumour can be applied by cancer researchers, not just here in Calgary, but all over the world.

So basically my tumour is famous!

In all seriousness, these amazing people helped me. They accomplished the near impossible and they gave me my life back. I am alive today because of medical research and modern health care.

Since surgery, I have been recovering and getting back to doing the things I love to do. I’ve have had to alter my life in more ways than one since my diagnosis. I stopped playing volleyball, which I never thought I would have to do, but that missing piece from my life has now been replaced with things like going to Camp Kindle!

I was told all about camp while going through treatment. Every time I went to the hospital, my nurses would tell me: “You have to try it! At least go for one weekend and give it a go.” I was very hesitant to go though because I would know no one.

I finally decided I would go to Teen Camp and try it out. My mom signed me up and next thing I knew I was on a school bus heading out to Camp Kindle. Everyone had friends; they were all really close and I didn’t know anyone. Not knowing anyone at camp is like walking into school as the new kid. But soon enough I was a part of everything going on. They made me feel as if I had been going to camp for a long time! It’s hard to express exactly how they made me feel included or what they did to make me feel welcome, but they just did. Everyone is so kind and cares about each other. There wasn’t just one thing they did to make me feel a part of camp; it was the many little things they did throughout the weekend, like hanging out with me, sharing stories, laughing, showing me around and sharing camp traditions with me. By the end of that weekend I didn’t even want to go home!

Since that first weekend of camp I have continued to go! I have met so many amazing people who I have stayed connected with outside of camp too. These people mean so much to me, because we can connect in a way that I am not able to with other friends. We have all been through similar situations and we have all changed because of it. I can tell my friends from camp anything and I know that, no matter what, they won’t judge me. Even if I do something really funny and embarrass myself, because I’m good at that, I know they are there for me. They all have such big hearts, great personalities. They are hilarious and that is only the beginning of the long list of things they are. I can’t imagine my life without them anymore because they mean so much to me.

I am so thankful for the opportunity to go to camp because it is a place where cancer doesn’t define me. I can just go and be with people who are now my best friends. Camp Kindle is a place where you can feel comfortable and you are able to forget about what is going on and just have fun! It doesn’t matter what stage of your cancer journey you’re in, you are always welcome and accepted no matter what! It doesn’t matter if your family can’t afford it because you don’t have to pay for it, which is all thanks to people in the community who donate or raise money, so kids like me can go to camp.

Camp also opens up so many doors for everyone and it has opened many doors for me. For instance, the Teen Leadership Program, where we volunteer at many events such as Kids Cancer Care’s Dad and Daughter Gala and Parents’ Quest for a Cure gala. I’ve been involved in Teen Leadership for the two years. We get to work on our fundraising skills and raise funds to travel over spring break to help impoverished communities in developing nations. I have been incredibly lucky to have gone to El Salvador on spring break of 2015 and the Dominican Republic this past spring break. These trips are so eye-opening and have made me grow so much. They are such an amazing experience and I am beyond lucky to have been able to participate on them.

It’s not only through research and camp that Kids Cancer Care helps families like mine.

1. For starters,PEER This is an exercise and physiotherapy program for childhood cancer patients that helps us regain our strength and get back to doing the things we love.

2. Through their Cooking and Caring program, Kids Cancer Care also delivered home-cooked meals to our family, so my mom didn’t have to worry about cooking for a while. Imagine a freezer full of food. That was us.

3. And I was fortunate enough to receive a scholarship from Kids Cancer Care in June 2016, so I can further my education and achieve my goal of becoming a psychologist. I started university this fall.

Being part of Kids Cancer Care and everyone involved is truly an amazing community to be part of. They all support you and make sure you are doing well in a hard time—and even AFTER the hard time.

We should all be grateful to be a part of a community that gives us a sense of warmth. It makes everyone’s journey so much easier to deal with and no one is ever alone.

Kids Cancer Care is a big family and we all have one common end goal—to make sure everyone has a sense of belonging when going through cancer. I don’t know what I would do without Kids Cancer Care because they have done so much for my family and opened so many doors for me.

When I was sick, there were fundraisers held in my honour, but that’s because people knew me and knew about my cancer journey. They were my friends and family.

The fact that people in the community choose to help kids like me, doctors and researchers by supporting Kids Cancer Care—so many people you don’t even know—means so much to me. It’s truly amazing. I can’t thank you enough.

Thank you!

Maddie

View Maddie’s digital story here

Maddie’s photo gallery

I was a registered nurse with many years of experience in child and adolescent mental health when I moved to Honolulu and was offered a position as the Family Support Nurse in the pediatric units at a hospital there. Much of this position involved working with all the children and families who were diagnosed with cancer. This meant meeting them and working with them from the time of diagnosis, through treatment and to whatever outcome resulted. We always hoped for the best outcome, but in the mid- to late 80s, and even today although less so, this outcome sometimes meant being with them while their children were dying or had died and working with them afterwards as they faced learning to live with a lifetime grief.

I have so many memories of those years in Hawaii and the lessons I learned from the children and families stay with me today. I remember playing with John in his secluded hospital room after his bone marrow transplant, when he declared that he wanted his hair to grow back yellow this time, like Auntie Nancy’s. I remember sitting with his mom and dad as they held his body for the last time. Though they did not speak a word of English, nor me a word of Vietnamese, we shared a language no parent wishes to learn.

I remember standing on top of Punchbowl at the graveside, surrounded by Amoe’s family, purple leis and purple balloons, as we watched her ashes return to her great grandmother buried there. I stood with her mom, watching a group of purple balloons break away from the tree and float towards the city of Honolulu and the brilliant blue ocean, hearing her mom say “There she goes.”

I remember, as well, the laughter of kids having fun in the hospital where you might think fun and laughter never happened. It did! And I remember kids leaving the hospital with their futures bright before them. I hear from those kids from time to time still (almost 30 years later). Marsi, beautiful as a teenager with cancer, now married, with children, no cancer!

And Wendylee, whose letter and class photo came to me after I returned to Canada, stays with me still, faded on pink paper.

My work in this area has marked me in so many ways, or more correctly stated, the kids and families have marked me forever. They continue to speak to me as I pursue research in trying to understand and make living better for children and families experiencing cancer. My life’s work.

— Dr Nancy J Moules, RN, PhD. Professor, Faculty of Nursing, University of Calgary, Kids Cancer Care Foundation Chair in Child and Family Cancer Care

Watch a webinar on Nancy’s research here 

Visit Nancy’s University of Calgary Faculty of Nursing webpage 

Nancy’s photo gallery

Jack was a normal 10-year-old boy. He enjoyed playing hockey, downhill skiing, riding his scooter, swimming, camping, hiking and playing with his friends. In the summer of 2014, we realized a long-time dream and relocated our family to Canmore, Alberta. It was a bit of an adjustment for our sweet Jack, but over time, we thought he was settling in fine.
In the spring of 2015, Jack started to seem different. He was experiencing unexplained pains and was very sad and tired. We organized an appointment for him with Alberta Mental Health, but couldn’t get in until early August. He finished his school year and in an effort to boost his mood, we kicked off the summer with a celebratory mountain bike ride on one of our local trails. This ride was followed by trail-hikes with friends and more mountain-biking as we headed into the holidays. Jack finished each outing but seemed more tired as the days progressed and each activity became more of a challenge for him to complete.

Shortly after Jack’s 11^th birthday in July 2015, we ventured off on our annual summer camping trip, which included travel down to Montana and Idaho. Soon after we left Canada, Jack developed massive pain in his back. We debated turning around and going home, but felt the pains were related to his mental health. We tried to manage the pain and kept encouraging him to be active in an effort to help manage his mood. He persevered but we knew he was struggling.

After two weeks away, we arrived back in Canmore to find that Jack’s back pain was not going away. We arranged a doctor’s appointment for the next day. The doctor checked Jack over and then sent him for a back X-ray and bloodwork at the Canmore Hospital. Meanwhile, we waited for the results but suspected the pain was more related to his mental health. That evening Jack said to us, “I hope they find out what it is, but at the same time, I hope they don’t because I think it might be something serious.”

The next day, the phone rang and our lives were changed forever.

Jack’s X-ray showed a collapsed vertebrae and the results of his bloodwork were also concerning. The doctor had already contacted the Alberta Children’s Hospital as he suspected it might be leukemia and we were told to take Jack there right away. It was so difficult pretending that things were fine so as not to alarm Jack, while at same time, feeling like your whole world was falling apart.

Jack was admitted into emergency at the ACH and eventually we met with the hospital’s oncology team. They told us that based on his symptoms they suspected Jack was battling leukemia, but they wouldn’t know definitively until they had the results from a bone marrow test scheduled for the following day. Jack was terrified of cancer and had fainted earlier that year at school at the Terry Fox Day presentation. We knew we had to be cautious with how much information we shared with Jack and how we shared it with him.

It was a terrible 24 hours before the bone marrow biopsy. I stayed with Jack in his room and Mark was able to get a bed at the hospital since the Ronald Macdonald House was full. Our friends graciously brought us food and arranged care for our dog back at our home in Canmore. We tried to keep a positive outlook, but Jack was scared and tired and it was so very difficult not knowing what was to come. They prepared Jack for the biopsy and he was terrified. It is so hard to see your child wheeled away from you, and as special as our health care workers are, they were still strangers to him. The oncologist came to see us during the biopsy and explained that it was challenging to get a bone marrow sample, so they were pretty sure that it was leukemia. Eventually they were able to confirm that evening that our precious boy was in fact battling acute lymphoblastic leukemia.

We were all in a daze and Jack was definitely upset. The days following were filled with questions, surgeries and the start of chemotherapy treatment. Jack didn’t want to hear anything about what was going on with him and we watched as he began to sink into depression. The nurses, doctors and other health care professionals were amazing and they tried hard to lift his spirits but nothing seemed to work. He struggled to move as the collapsed vertebrae caused him so much pain. We were terrified to bring him home, as we didn’t know how we were going to move him through our stair-filled house. We were terrified as we learned this new cancer language and tried to figure out our new normal. We were all so scared and didn’t know how we would get through all of this.

But we did get through. And Jack’s spirits rose when he finally was able to come home.

It’s been a year of ups and downs though. As the initial shock of the diagnosis wore off, there were many days filled with anger, sadness and loneliness. We felt like we were either at the hospital, on the road driving to or from Calgary, or at the gas station filling the car up. It was not the life we envisioned for our 11-year-old boy. He desperately missed going to school, going to a movie or playing with friends. He wanted to play hockey and go swimming. All of this now had to be put on hold.

We tried our best to keep things as normal as we could for Jack. His school enrolled him in online classes, so we started teaching him at home. We took him to hockey practice and his dad held on to him, while he finally gained the strength to skate on his own again. And we took him skiing. We pointed out all of the adaptive skiers on the hill and we told him, “Look at those people with no legs and arms. It’s not stopping them. Cancer doesn’t have to stop you.” And it didn’t stop him. He skied 35 days over the winter, even though at times, he was receiving chemotherapy four days a week! It was the perfect place to be because we could manage his contact with other people —a big concern when your immune system is compromised by chemotherapy. He loved the freedom of being on the mountain and racing down the hill. Skiing was our lifeline.

Our other lifelines were the activities Jack was able to do and the celebrities he was able to meet because of organizations like Kids Cancer Care. Just when we were finding that his mood was low, an activity seemed to present itself, which would completely boost his spirits. The biggest night of his life happened on October 30^th, 2015. It was the only day that Jack’s beloved Montreal Canadiens would be playing in Calgary for the season. We contacted Kids Cancer Care, and through their contacts, they were able to facilitate a meeting with Jack’s favourite players from the team. As we were leaving the Saddledome after the game, Jack said, “I’m kind of glad I got leukemia, because if I hadn’t, I would never have met the Canadiens!”

It’s truly amazing and inspiring to see and meet so many wonderful people dedicated to providing these wonderful opportunities to children like Jack. We have gone to a night at the theatre, ridden the Polar Express, learned to snowboard and cheered on our local hockey and football teams.

And then there is Camp Kindle. Amazing Camp Kindle. Jack’s first camp experience was this past summer, about a year after his initial diagnosis. It was his first sleepover camp and it was nothing short of amazing. After we picked him up, we heard stories continuously for two hours and I don’t think the smile has gone away from his face since! It’s a magical place where childhood cancer warriors can go and be kids and their parents can rest easy, knowing their precious children are safe.

To date, Jack has had over 80 chemotherapy injections and has taken well in excess of 300 pills. Jack’s cancer treatment will be complete in December 2018. It is a long time to be on treatment. He can’t swim in the ocean or lakes and we always have to be aware of his environment. We’re also unsure of what the long-term effects will be on him — how the medications will impact his physical and intellectual growth and his interactions with others. But Jack knows that it’s important to keep fighting and try to raise awareness of childhood cancer. He likes to say, “Cancer. You messed with the wrong guy!” His words are so true. Cancer has not stopped our kid. Cancer has not stopped our hero, Jack.

–Cheryl, Jack’s mother

Jack’s photo gallery

Levi was diagnosed on June 8, 2007 with high-risk acute lymphoblastic leukemia. This was shortly after Levi turned 1 ½ years old, a baby in diapers. It was revealed by a simple blood test. This was the start of a hellish journey through childhood cancer.

Levi was diagnosed on a Friday and by Saturday morning he was going in for surgery to get a central line put in. A central line, or Broviac, was surgically placed in Levi’s artery in his chest and the other end came out of his chest. This allowed the hospital staff to draw blood from Levi and administer chemotherapy without poking him with needles every time.

Levi started the first of 5 phases of chemotherapy that Monday. The nurse came into the room with what looked like a Hazmat suit on. The chemo was so toxic she had to protect herself. I could not believe that this toxic cocktail was going to be put into my baby. I was told that I would need to wear protective gloves when I changed his diapers.

We were in the hospital for most of this phase, which lasted about 1 month. During this time Levi went through so much. He had an ultrasound of his heart, to establish a baseline of his current heart condition, because one of chemo drugs can affect the child’s heart. He had a couple bone marrow aspirations. This procedure involves inserting a needle into Levi’s hipbone at the back to extract bone marrow to test for leukemia cells. He endured many blood tests.

Levi started losing his hair about 2 weeks into treatment, so we decided to shave it off, as it was getting twisted around his fingers at night when he slept. He was crying the whole time we were shaving him and, when it was done, I cried too. Now he was bald and looked like a child with cancer; it was real. To this day, Levi likes to wear his hair long, or maybe it’s me. Long hair is the opposite of cancer.

Over the next 9 months treatment was intense. Levi started to feel the effects of the chemo; he got mouth sores, had trouble sleeping, had trouble peeing and pooping. He developed a fever, a rash, lost his appetite, threw up a lot, and became quite lethargic.

The goal of the first phase of chemo was to get the patient into remission and within the first month Levi was in remission, but treatment was far from over. This was barely the beginning. He still had 3 years to go. They said this long treatment plan has the best outcome. It was the only hope we had. We needed him to survive the treatment that was now killing his cancer.

Very early in treatment we had to call an ambulance because Levi woke up quite despondent. He was a rag doll and we could not get him to respond to us. It turned out it his blood sugar was too low; it was at 1.2, which is very low and not far from being in a coma or going into seizure. His doctors thought this was an effect of one of the chemo drugs and not a normal side effect. From that point on, I had to check his blood sugar morning and night, as well as at 3 am, each time having to do a finger poke on Levi. Thankfully we only had to do this for a couple of months. But it turned out not to be our last ride in an ambulance.

One thing we always had to watch was Levi’s blood counts. In particular, his white blood count. If this number fell too low, it would impede his ability to fight infections.To check this, they had to take blood or what we came to call a ‘pokey poke’ and test it in the lab. If the white count fell below 500, he would be what they called neutropenic and would need to go into protective isolation, which meant we would have to avoid contact with others more than we already were. Sometimes Levi’s red blood cells would be low too and he would need a blood transfusion. I always knew when he needed a blood transfusion, as he looked pale and wanted more Mommy hugs. This is one of the major effects of chemotherapy. While it is killing the cancer cells, it is also killing the immune system and therefore putting Levi’s life in danger. A very delicate balance needed to be maintained to be successful. It is a miracle that it works.

With Levi being immune-comprised all the time, he had to miss out on a lot of fun and all the things that kids should be able to experience. This is the saddest part of all for kids who have to go through cancer treatment. They miss out on so much. Levi missed important developmental milestones and because he was so young when he started treatment, I wouldn’t see the effects of the treatment until he was older and in school. And this is quite common.

My only focus as a parent at the time was to keep Levi alive and protected. The only thing I could control was his environment and to keep him as healthy and happy as I could under the circumstances. To keep him strong and healthy, I wanted to feed him, but the chemo made him throw up and not want to eat. It was a full time job getting breakfast, lunch and supper into him, only to have him throw it up sometimes. With each new phase of treatment, came a set of new chemo drugs. This meant that any strategies we had developed before to manage, may no longer work, so we had to come up with a whole new set of tricks. Most kids need to be put on a feeding tube because they lose too much weight. We were on the verge of that a couple of times, but Levi managed to avoid it.

While on chemo, they tested Levi’s heart, liver, kidneys routinely and if he ever got a fever, it was an immediate trip to the emergency room, where they did not leave us in the waiting room. We were taken into a room immediately and they took blood to test for infection and he was put on IV antibiotics. Kids have died because of blood infections, while being immune-compromised.

Even though we were not in the hospital full time, we had to go 4 or 5 times per week. Once we were in the maintenance phase of treatment, we were down to 2 or 3 times a month. We called these trips to the hospital for treatment clinic days. Sometimes they had some trouble getting blood out of his central line, so they had to ‘TPA’ it, which means they had to put some blood thinner into his line and we had to wait a couple of hours before they were able to get blood out. This happened to Levi with some regularity and added extra time to the treatments. After the blood work, came the chemo, the steroids, the intravenous antibiotics, the anti-nausea medication and, sometimes, other procedures.

One of the scariest procedures Levi had to go through was the lumbar puncture, or better known as a spinal tap. Levi was given ‘sleepy milk’ (anesthetic they gave him in his line) for this procedure. They would then take some fluid out of his spine to test to see if there were cancer cells hiding in there and in its place they would inject intrathecal Methotrexate (a chemo drug) into his spinal fluid. This got harder and harder for both Levi and I. He really fought the ‘sleepy milk’ and I would stay with him until he fell asleep. Every time, I would say a prayer and give the person doing the procedure a squeeze and say, “Have a good procedure.” Spinal taps are routine for leukemia patients, but they are a very serious procedure. He had a spinal tap about 30 times during his treatment. It never became routine for me.

By the time Levi was finished treatment in September 2010, he was 4 years old. He had spent more of his life on chemo, than he had off chemo. Levi was on chemotherapy for over 1,200 days, longer than some marriages! It is amazing these kids survive. I am still in awe of it.

Along with fighting for his life from leukemia, Levi survived H1N1, numerous viruses (RSV, HMV), numerous bouts of croup and loads of colds. He endured a couple of nose aspirations, many trips to the emergency room, blood transfusions, bone marrow aspirations, a couple of surgeries, lumbar punctures and a bronchoscopy. He’s seen pulmonary specialists, respiratory specialists, speech pathologists and sleep specialists. We did not go to malls, supermarkets, public playgrounds, public swimming pools, indoor public events or play dates. We avoided sick people. Levi had to bathe wrapped in Saran wrap and we used hand sanitizers at every turn. He had a helicopter parent. But he survived. It is a miracle.

I have not experienced such despair in my life. I was scared sleepless most of the time. It was Levi’s courage and the kindness of our friends, family, co-workers, Jamie’s Preschool, Kids Cancer Care and the staff at Alberta Children’s Hospital that carried us through. People have been incredibly generous and thoughtful to us. We have made new friends whose strength in their own struggles with cancer gave us courage and optimism to carry on. We have learned to live life one day at a time. I learned to live in the moment and learned that control is an illusion. I learned to celebrate the small victories. I would be lying if I said I am not scared. Life without chemo to keep the ‘bad’ cells away is like being a tight rope walker without a net, but we have faith that all will be as it should be and we pray for the strength to face what we need to going forward.

Childhood cancer is like war. You struggle through it and miraculously you survive. When it’s over you get up, dust yourself off and assess the damage around you. There is often a lot of collateral damage with childhood cancer. Giving chemo to a child as young as Levi can affect their brain development and their emotional well-being.

We’ve had psycho-educational and neuro-psychological testing done on Levi and they revealed deficits in Levi’s executive functioning, the region of the brain that regulates and controls cognitive processes, such as our working memory, reasoning, problem solving, planning and execution. As a result, Levi is struggling with math and spelling at school — not to mention pretty intense anxiety. It seems so unfair for a child to have to go through all of this and then have other problems afterwards.

When Bryan and I first broached the possibility of tutoring with him, Levi flat-out rejected the idea. But when we broached the idea of tutoring through Kids Cancer Care, he said, “That would be okay.” So he is now seeing a tutor Monday evenings through Kids Cancer Care’s new Education Support Program and we’re already seeing big improvements.

Levi feels comfortable challenging himself during his tutoring sessions at Kids Cancer Care because he associates it with Camp Kindle. This is a safe, friendly place for Levi to push himself and learn, without all the stigma of a regular tutoring service for him. I knew we were on the right track right away. After his first tutoring session, on the drive home, Levi turned to me and said, “I think it’s gonna’ be okay now, mom.”

Levi is 10-years-old now and has been going to Kids Cancer Care camps since he was able – around 3 years old. He has always loved SunRise day camp and is an outgoing kid – you may have noticed!

In 2014, Levi decided to give SunMaker camp at Camp Kindle a try. He had not been to overnight camp anywhere and had barely been overnight with anyone. Things started off really well. I didn’t hear anything from Levi for the first 2 days, but when I called Wednesday night, his counsellor said he’d had a rough day and he was experiencing some diarrhea. I was able to talk to Levi and he was distraught and very anxious, so I did go and pick him up Wednesday night.

Once home and having had a good night sleep and no more diarrhea issues, Levi wanted to go back to camp. At this point, we had concluded that this was not a virus, but rather Levi not going to the bathroom for a couple of days and then everything broke “loose” so to speak. They call this “camp belly.”  “OK”, we said, thinking he would be able to make it the last couple of days of camp and not let this negative experience affect him.

Well Thursday night we get a call from Levi saying, “I can’t do it anymore,” and really crying and upset and wanting to come home. This really is not like Levi to be so emotionally distraught. I knew there was a bit more than homesickness going on. He has had some mild anxiety since he was little, mostly things we noticed at home and, of course, having to do blood work and different procedures. But over the past year, he had really started to become super conscious of his body and his health. Unfortunately this bout of diarrhea was so frightening and, not being in the comfort of his home, really affected Levi to the point of not wanting to go back to camp again.

This experience in 2014 seemed to be the catalyst to more serious anxiety. He worried about any different sensations in his body. This carried over into the new school year and we decided he needed some help so we got him started with a psychologist. He has been doing well and has developed more coping skills and is very aware of his situation. In fact, he is hyper aware and this, in part, is what causes his anxiety.The psychologist believes he has PTSD (Post Traumatic Stress Disorder) from all the years of invasive treatment, and so needs to process all of his experiences.

He has been handling things well so we encouraged Levi to give camp another chance in 2015 and he reluctantly agreed. I talked with the camp personnel (Jenna, Mary and Janessa) and told them all that was going on with Levi and I asked them to let him call home if he needed to. I knew this would help him to have some control over his situation. He was having anxiety that he might have the diarrhea again and have the same experience as last year. He was having anxiety that he might have anxiety, if you know what I mean.

So August 10, 2015, Levi went to Camp Kindle. The first night I get a call, he is crying and more homesick than anxious. I walked him through it and said, “Let’s stay overnight and see how you are in the morning.”  Morning came and Levi is in the clinic trying to convince the nurses that he has a cough and a fever and needs to go home. Orli, the nurse, called and said Levi wanted to talk to me. He is trying to convince me he needs to go home. I try different strategies and let him know that, “If you were sick, they would be calling me to come and pick you up and you don’t need to worry about that.”  After a lot of coercing, he agreed to stay and went to the activities.

I talked with Orli again and asked her if I could get Levi some extra support, especially in the evenings. About an hour later I got a call from Lexi, the head counsellor, and Sophie, Levi’s counsellor, asking me what they could do to support Levi. We talked about all the things I thought would help and they were willing to try it all and said they would be in touch. I felt good that they were really on board and working hard to help Levi. This is awesome support.

That night I got a call from Levi, crying hard and begging me to pick him up. He said “Mom please, please come and pick me up, I can’t do it. I’m a wimp.”  I talked him through this and he said, “Mom tomorrow is Wednesday and that is when I had diarrhea last year.” The anticipation of Wednesday coming and the experience from last year put his anxiety into overdrive and I thought, “If we can get him through tomorrow, he would be able to stay the rest of the week.”  I talked with him intensely and I explained that last year he wasn’t paying attention to bathroom routine, but this year he was and that there should be no issues tomorrow. We talked at length. I am thankful there were no time restrictions on the call. He reluctantly said he would stay the night and that we would talk in the morning.

After my conversation with Levi, I was able to talk with Sophie again and she explained everything that had happened that day and pointed out a few opportunities that she gave Levi to decide things for myself, ex., “Do you want to call your Mom now or wait until after lunch?” So Levi chose to call later, small steps but effective. Sophie said she was trying all the ideas we talked about and thought it was helping. Other than the phone call to me, he did seem better than the day before. He’d had a sad period after lunch, but bounced back and got involved with activities whole-heartedly with the support of Sophie. Just so you know, I was completely struggling at this point as well, because I didn’t want to traumatize Levi with this camp experience. But I knew he needed to conquer this huge fear to move on. If I didn’t feel Levi was supported on the other end, I would not have been able to leave him at camp.

So Next morning came, no call; after lunch, no call; Wednesday evening, no call. So of course I am thinking, “Great! This is a good sign, right?” I decided to call Sophie and she said Levi had a great day. In the morning when he woke up he said to her, “I didn’t miss home and I didn’t miss you.” She said it was funny how he said it. He also said, “I think I can make it to the end of the week.” He got involved in all the activities that day and loved archery and was really getting into the day. Later that evening Levi did call home. This is part of that conversation:

Levi: “Hi Mom, I had a great day today!”

Me: “Wow that’s AWESOME Levi.”

Levi: “I didn’t cry today and I didn’t have diarrhea.”

Me: “Good for you hon, we are so proud of you for hanging in there. I knew you could do it.”

Levi: “Guess what, I did the flying squirrel today and tomorrow I am going to do the wall climb and when you get to the top, you jump off….”

(YIKES, OK Levi. Mommy just wants to know if you are having fun, not all the details ha ha.)

There must have been about 5 more “Mom and guess what…”  I could hear joy and confidence in his voice. He was proud of himself!! He had FUN and was finally enjoying himself. What a huge relief I felt for him and for us. It was so important that he make this turn and get this huge psychological demon off his back.This is big. This is a game changer for Levi. He has gained so much in this week that will give him the confidence he needs to know that he can manage his anxiety and that he can be safe in the world.

We would not have been able to make this breakthrough without the support of your staff and volunteers at Camp Kindle and, of course, the staff in the office, who we regularly talk to. I want them to know they are changing lives at Camp Kindle. Kids can develop and grow with their encouragement, commitment and support.There are small wins and big wins that will help change the trajectory of a child’s life forever. I believe this for Levi.

Thank you for this experience. We are so grateful and “Guess what?” Levi says “I want to go to camp next year!” That is a miracle!

–Cheryl Hamm, Levi’s mom

I started working in the field of pediatric oncology in 1998. As a University of Calgary nursing student, I did my 4^th year senior rotation at the old Alberta Children’s Hospital on Q Cluster. I’ll never forget my first shift there. It was a night shift and I had never seen such sick children. I couldn’t imagine ever becoming comfortable, let alone proficient, with the nursing care they required, nor could I imagine how I could be of any help to the families. But I knew I was home. I knew, somehow, this was my life’s work.

It’s funny, the memories that stick with you through the years. I don’t know why so many of my most vivid memories come from the night shifts. Bringing a cup of tea to the mother of a newly diagnosed child, who left the room, so her child wouldn’t see her fear, her tears; long conversations about the “whys” of cancer – “Why me? Why my child?”; listening to the teenager, who couldn’t sleep at night, talk about his video game and, every so often, as if almost by mistake, his fears about his future.

Most of these questions, I learned, were unanswerable. The point was to listen, to be there, to not be afraid of the sadness and the unanswerable questions. To show up in the face of something terrifying and somehow try to convey to these kids and parents a feeling of peace.

Over the course of several years, I worked my way through many of the positions in the oncology program. From staff nurse, to clinic nurse, to research nurse, and then eventually into administration. I used to joke that if you stay put long enough they’ll eventually let you run the place! My many positions and titles within the pediatric oncology program gave me a lot of insight into how the world of pediatric oncology worked and how I could best fit within it.

In 2006, we moved to the new ACH and that quickly became home for patients, families and staff.  Our new building was luxurious and world class, but part of me always longed for the comfort and coziness of the old hospital. My roots were there.

When it was time to return from my maternity leave in 2010, with much thought and a somewhat heavy heart, I decided to return to the University of Calgary to pursue a PhD. In 2013, I started as an assistant professor in the Faculty of Nursing at the University of Calgary, and I have had the privilege to focus my research program in the field of pediatric oncology.

I like to say I still work in the field of peds onc, just in a different way. Just like the memories I described, I’ve always been most drawn to understand experiences. How do kids and families get through this? What is the experience like? What can we do to make it a bit easier? I like to say I’m interested in the “Whys and Hows” of pediatric oncology. In academic terms, what I do is called psychosocial research. I like to look at ways to make the experience of childhood cancer easier.

For my PhD work, I studied the impact of cancer camp and found that it has profound healing effects on both children and parents. Now,

I’m studying the impact of digital storytelling on patients and survivors as way to further understand the experience of childhood cancer and as a way to teach health care professionals more about the experience, in ways they couldn’t have previously understood.

One child’s digital story hit the Twittersphere last fall and took off. This little guy has dreams of playing hockey professionally and one day meeting Sidney Crosby, so when the Pittsburgh Penguins heard about it, they made one of his dreams come true. He met Sidney after a game in Calgary last fall.

One of the courses I teach in my role as an assistant professor is a 4^th year undergraduate oncology course. I vehemently strive to impress upon students that the physical care is actually the easy part; it’s the psychosocial care that’s harder. They laugh at me, a bit nervously, when I tell them to trust me, that they’ll never go home and say, ‘I gave the hell out of those platelets today!’ So in my course, I try to spend as much time on the psychosocial needs and care that come with childhood cancer as I do with the pathophysiology and pharmacology parts, because quite honestly, we’re not where we need to be with respect to understanding, let alone addressing, the psychosocial needs of these kids and families. I’ve learned through my research that it sometimes takes decades for the psychological scars to show. The impact on these children later in life can be unfathomable. I want to work to change that.

 — Dr. Catherine Laing, PhD., Assistant Professor, Faculty of Nursing, University of Calgary