It isn’t always about the dress

For most girls, the high school prom is about the dress. What colour? What length? What cut? What style? Not for Gizelle de Guzman. For Gizelle, the occasion of her high school prom was the perfect moment to take a stand and make a statement that very few of us would have the hutzpah or charisma to pull off.

And so, dressed in a vintage-style ball gown, befitting a princess, Gizelle arrived at her prom totally bald.

Her reasons for going bald are perfectly simple.

“I have been affected by cancer in so many ways,” Gizelle explains. “I lost my mom to cancer when I was nine and then my stepmother followed six years later.”

Gizelle also has friends, of all ages, who have a history of cancer.

“Three years ago I met this girl, she was the most beautiful girl ever and she had cancer and her boyfriend broke up with her because of cancer: No hair,” Gizelle says. “It was her graduation and no one was asking her to prom.”

Shortly after, Gizelle had a dream that inspired her to show solidarity for young people with cancer. She’d dreamt about a bald girl in a beautiful grown on prom night. “How would it feel to go to prom without hair?” she wondered.

Gizelle couldn’t shake the memory of that dream and, three years later, she found herself registering her online profile for a Shave Your Lid for a Kid® event scheduled for June 23, 2016—just two days before her high school prom.

“I wanted to be able to say that someone is there for you and that the presence of your hair should not control how you feel walking across that stage,” says Gizelle. “I know I’ll be judged. It’s human nature, but that’s kind of the point.”

Gizelle’s courageous move didn’t only raise a few eyebrows at the prom; it raised a lot of awareness and attention locally and farther afield. Several local media outlets ran stories on Gizelle and people now stop her on the street to talk.

“Since I shaved my head, at least 10 strangers have asked me why my head is shaved, or if I have cancer, or just simply if I’m doing better,” says Gizelle. “It’s crazy how this simple change in my appearance can bring out sympathy in others.” This is precisely the response she was hoping to get. For Gizelle, shaving her head was all about the buzz it would create.

“I’ve wanted to do this for a long time,” she says. “I needed to do this.”

Originally from the Philippines, Gizelle and her family moved to Cremona, Alberta when she was 12. Fitting in was tough and she became the victim of small-town schoolyard bullies. She started to withdraw and became increasingly isolated and depressed.

Gizelle still struggles with post traumatic stress related to the extensive trauma and loss she’s experienced, but she is determined to get through it and, right now, she’s thriving.

Thanks to your support, Gizelle was able to find friendship and support at SunHaven, a camp program for young people who have a parent with a history of cancer.

“All of my friends, I met at Camp Kindle,” says Gizelle. “I met Melanie, my best friend, my first year at camp and we’ve been through thick and thin together. She’s honestly my sister now and her mom—well, she’s mine too. I have so many friends that I’ve kept in touch with from camp and it’s definitely kept me mentally strong. It’s a huge gigantic support system.”

Gizelle’s experiences at SunHaven inspired her to make Kids Cancer Care the recipient of her shave fundraising event.

“The first year, I was very frightened,” says Gizelle, recalling her first SunHaven camp experience. “I had all these negative thoughts that people were going to judge me, that I wouldn’t be accepted at camp, but it only took a couple hours to feel at home and now I look forward to it throughout the year. I’m honestly heartbroken knowing that it was my last year at camp, but I’m going to try and be a counsellor there one day. Camp’s taught me to see the good in people.”

In addition to raising more than $1,700 for Kids Cancer Care, Gizelle is hopeful that she may find some personal resolution through her courageous and compassionate decision to shave her head for prom night.

“Maybe it will provide some closure around my mother,” she says. “I like to think that by doing this, it was like she was there with me on prom night.”

Either way, the 17-year-old singer-songwriter is looking forward to a fresh start this fall at Dalhousie University, when she begins studies in accounting.

Thank you Gizelle! You are an inspiration and role model for so many. Thank you for holding your head high and taking a stand for young people with cancer.

Gizelle’s photo gallery

He may only be five, but Kiptyn Claypool already understands an important life principle. He understands the magic of giving.

Kiptyn was only three when he was diagnosed with Wilms’ tumour and the little wooden train set his parents gave him assumed a whole new meaning in his life.

“He played with his train set non-stop during his cancer treatments,” says Kiptyn’s mother Alicia Bjarnason. “I think it helped focus his attention and give him a sense of order and control at a really scary time.”

When Kiptyn decided he’d outgrown his train set, Alicia knew it was a turning point in her son’s life. What she didn’t know is that he had resolved to give it away—and not to just any child. It had to be a child with cancer.

“I want another kid with cancer to have my trains, so they can help him like they helped me when I had cancer,” he told his mother.

It took Mary Phillipo, Kids Cancer Care’s family liaison, about a minute to find the ideal beneficiary of Kiptyn’s generosity—little Colby Kucharuk.

Diagnosed at 20 months with high-risk acute lymphoblastic leukemia, three-year-old Colby also knows cancer firsthand. And, like Kiptyn, he loves trains.

Mary arranged to have the two boys meet at Kids Cancer Care. It was a match made in heaven. The two boys became instant friends, playing with the trains they both love.

“I want another kid with cancer to have my trains, so they can help him like they helped me when I had cancer.” ~ Kiptyn

Photo gallery

Children with cancer experience pain, often severe and prolonged, over the course of their disease and treatment. The Cancer Knowledge Network (CKN) is partnering with The Centre for Pediatric Pain Research and a research team of internationally known health researchers and clinicians led by Dr. Christine Chambers (IWK Health Centre) and Dr. Jennifer Stinson (SickKids) to bring the best research evidence about children’s cancer pain to parents through social media.

Unfortunately, we know that children with cancer don’t always receive the best pain management possible and that parents are often looking for more solutions at a time when they are stressed and exhausted. We cannot think of a better way to use our trusted CKN platform than to fast track evidence-based information to parents, empowering them to serve as powerful advocates to help improve their children’s pain management.

With a research grant from the Canadian Cancer Society, the Cancer Knowledge Network and The Centre for Pediatric Pain Research are addressing this problem through a social media campaign designed especially for parents, called Making Cancer Less Painful For Kids (#KidsCancerPain).

Over the next 12 months, they will be bringing parents the very best, cutting-edge research evidence about children’s cancer pain – what causes it, how to assess it, how to treat it, common myths, and more! They’ll be sharing this information with parents through a series of blogs, videos, images, Facebook posts, and Twitter chats, all posted and shared on the Cancer Knowledge Network’s website and social media. The research team will be studying the reach of the campaign and its impact on parents.

Click here to see their first video and blog.

On June 7, 2016, the University of Calgary awarded an honorary doctor of laws degree to Christine McIver, our founder and chief executive officer, for her outstanding service to children and families affected by childhood cancer.The honorary PhD is the University of Calgary’s highest academic honour and recognizes individuals whose achievements and community service deserve acknowledgment. Kids Cancer Care would not be able to serve Alberta children and families without you and your ongoing support, so we consider the honour a mutual honour, shared with you. After receiving the honorary degree, Christine gave the convocation address to thousands of students graduating from the faculties of education, social work and environmental design. You can view Christine’s acceptance speech here.

Having battled leukemia twice, Gordon Brooke understands the importance of developing and testing new drugs that will save kids’ lives without causing permanent side effects.

The first time he was diagnosed with acute lymphoblastic leukemia (ALL), Gordon underwent punishing amounts of chemotherapy and a steroid dose so strong it hindered his ability to walk.

“I was bald, ghost pale, skeletal and almost entirely anti-social,” he says.

When he relapsed three years later, Gordon’s only hope for survival was a bone marrow transplant (BMT). A BMT is a grueling procedure, in which the patient’s white blood cells are wiped out by high-dose chemotherapy and replaced by a donor’s healthy new blood cells.

The transplant saved Gordon’s life.

Although BMTs frequently cures cancers and other disorders of blood is the treatment, it is a brutal procedure and the risk of developing complications is high. Roughly 25 to 40 per cent of adult and pediatric BMT patients develop a condition called graft versus host disease (GvHD), which occurs when donor-derived blood cells in a patient see the patient’s body as foreign and triggers an immune response, leading to serious health problems and complications. About 10 per cent of these patients die from GvHD.

Developing new drugs for young people with high-risk cancers is vital and, one day, Carfilzomib may be one of those drugs.

Carfilzomib is currently being evaluated in a phase I clinical trial for difficult-to-treat pediatric cancers at 10 top-tier pediatric hospitals across North America. Open to all eligible children with relapsed leukemia and solid tumours, the study will closely monitor and analyze the side effects of Carfilzomib to determine the maximum dose children can safely tolerate. The trial will cost approximately $3.5 million (U.S.) to administer and is being run through the Pediatric Oncology Experimental Therapeutics International Consortium (POETIC).

Previously tested and approved for use in adults, Carfilzomib is already showing promise for treating adult patients with multiple myeloma — a high-risk leukemia. Studies on Carfilzomib in a University of Calgary lab revealed a similar penchant for killing pediatric cancer cells. These findings from Dr. Narendran’s lab were presented last year at the American Association of Cancer Research.

Dr. Narendran and Dr. Jessica Boklan of Phoenix Children’s Hospital are the principal investigators in the clinical trial and Dr. Tony Truong, co-principal investigator at the Alberta Children’s Hospital, and U of C clinical research staff Karen Mazil and Pina Giuliano, are helping monitor side effects and analyze findings from the study.

Carfilzomib is a proteasome inhibitor, meaning it stops the proteasome mechanism in cancer cells that helps cancer to survive. Because cancer cells divide and multiply so quickly they make a lot of mistakes, leading to abnormally formed cells. These poorly formed cells put stress on the cancer and threaten its survival. To get around this, the cancer cell uses proteasomes to repair its mistakes. By inhibiting the proteasome, Carfilzomib helps the cancer kill itself by its own imperfections.

“The beauty of this drug is it’s not cancer-specific,” says Dr. Narendran a pediatric cancer researcher with the Experimental and Applied Therapeutics (ExpAT) program at the Childhood Cancer Research Program at the Alberta Children’s Hospital Research Institute and the University of Calgary. “It blocks a mechanism that is vital to pretty much all malignant cells, so it can be used against different cancers. Normal cells don’t make so many mistakes, so this drug will be less toxic to normal cells, which may mean fewer side effects for children.”

Another promising attribute of Carfilzomib is that it works synergistically with other chemotherapies to boost their ability to kill cancer cells. This is especially important for chemo-resistant cancers.

“It’s kind of a safety net,” says Dr. Narendran. “Because the chemo agents and their toxicity are already known to us, we can use these chemotherapies with Carfilzomib to boost their potency for better outcomes.”

“What we know so far comes only from adult patients or from laboratory studies against pediatric cancer cells,” says Dr. Narendran. “We do not know if it will actually offer any benefit to pediatric cancer patients yet.”

As a phase I clinical trial, the study is not intended to cure children, but to understand its toxicities and determine suitable doses for treating children in the future.

Still, it is the first important step in a long quest to find safe and effective treatments for children with incurable cancers. If it lives up to its potential, Carfilzomib may one day offer hope for children with high-risk cancers.

Fortunately, Gordon Brooke has not experienced complications from the BMT he received. He’s healthy and strong today and with the help of a Kids Cancer Care scholarship Gordon is studying pharmacology at the University of Alberta. His experiences with cancer and chemotherapy inspired him to pursue a career in pharmacological research. One day, Gordon hopes to use his expertise to further refine chemotherapies to help young people like him.

Kellan is our miracle child — literally. I was previously married and have a beautiful daughter who was born in 1989 – Jazmine or “first born” as I like to call her. I always wanted Jazmine to have a sibling, but in 1995, I was in a bad car accident and both of my fallopian tubes were damaged. Me and my “then husband” kept trying but unfortunately I had four miscarriages and one tubal baby, before my doctor said, “That’s enough, stop trying. Its putting you through too much stress and disappointment.” I then sought out a fertility specialist and was told that with my tubes, there was no chance for a baby, so I was to deal with never having children again. My marriage fell apart in 2001 because he wanted a full house and I couldn’t give him that. I met my husband Jason in 2005 and told him I was barren, before we even got serious but he said I was more than enough for him. We were married in March 2007. In January 2008, I was very sick in the hospital with costcochronditis and needed medicine for a couple of months. Something that would not go away was the nausea, so on a whim, the doctor said, “Let’s do a pregnancy test.” I found out I was pregnant with my second child. I was 40 and having my second child; what a miracle. Our son came into the world in September 2009 and we named him Kellan, Gaelic for The Mighty Warrior, not knowing at the time how fitting this would be.

From October through Christmas in 2014, Kellan kept getting fevers, rashes and colds. We were on a family vacation in November in Cabo San Lucas – a Christmas present to all of us. Our daughter, being much older, doesn’t travel with us often, so it was really great to be together and we were really enjoying ourselves. Kellan loves to swim and swam a lot on our vacation, but he was freezing in the water, when it was plus 30! His lips would turn blue. He was also frequently having night terrors.

Kellan’s ears had been hurting on the whole flight home, so when we got back to Calgary we took him to a walk-in clinic, as our doctor’s office was closed. They told us, he had an ear infection, probably from too much swimming. Kellan took medicine for a week but still wasn’t any better. About this time, I also started noticing that he had very small dots and bruises on his legs. I took him to the walk-in clinic again. It was a weekend, and again, the doc said, “No worries about these signs. It’s an ear infection.”

Not longer after, Kellan and I were at a birthday party with his friends. I kept looking at him thinking, “He’s off. Something isn’t right.” Mom’s gut was saying, “Let’s check this out further.” I thought, with his white skin and lips, he was diabetic, which to me was very scary. Jason was out of town with friends at a poker tournament, so I picked Kellan up, left the birthday party and went straight to the South Health Campus Hospital. They admitted him into ER pretty quickly, as I explained all of the signs.

The ER doctor happened to be a pediatrician and came right away to see us. She wanted blood work!!! So with Kellan screaming at the top of his lungs, I held him down, while they did several withdraws. He was so upset at me, but I needed to know he was ok.

About an hour later, the ER doctor said, “Do you have family who can come to sit with you?” I said, “Well no, my husband is out of town. My parents live here, but I’m ok with you letting me know what’s going on.” She didn’t really respond and said, “I’ll be back.” Then a social worker came in and introduced herself. My mind thought, “They think I caused the bruising. They are sending a social worker.” All of the movies I’ve seen with a social worker means abuse, so I talked nicely with her and she said, “I’m going to sit with you until your family comes.” I said “I haven’t called my family; do I really need them here?” and she said “Yes.” So I texted Jason that they wanted him there. He was just outside Lethbridge and had carpooled with friends, so he had to figure out a way back into Calgary. I texted his parents and my mom, asking them to come too. I sat there with a very upset little boy and waited.

Finally, everyone arrived and the ER doctor came in and said, “Ok. Here’s what’s going on.” I had Kellan in my arms and he was still crying, so I couldn’t hear ANYTHING being said, but her lips were moving. Then I saw my mom fall into the chair. That’s an image I will never forget. I said, “Will someone hold Kellan, so I can understand what’s going on.” So Jason picked Kellan up and the ER doctor looked at me and said, “Kellan has leukemia.” Without having time to think, she said, “We need him at the children’s hospital ASAP, either by ambulance or you need to leave now.” On our way to ACH we went. My brother went to pick up my daughter, who was living in Canmore, as we didn’t feel she should be driving on the highway after we told her about Kellan.

We were admitted and Kellan was further tested to confirm that he did have leukemia. The results came in and confirmed that he had acute lymphoblastic leukemia. The blood tests all day long were the worst imaginable. I had to literally lie on top of him to keep him still, so they could do it. The next day he started on chemotherapy.

Being deaf hugely compounded everything for Jason and I. The hospital does not have interpreters, so every time the doctors and nurses would come and talk to us, we had no clue what they were saying.

After being admitted, Kellan immediately turned for the worst, getting pneumonia and RSV and another infection, so he was put in isolation, which meant EVERYone coming into the room had on a mask. Now, 80 per cent of my “hearing” or understanding is through lip reading, so with the masks that was taken away.

They would ask us to go into the doctors’ rounds (meetings) and we said there is no point, we can’t hear you. Jazmine, who was living in Canmore, would come into Calgary and go to all the meetings, take notes and record the conversation. Then she would transcribe all the discussions, so we could read them. We weren’t able to learn about what was happening until two days later: a day for her to go to the meetings, then write them out and travel back and forth from Canmore. We never knew what was going on at any time.

Jason and I were sitting in the waiting room, while Kellan was in surgery for his chemo port and a doctor comes out says, “Are you the deaf parents?” Then he tells us, “Just use the cream and give Tylenol and he can go home today.” Jason and I look at each other, puzzled, and asked, “What?” The doctor asked us again if we are the deaf couple – “YES!” “Ok, well the circumcision went great. Just use the cream for his penis every day.” We just about fell over with worry over what they had done. Apparently there was another deaf couple in the waiting room sitting right behind us. Oh how we wished that was the surgery Kellan was in for that day.

We had to book our own interpreter for all meetings, but we needed at least two or three days’ notice, which was impossible with the hospital schedules. So meeting changes would happen and we would lose our interpreter, who wasn’t able align with new times. Last minute, we would ask a hearing friend to come and help us. Fortunately he could sign.

We did have one nurse, who wasn’t on our shift often, but she knew sign language. You can imagine how much that calmed us. Whenever something was going on, she would sit on the bed with us and sign the information! We asked for her often, but her shift didn’t always line up and we only able to get her twice.

One morning at 2:00 am, I was asleep on the couch in the room and all of a sudden a bunch of doctors with masks rushed in. They said something to me and then wheeled Kellan’s whole bed out. I was barely awake and had no clue what they said. Then a nurse came in after and I said, “Please help me out.” She explained that Kellan was having troubles with his heart and breathing and they were taking him to ICU ASAP. I ran as fast as I could to follow them. 2:00 am!

In ICU, they put a full oxygen mask on Kellan and the doctors were madly trying to find the right recipe of antibiotics to best ensure he made it through the weekend. Kellan fought the mask and the doctor said, “You need it to stay alive.” He was strapped down. A mother’s worst nightmare – chemo, oxygen mask, feeding tubes and restrained arms. After a couple of days in ICU, they were ready to take off the mask but Kellan wouldn’t let them. To him, that’s what was keeping him breathing and alive. Slowly they turned it off, and even disconnected it, but he still kept in on his face. In ICU they also had his arms in straps as he would freak out easily but now back in unit 1 his arms are free and the first thing he does is curl up in a ball in fetal position and go to sleep. The ICU doctor tells me, “He’s a stubborn little guy, but you know what? That’s what will pull him through all of this.”

Every time the door opens to Kellan’s room, he panics, not knowing who is coming through to do what to him. The first time he saw a lab tech come into the room he started crying as usual and they said, “Watch this Kellan. No needles at all,” and they drew blood from the port. He started laughing, a sound I had so longed to hear! Kellan was starting to know by the colour of their coats if they were A) just going to look at it B) going to take blood C) coming to clean the garbage out, and he would react accordingly. He loved the blue uniforms — garbage only!

We were released for the weekend, just a trial period. Kellan was so excited, but my Momma heart was terrified. I was now in complete charge of his care. What if I made mistakes? I must have gone over procedures and medication with the head nurse 10 times. We even made a chemo chart to track all of his meds and used stickers to mark when we had completed each dose. We got home and Kellan tried to walk to the living room and he fell right away and said “Mom my legs don’t work anymore,” and started to cry. I then joined him on the floor, doing the same.

In March, Kellan started a new medication, which seems to have kicked in fast. Yesterday, he was complaining already of his knees giving out while walking and it was the first time since leaving the hospital that he was sick. So we are now riding a wave of chemo, puking, pain, crying, steroid rages and snuggles. Of course my little man is as brave as ever and usually just yells, “Mommy! I’m going to get sick!” and grabs a tray from our kitchen nurses’ station, gets sick in it, turns to me and says, “You better wipe down the chair too as I missed a bit.” Then he carries on playing. No tears (except from me) and on he goes, playing with his Lego! He’s also learned to use his sense of humour to calm me down. One day he’s yelling, “Mommy! Come quick! I’m getting sick!” so I ran into his room and he says, “My tray is full,”  and pretends to drop it on me. As I jumped back, I look at the floor covered in Skittles. He’s got my sense of humour.

The road is long but Kellan keeps bouncing back. On June 28, after his third day in a row of chemo, he’s throwing up and experiencing pain from his port. His legs are weak and his stomach is in knots. With a fresh dose of chemo in him, he goes outside and hits some baseballs!! UNBELIEVABLE, this kid. Everyone says how strong we are but Kellan is the strongest little fighter I will ever know. On one of the worst days yet at the hospital (port access, spinal tap, 3 types of chemo, 4 hours of rapid hydration and 11 hours in total at the hospital) after being released, Kellan goes to the driving range to hit some balls and I go home in a shirt bought from the hospital gift shop, as I’d caught all that “nausea” on me!

The chemo is also doing its best to give us the extremes in his personality. Kellan can be laughing and playing with you one minute, then minutes later, he’s tucked under my legs scared of everything. Talking with his child life specialist, psychologist and doctor, I am reassured that this will be the new normal, while he is on chemo. It’s not him or his personality. It’s the medicine reacting with the balances in his body and brain. Steroids are the worst for this too. One day full of Dexamethasone, he gets upset leaving a restauran and runs straight into the parking lot. Kellan, never more than 3 inches from my side, bolts onto the road. I yell to him to get on the side walk as there are cars coming and he says, “It doesn’t matter, I’ve got cancer and going to die anyway, let them hit me.” You can imagine the dagger through the heart as this came out of my six-year-old’s mouth. My heart breaks whenever I think of all the emotions and feelings my little guy is going through when all he should have on his mind is his friends, his games and his dog.

Kellan’s cancer has changed so much. This was our miracle child. Our everything. So many things we wanted to do and share together. Now every ounce of life and energy we have goes into this fight to keep him alive. We were very active and healthy people before diagnosis and then found we weren’t even looking after ourselves anymore. We weren’t getting real sleep and even our marital relationship had suffered. We are only partners, united in the fight, trying to keep everything together. We had forgotten our own story. Being deaf, we also can’t hear if Kellan is getting sick in the middle of the night, or crying in pain, etc., so one of us always sleeps with him in his room – for almost 3 years now!

Sleep was not something we had for the first whole year of this journey. Kellan had extreme separation anxiety and anxiety of people. Even people he knew and loved could not be in the same room alone with him or he would freak out. So, again, everywhere we went, one of us always had to be with Kellan, which meant no breaks. The only respite we got was with his grandparents, who he was comfortable with.

Both of us took a couple of months off work at first but eventually we had to get back to work. My work allowed me to move my office from the corporate building to our home, so I could be there with Kellan. My work was incredible. Giving me this flexibility was huge. Jason returned to his normal hours but took time off for Kellan’s clinic appointments.

We used to be much more spontaneous; now we have to think everything out: Where we are going? How many people are there? Will Kellan freak out or be comfortable? How long will we be away from home? What is the chemo schedule? You see, he can’t eat 2 hours before his daily chemo and one hour after, therefore we have to plan and time all meals exactly and watch to make sure he doesn’t sneak in even a juice or cracker during this 3-hour fast  period – EVERY day. Then on Thursdays he has 18 pills of chemo! We can’t travel anymore, which was one of our favourite things too, especially travelling to see family and to see Kellan’s grandparents in Palm Springs yearly. We stay within one hour of ACH, as the one time we attempted to travel, Kellan got fevers and very sick within a day, so we don’t chance it anymore.

The biggest shock for us was people. Today, our circle of trust is much smaller. One of the hardest things to go through on this entire road is the feeling of isolation and loneliness. But we made new friends, mostly other cancer parents we met at Kids Cancer Care events and camp. These people are our extended family and get us through a lot of rough times as we do for them.

Our daughter Jazmine made us very proud. She would come out from Canmore to Calgary to help out with all meetings, etc. She was my rock when I was breaking down in Kellan’s hospital room, crying, my head on her lap, sobbing. Another great turn was that Jazmine has decided to go into nursing and is now going into her third year. She’s on the dean’s list with amazing marks! She moved back to Calgary, so she could be with Kellan more often, but with school, her head is rarely out of the books. When they get together, it’s an amazing bond. You watch with your heart full.

Our first encounter with Kids Cancer Care was in the spring of 2014 for Family Camp at Camp Kindle. We were only 4 months into treatment. Almost all the families were on maintenance or off treatment, so we were pretty new to this. They all opened their arms up wide and brought us in. The reality is, we had not been apart from Kellan since January 11, 2014, not one hour, and now he was going off with a Kids Cancer Care volunteer, who apparently was going to play and then put him to bed. Jason and I looked at each other and said, “Yeah, right.” With a wave and a smile, he said, “Bye Mom,” and walked away with volunteer Brad. Now this was the first time meeting the cancer parents and Kids Cancer Care for us too. Camping is one of Kellan’s favourite things, and without Camp Kindle he wouldn’t be able to do it. They also have Unit 1 nurses that he knows on-site at Camp Kindle, which helped Mom’s anxiety a lot. The serenity of the camp can’t be put into words. I’m a Pisces and sitting by the pond, watching the ripples, is cheap therapy.

Getting families out in nature at Camp Kindle where you feel safe, because there are nurses on-hand and where you feel welcome and comfortable, as your kids are going through the same thing, is huge. It feels like you have another family that has your back and you can enjoy things in life, with the right people, without feeling guilt.

Kellan tried SunRise day camp twice, but wouldn’t let me leave him alone there. But he’s been to Family Camp with us three times. It’s great for him to get away from the hospital and house. He loves the bunk beds and the freedom to run around the grounds. Kellan’s a nature kid, so he loves the pond and fields. He is happy there.

At  SunRise day camp the first time, Kellan didn’t know what to expect. He was hesitant as they were so many kids. I told him, “It’s ok, these kids are just like you and they don’t care how little hair you have, or that you are sick.” He found a friend right away, former Calgary Flames Curtis Glencross. He just grabbed his hand and said, “Help me make these crafts.” I will never forget one mom looking at me, knowing I was worried as I tried to get Kellan to join the group. She said, “Its ok. I stayed in the parking lot and read books all week our first year. You don’t need to leave if you don’t want to.” So the parking lot is where I stayed. J When Kellan came out with a tiger painted on his face, I knew he was ok. He’s never let anyone paint his face before and then I see this ferocious TIGER coming at me.

Jason and I also participate in the Dragon Boat Races every summer with other cancer parents we’ve met through Kids Cancer Care. Rowing and training together with other cancer parents for two solid months each summer builds an incredibly strong bond between us. We’ve also been to Mother’ Day Brunch, kids’ cooking classes, parents’ cooking classes, Family Ski Day and, this past summer, I volunteered for the Tour for Kids Alberta, which was spectacular.

So you wonder what Kids Cancer Care does for a family. In short, it gives them their life back. I have never known such isolation as I have with this disease. It’s really like living on an island with no boat. Kids Cancer Care gives us the boat-ride back in. They have given us another family, one that understands what we are going through and a support system when we are tired. It gives us a chance to give back too through fundraising events like Tour for Kids Alberta. We honestly care about everyone affected by childhood cancer, so we do many charity events to raise money. I need to help other families in our situation if I can.

Kids Cancer Care is making a huge difference in the quality of life for kids and families in the world of pediatric cancer. It’s too easy to be forgotten and left on the side to deal with the depression, the overwhelming hospital appointments, the loss of close friendships and how to cope with all of it without losing yourself.

Kellan is now in his cycle 9 of his 12-cycle maintenance phase. He just started grade two. He is learning to be a little more independent and less anxious. Last year, it took us 2 weeks for Kellan to adjust to being at school without me. This year it took 20 mins. When on steroids, his moods are unpredictable, but when he is off them, he’s pretty much a normal stubborn six-year-old. He’s not a big eater, so he needs to eat more to gain weight, but he is growing in height a lot. He is very grateful for his family and friends and talks constantly about them — especially his girls. If anyone knows Kellan, they know he has a following of pretty special girls who are always at his side. He still hates the medicines daily, but he opens up his mouth on the count of 10 every time, without fail. We still have to watch for fever, germs, colds, coughs, etc. and pull him out of school whenever his counts drop or if kids in class are sick.

He is swimming again but at private pool. The Deerfoot Inn graciously lets him swim at their pool whenever he wants to. They let us know when they have less occupancy and when there are little to no kids in the pool. They also hosted his last two birthday parties with private pool and suite for the meals, so he didn’t have to be in the public restaurant. They make a little boy very happy, as swimming is his favourite thing, and a Mom very happy, as this helps shelter him a bit from public germs. He also played baseball last spring and summer.

Based on our schedule, maintenance phase will be done March 20, 2017 – which is also my birthday!!! There is a mile-long list of potential side effects, but we won’t know until we see them. For now, he is showing the leg and knee pain and skin rashes from major eczema. His energy is depleted, but we hope all of the other possible side effects stay at bay. Hearing loss, vision, cognitive issues, bone issues, kidney issues….they can stay away. We are all very excited for this milestone to come, but I’m honestly terrified too, thinking about taking away the safety net of chemo to keep those cells away. I’ll have to learn how to live “normally” again.

It amazes me how strong a kid can be! What a warrior. He wakes up, pukes, wipes his mouth and then goes to school like nothing happened. I know how much I loved him before this experience, but I didn’t know that love would keep us fighting the fight with so much power. It definitely knocks us out some days and we want to forget all about it, but other days, we are proud of what we have accomplished together.

I try not to show weakness. I keep myself focused on Kellan, so I don’t become a ball of tears. I save the tears for when I’m alone. We’ve had to be adaptable; we have to change things on the fly a lot. We may be leaving for a birthday party and then get a text that someone has a cold, and we have to change our plans and not go. This affects Kellan emotionally, as he looks forward to seeing his friends and then has to turn around and go home.

When I ask Kellan what he wants to be when he grows, his 100% honest answer is, “Just me Mom. I wanna’ just be Kellan, wherever that leads me” and then he adds, “Happy.”

Bless his heart.

I’d like to leave you with a poem that a tired, an insomniac mom once wrote – ME. I have found that it actually connected me to a lot of cancer mom’s going through this same thing.

Can you dream a little dream tonight? 

Can you dream a little dream tonight?

One that when you finally open your eyes

Your reality matches your thoughts

Where time has healed your painfully open wounds

And you are grateful they are behind you

Where you are able to laugh and smile without guilt

And know you are ok to breathe again

Where you hear the laughter of your child

And not worry, will it soon disappear?

Where your thoughts are on the present

Your nightmares are in the past

Where you are not afraid to see the future

And shine in all of its glory

Where you can joyfully skip down a path

Knowing it leads back to one another

Where the heat of the sun bounces off your face

And you know your roots will flourish

Where time does not need to be sped up

But rather enjoyed minute by minute

Where your child looks at you,

Not in fear of what comes next

But in awe of the beauty and strength with what he was raised

Dare I close my eyes and drift off

Will I awaken trembling in fear?

And knowing this was all but a dream

Why can’t it all be true

It’s so easy to imagine

Yet so hard to achieve

Please let me dream a little dream tonight

That’s alas, not a dream after all

—Robin Buck, Kellan’s mom

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