Blood brothers

Sloan and Ryder are blood brothers. They’re not just best friends who nicked their palms with a jackknife and squeezed their palms together to mix their blood. No, these boys are blood brothers in the truest sense of the title.

In 2008, I had just given birth to Sloan and Ryder’s little brother Cruz when Sloan was diagnosed with acute myeloid leukemia. He had just turned two. When Sloan relapsed after his fourth round of chemotherapy, my husband Rodney and I knew his only hope for survival was a stem cell transplant.

Stem cell transplants are extremely high-risk and life-threatening procedures that involve months of high-dose chemotherapy and radiation to wipe out the patient’s immune system to replace it with healthy blood cells.

Still reeling from this news, we discovered that Sloan’s brother Ryder was an identical donor match for transplant. In the frightening and turbulent world of cancer and transplantation, we had just hit the jackpot.

The odds of a sibling match are only 25 per cent, but transplants with sibling donors have the best possible outcomes. There are fewer complications, like graft versus host disease, and the chances of long-term survival are much higher. Still, it’s a high-risk procedure that demands round-the-clock care and a huge commitment from the entire family.

During a stem cell transplant, they essentially take your child up to death’s door and then start rebuilding him. If it doesn’t work, the child dies because there’s nothing left of him, no immune system is left. It was gut-wrenching to see Sloan like this. Preparing for transplantation was far worse than his previous chemotherapies. He was so sick he would vomit his own stomach lining. It was horrible to watch Sloan endure that kind of pain.

It was a gruelling experience that lasted well over a year. Rodney took a leave of absence from work and we alternated shifts at the hospital — three nights on and three nights off. Cruz was still nursing, so he was always right there with me and Sloan at the hospital. His bedroom was a playpen in the bathroom of Sloan’s hospital room.

The intense chemo and radiation treatments left Sloan with a dangerously low immune system and required that he be isolated from the outside world for months afterwards.

Before transplant, Sloan spent 72 days without a break in hospital. Then it was another full year before he recovered. It was like serving jail time. We were so isolated. We lost all our sense of freedom. Camp was the only thing Sloan could do that whole year.

Constantly filling in for each other at the hospital or at home, Rodney and I hadn’t spent any time together in over a year. Camp was our first break too.

We survived the transplant, but not without its traumatic aftershock. I suffered from severe insomnia and anxiety afterwards and was eventually treated for post-traumatic stress disorder. It started when we brought Sloan home. I would stay up at night, listening to his cough, worrying about his cancer coming back. I think the hospital provided me with a sense of security; daily blood cell counts and caring hospital staff ensured that we were on top of it. Once we were at home, I was plagued with fear that his cancer would return.

We’re so fortunate for modern medicine, blood donors and the doctors and nurses who took such excellent care to ensure Sloan has an opportunity to live a healthy, normal childhood. Although childhood cancer has forever changed us, we are so grateful to have met so many wonderful hospital staff, volunteers and friends through Kids Cancer Care, who have impacted Sloan’s journey to recovery.

Sloan has been cancer-free for almost nine years now. He still goes for baseline testing every year and will continue to be annually monitored for the rest of his life. While many of the long-term side effects are still unknown, what is certain is that he is at high-risk for certain heart conditions and secondary cancers.

Thankfully, he hasn’t shown any signs of cognitive impairment. Sloan is a strong student in both reading and math. Last year, he received a certificate of distinction from The Calgary Elementary School Math Contest, sponsored by the Mount Royal University. Sloan is also a passionate Rubik’s Cube competitor.

All three boys are growing like wildflowers, endlessly roughhousing and teasing each other as brothers do. When Ryder gets in trouble for teasing his brother, he’ll say, “C’mom mom, I saved his life, give me a break.’”

We’ve regained our stride and we have a healthy appreciation for life.

I have no illusions about death. We don’t know what Sloan’s life expectancy is, or ours, so we try to embrace our life now. Every day we have together is a gift.

– Karin McGinn, Sloan and Ryder’s mom

Blood brothers
Karin McGinn exhibited her work, Blood Brothers, at the Marion Nicoll Gallery and +15 at the Epcor Centre for Performing Arts in 2014. The individual life-size figures in this fibre work commemorate the bond shared between her sons Sloan and Ryder through a courageous gift of life. When two-year-old Sloan was diagnosed with a highly aggressive blood cancer in 2008, four-year-old Ryder donated his stem cells to save his brother’s life. The transplant was successful and the two boys and their little brother Cruz are thriving today. 

Kids Cancer Care has partnered with Canadian Blood Services for Childhood Cancer Awareness Month. On September 19th, Sloan and Ryder will appear at the special Grand Opening of the new Blood Donor Clinic in Calgary. It’s in you to give – book your blood donation appointment in honour of Sloan today. Please contact the Lifebus/Group appointment coordinator at 403-410-2722 or via email.

Our journey with cancer began long before we ever realized we were on it. For about a year before his diagnosis, our son Joel, who was just nine at the time, started having dizzy spells, severe migraines and frequent vomiting. We were perplexed and thought it may have something to do his balance or his vision or spinal alignment. Then, one day I noticed he was watching TV with one eye closed. I asked him why he was doing that and he said, “It’s the only way I can see without having double vision.” I was shocked. We had been back and forth to different doctors, but this was when we really got serious and had a detailed assessment.

Three days after his 10^th birthday, Joel was diagnosed with medulablastoma, a type of brain cancer. It was the darkest day of our lives and the first time Joel ever his father cry. The mass was the size of a kiwi fruit, but the good news was that it was a solid tumour and it was operable.

Now we knew we were in for a long journey, but we had no idea of the magnitude. We thought a cancer diagnosis meant surgery, chemo and/or radiation treatment. After that, you are either a survivor or you are not. We soon found out that’s really just scratching the surface of the whole cancer journey.

They removed the tumour on March 19^th, 2009. The scariest part for Joel was waking up after the surgery and not being able to move, talk, eat or go to the bathroom. He also experienced a condition called cerebelar mutism, where he was unable to speak for three weeks. Joel also had partial paralysis on his right side and would spend hours staring at the ceiling.

Because of the nature of his cancer, Joel had to undergo a stem cell transplant. During transplant, a patient receives severely high levels chemotherapy and radiation to wipe out their white blood cells, so they can replace them with new healthy blood cells. Sometimes in a stem cell transplant, the patient ends up being their own donor, which was the case for Joel.

Prior to chemotherapy, the medical team at the Alberta Children’s Hospital harvested 350 million stem cells from Joel and collected them into four bags. The hardest part for Joel was lying perfectly still for two whole days while this took place. He had to be still for 48 hours straight! His body would become numb from lying still. This earned Joel the nickname the Polish Prince at the hospital, because of our polish background, but also, as the nurses said, he had already acquired complete self-mastery at the age of 10. After harvesting the stem cells, they froze them, so they could later re-inject them into Joel after each of round of chemo.

During his radiation treatments, Joel had to wear a plastic mask that was formed to fit perfectly over his face. He had to keep his head perfectly still so the radiation rays would target only specific areas of Joel’s brain and not damage healthy tissue. In order to do this, the mask had to be screwed down to the table. Joel had to really concentrate, so he wouldn’t throw up. They placed marks all over his body (with a sharpie!) so they wouldn’t need to realign him each visit. Joel younger brother Eric used to ask him to put tattoos all over his arms, because he wanted to be marked up like his big brother.

Since Joel’s first diagnosis, Kids Cancer Care reached out and embraced our family. Joel and Eric participated in the many activities they offered and spent a week every summer at Camp Kindle. It has a pool, high ropes, a climbing wall and other fun stuff for cancer kids and their families to just get away. Being there showed Joel he was not alone. The kids shared experiences and talked about what they had been through. They developed a unique bond with one another.

Kids Cancer Care also funds a project called the Beads of Courage. It’s a string that you add beads to each time there is a medical event, a kind gesture, a special activity or when you reach a milestone on your cancer journey. For example, the blue ones represent physical, speech or occupational therapy, the pink ones are chemo, but the most interesting are the beads that represent a radiation treatment. They are the ones that glow in the dark! It’s a simple thing, but was very healing for Joel to do.

In November 2009, Joel celebrated what we believed would be the last of his cancer treatments. He’s actually skinnier than his skinny cousin! But he was cancer-free for the first time in years.

In November, 2011 Joel reached another milestone. He was two years cancer- free and considered cured. Joel was on growth hormone therapy, had decreased lung capacity, reduced muscle strength and extremely brittle bones, but he was doing well. He was cancer-free. He was excelling at school. He had returned to hockey and was playing with the Bow Valley Fiddlers again.

Joel remained cancer-free for five years when a routine MRI scan revealed tumours in his spine. Joel started back on treatment. But this time, the doctors told us there was nothing more they could do. Joel passed away on October 3, 2015 at the age of 16.

Three days before passing away, Joel insisted on going shopping to buy his mother a birthday gift. By this time, he was in a wheelchair. Before they entered each store, Joel would muster all his energy to pull himself out of his wheelchair, hook arms with his mom and browse with her, laughing and joking together. Joel found the perfect gift for his mother, but it was the last gift he would ever buy.

Among Joel’s many passions was golf. About three weeks before he passed away, our family went golfing in Kananaskis. It was a bitterly cold day. It was raining and blowing so hard the rain was coming down sideways. Joel was fatigued and cold, but he was determined to enjoy himself.

By this time, Joel was 90 per cent numb from the waist down. We had purchased walking poles to help him walk and for balance. Instead of being embarrassed, he was quite proud of his poles and covered them with bright neon stickers.

Secretly, the rest of the group wanted to pack up and go home, but after a quick break in the clubhouse, Joel had bounced back. Smiling from ear to ear, he said: “Mom, I’ve had a snack and warmed up. Now I have a second wind. Uncle Richard got a handicap flag for the golf cart, so we can drive right up to the golf ball.”

After a brief pause, Joel fired up, “Well, what are we standing around for? Let’s go!”

Although it has been so challenging. The experience has forced us to open up and share our burdens with others. We have had an incredible community of family and friends supporting us every step of the way. What kept Joel going the whole time was remembering all the people who love him. Kids Cancer Care showed us we are not alone and played a huge role in helping Joel to have fun, fulfill his potential and maintain a positive attitude right up until the end.

– Ed and Dale Zukowski, Joel’s parents

New insights into medullablastoma
Not long ago, Joel’s treatment was considered radical by most Canadian oncologists. Today, it is considered the most effective and safest treatment for medulloblastoma, curing 80 per cent of children diagnosed with it. Calgary cancer scientists are discovering that medulloblastoma is not really one entity. There seems to be subtypes of medulloblastoma that behave differently from each other and are therefore more or less sensitive to certain treatments. This is explains why reaching 100 per cent cure rate for medullablastoma has been elusive. University of Calgary scientists are creating models of medulloblastoma and other brain tumours, so they can study the diseases and the effects of drugs on them before introducing them to children. Working with these models, medical teams hope to test and safely introduce promising new drugs to kids like Joel whose frontline therapy has failed. New research is vital for children with refractory and relapsed cancers, please support pediatric cancer research.  Click here to donate now.

Colby was the sweetest (and busiest!) little one-year-old boy, who was into all things sports. Anything that was motor skills related, he would pick up on very quickly. He was fully crawling by the time he was six months old, walking a couple days after he was 10 months old and was obsessed with hockey by the time he was 18 months old. Colby was such a healthy and active little boy, who only ever needed to go to the doctors for check-ups and immunizations. However, after he turned 18 months, he started having a lot of trouble sleeping, became easily irritated and lost his appetite. Despite being a bit off, he still had a considerable amount of energy. We didn’t think anything of it at the time because he was also getting his molars and we figured it might just be one of those phases that kids go through.

Near the end of February 2014, when Colby was 20 months old, he caught a cold. He had a runny nose, low-grade fever, was super irritable and hadn’t had a full night sleep in days. Again, we didn’t think much of it. All the other kids in the day home had colds too (which was not shocking considering it was the middle of winter). After picking Colby up from his day home on Thursday, February 20^th, our day home provider had pointed out some spots along Colby’s arm. These spots were unlike any rash we had seen before. The rash was not raised to touch, didn’t look irritable and Colby didn’t seem bothered. We decided to take him to a walk-in clinic that night just to have him checked out. After the assessment, the doctor figured perhaps it was a cold and sometimes these viruses can display different symptoms, especially in kids. The doctor told us to monitor these spots and if he still had them the following week, we should come back and he would take another look. Off we went. Over that weekend, the spots spread over to his other arm and his legs – but nowhere else on his body. It was definitely weird for us. That Monday, we took Colby in to the same clinic. We visited with a second doctor who had a similar reaction as the first. Deep down we knew something just didn’t seem right with our little boy.

This brings us to Tuesday, February 25^th, 2014. After a long night of crying and failed attempts to comfort an irritable little boy, Colby woke up with a large mass of these spots on his cheek. We were shocked, but we were trying to comfort ourselves because we had just taken him to the doctor the night before. Perhaps it was just a virus. We made an appointment with our family doctor for 10:30 am and were hoping she might have some answers for us, however; she also seemed at a loss. She sent us to the Alberta Children’s Hospital for blood work knowing that we needed to figure this out and that they would be great with someone Colby’s age.

At 1:30 pm, we were back at home and Colby was napping when the phone rang. We were surprised to learn that it was our doctor’s office, as we hadn’t expected them to call us until at least the next day. My husband was standing beside me, while I talked to the doctor. “Stacey, I have Colby’s blood results back already. Can you tell me, where is Colby right now and is anyone with you?” I responded by letting her know Colby was napping and that Curt was home. “Stacey”, she said, “You need to head back to the Alberta Children’s Hospital right away and I think it would be best if you packed a bag as you could potentially be staying overnight. Colby’s blood counts are extremely low. I’m going to send them these results right now and they know you will be coming there soon.”

Not knowing exactly what those blood counts actually meant, we frantically packed a bag, woke Colby up from his nap and drove to the Alberta Children’s Hospital emergency centre. When we got to emergency, there was a long line of families waiting to get in, but when I let the admitting clerk know who we were and showed her the blood counts, we were instantly taken to a room and my mom instinct went off again: “This must be super serious for us to by-pass all those sick families in that waiting room.” Within minutes, we had two nurses come in to assess Colby and we thought it was strange how they were both fully gowned up (masks and all) when they came in. Soon after, the emergency doctor came in and started talking to us about what the low counts meant for Colby. Hemoglobin is your oxygen providers; it gives our body energy. Platelets are the clotting agents; they prevent the body from bruising and bleeding. White blood counts are what defend us against virus and germs. They keep the body healthy. As he was describing these functions, Colby was running around the room like a normal healthy child. The Doctor said, “If Colby was a teenager or adult with that low of a hemoglobin count, he would have no energy to even get out of bed. It’s interesting to see him have all this energy.” While this doctor was really kind – he never did give us any indication of what might be wrong with Colby. The doctor left saying that someone else would be coming to visit us shortly. We both knew that the next visit would be challenging.

Our next visitor walked in and introduced herself as an oncologist. Our hearts shattered when she said that. The only reason a cancer doctor would be here is to tell us every parent’s worst nightmare. She calmly told us that she had just looked at Colby’s blood work and that she was devastated to tell us that Colby had leukemia. Our whole world seemed broken in that moment. Up until that point, my husband and I had kept it together, because as scary as everything was, nobody had told us anything as to what it might be, but as soon as we heard those words, it was real. It was serious. It was scary. It was happening to our little boy.

Leukemia – cancer of the blood. This is the reason why Colby’s white blood count was so much higher than his hemoglobin and his platelets. These abnormal white cells were crowding Colby’s bone marrow and preventing his body from producing other cell types. Those weird spots were actually petechia – a reddish spot on the surface of the skin as a result of tiny hemorrhages of blood vessels.

Things started to happen extremely fast over the next few days at the hospital. That evening, Colby was admitted to Unit One at the Alberta Children’s Hospital and required two blood transfusions and platelets. The next day, they performed a bone marrow aspiration (BMA) and, by 5:00 pm that evening, they confirmed that Colby had pre-B acute lymphoblastic leukemia. On Thursday, Colby had surgery to put in an IVAD (implanted vascular access device). By Friday, February 28, 2014, Colby had received his first treatment of chemotherapy.

Colby was still admitted the following week and that’s when we had our first encounter with Kids Cancer Care. It was a Wednesday night – Pizza Night. For the first time since we were admitted, we left our room and wandered down the hall to where they host Pizza Night and we were introduced to the lovely Kids Cancer Care volunteers. The volunteers provided us with some reassuring smiles, some warm and comforting hugs and, of course, some delicious pizza. Pizza probably doesn’t seem like a very big deal to most, but for us, it was the first opportunity to interact with others on the unit. A lot of the children on the unit are in isolation, so there is often very limited interaction between families, as they are in the rooms caring for their children. Colby hadn’t been eating much since he started undergoing everything, so to see him devour the pizza was a warm and welcome relief for everyone.

The treatment for leukemia is long. Over three years. Three years was more than a lifetime to Colby. The most intense part of that treatment occurs over four different phases.

The first phase of treatment (Induction) was one of the most difficult. The chemotherapy started to kick in and Colby also needed to take a steroid for 29 straight days. The steroid had such awful side effects, including difficulty sleeping, severe mood changes, muscle weakness and an increase in appetite. While on the steroids, Colby ended up gaining over 30 per cent of his body weight and could barely walk by the end of the dosage. After the first phase was complete, it was determined that Colby had now fallen into a high-risk group based on the number of residual cells that were remaining, when they performed another BMA on day eight. As a result, he was now going to receive high-dose chemotherapy protocols for the remainder of his journey.

The phases of treatment and months that followed were by far some of the most difficult experiences we could have imagined. Each phase of treatment introduced new chemotherapies, which all had their own laundry list of potential side effects, some short-term and some that could extend into adulthood. Our new normal revolved around blood counts, chemotherapy and intrathecal chemotherapy (given through lumbar punctures), extended hospital stays, clinic appointments, blood and platelet transfusions, nausea and isolation. Quite often, Colby’s white blood cell count was so low that he was considered neutropenic, meaning that he had next to nothing for an immune system. As a result, we were isolated from the general public and had limited interaction with others for months, as we tried to ensure that our house remained a sterile and safe haven for us as we lived in fear of getting sick and putting Colby at risk.

In September 2014, our life got even more hectic as we welcomed our second son (Benson) into the world. We had just found out were expecting two weeks before Colby was diagnosed. This was particularly challenging as Colby was also undergoing the most intense phase of treatment (delayed intensification). This particular phase required daily clinical chemo appointments and even more blood transfusions. Overall, Colby was at his weakest and seemed to be in the most pain during this phase. It was as if that final phase of treatment was going to shut down his body with the hope that when it started back up afterwards, it would be fresh and healthy.

Finally, in early November 2014, Colby had been given the okay to start the final phase of treatment, called maintenance, which was scheduled to last until June 2017. For three years, Colby was going to require IVAD chemotherapy and steroids every four weeks in addition to lumbar punctures for intrathecal chemotherapy every three months and daily oral chemotherapy (two doses on Mondays) that needed to be administered from home. During this phase, the goal was to eliminate the potential of any additional cancer cells. The dosage of chemotherapy was always a delicate balance as they tried to ensure that his white blood cells were not too high or too low to optimize the best dosage to be effective, while still allowing Colby the ability to fight off infection.

With a newborn and an immunosuppressed toddler, we continued to be fearful of public outings, because every time Colby had a fever, it was a frantic rush back to the Alberta Children’s Hospital. The possibility of being admitted would be even more difficult as we tried to figure out the care for both children. We discovered Jamie’s Preschool, which is truly a wonderful place that provides a safe environment for children like Colby to attend, so they can socialize and play with children their age. It was our saving grace at the time, as it helped us start feeling more comfortable leaving the house. It was through Jamie’s Preschool that I met other cancer moms who talked to us about the programs Kids Cancer Care offers and how the foundation provided them with so much support and created such a strong community for our families.

As Colby continued to stabilize and we settled into our new routines that were a part of maintenance, Kids Cancer Care provided us with opportunities to have quality experiences again and forget for a while the challenges that Colby was experiencing. Our first interaction was an invitation to the Calgary Hitmen game in a private box. It was so uplifting to see him smiling and be excited. The game was a great distraction from the harsh reality we had been living for almost a year now.

From that first hockey game, we became active members of Kids Cancer Care programs. Our first visit and introduction to Camp Kindle was that spring for Mother’s Day Brunch, which was a beautiful way for us to spend the day as a family. We also attended Family Camp that year, which provided an incredible and much-needed weekend retreat. That summer, Colby attended a special day at WinSport with Kids Cancer Care, where he got to experience a variety of different activities. But his favourite program that summer was definitely Kids Cancer Care’s SunRise day camps. It was the first time since Colby had been diagnosed that we left him in the care of someone else who wasn’t immediate family. We knew that he was in the amazing care of Kids Cancer Care’s staff and volunteers. He had the best time at camp and it was so heartwarming to see a child, who had been through so much, enjoy life again. The programs that Kids Cancer Care offers are such an incredible distraction during difficult journeys that allow these children who have dealt with so much to have experiences they miss out on while in treatment or as a result of treatment.

We often used pictures from Kids Cancer Care events or activities that Colby had attended to distract him while he was in clinic or whenever he was admitted. Being immunosuppressed for as long as Colby was made him susceptible to getting sick. Common childhood viruses like hand, foot and mouth disease were so extreme for Colby that he ended up on pain medications to help get him through it because he didn’t have the immune system to fight it off properly. Additionally, he often experienced a ton of aching and pain in his legs and joints – especially after his IV chemo appointments and the five-day steroid pulses. Despite all the pain, Colby still had a passion for being active and all things sports, so when he had his bad days and he was struggling to walk and get around, it was really tough to watch and imagine how it might get better. Luckily for us, and Colby, Kids Cancer Care offers a PEER program (Pediatric cancer patients and survivors Engaging in Exercise for Recovery) that encourages children to keep moving and stay active through sports, games and other fun activities.

This past June was finally the milestone we had been waiting for since Colby was first diagnosed. On June 12^th, 2017, Colby was officially done treatment. It was a day of overwhelming emotions and anticipation. Our brave warrior was done after three long years. We celebrated with family and friends who were all there for us throughout the entire journey. It truly takes a large network and support system to help these children fight these battles and Kids Cancer Care was a huge part of that support system for us. Children can’t do it alone, and neither could we. It was an emotional and painful journey, but at that same time, it was also inspiring. Children truly are resilient and determined. As hard as this whole journey was, Colby still would find the strength to smile, laugh, be silly and inspire us to stay strong and work together as a team.

Colby’s been off treatment now for almost three months and we are now adapting to this new phase. Like each phase of treatment, this too brings a wave of emotion that is beyond measure. It’s so relieving to know that he is done and that we can finally have a healthy kid again, but at the same time, there is so much fear that comes along. We can only hope that everything he has gone through over the past few years is enough to keep him from relapsing. It’s an adjustment going from daily, weekly or monthly blood work to now only getting it done every two months. The reality is, Colby had been on treatment for longer than his life span. We really forgot what it was like to have him be healthy and ‘normal’.

This fall, Colby will get to attend kindergarten and he is so excited. Colby is also registered to play hockey and is already practicing his slap shot down in our basement. He continues to look forward to programs that Kids Cancer Care provides so that he can see his friends – and his fellow warriors. He’s happier, healthier and more energetic than we ever remember him being. He is currently feeling great and we are thankful to everyone who was part of this journey – Colby’s oncologist, the nurses and support staff at the Alberta Children’s Hospital, our strong family, our incredible network of friends, the amazing people at Jamie’s Preschool and the wonderful employees and volunteers at Kids Cancer Care. The fears, the side-effects, the emotions and the struggles are forever and are always going to be part of Colby’s life, but this journey is also going to shape him into a remarkable young man, who is stronger and braver than his years. He was a fighter and now he is a survivor.

– Stacey & Curtis Kucharuk, Colby’s mom & dad

Give blood in honour of Colby
Kids Cancer Care has partnered with Canadian Blood Services for Childhood Cancer Awareness Month. Colby received lifesaving blood and platelet donations during his treatment thanks to giving people like you. Book your blood donation appointment in honour of Colby today. Please contact the Lifebus/Group appointment coordinator at 403-410-2722 or via email.

Julia was our little sister. We were six and four years old, so we were quite a bit older than her. We also have an older sister, so we are all fairly spread out. She was the baby of the family. She was a little bit stubborn, a little bit bossy (actually, a lot bossy). But she was awesome. She was always open to anything – if we went to play hockey, she’d come too. She was just like that.

Shane: Out of three sisters, she was my favourite.
Teagan: Excuse me!

Our childhood cancer journey started one summer when we were all at a regular summer camp. Julia got really sick. She’d been diagnosed with a sinus infection – and so we just thought it was that. When she said she was feeling sick, we truly thought it was just the sinus infection.

Then, soon after, the tumour started growing out of her nose and we realized she had been misdiagnosed. When they took her in to the hospital, we didn’t go with our parents. But we all knew something was really wrong. The rest of us kids just stayed home watching TV, which we thought was pretty cool at the time since we were still pretty young.

That night, our mom and sister Julia stayed at the hospital.

Teagan: My dad came home and then he just sat us down and told us that Julia had cancer, and that it was stage three… she’d be starting chemo within days. We didn’t really have time to digest it.

At first it was easy for us siblings, because we didn’t really understand it. She was still Julia to us. She still had her normal face and her normal hair, and the same personality. But with the chemo, her hair started to fall out and it really started to sink in. Whenever we got sick, we weren’t allowed to be near her because she was very sick and her immune system was very low. So we just didn’t see our sister. That was different.

Shane: It took a while to actually realize that it was cancer, it was life-threatening. And, as soon as that realization sunk in, it was really hard, because there was nothing that I could do. Her life depended on the doctors and the nurses, so we had to sit back and watch it all happen.

We were so hopeful, because she had a really high survival rate at the start, but then she relapsed. A number of times. And every time she relapsed, there was less of a chance. And every time she relapsed, it got even less.

Teagan: Our parents didn’t treat her any different. There were times when she wasn’t sick and she just didn’t want to go to school. Our mom would usher her out the door. They wanted her to keep up with her friends and go to school…be a normal kid. That was best for her. If we were going to a hockey game, she was bald, so she’d put on a warm hat, a scarf, and she was coming. It helped her in more ways than anything else.

Julia had to do daily stretches because one of her medications affected her legs. And if we didn’t give her stretches, she wouldn’t be able to walk properly and she’d have to go into a wheelchair. The stretches were painful. She hated it. Her hands and feet were sensitive because she felt pain all the time. Even when our mom would cut her nails, it was a huge deal. She would be bawling because it hurt. It’s a normal thing that none of us think about, but it hurt her. We just can’t even understand or comprehend how much pain she actually went through.

Her final relapse diagnosis was in October 2012. They didn’t think she would live past Christmas. But she did.

In January 2013, she went to sleep one night and just didn’t really wake up. So we knew something was happening.

Shane: I went to school that day and Teagan went to the hospital. It was about 10 in the morning and they called the school. One of our family friends picked me up.

Teagan: They were hoping to get Shane before it happened. I was in the room when it happened. If I remember correctly, my mom and dad were in the room as well. She just stopped breathing. We were supposed to shuffle her pillow whenever that happened, so we called and the nurse quickly ran into the room. I remember, I just glanced over at the clock and it was 11:04 am. The nurse shuffled her pillow, but she didn’t breathe again. She was gone. Shane and my older sister Emma were on their way. They arrived just after the fact and I remember that was the first time I ever saw my dad cry.

We didn’t leave that room for hours. We just hung out there. We stayed there for six hours. We didn’t know what to do. They let us. They let us stay there and sit with her. The nurses took away the machine. We just stayed there for a while, just kind of letting it all soak in.

Teagan: Nothing really felt real. It took a long time. For months after, we would turn on the TV in the mornings, but would turn it down low, so we wouldn’t wake her up. Then we’d think, “Wait a second, I don’t need to turn it down anymore.” Julia and I shared a room, so I would just look at her bed. We never really got rid of all her stuff, so years later, I will still see some of her. It never really sets in and it really never goes away.

People, when they find out, immediately back off. They assume that we don’t want to talk about it or talk about her. And some people deal with grief that way. In our family, we like to continuously remember her. We still celebrate her birthday every year. She would have been 13 in September. We release wish lanterns and have a party, inviting all of her friends. We never stop remembering. We have a lot of great memories with her.

Teagan: We were sisters, so we’d fight – we were both stubborn. But near the end, when she was really sick, she couldn’t use her fingers very well, so I would play Pokemon for her. She would boss me around, tell me what moves to make and such, and it was the closest we’d ever been. Instead of fighting, we just spend days and days together. It was really bittersweet, because we knew it was the end, but it was still really great.

Shane: Her entire childhood was great. We just used to play all the time, and I kind of miss that actually. Her favourite thing to do was play with Build-a-Bears and we did everything with those. We even set up on our stairs a hockey match. I brought out mini sticks and we played. We used to just play all the time.

Kids Cancer Care just stepped in and said “Hey, we’re here guys.” They were immediately there the second Julia went into the hospital, they contacted our family. They were supportive. They never left us feeling unimportant. They told the two of us that if WE, the siblings, ever needed a break, we could also go to their events and programs.

We went to the opening when they built the new camp, Camp Kindle. Julia was so excited to be able to go to camp the next summer. She was so excited to go swimming and do all these things they had at camp. She never got to do any of those things.

Our family got to go to Kids Cancer Care things after she passed too. We got to go to Hitmen games and Stampeders games. We would get to meet people who had the same experiences as us. It’s a small world. You’d see people there and think, “I didn’t know they had an experience with childhood cancer.” You don’t feel so alone; you feel like you are not the only family that had to go through that. You get different perspectives – you talk to someone who had cancer themselves and how they felt and how they felt bad for their siblings. It just brings everybody together and they’re supported – through friendship. And most importantly, Kids Cancer Care makes you feel normal.

– Shane and Teagan

Taylor was diagnosed with leukemia the year she was supposed to start grade one. She spent two and a half grueling years on treatment. Her story is one of many shared on special dedication boards at registration for Tour for Kids Alberta, a three-day cycling adventure through the Canadian Rockies, where participants fundraise to ride, with all proceeds to Kids Cancer Care.

These special boards each share a different story of a childhood cancer warrior, fondly known by Tour for Kids as ambassadors.

Grant was 15 when he was diagnosed with acute lymphoblastic leukemia. Three weeks later he was in remission. However, the cancer would change to acute myeloid leukemia and, later that year, he was diagnosed with skin leukemia. He passed away six months after his first diagnosis.

Liam. Stephen. Briony. Alexander. Dominic.

These are the childhood cancer warriors that are top of mind for the cyclists on the epic cycling tour through the Canadian Rockies. Each day of riding, a special dedication to one of these children affected by cancer.

It’s always been about the kids for Jeff Rushton, Founder, Chair and Very Passionate Volunteer at the Coast to Coast Against Cancer Foundation. Fourteen years ago, Jeff and some friends started Coast to Coast, the Ontario-based organization behind Tour for Kids. “When we started this foundation, we really wanted one thing: we wanted to make a meaningful difference in the lives of kids and their families going through childhood cancer,” Jeff says.

And that’s exactly what they have done in the 11 years since Jeff and his team first brought Tour for Kids to Alberta. In total, Tour for Kids has raised $2.5 million dollars for Kids Cancer Care. Through various fundraising events and programs, including the Sears National Ride, Inside Ride, and of course, Tour for Kids, they have raised over $35 million dollars for 50 childhood cancer charities and hospitals across Canada.

Their model is low cost. Hard costs are covered by corporate sponsors. That means Coast to Coast has always given 100 per cent of donations raised to the charities they support.

But what makes the event stand out is the people.

Jeff himself is there at the crack of dawn to greet the riders on the first day and then he joins them on the ride, for every single kilometre. At the end of the weekend, Jeff is there to hand out medals and pat each rider on the back.

“The ride takes you to the edge physically and spiritually,” Jeff says, “as you push beyond your own limits and listen to the story of the child you’re riding for.”

Kids Cancer Care event coordinator Kelsey Morrison adds, “It’s a real team effort. The riders, the organizers, the volunteers. No one is afraid of getting dirty or lending a hand to make the weekend the best experience possible for everyone.”

Kelly Raymond, Kids Cancer Care volunteer assistant agrees, “There is so much comradery. There is a real human, powerful side to the event, almost everyone has a connection to childhood cancer or has been touched by these kids.”

After the ride starts, volunteers start to pack up the dedication boards at registration.

“I need to get a picture of Grant’s dedication board before they load up,” says Mel, the volunteer co-lead, working with Kelly to oversee the 84 volunteers who work the event. Mel, her daughter Ali and husband Jim have volunteered on the ride for six years. She is also Grant’s mom.

She’s not alone. Liam’s mom has been a rider two years in a row. Stephen’s dad rides too. Briony’s mom normally rides, but volunteered this year due to an injury. Briony’s sister is the volunteer massage therapist who organizes all the massage therapists and RMTs for the weekend. Alexander’s mom and dad are part of the volunteer crew. And Dominic’s aunt rides every year.

On the second night of the ride, participants stay at Kids Cancer Care’s Camp Kindle where all the kids go each summer thanks to Tour for Kids. First, the counsellors speak of their own experiences as a childhood cancer survivor and sibling. Then, the Inkpen family, a family whose son Foster is currently undergoing treatment, speaks at dinner, reminding everyone in the room where their fundraising dollars go.

“Camp Kindle is our family’s island where we dock,” says Candace Inkpen, standing before a crowd of cyclists. “Knowing that both kids were in amazing hands at Camp Kindle helped me let go. Just a little. And that is because of you all.”

And in that crowd is Taylor. Now 28 and a registered nurse, she rides every year with her dad Dean Wheatley.

“Taylor Wheatley is amazing,” says Kelly. “She and her dad ride all weekend and the rest of the Wheatley family volunteers. And then on Monday, after riding hundreds of kilometres all weekend, she’s at SunRise camp, volunteering for a week with our youngest campers.”

That’s what the ride is for so many. Jeff sums it up best, “We give a lot, but we get so much out of it. It’s been an incredible journey…and we’re just beginning.”

Thank you Coast to Coast Against Cancer Foundation, Jeff, Taylor, Mel, and all the volunteers, sponsors and cyclists who make this event possible. By doing so, you make an invaluable impact in the lives of children affected by cancer and their families

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