Madeline Pillipow

You would never imagine what Madeline has achieved while fighting Hodgkin’s lymphoma. She’s captain of the basketball team, head trainer for the boys’ football team, peer supporter, drama member, public speaker, member of the Kids Cancer Care Teen Leadership Program, fundraiser and volunteer.

She has given hundreds of hours to her school and community. Madeline is eager to help other children facing impossible situations because she knows how powerful it can be to talk to someone who understands. While cancer made her feel alone, meeting others with similar challenges through in the Teen Leadership Program helped her to feel understood and appreciated. It helped her to become an outgoing person again.

As one of Madeline’s coaches explains, “Madeline is a remarkable young woman and I have no doubt that with her commitment to personal achievement, combined with her passion for helping others, she will be extremely successful in everything she chooses to pursue.”

In the fall, Madeline will be taking her energy and leadership west, as she realizes a long-time dream of studying sciences at the University of Victoria.

What’s better than a 20-hour slow-smoked brisket slider on a barley bun? A 20-hour slow-smoked brisket slider paired with the perfect lager. Nothing beats this combo — except for more ribs and sliders paired with more craft beer. Throw in sunshine and some live indie blues and you have the makings of a perfect summer day. This is Barley & Smoke: Grillin’ for a Cure, a fundraising event for children with cancer that brought together Calgary’s top 10 chefs and brew masters for the taste event of the year.

Local businessman Carlos Soares is the man behind the vision for Barley & Smoke. He recalls the time he was diagnosed with cancer as a young man, walking into the cancer clinic with his father — his dad’s arm around his shoulder. Now Carlos is the father and he finds it difficult to even imagine a similar scenario with one of his kids. It’s just too painful too entertain. That’s why Carlos decided to organize Barley & Smoke with 100 per cent of proceeds going to Kids Cancer Care.

“Helping kids battle cancer is very close to my heart,” says Carlos Soares, founder and president of Divine Flooring and a Platinum sponsor for Barley & Smoke. “I suffered from advanced cancer as a young adult and know first-hand the struggle and the challenges. I was able to overcome it and I don’t want any child to have to go through what I endured.” 

Barley & Smoke was his answer.

For the cost of a $50 ticket, guests were free to sample 10 unique BBQ and beer pairings. A panel of celebrity judges selected the winners. While all the BBQ fare and boutique beer were more than delicious, the contest came down to four winners:

1. Banded Peak Brewing won Best Beer with their Guvamorphology Gose sour beer;
2. Prairie Dog Brewing won Best Ribs for their St Louis-style pork ribs;
3. Jane Bond BBQ took the Best Slider award for their 20-hour slow-smoked brisket slider on a Village Brewery barley bun; and
4. The Best Team award went to Cold Garden and Jane Bond BBQ for their pairing of East Calgary Lager with 20-hour smoked brisket slider.

On display at the event, were five boutique reading forts, designed and built by individuals from the home building industry. This is where the guests could cast their votes. The forts were named after zodiac signs to evoke a starry night at Camp Kindle in the foothills. The crowd favourite was the Pisces Fort by LeAnne Bunnell Interiors and Unique Projects, who took the Best Fort prize.

With 550 guests in attendance and generous sponsorships from the Calgary restaurant, craft beer, home building, financial and legal industries, Barley & Smoke raised $55,700 for Kids Cancer Care. Factor in the extra $60,000 donated in labour and material costs for the reading forts and the total value tops $115,700.

“The generosity of spirit displayed by these sponsors feels like a miracle right now during this economic downturn,” says Christine McIver, founder and chief executive officer of Kids Cancer Care. “Times have been tough for everyone in this city and the way these industry leaders have pulled together to make this event happen exudes that can-do attitude that Calgary is famous for. It’s so refreshing right now and it couldn’t have come at a better time. We deeply appreciate it.”

Funds raised at Barley & Smoke will go to Kids Cancer Care’s programs designed to help families during their childhood cancer journey.

On behalf of the children and families we serve, Kids Cancer Care extends a heartfelt thanks to the following companies that gave their time, talents and treasure to make the first annual Barley & Smoke a success.

Barley & Smoke tickets go on sale in the spring.

View the Barley & Smoke video here.

Evie’s journey with cancer began before she was even born. Nobody knew that she had cancer, but it didn’t take long for us to find out.

Babies cry a lot, but Evie cried more than most. She had to be held all the time because that was the only way she could sleep. When she was just 3 weeks old, we noticed that she never looked directly at anything. It always seemed as though she was looking around things, like something was blocking her vision. It wasn’t until we could see into her pupil that we started to suspect that something was wrong. The pupil in her right eye wasn’t black, it was grey.

We went to the hospital just before everything was closing for Christmas and we got the diagnosis. Evie had bilateral retinoblastoma. Bilateral retinoblastoma is a genetic form of cancer that is caused by a mutation in her DNA. Every single cell in her body is affected, and we learned that on top of the tumours in her eyes, our Evie would forever be at high risk for secondary cancers.

The technology and expertise for pediatric retinoblastoma isn’t available in Alberta, so we were immediately put on a plane to Toronto, Ontario, where the specialists at the Sick Kids Hospital took care of Evie. When she was 6 weeks old, they had to remove her eye because the cancer was spreading so quickly that they were afraid it would spread to her brain. After her enucleation (removal of her eye), we stayed in Toronto for 6 months where she had chemotherapy and cryotherapy.

Once the chemo was finished, we returned to Alberta, Evie with her prosthetic eye. We still had to fly to Toronto every 3 weeks to make sure the cancer wasn’t coming back and she had continued laser therapy to keep the tumours under control. By the time Evie was 5, the trips to Toronto were going well, so we were able to go less and less frequently. Finally, it got to the point where Evie was just being seen by specialists yearly in Calgary. Evie was considered a survivor by the time she was 7.

In August of 2018, Evie noted that her sinuses were bothering her and that her nose wouldn’t stop running. While waiting for the cold or sinus infection to clear up, Evie’s left eye began to swell, and her lymph node in her neck was bothering her as well. After treating her with saline, steroid sprays, and antibiotics and seeing no improvement, we took her in to the Alberta Children’s Hospital on November 9^th, where she had a CT scan. The doctors referred her immediately for an MRI and a follow up with an ENT (ear, nose and throat specialist) as there was something visible in her sinus.

The results of the MRI were gutting. Evie had a large mass growing in her sinus and the doctors had her admitted immediately to perform a biopsy on the mass. The results came back positive and showed that the tumour had metastasized to the lymph nodes in her neck. After many tense days of waiting, they were finally able to give her tumour a name: stage 4 olfactory neuroblastoma. Olfactory neuroblastoma is a rare cancer that occurs primarily in adults, with only a handful of cases recorded in children worldwide. In adults, the survival rate when the cancer spreads to the lymph nodes is 20%. Our family’s world was turned upside down.

Treatment began immediately for Evie after celebrating her 11^th birthday on November 24^th. Adults with olfactory neuroblastoma are not treated with chemotherapy as it does not tend to shrink this very aggressive tumour. The surgery she needed would be very invasive due to the size of the tumour, so the plan was to begin with chemotherapy and hope for the best prior to surgery and radiation. With Evie’s history of the genetic form of retinoblastoma, radiation put her at a high risk for secondary cancers, but we had no other option to treat her lymph nodes and hope for a cure.

Thanks to the Hospital at Home program through the Alberta Children’s Hospital, we could spend our nights at home. Days of chemo turned into nights with her IV pump in her backpack at home. It required lots of monitoring, but at least we could all be together, which made it easier on all of us. But even with the freedom of the pump, Evie missed a lot of school. Between the quick chemo schedule and her fluctuating immunity, her main job was to stay as healthy as possible so to not delay any of her treatments. In the end, it was worth it. Evie underwent 7 courses of chemo, which yielded very positive results. The tumour shrunk to a manageable size, which meant that the surgery would be less invasive than they originally thought.

We met with the neurosurgeon and the ENT surgeon and learned a bit more about what her surgery would entail. While they were now able to do the surgery through her nose rather than through her skull, they still needed to do a graft from her thigh to repair her skull as the cancer metastasized to the lymph nodes via that route. There were other risks involved since they would be working around the skull and brain, but we were so thankful to be moving to the next step in her care.

Before she went into surgery, we realized that there were many details we didn’t know, and most days we had more questions than answers, but we got quite good at sitting with the unknown. We knew that Evie and I would be residing in the hospital for a while once the ambulance transported her from the Foothills, where she had surgery, to the Alberta Children’s Hospital, where she would be in ICU until she was stable enough to move to the oncology unit. With no timeline in mind, and no expectations of how the surgery would go, we handed our girl to the care of our very capable doctors and prayed for the best.

Evie did great. She is a warrior whose resiliency shines through time and time again. It will never cease to amaze me how she gets through life’s tough stuff with a smile on her face. The surgery went well. The doctors were quite confident that they removed the bulk of the tumour. There were no complications, and once we were back in the children’s hospital, Evie rested comfortably.

Evie is a powerhouse. Forty eight hours post-op to remove a tumour, reconstructive neurosurgery, and a very painful leg graft later and this girl was DISCHARGED, wheeling herself out of the unit to go home. Everyone was amazed at this girl and her resiliency. Once healed up from the surgery in full, including another procedure to remove over 6 feet of gauze from her sinus, Evie would be ready for the final step of her treatment.

The third course of treatment involved radiation therapy to try to neutralize any cancer cells that were still in her sinus and all throughout her lymph nodes. To help improve her chance of survival, the team of doctors decided to send her to receive proton radiation therapy, a more precise and less invasive form of radiation that was less likely to trigger secondary cancers post treatment. Proton radiation therapy is not available in Canada, so we had to go from Airdrie, Alberta to Jacksonville, Florida as soon as she recovered from her surgery.

We spent two and a half months in Jacksonville, getting treatments 5 days a week, 45 minutes a day.  Evie was fixed to a bed with a specially fit mask, so she could not move. The treatments were slow and painful to watch; many of the steps forward we made post-surgery slowly faded as she lost her sense of smell and taste again, this time with no guarantee it would return. Her skin burned from the inside out; and while we were so thankful for the treatment, it was hard to watch her go through this. Her neck, her eyes and nose received high-dose radiation, and the skin was red, chapped, and dry. You can imagine what her throat and sinus felt like at this point, but she never complained. She’s did the best she could every day and we couldn’t be more proud of her.

When we found out that Evie would be receiving her treatment in Florida, it was a no-brainer for us that we would save some money to spend a day at Universal Studios, since she loves Harry Potter. A day in Disney would be wonderful too as we’d never been.  Our plan had always been to celebrate however we could, with no expectations due to Evie’s treatment and healing. Unbeknownst to us, children receiving treatment at the proton centre were eligible for tickets to almost every theme park in Orlando, and some of them for multiple days! We were able to put the money we were saving to buy park tickets toward our accommodations and take the kids on a vacation of a lifetime thanks to the amazing sponsors who help kids like Evie and their families.

In Jacksonville, we met with our radiation oncologist for the last time and discussed what comes next for Miss Ev. She will be monitored closely and regularly with MRIs, scans, bloodwork, and tests for the next 5 years and beyond. Now that we’re home, our girl is doing phenomenally well; her spirits are high, her body is doing what it should be doing, and now that she’s done her radiation the name of the game is HEALING. There is no quick fix, we’re in this for the long haul, but we are forever grateful for our doctors, Kids Cancer Care, and our family and friends who have supported us along the way. Evie is now back in school, and while she’s already missed a few days due to fatigue, aches, and illness, we are happy to have her back.

Back in 2017, before we began this journey again, Evie gave a speech for a school Terry Fox Run that included the line, “My cancer may come back…” Looking back at that speech, that line had haunted me for almost a year to the day when we began the fight for her life again. You hope and pray that it won’t come back, but when it did, it didn’t change the love we have for our girl, who we are as a family, or how we live our lives. Evie is as resilient as ever, maybe even more so, if that’s even possible, and we’ve all grown leaps and bounds.

We have so much to be thankful for, and we live our lives savouring each and every moment, because that’s the best thing we can do together.

– Veronica, Evie’s mom

My journey with Stollery Children’s hospital began in February 2002, when I was only eight months old. It was a very cold Friday in Northern Alberta. My family had just moved into a new home and the movers were moving our belongings into our home. I was crying hard and my mom was holding me in her arms to calm me down. A few minutes later, I stopped crying and my face turned blue.

My mom was screaming and called my dad for help. They rushed me to the local hospital in Fort McMurray, but it was deemed to be life-threatening, so I was airlifted to Stollery Children’s Hospital for an emergency operation. My parents then started the long drive down to the Stollery Children’s Hospital. Not knowing how serious the situation was it surprised my parents to learn that I was already in the operation room when they arrived. They discovered that I had a chest tumour and fortunately the tumour was benign. But my connection to the health profession continued from there.

After the age of four, I was diagnosed with serious thyroid problem. My weight went down a lot and my heart rate was beating super fast. I felt like I was having a heart attack all the time. I underwent an operation. When I was eight years old, I felt a pain in my abdominal area when I was in a certain posture. I did not think it was anything serious, so I did not inform my family until the pain level continued to elevate. My parents took me to the family doctor to check it out, and this time, I was diagnosed with cancer. Once again, I was being transported to the Stollery Children’s Hospital for yet another operation. The tumour was huge, and they removed it during the surgery.  But I was still required to have chemotherapy afterwards to kill the remaining cancer cells. It is a long journey to recovery. Even though the cancer is gone, I now have several health issues related to the treatments back then.

During the treatment period, I missed almost a full academic school year and I was having difficulty of keeping up my school work. I also realized I was a bit different than the other tweens, and I didn’t have a lot of confidence and the social skills to make friends. At the hospital, the social workers and hospital staff introduced us to the Kids with Cancer Society, an Edmonton-based charity that helps children and families facing childhood cancer. My parents inquired more and learned how to become involved with Kids with Cancer and another organization called the Kids Cancer Care Foundation of Alberta, a Calgary-based charity that helps children and families affected by cancer. My parents signed me up for Kids Cancer Care’s summer camp. At camp, I no longer felt alone or isolated and I look forward to attending summer camp every year. We discovered that each year after summer camp, my emotional strength got better and my academic results also improved.

This was my last year of high school and my last year of summer camp. I have enrolled in the Bachelor of Education program at the Keyano College to pursue post-secondary studies. I miss Camp Kindle already and would like to volunteer at summer camp in the future. I want to apply my experience and learning to help other kids affected by cancer. I would like to thank all the staff and volunteers at the Kids Cancer Care and all the donors who give us such a wonderful time while we are battling this disease.

~ Kaylun Gomez, cancer survivor and camper

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Davis’s mother Janine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Michelle, Lily’s Mom

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo gallery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Jennifer, Laura the Superstar’s Mom

Laura’s photo album

With the recent outbreak of measles and talk in the media about the growing anti-vaccination movement, Mackenzie, Kids Cancer Care’s nursing manager, thought you may want to get the straight facts on this disease and on vaccinations in general.

As a member of Kids Cancer Care, we are part of a community that supports immuno-compromised children, who cannot be immunized due to their treatment regimen and are therefore vulnerable to infection. This is a responsibility that Kids Cancer Care takes seriously and, as a member of our community, I know it is something you also take seriously.

The spread of infectious diseases can be effectively mitigated by the immunization of eligible individuals. Immunization not only protects the individual, but also those at risk of infection. If you are interested in learning more about immunization safety and efficacy, please click here.  

About measles
Contrary to popular belief, measles is not a benign childhood disease. It’s actually a pretty nasty one. It’s potentially dangerous to long-term health and can even be life-threatening at times. It is strongly recommended that you seriously consider getting vaccinated against the measles.

Measles is a highly contagious disease caused by a virus in the paramyxovirus family. The measles virus infects the respiratory tract, and then spreads to the rest of the body. It can be spread when an infected person coughs or sneezes. The virus stays active and contagious in the air or on surfaces for up to two hours. It can also be spread through direct contact with an infected person. An individual with measles is contagious from one day BEFORE the onset of symptoms to four days AFTER disappearance of the red blotchy rash. (Alberta Health Services, 2019; Government of Canada, 2019; World Health Organization, 2018)

Measles vaccine
Before the introduction of measles vaccine in 1963 and widespread vaccination initiatives, major measles epidemics occurred approximately every two to three years and caused an estimated 2.6 million deaths each year. (World Health Organization, 2018) Measles vaccination prevented approximately 21.2 million deaths globally between 2000 and 2017, accounting for an 80 per cent drop in measles-related deaths.

Measles: complications and death
In 2017, despite the availability of a safe and effective vaccine, there were a total of 110,000 measles-related deaths worldwide. The majority of these deaths occurred in children under the age of five.  (World Health Organization, 2018)  

Most measles-related deaths are caused by complications associated with the disease. Approximately 40 per cent of infected individuals experience serious complications from the virus, including the following:

1. Blindness  
2. Encephalitis (an infection that causes swelling of the brain)  
3. Severe diarrhea and subsequent dehydration
4. Ear infections  
5. Severe respiratory infections (e.g., pneumonia) (World Health Organization, 2018).

Serious complications are more common in children under the age five and in adults over the age of 30. (World Health Organization, 2018)

Measles in Canada
Although measles was eliminated in Canada in 1998, the disease is not uncommon in other parts of the world and Canada has imported cases of the disease through travel of unvaccinated individuals. 

In 2016, 11 laboratory-confirmed cases of measles were reported in Canada.Nine of the 11 cases were individuals who had not been vaccinated. The vaccination status of the other two were unknown. Five cases required hospitalization. All of the five hospitalizations involved children under four years of age. (Government of Canada, 2017; Government of Canada, 2019; Public Health Agency of Canada, 2019)

To date, in 2019, 51 laboratory-confirmed cases of the measles have been reported in Canada. These cases were reported in Quebec, British Columbia, the Northwest Territories, Ontario, and in Alberta. As of today, there are currently six active cases of measles in Canada including a recent case in Edmonton and area.  (Government of Canada, 2019; Public Health Agency of Canada, 2019)

Facts about measles

1. Measles can be prevented with vaccination.
2. Measles occurs worldwide and is a highly contagious respiratory infectious disease. Unvaccinated persons can catch this airborne virus by walking through a room up to two hours after an infected person was in the room.
3. Symptoms include:
   1. Fever of 38.3°C or higher 
   2. Cough
   3. Runny nose
   4. Red eyes
   5. Red, blotchy rash that spreads from behind the ears onto the face, trunk, arms and legs and usually occurs three to seven days after the onset of fever
4. An individual with measles is contagious from one day BEFORE the onset of symptoms to four days AFTER the disappearance of the red blotchy rash.
5. There is no cure for the measles virus. Treatment is meant to manage symptoms of the virus and prevent serious complications.
6. Measles is 100 per cent preventable with vaccination.  
7. The measles vaccine is available as measles-mumps-rubella (MMR) or measles-mumps-rubella-varicella (MMR-Var).  
8. Two doses of the vaccine are recommended to ensure immunity.
9. The measles vaccine is recommended for routine immunization in children, susceptible adults born in or after the year 1970, susceptible health care workers, travellers and military personnel. (Alberta Health Services, 2019; Government of Canada, 2018; Government of Canada, 2019; World Health Organization, 2018)
   

Common Questions about Measles
If you have more questions about measles, please visit the Alberta Health Services immunization page here.

What is the recommended immunization schedule?
Click here for doctor-recommended immunization schedule.

What is Herd Immunity?
Herd immunity or community immunity occurs when large groups of people within a population are immunized. This helps to prevent the spread of communicable diseases, such as measles, and protect not only the individuals who have been immunized but also vulnerable members of the community who cannot be immunized. Infants too young to be immunized, individuals with compromised immune systems, patients undergoing cancer treatment, transplant recipients and the elderly rely on herd immunity to give them some degree of protection against some communicable diseases. (Alberta Health Services, 2019; Government of Canada, 2019)

Is Herd Immunity a good alternative to the measles vaccine?
For herd immunity to be effective and help prevent the spread of measles within a large group of people, 95 per cent of the population must be immunized against the disease. For children and adults who are able to be immunized, herd immunity does not give enough individual protection to be considered a good alternative to getting immunized. (Alberta Health Services, 2019; Government of Canada, 2019)

Where can I learn more about recommended immunizations?
Alberta Health Services has a wealth of peer-reviewed, research-based information on immunizations. You can find it here.

Where can I learn more about vaccine safety?
Questions or concerns?  Mackenzie Murawsky, Kids Cancer Care’s nursing manager, would very much like the opportunity to speak with you. Please feel free to contact Mackenzie by phone or email.

E mmurawsky@kidscancercare.ab.ca
T 403 984 6214

References
Alberta Health Services. (2019). Common Questions about Immunizations and Immunity.
Retrieved from http://immunizealberta.ca/i-need-know-more/common- questions/immunizations-and-immunity

Alberta Health Services. (2019). Common Questions about Measles. Retrieved from http://immunizealberta.ca/i-need-know-more/common-questions/measles

Government of Canada. Measles: For health professionals. (2019).
Retrieved from https://www.canada.ca/en/public-health/services/diseases/measles/health-professionals-measles.html

Government of Canada. Measles surveillance in Canada: 2016. (2017). Retrieved from https://www.canada.ca/en/public-health/services/publications/diseases-conditions/measles-surveillance-canada-2016.html

Government of Canada. Measles vaccine: Canadian Immunization Guide. (2018).
Retrieved from
https://www.canada.ca/en/public-health/services/publications/healthy-living/canadian-immunization-guide-part-4-active-vaccines/page-12-measles-vaccine.html

Government of Canada. Public Health Agency of Canada. (2019). Measles in Canada.
Retrieved from https://www.canada.ca/en/public-health/services/publications/diseases-conditions/measles-surveillance-canada-2016.html

Government of Canada. (2019). Weekly measles and rubella reports. Retrieved from https://www.canada.ca/en/public-health/services/diseases/measles/surveillance-measles/measles-rubella-weekly-monitoring-reports-2019.html

World Health Organization. (2018). Measles [Key Facts].
Retrieved from https://www.who.int/en/news-room/fact-sheets/detail/measles

What started as a normal day on Friday, August 31, quickly become one of the worst in lives. Over the past few days our daughter Evelyn had been complaining of pain in her side, so I decided to take her into the Alberta Children’s Hospital. At worst, we thought, it might be appendicitis or something. 

The doctor was concerned with Evelyn’s pain level, so he ordered an ultrasound. After the ultrasound, the ER doctor came into the room and sat me down. He asked if I could call my husband to come in. Then he told me they had found a softball-sized tumour in Evelyn’s abdomen. Thus began our journey with cancer.

When my husband arrived at the hospital, they sat us down to meet with an oncologist, who told us they were concerned that the mass was cancerous. Evelyn had a CT scan right away and we were admitted to the oncology unit overnight, while we waited for an MRI and further information. I don’t think any of us slept that night.

After the MRI, we heard the word cancer again and the doctor booked Evelyn for a biopsy. It was the September long weekend and school was supposed to begin on Tuesday. Evelyn was devastated at the thought of missing the first day of school, so her biopsy was planned for that Wednesday. The biopsy results came in a few days later, confirming that Evelyn’s mass was neuroblastoma, a type of cancer stemming from the adrenal glands. Further scans revealed that it was stage 4 and they suspected it had metastasized to her bone marrow.

At the recommendation of Evelyn’s surgeon and oncologist, we decided to do surgery prior to chemotherapy. Ev was in a lot of pain and they hoped that by removing the primary mass, they could ease the pain, which would give her a better quality of life going into the rest of her treatment.

Evelyn had the tumour removed on September 25. That day, they also inserted a Medcomp (central line) and performed four bone marrow aspirations. She was in surgery for just under eight hours — probably the longest eight hours of our lives. At the end of the surgery, our surgeon came into the room and called the surgery a huge success. They were able to successfully remove the entire primary mass! Unfortunately, the bone marrow aspirations, conducted during surgery, revealed that the cancer had metastasized to her bone marrow. Removing the primary tumour was only the first step in what will be a long journey towards getting our girl back to healthy.

Evelyn has currently completed six rounds of chemotherapy. She is an amazing kid! Although she struggles with vomiting and nausea and repeated infections, Evelyn smiles every day and, to help pass the time, she learns a new skill with each admission. During this time, she has learned to knit, mastered many a board games and perfected a series of magic tricks.

Prior to her cancer diagnosis, Evelyn was very active. CrossFit, running, hiking and bike riding were just some of the daily activities she used to participate in. She ran a 10-K race only weeks before her cancer was found. In an attempt to stay active and prove that cancer will not stop her, Evelyn has made a habit of doing burpees at some point during every admission. See Evelyn’s famous burpee here.

Right now we are preparing for what will be the toughest of Evelyn’s treatment. She is starting two rounds of high-dose chemotherapy, each with an accompanying bone marrow (stem cell) transplant. This phase of treatment will take approximately three months to finish. Following phase two of treatment, Evelyn will undergo radiation, followed by six months of immunotherapy. Our hope is that by December 2019 Evelyn will be finished treatment.

Charities like Kids Cancer Care mean so much to our family. From activities like enjoying Pizza Nights on the unit to riding the Polar Express and seeing A Christmas Carol, we are so grateful for the effort they put into providing moments that make our entire family feel special and cared for. Evelyn has a younger sister named Harper. At seven years of age, Harper has had to deal with some very big adult things and Kids Cancer Care has been so intentional in making sure Harper has had some amazing experiences and felt loved during this journey. Kids Cancer Care recognizes that cancer is something that impacts the entire family.

Evelyn’s care has meant long stays at the hospital, logistics and planning and some very tough days. This journey for our family is made hopeful by the insights of an amazing team of doctors and nurses and the ever-present support of friends and family. Every day, we make a choice to get up, love life and be grateful for each moment. It is odd sometimes to live in a place where my heart is simultaneously full and completely broken. This is not somewhere I ever imagined we’d end up. We have had to sit in appointments and hear unimaginable and earth-shattering, but as we have pieced together this journey for Evelyn and our family, we have learned who our tribe is. We are surrounded by the most amazing people, from friends and family to hospital staff and volunteers and local charities like Kids Cancer Care. While I hope this is a place no one ever needs to be, I can assure you that if you ever find yourself where we are today, it is survivable.

~ Heather Roy, Evelyn’s mom

Evelyn’s photo album