We are the Haggas family. 

Parents: Mark and Sue, children: eight-year-old Meghan and eleven-year-old big brother Ryan. Pets: Edalynn the Beta Fish, Toothless the Leopard Gecko, and beloved family dog Nurse Treasure. This is our story of childhood cancer during the COVID-19 pandemic.

On February 11, 2020, our lives changed the day our five-year-old daughter Meghan was diagnosed with high-risk pre-B acute lymphoblastic leukemia (ALL).

The day after our son Ryan’s birthday in early February, Meghan developed a bad cold. We thought nothing of it until 10 days and a few nosebleeds later, the cold showed no signs of letting up. We took Meghan to a walk-in clinic, thinking it was tonsillitis. The doctor put her on some antibiotics, but she wasn’t getting any better. 

The morning of February 11, 2020, I was at home running my daycare business, with Meghan keeping me company. She was sad to have missed out on her kindergarten field trip to the Red Deer Hospital that day due to her cold. My husband had just dropped Ryan off at school. No sooner had he done that than I was calling to ask him to come home as Meghan was having another nosebleed. On the advice of HealthLink, my husband took Meghan to the emergency centre at the Red Deer Hospital. I contacted my day home family to inform them I was closing for the day and drove to the Red Deer Hospital to meet up with Mark. Meghan was sent for a chest X-ray and blood work. Mark left the hospital to pick up Ryan from school as we figured it would take a while to receive the test results. We would meet them at home probably with a prescription of antibiotics for Meghan.

I was alone in the hospital room of the ER ward with Meghan when the doctor came in. Closing the door behind him, he sat down across from us. He said the chest X-ray results were clear, but the blood work was abnormal. Then he immediately told me it was cancer, blood cancer, leukemia. The doctor calmly went on to say the oncology team in Calgary at the Alberta Children’s Hospital would further determine the details of the diagnosis, but there was no doubt, with the levels in her blood, that this was leukemia. I then heard the phrases…”life-threatening…blood transfusion to begin immediately along with cancer treatment.” The doctor told me I had time to call my husband to ask him to drop off an overnight bag for us. They had already arranged to have an ambulance take us to Calgary. The doctor opened the hospital room door and left.

I gave Meghan (or Muffin as we call her) a kiss on her head and told her I had to go into the hallway for a minute. I slowly closed the door, watching her scribble in a coloring book I’d packed that morning when she’d left with Mark for the hospital. The minute-to-minute business of the ER continued rushing around me as I collapsed to my knees, going over in my head what I was about to tell my husband.

When I called him, Mark was in the hallway of our children’s elementary school, chatting and laughing with the school’s admin, picking up Ryan after a fun full day of grade three. I then called my parents in Newfoundland who immediately booked a cross-Canada flight to be with us. I then went back to Meghan’s hospital room and sat with her.

What is anyone thinking at a moment like this? What goes through your mind when you think of a childhood cancer diagnosis? Do you think of years of watching your child suffer through painful procedures and possible gut-wrenching outcomes? Do you think of your support systems? Do you think of your other children and how it may affect them to see a sibling go through treatment? Do you wonder who will take care of them if you are at the hospital?

The oncology team at the Alberta Children’s Hospital gave us the heartbreaking news of Meghan’s diagnosis and a glimpse of the long road ahead. It would include two and half years of treatment for her high-risk leukemia.

Our first 10 days in the oncology unit were emotionally difficult. The pediatric oncology social worker made a referral for a room at the Calgary Ronald McDonald House (RMH). She also gave us information about Kids Cancer Care and Fostership.

My husband and I took turns walking across the sidewalk to RMH for naps or a warm meal in the middle of the night, while the other parent slept beside Meghan in her hospital bed, holding her hand. My sister came from Yellowknife and stayed at a hotel in Calgary for those first three days. Visiting back and forth with Meghan, bringing her PJs and stuffies, making her laugh, as my sister and I stole glances of disbelief at the journey ahead for our family.   

Our son Ryan went home to Red Deer. His grandparents took care of him, while we dealt with Meghan’s first hospital stay, first blood transfusions, first surgery (chest port implantation), and first IV and oral chemotherapies. 

Five-year-old Meghan was scared. 

For Meghan, the fear of never getting out of the hospital and never getting better was very real. She went from being a little five-year-old, enjoying her first few months of kindergarten, dancing in ballet concerts, and playing soccer with her buddies to being a pediatric cancer patient.

We learned from the oncology team that after 10 days our family would be discharged until our next visit. Being able to tell Meghan this news was amazing! We were staying at RMH for a few more days before heading home to Red Deer with her numerous daily medications. In those dark moments of fear, describing the RMH craft room, the big cozy beds, and the other children there, gave Meghan light, gave us hope. The playroom at RMH was open. We met other medical families and their littles in the dining room. During that first week at the Alberta Children’s Hospital, we met other families going through the initial diagnosis like us, families going through treatment and a parent’s worst nightmare, relapse.  

We settled at home in Red Deer with our medical journals and numerous medications. We absorbed a ton of information that first week. The oncology team taught us how to keep a pediatric cancer patient safe from bacterial infections. This is necessary as the chemotherapy literally takes their immune system to zero. We ordered wall-mounted hand sanitizers for both the front and back entrances of our home. We kept Meghan home from school, and barred anyone who may have a cold from visiting our home. These were all logical steps in this new reality for our family.

Friends dropped off meals, Ryan went back to school and Meghan rested in bed with the family dog napping beside her. The dog was especially wonderful during at-home medication time. We would say meds and the dog would run to wherever Meghan was, so she could snuggle him while she took her numerous yucky-tasting oral chemotherapies. Meghan and Ryan video-chatted with their auntie and cousins up in Yellowknife and were excited for her to fly down again soon for a visit.

At home, we read through pamphlets from the oncology team and social worker. Mark and I soon learned about Camp Kindle, a summer camp where Ryan could meet siblings like him, and Meghan could make friendships with children like her. During weekly visits to the oncology out-patient clinic, we passed Kids Cancer Care posters of smiling bald-headed children at camp. “Well,” we thought, “thank goodness our kids will have this support system as they go through this nightmare.”

After a few weeks, we said goodbye to the grandparents and thanked them for their support. Big hugs as they left for the airport with a promise for them to hop on a plane at a moment’s notice should we need them. It was around this time that we received news that a child of one of the cancer families we connected with at Alberta Children’s Hospital had passed away. I visited in person with a few close friends, sharing coffees, tears, and laughter as the healing strength of a hug is so important when dealing with such unbelievable stress as a medical family.

I bet you can figure out what world event shook us and many other medical families next—the COVID-19 virus.

The COVID-19 virus and connecting with Kids Cancer Care resources.

We talked with Meghan about the back and chest pokes that were planned to occur once a week, then once a month. She was scared. She was tired of the process. It was hard. Five months into treatment, Meghan’s hair completely fell out. She told us no one looked like her. I contacted Kids Cancer Care and discovered some amazing staff working on innovative Zoom programs to encourage social connection between pediatric cancer families.

We connected with the PEER program through Zoom once a week. This allowed Meghan and her brother to talk to kids like them while playing fun online games and participating in Zoom-based exercise and physiotherapy sessions. Kids Cancer Care also offered weekly Zoom programs with craft activities. I signed up too and loved the Zoom aerobics classes with other Kids Cancer Care Moms! 

Why the emphasis on creative Zoom-based cancer support for families? You guessed it! The risk of COVID-19. Kids Cancer Care had moved programs online to support families, while protecting medically vulnerable children like our six-year-old medically fragile, immune-compromised little Leukemia Warrior Princess Meghan. That COVID-19 virus was now a global phenomenon.

• Schools closed
• Recreation centers closed
• Playgrounds were roped off with yellow police tape
• Family members could no longer fly in to visit
• For a time, my husband was the only member of the household allowed to go out in public to do grocery shopping
• Seeing friends in person to hug was too risky
• Common areas and playrooms at Ronald McDonald House closed
• Summer camp at Camp Kindle closed
• Siblings were no longer permitted in the out-patient clinic of the oncology ward at the hospital
• Only one parent at a time was permitted in the oncology out-patient unit of the Alberta Children’s Hospital

Long periods of time between 2020 and 2022 passed when the only other people my children saw were Kids Cancer Care children and staff on Zoom and Meghan’s oncology team. I stopped working those two and half years to take care of Meghan. We switched from online school after two months to begin homeschooling to better accommodate Meghan’s medical appointments and energy levels. 

As much as other well-meaning bystanders or friends tried, we felt that Kids Cancer Care staff and families were the only people who could truly understand and relate to the journey we were on.

In August 2020, we had our first of three experiences as a family at Camp Kindle. Meghan was well enough to travel but she was feeling nauseated and crummy most of the time. Kids Cancer Care provided us, for free of charge, three-night accommodations at Camp Kindle and full use of the facilities.  We took them up on their offer, packed our food, packed all of Meghan’s medications, and away we went! This place must be seen to be believed. The scenery is amazing, but the sheer amount of effort Kids Cancer Care staff and volunteers go through to give cancer families the opportunity to enjoy the great outdoors together while keeping in mind that pediatric cancer patients need access to cozy beds, bathrooms, and living rooms is fantastic! Often during our first stay, my husband and son would enjoy a cozy campfire outside while I read a book inside, watching over Meghan as she slept off the nauseating side effects of oral steroids and chemotherapy. Meghan would then wake up and sit outside on my lap listening to the nearby brook and the birds in the rustling trees. 

Fast forward to August 2021. Seven-year-old Meghan had moved into the maintenance phase of treatment and was now receiving spinal and IV chemotherapies at the Alberta Children’s Hospital only once a month, as opposed to every weekend. She continued with her daily oral chemotherapies at home but had more good days than bad and her immune system was slowly growing stronger as the IV chemotherapy decreased. In discussion with our oncology team, we decided to return to in-person school for both of our children in September 2021. 

Another wonderful program for Kids Cancer Care families is their Cancer in the Classroom presentation. Meghan had left school halfway through kindergarten and was now returning to grade two. How would we navigate this transition? Our family worked with Kids Cancer Care staff to develop a customized presentation, on which Megan took the lead. The presentation explained to her grade-two classmates why she had been away from school for so long, why she would still be missing school for medical appointments (Meghan was still on a 30-day cycle of IV chemotherapies, oral steroids and at-home chemotherapies) and anything else she wanted to share with the class.

This was a surreal moment!! My husband and I sat in the back of the grade-two classroom in the tiny chairs (our son Ryan was just down the hall in his grade-five class), colorful math and learning posters covering the walls of the room, as our seven-year-old girl sat in front of her peers and proudly told them all about her cancer journey. Ms. Kimberly Zoomed in from the Kids Cancer Care office in Calgary as Meghan walked the class through the presentation. Kids Cancer Care also gave Meghan a Monkey in My Chair stuffy, which the teacher would place in Meghan’s seat on the days she could not be there. What a fantastic way to promote empathy and compassion in classrooms for medical children.

On Meghan’s two-year cancer diagnosis anniversary, her elementary school completed a social justice project and collected toy donations for Kids Cancer Care programs. Meghan and I were able to deliver this huge amount of gifts to Kids Cancer Care on our way to one of Meghan’s monthly IV chemo appointments at the hospital.

Eight-year-old Meghan completed her two and half years of active treatment on June 19, 2022. We were pleased that the surgery on June 20^th to remove her chest port was a success as this allowed time for her to recover before attending her first Camp Kindle summer camp with her brother Ryan from July 4^th to July 8th.

Our children were finally able to meet in person the other cancer children and siblings they had been Zooming with for the past two and half years!!

We take things one day at a time because sometimes the future possibilities can seem overwhelming. Having the Kids Cancer Care support network has helped us cope with the never-ending ups and downs of a childhood cancer diagnosis, active treatment, and long-term treatment.

Thank you, Kids Cancer Care.

Love,

Meghan and family

XOX

When I was two and half years old, I was busy playing dress up with her older sister Allison. I squeezed into a shirt that was way too small. When my mother finally rolled it off my arms and head, she noticed it had left little dark spots. Mom immediately booked an appointment with the pediatrician, thinking I should be eating more of those vegetables I hated and still hate today.

The appointment was scheduled for Friday afternoon, March 30, 2007 at 4:45 pm. By 5:30 pm that same day, I had my first blood draw. In less than 24 hours I was admitted to our local children’s hospital in Spokane for further testing. Five days later, they received the results. I was diagnosed with MDS (myelodysplastic syndrome) and AML (acute myeloid leukemia), both are types of blood cancers. Those little dark spots?  Petechiae. The first of many visible signs that I had cancer.

I had only one treatment option — a bone marrow transplant. We didn’t have to look far for a donor as my four-year-old sister Allison was a six out of six match. My treatment regime included total body irradiation. In my opinion, this is similar to having your entire body placed in a microwave oven. As I was too small for the machine, I was placed on a gurney against the wall with a radiation beam concentrated on her entire body. Combined with high doses of chemotherapy, this would kill all the cancer cells and all the healthy cells in my body.

I became very sick from the treatment. I had painful blisters in her mouth and throughout my GI tract, making eating nearly impossible. My skin was burnt bright red and my gorgeous blonde hair began to fall out in chunks. I was receiving blood transfusions daily and platelets every three days. I spent most of my days in isolation as her immune system was depleted, putting me at risk if I was exposed to something. The purpose of the protocol was to take my immune system to ground zero, so my body was less likely to reject the donor cells. I spent the next five months in a hospital room.

Once I was cleared to go home, I was excited to see my bedroom, toys, and dogs. I was scheduled to start pre-school in the fall of 2008. That was all put on hold when I relapsed.  I would spend my fourth birthday in the hospital, waiting for another bone marrow transplant. This hospital stay was much longer. I had more complications and a thirty per cent chance of survival.

My second transplant would be in Calgary at the Alberta Children’s Hospital with a life-saving donation of a stranger’s cord blood. At this time, my family was introduced to Kids Cancer Care. My sisters Allison and Annaka were able to attend Kids Cancer Care programs as siblings, but I was too sick. One of the first programs I attended was the Halloween Howler. It was hosted in the gym at the hospital, but I was in isolation, so the volunteers, dressed in their costumes, came to my hospital room, and waved through the window. The following summer, I attended SunRise, a weeklong day camp that included one night at the big camp. I only remember that night by a picture of myself standing on the dance floor with my blanket, watching the big kids dance.

I may look like an ordinary kid, but my 4′ 11″ stature tells another story. I had cataracts at age five and have artificial lenses. They will need to be replaced in a couple of years once I reach adulthood. The high-dose chemotherapy and total body irradiation damaged the development of my teeth, so I will need dental impants. Before I am able to have dental implants, I will need reconstructive jaw surgery, which involves taking a bone graft from my hip. I have 70 per cent lung capacity and my bones are extremely brittle. The list of my long-term side effects is endless. Some are known, while others are yet to be discovered. I will see specialists multiple times a year for the rest of my life.

Through the years I have participated in many Kids Cancer Care programs and events. I have taken part in the High Hopes Challenge at Camp Kindle, helping to raise much-needed funds for kids like me. I participate in the PEER exercise program, which helps reduce long-term side effects and makes movement fun.

I am also in the Teen Leadership Program, known as TLP. The TLP program helps teens build leadership skills while having opportunities to give back. One of my first TLP events was volunteering at Halloween Howler, the very same event I had experienced through my hospital window when I was four. I had come full circle.

All of these programs would not be possible without the support of generous donors. Thank you for your continued support.

~ Amanda

On September 15, 2016, the Pediatric Oncology Experimental Therapeutics Investigators Consortium (POETIC) and CorMedix Inc., announced a powerful new partnership in the fight against childhood cancer. With the new partnership agreement, POETIC and CorMedix will work together to develop a promising drug called CRMD-005 as a potential treatment for rare children’s tumours, including neuroblastoma and osteosarcoma.

CRMD-005 is a proprietary form of Taurolidine, an anti-microbial currently used to prevent infections in catheters. A safe product that causes very few side-effects, Taurolidine is also being studied as a treatment for cancer.

The new research effort will begin with pre-clinical studies to demonstrating its role in immunotherapy on pediatric cancer models in the laboratory. Laboratory studies show that Taurolidine is capable of inhibiting the growth of cancer cells at concentrations of 100 times lower that that which is needed for the drug’s antibiotic activity, suggesting the drug’s high tolerability (the degree to which overt adverse effects of a drug can be tolerated by a patient).

Working with POETIC physicians and scientists, Dr. Aru Narendran will lead the pre-clinical efforts, which will involve further defining Taurolidine’s potential role in treating pediatric cancers, especially in relapsed and drug-resistant cancers. It will also involve identifying the best drugs to combine with Taurolidine to plan for and test in future clinical trials.

“Our goals are to better elucidate Taurolidine’s mechanism effects and leverage its history of safety to maximize its anti-neoplastic potential in an intelligent and efficient manner,” said Dr. Narendran, a Kids Cancer Care-funded researcher in the Experimental and Applied Therapeutics Research effort at the Children’s Cancer Research Program at the Alberta Children’s Hospital and University of Calgary.

The program will involve collaboration with several National Cancer Institute centers that are part of the POETIC group, including Memorial Sloan Kettering Cancer Center (MSK), Weill Cornell Medical Center, Alberta Children’s Hospital, and other top tier cancer centers of excellence.

To read more about this research effort, visit CorMedix Inc.

POETIC is a network of pediatric oncologists and researchers from 10 top-tier academic medical research centers, who are collaborating across institutions to bring promising new therapies into phase one and phase two clinical trials for children with cancer.

CorMedix is a bio-pharmaceutical company that develops and brings to market therapeutic agents to prevent and treat infectious and inflammatory disease.

POETIC recognizes Kids Cancer Care with Partner of Distinction Award

POETIC recently recognized Kids Cancer Care’s contribution to childhood cancer research with a prestigious POETIC Partner of Distinction Award. The award recognizes our ongoing support of Dr. Aru Narendran and his research team at the Alberta Children’s Hospital Research Institute and the University of Calgary. Dr. Narendran is an Experimental and Applied Therapeutics researcher at the Childhood Cancer Research Program. The only Canadian member of POETIC, Dr. Narendran is currently the lead investigator in three phase one POETIC clinical trials.

“When Erik relapsed three years ago with AML, a bone marrow transplant was his only hope for survival. Brent was a perfect match and the stem cells they extracted from his bone marrow saved Erik’s life. We are so filled with gratitude for Brent and his kind, generous heart. We are thrilled to finally find him; it’s like our families have been matched now.” ~ Carol Gracia

Although Paul and Carol have never met Brent Lewelling before, the young man from Beaumont, Texas saved their son Erik’s life in 2012 when he was battling acute myeloid leukemia (AML), a high-risk cancer of the blood not often found in children.

“It was critical that we find a donor,” says Erik’s father Paul Gracia. “If we hadn’t found the perfect match, Erik wouldn’t have survived.”

A 20-year-old college student at the time, Brent was Erik’s perfect match. He underwent surgery to have stem cells harvested from his bone marrow to donate to Erik.

“They told me there was a little boy who needed my stem cells and asked me if I was still interested in donating,” said the now 23-year-old Lewelling, who is a father himself today. “I immediately felt this pull and felt like I needed and wanted to do this, so of course, I said, ‘Yes! When do you need me?’”

Originally diagnosed with AML when he was two years old, Erik underwent months of intense chemotherapy before going into remission. He enjoyed two cancer-free years and just as the Gracias were beginning to feel that he was out of harm’s way, he relapsed. This time, his only hope for survival was a stem cell transplant, which Brent made possible.

The bone marrow transplant was a life-saving, game-changer for Erik, who has been healthy ever since.

“When the agency called to say the boy’s family wanted to make contact, they said it may take over six months to actually hear from them; the Gracias called two days later,” Brent laughs. “It was so great to get that call. My mother has never stopped asking if I’d heard from that little boy and his family. It is such a blessing and joy to know that Erik is so strong and healthy today. Mom says I’ve always had such a strong immune system, because I never get sick; now Erik has my immunity too.”

Apparently, Brent Lewelling was an ideal donor. Studies show that donations from healthy young men like Brent, between the ages of 17 and 35, lead to improved overall survival in patients and lower rates of graft versus host disease (GvHD) for patients, so they are more likely to be chosen to donate by transplant physicians. GvHD is a condition where donor-derived blood cells see the patient’s body as foreign and so triggers an immune response, leading to serious complications.

Erik was fortunate to experience no complications or rejection issues after the transplant and, today, he is a healthy, active nine-year-old boy who loves sports. He and Brent experienced an instant bond and, during the five-day visit last July, the Gracia and Lewelling families enjoyed site-seeing tours around the province, including a trip to Banff and a backstage tour of the Grandstand Show at the Calgary Stampede. Erik was glued to Brent’s side during the entire visit. He calls Brent Superman Bone Marrow.

“Brent has shown me how to make a difference in the lives of others,” says Erik. “He’s also shown me how to give love to others who need it. Brent is part of our family now.”

“It is wonderful to see Erik and his family bonding with Brent and his family,” says Dr. Faisal Khan, an associate professor in the departments of pediatrics, and pathology and laboratory medicine at the University of Calgary’s Cumming School of Medicine investigating donor matching systems to improve outcomes for patients. “But the foundation of this bonding was actually laid in 2012, when Erik welcomed Brent’s stem cells into his body and Brent’s stem cells helped Erik to get rid of the unwanted cancer cells. This strong bond between the two of them, that we in the outside world are seeing today, has in fact, existed inside Erik’s body for the past three years. This fact itself speaks to the importance of donor matching.”

“Reunions like this are rare and they inspire us to continue to build a stem cell registry that reflects the needs of patients in Canada and all over the world,” says Dr. Dana Devine, chief medical and scientific officer, Canadian Blood Services. “This reunion is a testament to the collaborative relationships that exist with our international partners and with our Canadian transplant and research communities to ultimately improve patient outcomes.”

To that end, Canadian Blood Services focuses on recruiting young men between the ages of 17 and 35 to their adult stem cell registry and expectant mothers through the Canadian Blood Services’ Cord Blood Bank.

To register with Canadian Blood Services’ One Match Stem Cell and Marrow Network visit blood.ca. Registrants must be in good health and be 17 to 35 years old. They must be willing to donate to any patient in need anywhere in the world and have Canadian health care coverage.

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

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

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

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

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

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

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

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

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

Photo gallery

Last week was a devastating week. Cancer unleashed its destructive and erratic force and took the lives of two young girls in the same day. Two families are mourning the loss of their little girls that were too young, too innocent and with far too much life left to live. Cancer robbed 18-year-old Gillian O’Blenes-Kaufman of her chance to experience the world and fulfill her dreams. And it robbed nine-year-old Diamond Marshall of her chance to grow up. Our hearts break at the injustice.

Gillian was a gifted artist and dancer, who had an enthusiasm for living that showed in every aspect of her life. She lived more in her short 18 years than most people live in 90. In May, 2013, Gillian was diagnosed with a bone cancer that had already spread to her lungs. The resulting prognosis was not good. While some people would have given-up, Gillian refused to. Her resolve to accomplish her dreams only grew and resulted in living a life that inspired many. Gillian took the world by storm and was able to check off many items on her bucket-list, such as: travelling to Greece, graduating high school with honours, designing a helmet for Brad Spence, an Olympic skier, marrying her high-school sweetheart, going on a mission trip to Mexico and completing a semester at ACAD with straight A’s. Gillian’s life was full and bright and she will be missed by many.

Diamond’s name perfectly captured her essence. Her light shinned so brightly, she captured the hearts of the world, including a princess. When Diamond was diagnosed with adrenal cancer at the age of five, she became fascinated with Prince William and Kate, while watching their wedding from her hospital bed. She told The Children’s Wish Foundation that her dream was to one day meet a princess. On July 7, 2011, the foundation helped make that dream come true and the world fell in love with the sweet little girl who gave Kate such a warm embrace. What Diamond may not have realised, was the lasting affect she had on all of us, including the Royal couple. Diamond was also the inspiration behind the Hockey Marathon for Kids and she will continue to be the reason many will lace up their skates. Diamond’s memory will continue to shine brightly and she will forever be missed.

To Gillian and Diamond’s family and friends, we grieve alongside you. We are angry that these two beautiful young ladies lives were cut short and that cancer was the cause. To the doctors, nurses and caregivers that helped Gillian, Diamond and their families, our thoughts are with you. We know that every patient has a special place in your hearts and that losing two bright souls in one day is devastating.

There is no place in this world for childhood cancer. It’s unacceptable, plain and simple. In 2015, 160 children will be diagnosed with cancer right here in Alberta. That number is staggering and it should shock and anger you. The lives of these children matter and the lives of Gillian and Diamond matter.

Christine McIver, M.S.M., CFRE
Chief Executive Officer
Kids Cancer Care Foundation of Alberta

Gillian’s art gallery

“Here in the heart of me, that’s where you’ll always be.” I am told that one of the greatest fears of families who lose a child to cancer is that their child will be forgotten. More than anything, they want to keep their child alive, if not in body, then at very least, in their hearts and in the hearts of others.

On the evening of September 30th, some 20 families affected by childhood cancer gathered at Eau Claire Market to do just that: honour the lives and memories of children taken by cancer. Not losing sight of the family nature of Kids Cancer Care, Time To Remember was suitably child-friendly with hot chocolate to warm our spirits as kids and parents of all ages crafted lanterns in honour of their lost loved ones.

Each family, each individual, brings their own special meaning to Time to Remember. I brought the only thing I could, a sincere desire to show solidarity with these families. In talking with families, I discovered that the experience of Time to Remember does not begin at 7 pm when they arrive at Eau Claire; it starts in the morning as they begin rummaging through old photos to choose just the right one for their lantern, each photo stirring new memories.

Time to Remember is a ritual, a rite, that begins early in the day and goes deep into the night. It brings families from all walks of life together to witness and share in their common loss. The symbolism of the warm light of the lanterns cutting through the darkness was not lost on the group meandering through Prince’s Island Park. The procession of families arrived at its destination, the amphitheatre of Market Square, where each family placed their child’s lantern. Gathered around the soft glow of these tiny lanterns, the group shared in a singing of Daniel Lavoie’s, Here in the heart of me. And with those words echoing through the night, Childhood Cancer Awareness Month came to a close.

Time to Remember is a fitting close to Childhood Cancer Awareness Month, an international initiative designed to illuminate the tragedy of childhood cancer and its devastating wake. With an overall survival rate of 82% for Canadian children with cancer, it is easy to lose sight of the work that remains. And yet, despite huge advances in research and care, childhood cancer is still the number one disease killing children today. So what of the children who do not make it? What of the families who lose these children? While remembering there children, Time to Remember reminds us of the work to be done — a cure for every child. You can easily fall into despondency when considering such tragedy, but hearing the families’ stories and how they have come through somehow offers you a healthy perspective on how best to support them–even if it’s as simple as just showing up.

I find it difficult to summarize the diverse experiences of these families into one message, but if I had to choose, it would be to always react to life positively and in such a way that honours its fragility and impermanence.

–Blair, childhood cancer survivor and volunteer

PS. You can get a sense of the evening from this photo collage of Time to Remember 2013, created by Monique de St. Croix of Unique Perspectives. We’re working on our photo collage for the 2014 event, so be sure to check back here or on our YouTube channel.