“It has been amazing to be recognized nationally for this research but more important, is knowing that the research may actually have potential in the real world.” ~ Colette Benko

Colette Benko isn’t your average 15-year-old. Not because she’s already conquered cancer once, but because of her scientific mind and insatiable curiosity. If Colette has it her way, she’ll be conquering cancer the rest of her life, but this time, it will be from the inside of a research lab.

Thanks to you, Colette was able to start feeding her curiosity while working as a summer research student in Dr. Aru Narendran’s laboratory at the University of Calgary. But this wasn’t the first time Colette had been in a research lab.

For the past two years, Colette has been enjoying a rewarding and successful mentorship with Dr. Narendran, a pediatric oncologist at the Alberta Children’s Hospital and an Experimental and Applied Therapeutics (ExpAT) researcher in the Childhood Cancer Research Program at the University of Calgary.

Colette first met Dr. Narendran at the Alberta Children’s Hospital when she was being treated for synovial sarcoma, a cancer of the joints and soft tissue.

“I’ve always been a science nerd, but I had never done a medical science research project,” says Colette. “When Dr. Narendran found out that I love science so much, he agreed to mentor me. He’s been a great mentor. He’s so kind and patient and he’s so committed.”

“When Colette talked to me about wanting to do research in our laboratory I was impressed by her extraordinary self-assurance, energy and keenness,” says Dr. Narendran. “She reminded me of that Ivern Ball quote, ‘Knowledge is power, but enthusiasm pulls the switch.’”

The outcome of that enthusiasm has been two award-winning research projects for Colette.

Last spring, she won a silver medal for excellence in the 2016 Canada-Wide Youth Science Fair and a $2,000 scholarship for her research into a potential new therapy for neuroblastoma, a cancer of the sympathetic nervous system often found in infants and young children. In 2014, her research into an extremely rare and aggressive brain cancer in infants called ATRT won gold in the Calgary Youth Science Fair.

“It’s so incredible to work in a lab,” she says. “To actually experience and see results, not just read about it, is so satisfying.”

Colette is especially excited about the results of the neuroblastoma research, because it may actually have practical application in the world of pediatric cancer one day.

“It has been amazing to be recognized nationally for this research, but more important, is knowing that the research may actually have potential in the real world,” Colette says.

Working with students in Dr. Narendran’s lab, Colette was studying a unique new drug against three types of neuroblastoma and found that it inhibited growth in all three by stopping the action of a protein called EZH2, which is involved in blocking tumour suppressor genes.

“Normally, our cells rely on a group of molecules called tumour suppressor genes, which constantly act to prevent malignant changes in cells, by causing them to self-destruct,” she says. “But some tumour cells overproduce a protein that actually turns off tumour suppressor molecules, so the cancer cells continue to grow. The drugs we’re studying, known as the EZH2 inhibitors, aim to block this abnormal mechanism in neuroblastoma cells.”

When Colette presented her findings at the 2016 Canada-Wide Youth Science Fair, researchers investigating similar ideas were excited to see her data, as this drug has also shown effectiveness against pediatric brain tumours.

Still in the early stages, Colette’s findings seem to suggest that the drug may not only be inhibiting cancer growth; they may actually be inducing cellular death in the neuroblastoma cells. Another promising attribute of the drug is it doesn’t seem to attack regular cells, which could mean fewer side-effects for patients.

Working as a summer research student in Dr. Narendran’s lab this year, Colette was able learn more about the necessary processes involved in conducting cancer research, while also developing her understanding of the biology of various pediatric cancers.

Colette also continued generating data on her neuroblastoma project, testing whether the drugs are actually capable of inducing death in neuroblastoma cells and assessing what effect, if any, they may have on non-cancerous cells.

After graduating from high school, Colette plans to take her quest for a cure even further. She plans to pursue a Bachelor of Health Sciences at the University of Calgary and follow that with post-graduate work in pediatric cancer research.

Thank you for making our summer student research program possible. While providing scientists with much-needed help in the lab, the program helps ensure that promising young research talent is nurtured for tomorrow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Caitlin Joyce, Macey’s Mom

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

Macey’s photo gallery

“Trade your expectation with appreciation and the world changes instantly.” ~ Tony Robbins

If you ask Patti Foulon if life is good, she’ll respond with a resounding yes, but that doesn’t mean it’s always been easy.

Patti was 24 and only two years into her marriage with Bob when he was diagnosed with an inoperable brain tumour. Four years later, Bob was gone and, at age 28, Patti was facing life as a widow. At the same time, Patti’s mother was also diagnosed with cancer. Unlike Bob, Margaret lived to beat cancer twice and passed away a few years ago at the age of 83.

“Mom lived a good long life,” says Patti, “but Bob, he was too young to die. You know what they say though, out of some bad, comes some good. Bob taught me how to be strong for other families facing cancer. There’s been a lot of cancer in my family and that’s what fuels my passion for Kids Cancer Care.”

A veteran volunteer of 15 years and a monthly donor for the past five, Patti is passionate about Kids Cancer Care. “I’ve volunteered for a lot of organizations in my life and Kids Cancer Care is by far and wide the best organization I have ever volunteered for,” she says. “That’s why my partner Gary and I became monthly donors; we know what Kids Cancer Care does for families.”

After Bob passed away, Patti travelled to New Zealand and Australia for a stint but she was forced to end the trip early when she had a seizure. Although the seizure turned out to be a one-off occurrence that would never happen again, Patti was shaken by the experience. “Bob’s first symptom before diagnosis was a seizure,” she says. “I was sure I had a brain tumour.”

Patti flew home and resumed life in Calgary. Unwell and unable to work, Patti decided to direct her sorrow into something positive. She took a volunteer position at Ronald McDonald House and soon discovered a special place in her heart for the cancer families there. Over the years, Patti formed deep, lasting relationships with these families. “There’s something about sharing that kind of experience and intimacy together that creates an intense bond. We still get together regularly.”

It wasn’t long before Patti brought her passion and gifts to Kids Cancer Care. For seven years, she was a volunteer camp counsellor and one-to-one aide at camp. Recently, she joined Keith Shepherd’s volunteer BBQ crew at Camp Kindle on Ice Cream Fridays.

“Patti is an amazing volunteer,” says Megan Gough of Kids Cancer Care. “She’s at every event and donates to our auctions. She lives out of the city, so when she volunteers at Dad and Daughter, she actually pays for a hotel room to do it. She is the perfect volunteer and champion. We are so fortunate to have her.”

But if you ask Patti she says, “I’m the lucky one. Volunteering for these families gave me my sanity. I learn more and get way more from the kids than I’ve ever given to them.”

Patti remembers the days before Camp Kindle when Kids Cancer Care rented space at another camp facility to send children to camp. One summer, she was volunteering as a one-to-one aide for a little girl named Hayley whose prognosis was poor and who had lost a lot of mobility due to her brain tumour. Against her better judgement, but beyond her control as a volunteer, Patti found herself on an out-trip with Hayley and a handful of other campers and volunteers on a particularly stormy evening.

“I didn’t want to go out in the night with those kids in all that rain and mud,” Patti recalls. “But Hayley and the other kids really wanted to go. The counsellor from Kids Cancer Care had taken a sick child into the city, to the hospital, so she wasn’t there to intervene. I was angry and complaining a lot. Here I was with these kids, packing pillows and sleeping bags up and down these muddy slopes in the rain. Some of the kids were immune-compromised and I was stressed and worried.”

At the tent, settling in for the night, Patti continued to complain. “We were soaking wet, our sleeping bags were soaking wet and I went on grumbling. Finally Hayley got up in my face, so close our noses were almost touching, and said, ‘Would you please stop complaining? I really want to do this and I may never get to do it again.’ Boy, did she shut me up. A dying child telling me to stop complaining.”

Hayley was right. It would be her last out-trip and her last camp experience. She died later that year.

That wasn’t the only lesson the little girl had for Patti that summer. “Hayley and I were doing arts and crafts together, painting pictures onto small tiles for a mosaic,” recalls Patti. “She was quite a gifted little artist and I have no skill in that area at all. When I told her, ‘I just can’t do it like you Hayley,’ she said, ‘Now we’re going to sit here and draw until you draw a decent lady bug.’”

Patti’s ladybug, inspired by Hayley’s tenacity, still lives on the colourful mosaic at Kids Cancer Care today. A gawky little critter, the ladybug with its childlike simplicity still causes Patti embarrassment when she sees it.

So what lesson did the ladybug bring? Perseverance? Tenacity? Better times are coming? Perhaps Patti’s lesson was to recognize herself in that little red bug with the lively polka dots. In many spiritual traditions, the ladybug is a symbol for Lady-Luck, bringing luck and abundance where ever she goes. She points to happier, better times to come. Some say the ladybug represents love. If that was the lesson, then Patti fully embraced it and still lives it each day.

“Every day is a gift. I feel blessed to give to these families and to be part of Kids Cancer Care,” she says. “Family comes in all sorts of shapes and sizes and I consider Kids Cancer Care family.”

Patti credits these gifts to Bob’s cancer journey. “It totally shaped who I am today. He is why I can be strong for families today,” she says. “He made it so easy for me. He didn’t complain or feel sorry for himself. He wanted to live life and we did. We travelled a lot. I had a gift — I had him for four years. We had four great years together after his diagnosis and most of those years were wonderful. It was only the last six months that were hard.”

When Bob found out he was dying, he immediately retired from his dental practice and went out and purchased a lot to build a women’s clothing store for Patti. “I said, ‘What am I going to do with a clothing store? I don’t need that.’ And he said, ‘You never know, you might need a distraction when I’m gone.’”

Like Hayley, Bob was right. The clothing store provided Patti with a welcome distraction after he passed. When she later sold it, the store provided her with a means to travel. Bob was right on another occasion too. “During his cancer journey, he told me, ‘Better things are gonna’ come for you.’”

If the ladybug does foretell of better times to come, maybe Bob and Hayley, each in their own way, pointed Patti toward a new life, a new beginning, a life of service and giving to others. Call it strange coincidence or wonderful synchronicity that these disparate pieces should come together in Patti’s volunteer work at Camp Kindle — a magical place represented by the Kindle Bug or Love Bug as some call it.

“I feel like I have a lot to give these families because I’ve been through a lot myself,” she says. “And, as long as I am able, I will give to Kids Cancer Care. I’ll be giving until I die and, even after I die, because I’ve also left something in my will for Kids Cancer Care. I never had children of my own, so these kids, children with cancer, became my kids, and the legacy I leave will be for them.”

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.

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

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

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

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

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

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

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

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

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

~ Trisha Paul

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

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

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

“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.

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

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

Her reasons for going bald are perfectly simple.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gizelle’s photo gallery

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

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

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

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

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

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

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

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

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

Photo gallery

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

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

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

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

Click here to see their first video and blog.

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