Thea is a girl who could best be defined by her exuberance for life and her enviable ability to see only possibilities — to see the wonder and awe that surrounded her each and every day. With curiosity as her guide and her infectious energy, she celebrated every occasion, big or small, every relationship, and every moment with a giggle and a Snapchat picture.

You could say Thea came into the world with an extra dose of exuberance and a greater share of resilience. But then again life would demand a lot more of our little girl. She would need these qualities in spades.

On June 20^th, 2016, my wife Lesley and I were shocked and devastated to discover that, what we thought were growing pains in our daughter Thea’s right leg, were symptoms of a rare form of bone cancer called Ewing sarcoma.

Shortly after receiving her diagnosis, we were hit with more devastating news: the cancer had metastasized to her lungs, so began our cancer journey.

We were first introduced to Kids Cancer Care, while Thea was undergoing treatment at the Alberta Children’s Hospital. A place that came to be known at our house as the Lego hotel.

Along with Wednesday Pizza Nights at the hospital, Kids Cancer Care funds the Beads of Courage program there to help the children make sense of their cancer journey, recording every needle, X-ray, MRI, chemo treatment, surgery and hospital stay with a colourful bead.

Thea was incredibly proud of those coloured beads, each representing a medical procedure she’d been through or milestone she’d met.

Treatment was hard. Thea endured incredibly painful and exhausting days. Her optimism and strength took on superhero proportions as she readily traded hair for hats, school days for chemotherapy treatments and playground time for needle pokes.

Thea, more than anything, just wanted to be a seven-year-old, to participate and be treated the same. This, we quickly learned, is the underlying foundation of what Kids Cancer Care is built on.

Kids Cancer Care introduced us to SunRise, a day camp for kids, ages three to seven, that is also open to siblings. Instead of drawing attention to the limitations caused by cancer, this camp focuses on the imaginations and abilities of kids. At SunRise, Thea and her sister Brynn played with other kids and Thea didn’t have to answer questions about why she didn’t have hair or why she needed medicine. Every kid just understood.

After six months of treatment, including intensive chemotherapy and 35 rounds of radiation, it was explained to us that Thea’s lung tumours were not disappearing, but in fact, were growing.

A lung surgery came next as the cancer was relentless. Although Thea was fighting, we were not winning the battle.  

We often describe Thea as the happiest sick kid you could meet. If she was scared or worried about her diagnosis, she rarely showed it.

She was determined to spend as much time as possible at school, where she dedicated herself to the magic of learning. Where there wasn’t a subject she wouldn’t tackle, a teacher she didn’t admire, and where she could foster her most loving and caring friendships.  

In early 2017, the doctors encouraged us to make the most of our time, while she was feeling good, so we became laser-focussed on providing Thea the means to do whatever she could with whatever energy, determination and imagination she had. Denying the inevitable, we lived and loved each day.

Over the next few months, we made the most of family time together.  

Thea was granted a Wish Trip, so she could live out her dream of staying in a princess-like castle in Ireland. There she kissed the Blarney Stone, rode horses through green pastures and filled her rubber boots with ocean water.

It was on the final day of our trip that she began experiencing some pain and a fever that was immediately investigated. Her health had taken a turn.

Within days of our trip, we found ourselves sitting with the palliative care team at The Rotary Flames House as our oncology doctors discussed Thea’s health and inevitable decline.   

What we quickly learned in the days and weeks that followed was that the caregivers and volunteers around us would do everything they could to allow Thea to live as a richly, fully and as beautifully as she could, for as long as she could. The palliative care physicians expertly managed the delicate balance of controlling her pain, caused by the growing lung tumours, and ensuring she felt well enough to function coherently.

Kids Cancer Care gave our two girls the opportunity to go together to Camp Kindle, a sleep-away camp, nestled in the foothills. At Camp Kindle, Thea, like so many other children, was able to receive the necessary medical care and medication to manage her pain. She embraced Camp Kindle. The staff, nurses and leaders she met became instant family through their caring and devotion.

Camp Kindle gave Thea time away from hospitals, time away from not being able to participate in gym class or go outside at recess. Camp Kindle is a place that inspires kids and enabled Thea to participate in everything!

Thea was immediately drawn to the impressive high ropes and zip line course. When she inquisitively asked when they would be going on that, the response she got was that it was reserved for kids 12 years and older. This answer would be the counsellor’s only mistake.

She was determined to conquer that course and, in typical Thea fashion, she continued to persuade the counsellors. She was not going to let a little something like her age, size or cancer get in her way.

Understanding the true opportunity of Camp Kindle, which is to celebrate the resilience of the human spirit and give kids an opportunity to conquer obstacles they may never be able to do again, the counsellors went to work. After getting full permission from her parents and the nursing manager, the counsellors worked behind the scenes to make the necessary adjustments to the course and the harness for Thea. They even went so far as to convince a photographer, who was likely more intimidated than Thea, to harness his way to the top, so he could capture each moment.  

At the end of the week, the counsellors presented us with pictures and a DVD of her conquest — each picture, capturing her smile and expressions of pure joy.

Thea approached the high ropes course the way she faced cancer, with tenacity, grit and pure determination. Her strength and positive attitude didn’t go unnoticed at Camp Kindle. At the end of the week, when it was time to say goodbye and hand out camp awards, Thea was most proud of winning the Best Big Sister Award.

At the end of that summer, Thea was honored to receive the very special Derek bead. This bead was created in memory of Christine McIver’s son, who at the age of nine, lost his battle with an aggressive brain cancer. Derek is the inspiration that drove Christine to create Kids Cancer Care 25 years ago.

We were touched to discover that Thea was the first ever camper to receive this special bead, which celebrates the gifts of determination, humour and perseverance — gifts that both Derek and Thea share.

Like Derek, Thea continues to inspire us.

In August, we faced another setback as Thea’s pain became uncontrollable. Despite what she was able to do, scans revealed that her cancer had spread to her spine. Once again, the treatment team regrouped, rallied and readjusted her pain management. This meant multiple pumps, lines and pokes into her body and five more rounds of radiation.

Amid all of this, Thea remain focussed on a few more things she needed to do:  

1. One was to get to her first day of grade three; and
2. The second was to make it to the Dad and Daughter Gala again.   

For all of us dads, this gala is such a special night to share with our daughters, while they still think we’re cool enough to hang out with and they still laugh at our jokes. In 2017, just two weeks before Thea passed, this night meant so much more.  

It represented her graduating from high school, graduating from university, getting married and every milestone in between, where we could have shared one more dance together.

I think we were the last to leave that night!

It seemed that although she was adjusting to her weakened condition and slowing stamina, her spirit, her energy and her love of life kept her going.  

On November 10^th, 2017, in a weakening state, Thea convinced Lesley and I to take her to school for the Remembrance Day ceremony, for which she had been practicing all week. No one would have faulted her for staying at home that day, but her maturity and empathy always evident, she did not want to let her classmates down.

With the help of our palliative care team, many who came to the school to help manage her medication, we watched Thea sing Let there be Peace on Earth at the Remembrance Day assembly.

That afternoon, too weak to play, she sat with her friends on the school playground for the very last time. Three days later, on November 13^th, Thea passed away.  

It is a surreal transition when you lose a child. Moving from the overwhelming outpouring of support, while your child is battling their illness, to the solitude and despair of grief.

This is again where we leaned on Kids Cancer Care.

My wife Lesley says it best, “The fear of every parent who has lost a child is that as time goes on their child will be forgotten. Kids Cancer Care does a lot to ensure that doesn’t happen and has a special night called Time to Remember.”

They help families dedicate time in September during Childhood Cancer Awareness Month to remember the children who have lost their battle with cancer. They help honor our children and raise awareness for those still struggling with cancer.  

We recently had a chance to go back to Camp Kindle during Family Camp — back at the site of Thea’s high ropes conquest. As a family, we got an appreciation of how the counsellors, nurses and volunteers of Kids Cancer Care make Camp Kindle such a special place.

It was emotional remembering the girls as they led us around the camp, showing us their bunks and all the places they explored. Thea never questioned why she got to go to Camp Kindle, but only expressed disbelief that anybody wouldn’t want to go.

For us, supporting Kids Cancer Care is so important. It doesn’t only connect us as a family, help fund children’s cancer programs and childhood cancer research; it keeps us connected with Thea.  

Each year, I am envious of the courageous stories we hear of kids who are enduring their treatments, overcoming their own obstacles and those who have conquered cancer. Some go on to become counsellors or volunteers at camp. I’d like to imagine Thea as a counsellor, encouraging another young child to complete the high ropes course.

Our family is grateful for the support we have received through the many individuals and companies that support Kids Cancer Care. Know that your donations will allow other families and children, struggling with a cancer crisis, to receive the much-needed support offered by Kids Cancer Care.

Whether you are reading this post as a parent, navigating an incredibly complex journey with your child diagnosed with cancer, a donor providing much-needed financial support to Kids Cancer Care or a volunteer dedicating your time and spirit to support these families, please let Thea’s story be a reminder to cherish your loved ones, find joy in even the most difficult of days and share Thea’s mission of love in the world.

~ Patrick Roelofsen, Thea’s dad

Thea’s photo gallery

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

“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

I’m going to show you the best Santa-But-Not-Actually-Santa pictures you’ve ever seen. Let me set them up. ~ Dave Kelly

Theatre Calgary has been doing A Christmas Carol in this city every year for over three decades. Stephen Hair has been playing Scrooge for over 25 years. It’s a tremendous production every year and every year he’s a tremendous Scrooge.

For 20 of those years, on the Sunday before the official opening night, Theatre Calgary has been doing a special Christmas Carol for a very special audience. Alanna Schwartz has been going to that Sunday show every year since 2002. And she has pictures to prove it. That’s where the Santa-But-Not-Actually-Santa pictures come in.

The Sunday night show is hosted by Kids Cancer Care, a tremendous group that does exactly what the name says. That night young people can show up with an IV pole, with a mask, or with a nurse and no one bats an eye. And if you’re six-year-old Alanna and you’re six months into chemo and radiation, you might show up with a wig and a hat…and your cousin Kenzie.

“Little Miss A was so sick,” explained her mom Jody. “When they portrayed Tiny Tim’s death in the play, I was a basket case trying to be brave as I sat beside Alanna and held her skinny little hand.”

After the show, the cast came out to say hello, and Alanna and Kenzie got to meet Stephen Hair. “He was so kind, so warm, and the kids were vibrating,” Jody said. “My heart was full.”

“Then,” she said, “something magical happened.”

An oncology doctor who knew Jody walked up to her with a Mom and her teenage daughter. “I have someone you should meet,” said the Doc. The Mom asked Jody how Alanna was doing. Clearly this woman knew a hat and wig when she saw one. Jody talked a bit about Alanna and her diagnosis; her heart still full from the play, full from trying to be a brave mom and not a scared mom. Then the woman looked at Jody and said, “My daughter had the same thing,” and put her arms around the teenage daughter standing beside her. A beautiful, healthy young woman.

“You could have knocked me over.” Jody told me. “We were looking for just a bit of joy and that night I found it in Stephen Hair and in A Christmas Carol, and then, in the middle of it all, I also found hope: this mom had her arms around living proof that you can beat cancer.”

And for the past 16 productions of Christmas Carol, Alanna and her cousin Kenzie have gone every year. They go because the show is great. They go because Stephen is great. And they go because Jody tells them you never know if a Trying-To-Be-Brave Mom is there with their sick child – and they need hope.

“Some people have pictures with Santa at the mall to monitor how their kids have grown. We have Stephen as Scrooge pictures.”

This was last year. The picture isn’t great. Alanna’s boyfriend took it. I like to say that. Alanna’s boyfriend. Not because he’s a bad photographer. I just like to say it. Alanna’s boyfriend.

And so, this Sunday Stephen Hair and the rest of the cast are going to put a special performance of this year’s brand new A Christmas Carol. It’s a show that gives people joy, a show that gives people warmth and, even if they don’t realize it, it’s a show that gives people hope.

Good for you Stephen – and good for you Alanna.

Love,

Dave

Dave Kelly Live Christmas Special

Join Dave for another Christmas edition of Dave Kelly Live, Calgary’s talk variety show. Featuring special guests, surprise appearances  and the best in Canadian talent, stories and music. This show will feature the Calgary Stampede’s Young Canadians. Once again, Dave will be joined by our house supergroup, The Flat Whites, world-renowned visual artist Mandy Stobo, and the man with the beer – Jim Button. Click here for tickets.

Published with permission from Dave Kelly.

Our son Finn was just three months old when he was diagnosed with rhabdomyosarcoma, an aggressive and fast-growing sarcoma. We spent the first year of his life fighting for it. It was so unreal because Finn was so little. It was like a slap in the face and it just kept hitting us hard and fast—surgery, cancer, chemotherapy. There was no time to think or feel. We were in full survival mode.

The cancer, in Finn’s case, was caused by another condition called neurofibromatosis type 1 (NF1), which causes tumours to form on the nerve tissue. Again, we had no time to process this news at all. Our little boy was fighting for his life.

Not even a year old and the only world he knew was cancer — needles, central lines, chemo ports, dressing changes and hospital stays. Our only reference point was a cheerful, but very sick little boy in need of constant medical care. Finn instantly earned the well-deserved nickname — SuperFinn.

In the frightening and clinical world of childhood cancer, my husband Martijn and I discovered Kids Cancer Care. We got our first real break at their spring Family Camp. At first we were hesitant. We were only about five weeks into Finn’s treatment and I think we were just terrified of the idea of committing ourselves to this cancer community. It seemed like such a final stand, so absolute.

In the end, we decided it would be good to connect with others on this path, so we packed our bags for the weekend and headed out to Camp Kindle.

We had a fantastic time at camp! It was so well organized and the staff and volunteers were amazing. Finn was undergoing chemotherapy at this time, so he was sick for most of the weekend. Finn and I spent a lot of time in the Re-Kindle Clinic, where the volunteer nurses administered chemotherapy and TLC to him 24/7.

They were so wonderful. One evening, the nursing volunteers actually sat on the floor by Finn’s bed, while he was sleeping, so we could join the other parents in the evening activities. It was an amazing break for us.

Aside from the initial jitters we felt while formally introducing ourselves to the other families the first evening, the entire experience was about relaxation and fun — building birdhouses, enjoying meals with other parents, hiking trips and drumming circles.

After Family Camp, we became instant regulars. We started going to all the events at Camp Kindle — Mother’s Day Brunch, Survivor Day. The people we met at this first camp are still friends to this date, almost six years later.

Childhood cancer can be such a lonely and isolating experience. I think people can underestimate the impact of forced isolation on the child and the family. You’re literally housebound because visiting a grocery store or meeting a coughing child, as you come around the corner, can be fatal. Kids Cancer Care programs were the only thing we could do.

Finn is turning six years old this month and he just started kindergarten. Although he is no longer on active treatment, he is monitored regularly for tumour growth and other NF1-related complications. As with most children affected by childhood cancer, he is facing a lifetime of complicated health issues related to the treatments that saved his life.

To manage the long-term side effects, Finn sees a battalion of medical specialists — from pediatric oncologists and neurologists to geneticists, endocrinologists, orthopedic surgeons, ophthalmologists, dermatologists, physiotherapists, occupational therapists and more.

Thank goodness for Kids Cancer Care. Finn and his little brother Bodi enjoy a range of Kids Cancer Care programs. And they love them all. When I ask Finn about Kids Cancer Care, he says, “Kids Cancer Care is fun.” Our little man of few words.

Last summer was Finn’s third year of camp and Bodi’s first year of camp. To attend camp, kids have to be at least three years old and Bodi was beyond happy to finally join his big brother Finn at camp. For months leading up to camp, the boys were constantly chatting about camp and what they would do while there. Both boys had an amazing time. Finn was assigned a one-to-one volunteer aide, who also took Bodi on. They had a fantastic week.

Both boys are also frequent participants in Kids Cancer Care’s PEER program. PEER stands for Pediatric Oncology Patients Engaging in Exercise for Recovery and it is a customized exercise program that helps reduce the deconditioning effects of cancer in children. These weekly sessions are amazing for developing their motor skills, balance, flexibility, muscle and cardio strength. They also help build their confidence.

Finn has benefitted so much from this program as they also work on his physio needs at PEER. One of Finn’s heroes, also known as Coach Liam, played a huge role in his progress. Every week, Coach Liam and Finn would work and play together during PEER. Over the months, they built a wonderful bond together.
Finn loves to race and challenges every coach at PEER to race with him.

Finn also loves to swim and ride his bicycle. In his downtime at home, he loves to play with Hot Wheels and Lego. He also loves to read books. Finn is always curious and always asking questions. He is always ready to learn.

I don’t know what we would do without Kids Cancer Care. The staff and volunteers at Kids Cancer Care truly care. The support we have received from day one has been incredible — a freezer filled with food during treatment; family camps where nurses cared for Finn, so we could get a break; exercise programs tailored to help Finn manage the late effects of his treatment; and parent education programs and more. At Kids Cancer Care, we have found a community of support with people who get it. Thank you for making these programs possible.

In August of 2016 our family was attending a birthday party at a trampoline park. Everyone was having a blast. Our son Mason took a little spill and started crying as he had hurt his leg. It was the end of the party and nothing serious, so we packed up and headed home. Mason complained about his knee hurting. Assuming he twisted it, I had him laid up on the couch to rest the knee. The next day when he said it still hurt I told him we will have to go to the doctor to have it checked. He said, “no its okay” and started walking on it again. Mason was diagnosed at age three with autism and he was not a fan of unknown places like the doctor’s office and the thought of getting X-rays terrified him. He also had a speech delay, so there was a communication barrier to work through that made it tricky in these situations, as he didn’t have the words to explain what he was feeling. After nearly two weeks, he woke in the morning and was crying about his leg again, so I called my husband Josh and said that we should take him to see a doctor. I was thinking that school was beginning shortly and maybe there was a small fracture, or something was torn.

Josh got home from work and took Mason to our local urgent care. It was a long wait, so I brought the other two kids and we switched out. He took them home to bed and to get some rest himself since he had to work in the morning. I stayed with Mason. The doctor came back in and said his X-ray looked fine but that they wanted to do some blood work. A couple more hours passed and they returned to tell us that the tests that came back looked okay and that we were free to go home. The doctor said, there was one other test but it was sent to the Calgary Lab Services and since it was now past midnight they would not get anything back tonight. I packed up Mason carried him to the truck and remember having this sinking feeling. Clearly something was wrong. Mason is a tough cookie and never complains unless there is indeed something hurting him. As I drove him home I remember thinking I should just drive straight to the children’s hospital, but I looked back at Mason in the rear-view mirror and thought I better take him home for a good night’s sleep.

The following morning, on August 25, 2016, Mason woke up screaming in pain. He couldn’t move his leg at all. I didn’t know what to do, so I called his pediatrician, who has been seeing him since birth, and told the nurse what was happening and that I didn’t know what to do. She calmed me down and told me to pack up the kids and bring him in as maybe something was missed the night before. I called Josh at work to see if he could come help me and he said that he would get home right away. I called my mom, who also rearranged her schedule, so that we did not have to bring the other two kids with us. I was thinking he for sure broke something and we may need a cast. I was in the bathroom getting ready when the phone rang. The caller ID read “Calgary Lab.”

“Hello?”
“Hello, is this the mother of Mason Roach?”
“Yes.”
“Hello, I am calling you about the bloodwork your son had done last night.”
“Okay.”
“Are you in a public place?”
“No.”
“Could you sit down for a moment?”
“Okay?!”
“Your son’s bloodwork came back and it looks as though your son has something we call leukemia.”
“Leukemia?! That cannot be right.”
“I am very sorry, but I have to ask you to take your son to Alberta Children’s Hospital. They will be expecting you. How long till you can get there?”
“I am sorry this has to be a mistake, as my son only hurt his leg on a trampoline and I am about to bring him to the pediatrician.”
“I can call your pediatrician and let them know that you will be going to the hospital now instead and fill them in. How long until you can get there?”
“Umm, I don’t know, about an hour.”
“Okay. I will let them know. I wish you the best of luck.”

That was it. One phone call changed our life…our family’s life. I just sat there so confused and then it started to sink in. I called Josh and asked where he was. He said on his way.

In a haze still, I said “Hun, the lab called and they say Mason has Leukemia.” I’ll never forget the way Josh screamed. It was as if I could hear his heart break. I heard my mom come in the house. I walked up to her and told her. We were both so confused and just hugged. It was such a surreal moment that it just couldn’t be real. Josh came home, we packed up to head to the hospital and began our journey.

After more tests, it was confirmed that Mason had pre B acute lymphoblastic leukemia (ALL). After that moment, it was information overload. So many doctors talking to us and telling us what will now happen. Mason was diagnosed on a Thursday with plans for surgery to place his IVAD (implanted venous access device) in his chest on the Monday. We used that weekend to have all the family visit before treatment started. It was so overwhelming. To start, we were to only focus on the next 29 days, as that was the time they would hit his body with a heavy dose of chemotherapy in hopes that he would go into remission. His first bone marrow aspiration showed that 75 per cent of his cells were leukemic. After the 29 days, if his cells were less than 0.01 per cent leukemic, he would be considered in remission. On what should have been Mason’s first day of grade two, he was instead receiving his second dose of chemotherapy in the hospital.

It was a long and hard 29 days. Mason was in a lot of pain, he was weak, started to lose his hair and though most kids eat a lot in the first month, due to steroids, Mason did not want to eat and was losing weight fast. On day 29 he had another bone marrow aspiration. The next week we came in for blood work to see if Mason was strong enough to start the next round of chemo and to get the results to see if he was in remission. I remember being so positive that day and thinking how will I explain to everyone that remission does not mean cured and that we still must be careful. My positivity quickly vanished as our oncologist and primary nurse sat us down and told us that Mason did not go into remission and that there were still leukemia cells detected.

That hit me hard, almost harder than the first time. I burst into tears and I remember little Mason reaching over to comfort me and telling me it was okay. Mason was now bumped to high risk and would start a stronger round of chemotherapy. This phase was called consolidation and it would be two months of treatment with the goal of hitting remission. If not, the next step would be a bone marrow transplantation. This round of chemotherapy was ruthless on Mason. He lost over 30 per cent of his body weight due to lack of appetite and continuous vomiting. He needed to have a NG tube placed to make sure he was getting the nutrition his body so desperately needed. For a kiddo with autism and sensory issues, the NG tube was one of the most traumatic things Mason had to endure. It would take three to four of us to pin him down so that a nurse could safely insert the tube up into his nose and down into his stomach. This round of chemo also hit his other blood cells very hard and Mason needed many blood transfusions. He has had 26 blood transfusions to date actually. Low platelets were very scary as he would bruise easily, and blood vessels would break. Physically, this looked very scary. One morning I woke to find him with dried blood coming from his nose and ears.

Finally, after this period, Mason’s bone marrow showed he finally hit remission. It was Christmas Eve when our oncologist called to share the great news. We were so overjoyed.

The next phase was two months of what’s called interim maintenance, a phase to maintain remission and focus on preventing central nervous system (CNS) disease. This was most likely going to be Mason’s easiest phase, but he still relied on his NG tube for nutrition as by this point had stopped eating and drinking entirely himself. Blood transfusions were still needed and we had many hospital stays for fevers and illness. It was during this time that we started to become concerned that Mason could not walk anymore. This can be common to have joint pain or get clubbed feet, but my gut told me there was more to it. I had learned to follow my gut over the years with Mason’s communication barriers. Some doctors thought his not walking may also be behavioural, but I disagreed, and an MRI was ordered to rule anything out. On February 14, 2017, Mason had his first MRI, which showed us that he was suffering from avascular necrosis, which is basically no blood flow going to the bones, causing the bones to begin to die. This can be a side effect from the steroids, but is usually not seen until far later in treatment – never after only one month of steroids. It was nice to know what was happening, but being so early into his treatment, it was scary. We knew we had another big phase of steroids coming up.

They had started Mason on a medication to try to protect his bones during the next phase: delayed intensification. This was a more intense phase that would aggressively attack the leukemia cells, but other cells too. We had to cross our fingers and pray as it also came with more steroids that could hurt Mason. The risk was too high to not move forward. Mason did surprisingly well with about the same expected side effects. We even got rid of his NG tube as he started to eat again. It was May of 2017 now and he was receiving his last doses of chemotherapy for this phase. We had done it! We were finally through the thick of treatment and I jumped for joy that day. The nurse called shortly after and said his counts showed that he needed a blood transfusion, but that it was safe to wait until the following day.

However, the mood soon changed. That night Mason wasn’t himself and ended up sleeping in my bed.

The next day, we were not scheduled to go to the hospital until 1 pm for a blood transfusion, but my mama gut was telling me something was wrong. I called the hospital and they agreed that I should bring Mason in early so they could assess him. We packed him up and headed to what felt like a second home at this point. Although there was no fever, the doctor felt one was coming and told us he wanted to keep Mason overnight. As the day went on, sure enough, Mason started going downhill and spiked a fever. This was nothing we weren’t used to, but then Mason’s blood pressure also started dropping. Every hour it seemed to just keep dropping slowly. It was about 2 am that night, while Mason was in the middle of a blood transfusion, his potassium also dropped dangerously low and they needed to start a new IV and they needed to do it now. They could not find a blood vessel that was strong enough and had to call in a special team to access him. At this point they were checking his blood pressure every five minutes and it just kept dropping every time. I was laying by him and they kept poking a needle into his arm hoping to get a vein and he just laid there lifeless. The same boy that took multiple people to pin him down for arm pokes, did not flinch a bit as the needle went in and out of his skin. At that moment they made the call; he was to be moved to the PICU (pediatric intensive care unit). Once they found a vein and hooked up the IV, I shook Mason as I was terrified in my heart that in that moment I had lost my son. I shook Mason in desperation and said, “Mason you have to wake up you’re scaring Mommy.”

All he whispered back was, “I miss you, Mommy.” The ICU team rushed and started assessing. There were so many people surrounding my son who looked so lifeless that I just stood back and watched. It felt as if I wasn’t even there, everything was moving so fast around me, but I felt I was in slow motion.

I finally found my phone and called Josh and said, “It’s not good. You need to get here.”

Josh found us in the ICU where they had stabilized Mason. That night will forever haunt me. We were transferred back to the oncology unit and stayed there for a total of 14 days. Mason had to get an NG tube placed again before they would let him go home, but when he did come home, we were so happy.

Two weeks later we finally hit the maintenance phase, which is much less intense and about two and a half years long. We had a big eighth birthday celebration for Mason in July 2017 and to celebrate him reaching this phase. We had planned a pool party, but due to the side effects to his bones, Mason fractured his femur trying to simply stand and spent his party in a cast, but it was still a great party.

We were first introduced to Kids Cancer Care during Pizza Night at the hospital, which Mason absolutely loved. Although Mason hasn’t been able to personally take part in any programs outside of the hospital yet, what I love so much about Kids Cancer Care is that they do not forget the siblings in this journey. The cancer diagnosis pulled the rug out from under our whole family. Our other son and daughter worried a lot and were confused about Mason’s diagnosis. I enrolled my daughter in a Kids Cancer Care camp about a year after diagnosis and I am so thankful I did. It was the most memorable experience. She connected with other kids who were on the same journey as us and it gave her a place to belong. She attended camp again this summer, and again, she was on cloud nine! I cannot thank Kids Cancer Care enough for not only having programs for Mason, but for his siblings too.

With Mason getting stronger each day, I know he is so excited to join his sister for the next camp! He continues to struggle with his mobility and is in a wheelchair full-time, but he is working on using a walker more. He recently had a small fall and fractured his hip. From being bed ridden for two years, he has developed mild scoliosis and now needs to wear ankle foot orthosis (a brace) all the time. He also needed surgery this past April on both feet to stretch the tendons. He is in physical therapy and working hard to get back on his feet again. Mason has been through the wringer, but he continues to push through and he does it all with a smile on his face.

– Crystal, Mighty Mason’s mom

We started to notice that Kaidan wasn’t feeling well the same night he was given his first round of immunizations, so it was tricky to know what was going on. I called Health Link twice that first night, saying he was so lethargic and crying so much. They assured me that it was just a reaction to his immunizations. The next day I phoned our family doc and made an appointment but he couldn’t find anything wrong. He chalked it down to an ear infection and gave him antibiotics. My mama instinct went into over drive, saying, “No way. Don’t give him that. He hasn’t got an ear infection. Something is very wrong here!” We had a three-year-old son Josh at that time, and he’d had many ear infections in his short life so we knew the symptoms well. Our bouncing baby boy of six months went from the happiest baby we’d seen to a crying whimpering little guy with zero energy. At this point, he just cried all day long and could barely lift his head.

We had been using cloth diapers and he’d always had this patch of dry skin that used to irritate him on his upper thigh. He’d always scratched it a bit. I noticed that it was bruised where he’d been scratching in the middle of the night when I’d changed his diaper. I called my mother-in-law in England first thing in the morning to ask her if it was possible to scratch a bruise and she said no, it definitely wasn’t. She asked how he was and what he was doing then. I said that I’d just woken up and that he was still sleeping. She said that I should check his skin on his belly under his sleeper for tiny dark dots. While she was still on the phone I did and found that he had these tiny dots all over! She told me to get him to the hospital right away, that he had petechiae– small red or purple spots on the skin caused by a minor bleed from broken capillaries.

I dropped Josh off with my husband Alastair (he was working on a house that we renovating) and picked up my friend Lisa because I felt too scared to face this on my own! We drove to the Foothills Hospital initially. I had never had a sick baby before and just thought hospital – not children’s hospital. They took one look at Kaidan and said, “Get him to the Alberta Children’s Hospital right away; you have a very sick little boy there.” It was awful. I was terrified. I couldn’t get there fast enough!

We went to the old children’s hospital and there was a massive line up. I said, “I think my son has meningitis. Please let me to the front of the line.” Everyone did! When the triage nurse saw him, they took us right into a room. Within a few minutes, he had an intravenous line in and what seemed like a million doctors around him. They wouldn’t tell us anything. They kept asking me when my husband was coming. He was on his way. It took him a long time it seemed! They had social workers there, on the ready, just waiting to tell us the awful truth.

Finally, after what felt like a lifetime of waiting, Alastair arrived, as well as our group of friends that were our family. We were told that Kaidan had infant leukemia. In that moment I felt like our world was ending and, in a way, it did. At least our old world did, the only one we knew.

Kaidan was given a 50 per cent chance of survival and we were told that if we hadn’t brought him in when we did, that he wouldn’t have lived more than three more days! Such a shock! As our new normal started to settle in we began to move forward. Alastair’s parents flew in from England to help us come to terms with our new lives. We were told that we’d become permanent residents of the children’s hospital for the next year, while Kaidan went through a grueling treatment of chemotherapy at just six months!

It was definitely a hard time, especially for Josh, who had his whole world ripped apart. He was used to me being around all the time and suddenly I was gone and so was his dad. We ended up getting a nanny who we just loved and who was absolutely amazing for Josh! We got into a routine, where one of us would sleep at the hospital with Kaidan and one of us would sleep at home with Josh. Funnily enough, if I was at the hospital, Kaidan woke up all night long to breastfeed and if it was Alastair, he didn’t wake up once, even though I’d pump my milk for him each time, just in case!

There were quite a few emergency situations where things went terribly wrong for Kaidan and his treatment. But it felt like a lot of the time he was doing really well! We did end up being able to bring him home for a few days at a time, which at first was terrifying for us! Having to give him all of his medication on our own was really overwhelming at first! Eventually, even that became normal.

Josh ended up going to camp with Kids Cancer Care. At this time he was just three years old and just loved being with people! We were living quite secluded lives, afraid to mix with the public and risk bringing any sort of sickness back to Kaidan. It ended up being good for all of us! We met other parents who were further along in their journeys, who had stories to share, both good and not so good. I remember vividly, picking Josh up from camp one day, with Kaidan in my arms, and talking to a lady named Brandi. I asked her which kid was hers running around the playground and she said “That one, that one, that one and that one!” I was pretty shocked at how many kids she had! I then asked her which one had been sick. And she said that sadly, he didn’t make it. I was shocked and saddened to my core! She seemed so peaceful and happy. How was that possible? We chatted for a few more minutes and then we parted ways. Who knew what a big part of our lives she’d one day become. When the unthinkable happened eight months later, I searched for that lady Brandi!

About 10 months into Kaidan’s treatment, his doctors said to us that we was doing so well. He’d made it through the hardest part and we were in the maintenance phase. What did we want to do with our lives? It was time! We had sold our yoga studio in Canmore about a year and a half before and had always regretted it. We had always wanted to build another one and it was then that we decided to look for a space in Calgary to build a new one! We actually had Kaidan out on day passes when we went looking for locations. When we saw the space in Mission, on 4th street, next to a Lululemon store, we knew we had found the perfect spot! It all fell into place pretty quickly and Alastair began turning the former dental laboratory into Yoga Santosha! Although at the time, we hadn’t quite named it that! Santosha means contentment and after Kaidan passed away, we realized that that is what everyone wants in life, to feel content. We weren’t sure if we could ever feel that way again, but we sure wanted to!

As Alastair finished up the demolition over the next couple of months, things with Kaidan seemed pretty stable. Kaidan was home for about a week when I noticed that he was feeling unwell. He threw up, so it was a one-way ticket back to the hospital for us. It was determined that he had a bacterial blood infection and we were all pretty nervous!

He had klebsiella pneumonia – one of the super bugs. Over the next five days, he just got worse and worse. It was terrible and very scary! He just kept getting puffier and puffier until he was just huge around his torso! His last night was unbearable. Oddly enough, his blood samples had come back clear, so his doctors believed he was going to get better and that he would turn a corner. I could tell that that wasn’t the case. He was barely responding and his heart rate was all over the place. It was a scary night with him, with no doctors, as that last night there was no over-night doctor around. He held on until Alastair got there in the morning. He held up his arm to wave to him and then let go. The dreaded code blue. It was absolutely devastating to say the least. The doctors tried to save him for the next four hours but there was nothing else they could do in the end.

Eventually an autopsy determined he had Waterhouse-Friderichsen syndrome (adrenal gland failure) and there was no chance that he could have survived that.

To say we were crushed and devastated beyond repair would have been an understatement. We were definitely in a state of shock and disbelief. We never saw it coming, not ever. Leaving the hospital without him was almost more than we could bear. In fact, we just couldn’t leave until they finally said that we’d have to, hours and hours after he passed away.

We very slowly began to get our lives together again with the help of our beautiful son Josh! I truly believe that he saved me! Without him needing me to get up each day I’m not sure I could have! At four years old he became an only child again and my best friend!

We are incredibly grateful that we were able to add a couple more children to our family and both of them helped to heal us as well. Kaidan will never be forgotten, never be replaced and always in our hearts!

We feel that the friendships that we’ve made at Kids Cancer Care have helped us in so many ways! We’ve been to Bereavement Camp as well, which was an incredible time to remember our beautiful son and to help other people along in their own journeys. It’s an amazing thing to be with people who really get what you are going through. This is why Kids Cancer Care has been so helpful during treatment and beyond!

– Candace, Kaidan’s mom

Diagnosed with cancer at three months, Finn spent the first year of his life fighting for it. He’s finished treatment now, but he’s facing a lifetime of late effects. Monitored regularly for tumour growth, Finn also sees a battalion of medical specialists — from neurologists and geneticists to endocrinologists and occupational therapists — to manage the after effects.

Thank goodness for Great Clips hair salons. Their Back to School Buzz during Childhood Cancer Awareness Month is turning haircuts into fundraising and here’s how you and your kids can get involved.

Finn and his brother Bodi have great hair. They’re only five and three, but they like their hair a lot. Hair is important in the van Galen household, mostly because Finn lost all of his hair during cancer treatments. And little Bodi? Well, he just likes to keep his hair long. So when the two boys agreed to go to Great Clips for a trim, it was a big deal. They were willing to lose some of their locks because they wanted to help other children with cancer.

Finn and Bodi were among the first to donate in the Great Clips Back to School Buzz, a fundraising campaign that runs August 23 to September 30 during Childhood Cancer Awareness Month. When clients donate three dollars or more at one of their participating salons in southern Alberta, they also receive a five dollar coupon off their next haircut.

Jennifer Mooney (general manager of Great Clips) and her sister Lisa Inman (a Great Clips franchise owner) are the brains behind the six-week fundraising campaign.

“These past few weeks have been busy!” says Jennifer. “It’s wonderful to see how generous people are and how willing they are to support children with cancer. We’re really pleased with the campaign and so happy to do what we can for children like Finn.”

Thanks to generous supporters like Great Clips, Kids Cancer Care is able to give kids like Finn regular breaks from their demanding medical routines at our camp and outreach programs. Finn has been a regular at our camps since his parents Inge and Martjin first attended Family Camp when he was just an infant, still on cancer treatment. Last summer, Bodi went to summer camp for the first time. He loved it too.

“Kids Cancer Care is fun,” says Finn, when asked why he chose to support Kids Cancer Care through the Back to School Buzz.

The boys’ mother Inge has her own reasons for supporting the foundation. “Kids Cancer Care truly cares. The support we have received from day one has been incredible — from a filled freezer of food during treatment; to family camps, where nurses cared for Finn, so we could get a break; to exercise programs tailored to help him manage the late effects of his treatment; to parent education programs and more. At Kids Cancer Care, we have found a community of support with people who get it.”

Great Clips also has its reasons for supporting Kids Cancer Care. For years, their hairstylists have volunteered their services at our Shave Your Lid for a Kid® fundraising events. Spearheading a six-week fundraising campaign seemed like the next best step for sisters Jennifer and Lisa.

“Over the years, Great Clips has created a very special relationship with Kids Cancer Care and we have become very passionate about the cause,” says Jennifer. “Lisa and I decided we wanted to do more. By launching the Back to School Buzz during Childhood Cancer Awareness Month, we hope to bring attention to Kids Cancer Care, while raising money to support Alberta families fighting childhood cancer.”

If you’re in need of a haircut this month, Great Clips has a salon for you. There are 23 salons partnering in the Back to School Buzz for Kids Cancer Care. With a donation of three dollars or more, you’ll receive a five dollar coupon off your next haircut. It’s almost like you’re getting paid to give. To learn more, click here.

Thank you Great Clips, for pulling out all the stops to support children with cancer!

I have tried multiple times to write and share Ella’s story. I struggle partly because I feel this is her story to tell, not mine, but the other struggle is I know that by the time I finish writing this, there will be more to add to it. We are anxiously waiting to hear when Ella’s next brain surgery will be. We know it will only be weeks away. The outcome of this surgery has so many possibilities and we know this because she has already been through three within the last year. That is not including the other surgeries. That is just her brain surgeries. At the young age of three, the number of brain surgeries she will have is more than her age.

Ella has always been such a strong, determined little girl. She reached all her milestones well before anyone else in any of her baby classes. But the term little really is the key word. At just five months, she had been referred to a pediatrician because our family doctor was concerned that she just wasn’t gaining as well as she should be. She went through every test at the time to rule everything out. She even went to a neurologist because of some shaking she was doing. Every test came back okay. Back to regular life and the doctor appointments began to slow down to just her regular checkups.

Once, when she went for bloodwork at the Alberta Children’s Hospital, something in me had a calming feeling take over. I vividly remember thinking, “This is home.” Seeing the oncology sign gave me such a strong sense of home. Such a strange thought to have at the time.

Looking back, we now note that she would wake up not being able to walk straight and shake. Blood sugar, we were told, was the reason. Around the age of two, when she was really tired her eye would turn in, but it never stayed that way. It seemed as though you could “snap” her out of it. Sometimes she even thought she was being funny doing it. She would fight each and every time we put her into the car seat. Even on really hot days, she would say she didn’t want to get in her car seat because her head hurt. On the first hottest day of the year, she threw up – but we figured she just hadn’t drank enough fluids at daycare. Some days, she would throw up in the mornings, but feel better afterwards.

When her sister was born, Reese had to stay in the Neonatal Intensive Care Unit as she needed to be monitored. It was then that Ella’s eye turned in and stayed in this time. The day I was finally released from the hospital, after some complications during labour, we decided to take Ella to her optometrist. He sent a referral home with us, telling us to go to the emergency room. We went straight to the Alberta Children’s Hospital and while we were seeing an emergency doctor, we received a call about a referral to an ophthalmologist, who was just on the second floor above us. The ER doctor was fairly certain this was just a lazy eye, as it is common at the age of two for this to happen, but he sent us upstairs just to be certain. All the tests you could think of were done on her eye and nothing seemed unusual. They also confirmed that it was just a lazy eye and we were to start patching her good eye and come back for routine check-ups to see if there were any improvements. Ella was doing well at all follow-ups and was even showing some small improvements.

That’s when Ella started waking up in the middle of the night, saying her head hurt. She would say she needed a towel on her head to make it feel better. One day, while visiting family, she said she needed Aunty to give her medicine. Aunty gave her water in a medicine cup and Ella went back to bed saying her head was all better. Migraines run in my family, so we were not too concerned, but we did take her to her family doctor to see if there was anything we could do. She asked us to monitor it and said if she continued to wake up complaining of her head hurting, to come back the next week. I took her into the doctor the next week. The doctor gave me a letter to give to the emergency doctor. She said, “Let’s just give us some peace of mind.”

It didn’t seem like it a big concern and since her sister Reese was having at least four appointments a week at that time, we decided we would bring Ella in the next day. The next day, June 5, 2017, I took Reese for her four-month follow-up and Lyle took Ella to the Alberta Children’s Hospital. They gave Ella a CT scan and while I was at Reese’s doctor appointment, they were waiting on the results of her scan. It was taking hours and Lyle and I both figured the scan was okay. We figured they were seeing the high priority patients first. Little did we know that it was taking so long because they were getting a team of doctors together to speak with Lyle.

That day, Reese finally got the all-clear. We no longer had to continue with so many medical appointments. That’s when I received a text from Lyle, saying, “Call when you can.” He then called and said, “Just get to the hospital.” That’s when I knew something was wrong.

On my drive there, Lyle was able to leave Ella’s room and call me back and tell me the words that you never think you will ever hear. “They found a tumour in her brain.”

I wish I could recall the rest of the day and tell you exactly what happened, but I had become numb. Everything was a blur. When I got to the hospital, Dr. Gallagher came into see us and so matter of factly told us that Ella was not going to be going home today. Instead, she was admitted right away to unit 3. She needed to be monitored very closely every hour, day and night. She was scheduled for an MRI the next day (Thursday) and was scheduled Friday for a surgery to try and remove the tumour. We didn’t leave Ella’s side after that. Family all came and we were all taking in as much as we could, taking pictures and videos to try and have as many memories as possible in case the unthinkable happened.

“There are things far worse than death.” This statement still haunts me today. It is a statement someone said to us, when preparing us for her surgery. Ella’s tumour was the size of a lemon, we were told, and it originated in her brainstem. The brainstem is responsible for basic functions such as breathing, heart rate and body temperature. There was no cerebral fluid in sight on the MRI, severe hydrocephalus, an accumulation of cerebrospinal fluid (CSF) within the brain. The tumour was that large, the major artery in her brain was nowhere to be seen either. They wouldn’t know what to expect until they were able to get her into surgery. This surgery was emergency surgery; not just to remove the tumour, but to save her life.

Friday was the longest day of our lives. The hospital floors were worn down just a little bit more from us pacing back and forth for nine hours. We received the page that we were finally able to go see Ella. Lyle and I ran as fast as we could through the doors of the Pediatric Intensive Care Unit (PICU). I don’t know if anything could have prepared me for seeing my little girl the way she was that Friday night. She was hooked up to every machine and had an external ventricular vein (EDV) – which is a little tube draining cerebrospinal fluid from the top of her head. Intravenous (IV) tubes were everywhere. She was fighting everyone. No one could calm her down. She didn’t sound like herself. The nurses immediately saw me and asked me to sit down and hold Ella to try and calm her down. I was unsuccessful. I can’t even begin to describe the feeling you get, seeing your child in so much pain and being so helpless.

We also found out that they were only able to do a partial resection of the tumour. The team of surgeons felt they could not get any closer without doing damage. Ella’s tumour is considered incurable. Due to the location, they cannot fully remove it. It will always be there and it will always grow. We were told this is the worst spot for a brain tumour to be.

Ella was fighting so much, that it would sometimes take up to six adults to hold her down. The EDV was draining fluid, so if she moved from her position it would have to be adjusted. Otherwise she too much pressure would build up and would cause more pain. Every time she moved, we would have to clamp her until she calmed down. This would also build up pressure in her brain. It was a no-win situation. I am beyond thankful that she is such a strong girl, but this time she was fighting the wrong fight. She needed rest. She needed to heal.

Over the next few days, Ella started having difficulties breathing. She was only scheduled to stay one night in the PICU; however, because of the complications, she stayed a full week before moving up to unit 3. There was so much swelling in her throat that she needed help to just breathe. At that time, they did not know if the swelling was due to damage caused during surgery, removal of the tumour, or just from having multiple breathing tubes switched out during her operation. While in the PICU, she also caught an infection, so was put in isolation.

Imagine being 2.5 years old, having to be tied down and slightly sedated constantly so you don’t rip out your EDV or your breathing tube and only seeing doctors in yellow gowns and masks. I’ll never be able to erase that fear from Ella’s mind. She also needed a feeding tube, which she ripped out. After that she just didn’t eat. The fear was if another one was put in, she would just rip it out, or confuse it with her EDV, and potentially rip that one out as well.

We were told almost right away to be prepared; Ella would need a shunt – to help drain her fluid due to the location of the tumour. But they were going to give it some time to see what time would do. She then caught a severe case of pneumonia on top of the other infection she had. Whether or not she needed a shunt would have to wait until that was over. Throughout the next week, Ella was still having outbursts where it would take many adults to hold her down. Sometimes it would last 30 minutes and sometimes hours. This we learned was called posterior fossa syndrome. Posterior fossa syndrome has a whole range of symptoms, which can include problems with coordination, speech, swallowing, speaking and emotional difficulties which include mood swings, agitation and angry behaviour.

During one of her outbursts, they realised that the stitching from surgery had opened up and her cerebral fluid was leaking. It was all over her pillow. Even with pneumonia, she needed a shunt put in right away.

Off she went for her second brain surgery. During that surgery, once her skull was opened up, they could see she was so badly infected, they could not risk putting a shunt in. The risk for meningitis was too high. Instead they “washed” Ella’s brain and tried to get it as clean as possible. We would have to wait for her to recover from her infection before they tried again.

Knowing that Ellas was going to need another surgery, she was also always NPO – nil per os, a Latin phrase that literally translates into English as “nothing through the mouth.” She wasn’t able to eat or drink or have anything by mouth. She had constant IV fluids, but she eventually needed TPN, which is total parenteral nutrition, a way of feeding patients all the essential nutrients they need intravenously. She needed nutrition. She had gone far too long without nutrients. As a 2.5-year-old, she was wasting away before our eyes. She had been poked with bloodwork so many times – daily – and needed TPN for so long that it started taking a toll on her veins and her veins started failing. The TPN ended up leaking out of her veins and causing so much damage that a plastic surgeon had to come look at her poor arm, which was double the size of what it should be. It caused her so much pain, she would just cry from then on anytime she thought you were getting close to her to try and “poke” her. She became obsessed with band aids, but the hospital ones just wouldn’t do. We would have to bring some from home every day. Paw Patrol, Princess, Avengers – anything that wasn’t from the hospital. She would put them all over herself. It was the only way she would allow pokes.

It was around this time that she was finally allowed to start eating food. There was still so much damage to her throat that a bit of yogurt made her aspirate. She had to learn how to eat all over again without choking with each bite. Things were so bad that even when we tried to get her to finally brush her teeth, she would aspirate with that. She had to start therapy just to help her eat. It took about six months post ops for her to start gaining confidence in her eating again. Even now, depending on what she eats, she can still cough and have some problems.

Finally, after three weeks in the hospital, that’s three weeks of blood tests and pokes every day and being in isolation, we were given the OK to have her third craniotomy – to have a shunt put in place. The surgery was a success and they were finally able to do the surgery and get the EDV out. This meant she was finally able to get out of bed without having to worry about clamping her EDV. She could finally move freely.

We stayed in the hospital for another week after these procedures as she was still not fully recovering as well as she should be. Every day in the hospital Ella would have some type of therapy. She needed to practice just sitting up and holding her head by herself. I will never forget the day she was going to have another feeding tube put in. Our neurosurgeon told us she strongly believed that Ella’s mental health was preventing her physical health from getting better. We were given a day pass, which turned into a night pass, which turned into a discharge the next day. If all had gone well, Ella was expected to have a hospital stay of only five days. But, by the time she was discharge, her stay had been four weeks.

There are many side effects from all of the surgeries and from the tumour itself. Ella now has facial palsy on her left side. It has made her eye closing fully impossible. Her left eye never closes. It has become so dry that there is a real concern for her to lose the sight in that eye. She is scheduled soon for another surgery to partially stitch her eye and will eventually need a weight placed in her eyelid to help close it. With her right eye open, they suspect she sees double. Because of that, she does not like to open that eye. If she keeps that eye shut for long enough, her brain may decide to shut off that eye. Ella also has ataxi – meaning her balance is extremely off. With the growth she has now seen, her balance and ability to walk has been even more affected. She receives therapy for that, which has helped her adapt to her capabilities. Ella has also lost all of her hearing in her left ear. Light bothers her and she also becomes over-stimulated easily and quickly. Then she struggles to calm down afterwards. She has started to realize that she struggles to keep up with her friends and you can see that each and every day her confidence is slipping away. She sometimes cries when we say we are going to the park and begs us not to leave the house. Unfortunately, this may not be the end of the list of her deficiencies.

Things were very slow in her recovery, we had multiple appointments each week with different specialists. Ella was put on a watch-and-wait schedule for her tumour with an MRI done every three months. Usually she requires a quick MRI between each one. By January of 2018, her tumour had grown 75 per cent – enough to realize that chemotherapy was necessary to help stabilize the tumour. Chemotherapy also has long-term effects that will not present until later in life.

The week after she was discharged, Ella was scheduled to have an IVAD put in to make accessing her veins and having treatments easier. An IVAD is a small device that is inserted under your skin. It is attached to a catheter in your chest and the catheter is inserted into a vein. She is in the middle of 70 weeks of chemotherapy with the assumption that the rest of her life will be an endless cycle of chemo and surgeries. She is on the lowest dose of chemo, which should give little to no side effects. Except, Ella seems to be the exception to all the rules and experiencing the rarest of side effects.

While on chemotherapy, fevers are very serious. Ella needs to go into the hospital and have blood drawn and go on preventive antibiotics. She would always get a fever while on treatment and would always end up in the hospital. Finally, after a few months, they realized that the fever is a symptom and she does not have to go in every time. Her hair has started to thin. She now gets sick and has more down days than good days. She will have short bursts of energy, but it takes so much out of her that she has to spend hours lying down.

Ella just received another MRI, after being on treatment for six months. There is a tumour cyst that has grown four times the size since last year. It is pressing on her cerebellum and causing even more balance issues. Her fourth ventricle is crushed and is not allowing fluid to flow. Now we start the process all over again – surgery where they will go in and drain the cyst and try to debulk more tumour. This will hopefully prevent the need for a second shunt to be inserted.

Going through something like this, as a family is extremely isolating. Of course, friends and family try to understand what you are goingthrough, but it is something that it just too difficult to explain. We hear over and over that Ella looks great and because you can’t see her tumour growing, or the effects it has taken on her emotionally, it is hard to understand the constant fear that is in your mind every single day, every waking moment. Every cough, every fall, every illness terrifies you.

In our darkest days, we have met some incredible people, either families going through their own similar stories, or foundations like Kids Cancer Care that are there to help. These people are beyond amazing. Everyone has gone out of their way to make sure Ella feels as comfortable and confident as she possibly can.

Through Kids Cancer Care, Ella goes to a gym class called PEER that runs throughout the school year. It is held at the Gordon Townsend Gymnasium at the hospital and it has so many other kids Ella’s age. It is such a wonderful class and they even have a one-to-one aide for Ella, as she needs extra help and encouragement. It is so great to see her at the end of every class with a smile on her face. This summer, Carolina, the instructor, even reached out to us to keep seeing Ella, just so she doesn’t lose any of the progress she was making. Carolina didn’t have to do this – it is something that she chose to do just out of the kindness of her heart. That is how they are at Kids Cancer Care.

We had the opportunity to see Camp Kindle for the first time on Mother’s Day, because Kids Cancer Care had planned something for all the moms and families. There were arts and crafts, volunteers for the kids and massages for the moms. Ella had so much fun; she talked about Camp Kindle all the time after that. When Kids Cancer Care held their Spring Family Camp, she was so excited to be able to go. Even though she was a little apprehensive to participate and play with many of the other kids, you could constantly see a smile, playing on her face.

By the time summer came this year and I found out that Kids Cancer Care offered a week-long day camp, I had to sign Ella up. I was a little afraid, because Ella has never been without me or Lyle by her side for that long since she was diagnosed. But they assured me that Camp SunRise would have enough volunteers to give Ella a one-to-one camp aide. We even got to go to Kids Cancer Care the week before camp started, so Ella could meet her camp volunteer, whose camp name is Cookie. Ella still has a picture of her and Cookie that she still looks at. She also still talks about her new friend Henry she met at camp. They even got to see each other again at the Panda Breakfast, Kids Cancer Care and the Calgary Zoo hosted, so kids on treatment would have a chance to see the pandas too. Ella is unable to go to Henry’s birthday party this year, so Ella and Henry are having a party earlier just so she doesn’t miss yet another experience. It is amazing what all these camps and activities are doing for Ella’s self-esteem, confidence and overall happiness. You can see just how far she has come in such a short time and we owe so much to Kids Cancer Care. We get emails from people just to check-in and see how we are doing. And we are always invited to all of the activities or camps that are going on.

I don’t wish this on anyone, but I am so thankful for the support systems that are put in place to help. These kids miss out on so much in life because most of them cannot risk getting sick. They are forced to grow up so quickly and to deal with things that most adults are not even capable of dealing with. To have a safe place to go and just be kids, there are no words to describe my gratitude.

We are learning as we go and we may have setbacks, but with all of that, one thing that we will always have is hope. By meeting others in similar situations, we have been given a chance to see just how strong a community Kids Cancer Care is. No one chooses to be part of this community, but we make sure we all feel like family. One day at a time and we will deal with every surgery, treatment, problem and complication that comes our way with our family. Ella is my hero.

– Christie Reimer, Ella’s mom