Davis’s fight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Davis’s mother Janine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Michelle, Lily’s Mom

“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

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

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

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

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

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

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

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

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

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

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

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

~ Heather Roy, Evelyn’s mom

Evelyn’s photo album

Hi, I’m Ryane. I know I may look like a normal, active 15-year-old, but I am not.

When I was only three years old I was diagnosed with Wilms tumor — that’s a type of kidney cancer. My mom had started noticing about seven or eight weeks earlier that something was wrong. I had stopped eating and was lying on the couch all the time. We had been to the hospital nine times during those seven to eight weeks. By the time I was diagnosed, I had dropped down to 30 pounds. For a point of reference, I weighed 26 pounds on my first birthday. Everyone knew there was something wrong, but we never expected cancer. When we received the diagnoses, my family was in disbelief. A three-year-old child doesn’t just get cancer.

The next day, I was put through a battery of tests and admitted into the hospital. I don’t remember everything, but one of the things I do remember was getting an IV. It took both my parents and two nurses to hold me down. By the time it was done, EVERYONE in the room was crying. They had given me the IV for an MRI, instead of sedating me. My mom and another nurse held my hand while singing, “You are my sunshine,” to calm me down during the MRI.

My mom remembers it was a Wednesday night when we first encountered Kids Cancer Care. Their volunteers were doing a Pizza Night on the oncology unit. We didn’t know we would have to stay so long at the hospital, so my dad had gone home to get my pajamas and my Teddy blanket. I was sleeping in the room and one of the volunteers offered to stay with me, so my mom could go and grab dinner. Mom refused to leave me alone for a second.

We stayed in hospital for a little over a month. During that time, Kids Cancer Care volunteers came in and played games with me because I couldn’t have visitors. Believe it or not, I was one of the lucky ones. I had nine rounds of radiation and 10 months of constant chemotherapy. Our life changed drastically over those months. My parents and I were constantly together, because I wasn’t allowed to go anywhere. Being exposed to other diseases or germs can be life-threatening for a child on cancer treatment. I had lost almost all my hair and I probably looked like a baby orangutan, but I refused to let my mom shave my head. I said, “Mom, what princess doesn’t have hair?”

The following spring I was excited to go to our first ever Family Camp with Kids Cancer Care. In the parking lot of camp, I met my best friend Maddie. We became instant best friends and were like two peas in a pod. At nighttime, we talked through a little hole in the wall and kept our parents up all night long. Maddie and I are still great friends today and we continue to go to Camp Kindle together every summer. Thanks to people like you, this summer is my 11^th year of going to Camp Kindle.

Because I was so young, the cancer treatments interfered with my growth and development. The chemotherapy caused the wall of my left ventricle to thin. This caused a serious heart condition.

I also have a pretty serious learning disability. My mom started noticing this when I was in grade three. We used to read together at night before bed. What my mom didn’t know was that I was reading only by memory. When we started a new book, she could see that I didn’t actually have the skills to read and that I was just memorizing it. That’s when I went for testing and was later diagnosed with a learning disability. I was in grade three and the test showed that I was at a kindergarten level in math and a grade one level in reading. My mental processing speed is also a lot slower. These are some of the classic learning issues of many childhood cancer survivors. While I was in the room doing the testing, my mom was sharing her concerns with the counsellor. The counsellor looked at my mom and said,“You don’t really think she’ll ever graduate, do you?” My mom stood up and, without a word, left the room. My mom says, “We didn’t fight all that time to give you a future, just to give up on your future now.”

I’ve been facing these kinds of situations my whole life. In grade six, when I told my gym teacher I couldn’t participate in wrestling, she didn’t believe me. She insisted I join in. My mom had to come in with a two-page letter, detailing my medical history. This finally convinced my teacher that participating in contact sports could be life-threatening for me. I honestly don’t think my teacher was being mean. She just didn’t understand.

I now go to a school for kids with learning disabilities. There’s more testing to be done, but my parents just can’t afford it. It cost a lot to go to Foothills Academy — over $15,000 a year. But it is helping. We’ve learned that I need a lot of repetition to grasp a concept. It’s a lot of hard work and I stay after school every day for homework help. I’m also on the waiting list for a tutor with Kids Cancer Care and I’m sure that will help too.

I’m 11 years off treatment and considered cancer-free, but I live with the side effects of cancer every single day. I still go for regular Echo tests and ECGs for my heart. I also go for regular follow-up at the Long-Term Survival Clinic. Like 75 per cent of childhood cancer survivors, I will live with these conditions the rest of my life. These conditions grow worse with age and without any apparent plateau.

My cancer doesn’t just affect me. It affects my parents as well. My mom has been diagnosed with PTSD. She no longer works full-time because she wants to be there for me. My dad works two jobs — as a carpenter and firefighter — to make ends meet.

Cancer has had a big impact on all our lives, but that doesn’t keep me from doing the things I love and enjoy. One of the things I love doing is going to camp every summer. The best part of camp is that everyone understands. Everyone knows what cancer is without having to explain a thing. If there is a kid who is bald, or missing a limb, or someone with a feeding tube, it doesn’t really phase anyone. We all just get it. We’ve all been there. There is complete acceptance and you’re just free to be yourself.

Another thing I love doing is the Teen Leadership Program through Kids Cancer Care. This year, I helped raise $54,000 so the teens could do a service trip to Mexico. While there, we visited a children’s cancer center, a shelter, a hospital with kids on treatment and helped out with a construction project. At home, in Calgary, we volunteer at the Ronald the McDonald House and at Kids Cancer Care programs and events.

I have also volunteered as a Kid Coach for the High Hopes Challenge. This year, I am Kids Cancer Care’s spokeskid and I am looking forward to sharing my story with people like you from across Alberta. My hope is to raise more awareness about this disease to inspire people like you to get involved to help kids like me and their families.

Helping kids with cancer helps me to make sense of my own cancer and it gives me hope for all of us. The motto I live by is: “Cancer may have started the fight, but I’m finishing it!” Thank you. It’s people like you that help me to live by this motto.

~ Ryane Nethery

My photo album

When Michael was 20 months old, something changed. Suddenly he was not himself. He became fussy, seemed to be sick constantly and was not eating and sleeping like he used to. After weeks of this, I got a phone call from our day home provider, saying Michael would not get off the couch and that he had a fever. I took him to a walk-in clinic, thinking “We’d better make sure everything was okay.” The doctor looked him over and said he seemed to “Maybe have an ear infection.” At home, Michael was lethargic and I suddenly noticed that his unusual clinginess seemed to be related to the fact that he couldn’t withstand any weight on his legs. The next morning, we had an appointment with our family doctor. At this point, Michael seemed to have stiffened up much more and I was very concerned. The doctor did not even look at him. He told us to go straight to our local hospital.

At the hospital, they did blood work and told us he was anaemic, which could explain his fatigue. The leg pain was attributed to his last cold and that the viral infection had inflamed his joints. We left the hospital…still not feeling great about this.

By this time, I had called my mother. She is a nurse and so I asked her what she thought. I wasn’t sure if I was overreacting or if I should be listening to my gut instincts. She told me she wanted us to have him checked out at the Alberta Children’s Hospital. She too had noticed his downward spiral and didn’t like the fact that he was getting worse instead of better. It was already quite late, so I decided to see how the night went and would decide in the morning. My mom instincts were firing like crazy, but I didn’t want to be blowing things out of proportion either.

We had a terrible night with little sleep and further development of his symptoms. It seemed that just touching him caused pain and he would not bend or use his legs. When I went in to comfort him, he was soaked in sweat. As soon as morning came, we were off to the Alberta Children’s Hospital. Little did we know we would not be coming home for a very long time.

In the emergency room we were put to the top of the triage list and taken right back. They were very concerned. “Is he always this pale?” “When did he stand/walk last?” “How long has he been sick?” “Is he usually a sweaty baby?” I remember comments about his veins collapsing for no apparent reason, enlarged lymph nodes and a lot of bruising. He became a human pin cushion that day with seven IV attempts until one finally stayed. I was trying to remain calm. While he was sick, his symptoms were progressing quite quickly. After about 10 hours in the emergency room, we were moved up to a unit to wait for an MRI. We were told he would not be going home until he was walking again. While I didn’t like the idea of being admitted, I was finally starting to feel like everything would be okay in a day or so.

Once situated on the unit, many tests were run. Pain medication was given. Fluids administered. Blood drawn…constantly. Sometimes three or four times a day. An MRI was done and we were told there was a lot of inflammation around his knees. They did not know the cause. Finally, morphine was given to see if we could start getting the pain under control. On the fourth day, we still had not seen improvement. There was no sign of home and I was growing weary of the hospital and lack of sleep.

Suddenly a team of about five doctors entered the room. They asked us to sit down and told us they had found blasts in Michael’s recent blood work. As soon as I heard the word blasts I knew. The word cancer had not been said until this point. With all the knee problems, the idea hadn’t even crossed my mind. It turns out that the blasts were overfilling his bone marrow, creating pressure on his bones. The pain must have been excruciating for him. Unfortunately, this news came on a long weekend. We had a long three-day wait to confirm this diagnosis and to find out what type of leukemia Michael had. On Tuesday, July 3^rd, his diagnosis was confirmed – acute myeloid leukemia (AML). I have no words for this day. Put simply, our world shattered.

Michael was scheduled the next morning for surgery to have a double lumen Broviac placed in his chest. This central line would allow his medical team to administer all the chemotherapy, blood transfusions, anti-nauseants and antibiotics. It would also enable them to perform regular blood draws for testing. We were very excited about this since we were starting to understand that the chemotherapy would make him better and having the central line meant no more needle pokes. The constant pokes, the isolation gowns, and of course the pain, had taken its toll on Michael. Now to add to his symptoms, he had become non-verbal. We were hopeful that the central line would decrease Michael’s discomfort and would make this experience more tolerable for him. In addition to the central line placement, we were told that they would do a lumbar puncture to test his spinal fluid for leukemia as well as a bone marrow biopsy to test the genetics of his leukemia.

The night was not good. It was our scariest night yet. His vital signs began to decrease. Oxygen saturation had decreased, heart rate had increased and his blood pressure was low. There was suspicion that pneumonia had set in. He was placed on antibiotics and chest X-rays were done. Add to this the pain and lack of sleep. I was becoming a pile of nerves. The next afternoon, my husband and I walked him down to surgery. Unfortunately, the progression of his illness caused him to code blue as soon as the anaesthetic was administered. He was placed on life support and sent to the Pediatric Intensive Care Unit (PICU).

I can remember sitting in the cafeteria and hearing “code blue” come over the intercom. I shuddered and said we needed to get back to his room. I did not know that the code was for Michael; but once again, my mom instincts were firing, and I felt that something wasn’t right.  About 30 minutes after returning, the anaesthesiologist came back…without Michael. We were told what had happened and were brought to the Pediatric Intensive Care Unit.

And there was my baby. He had been placed under sedation and was on a respirator. He now had pneumonia and his lungs needed a break to heal and recover. The sedation meant he wouldn’t fight the respirator and would not be in pain. The respirator was breathing for him, so his could lungs get the break they needed. The bone marrow biopsy and lumbar puncture were done in the PICU, so he could get the chemotherapy immediately.  In the darkness of the PICU, without windows and natural light, night became day and day became night as we waited for his lungs to heal and the chemotherapy to do its job. Time was meaningless to us.

After three days, he was showing signs of being able to breathe for himself. The strength of the respirator was gradually turned down over 24 hours until they were sure he could breathe on his own and be extubated. Two days after coming off sedation and off the respirator. we were sent back to the unit — our new home for the next seven months.

Things only got better after this. After his first round of chemotherapy, Michael went into remission. His body responded extremely well to the chemotherapy. Because of this, Michael did not need a stem cell transplant and he would be treated with five rounds of high-dose chemotherapy. After two months of physiotherapy and speech therapy, he began to walk and talk again. We managed to make it through five rounds of chemotherapy and seven months as an inpatient without any infection or further visits to the PICU. This was not to say our time was easy. Nausea, mucositis, fatigue and neutropenia took its toll on Michael. Neutropenia is low neutrophils, a type of white blood cell, which means his immune system was dangerously low and the simplest infection could be life-threatening. With each round of chemotherapy, the recovery became more difficult.

Our first introduction to Kids Cancer Care was during their weekly Pizza Nights at the hospital.  Every Wednesday they would bring in delicious pizza for families on the oncology unit. This became tradition for us. It was our family night. My husband would bring my other son and we’d eat our pizza and watch a movie. It gave us the family time we so badly missed and NEEDED. It was on a Pizza Night that Michael walked again, on his own, for the first time since the ordeal had begun. I remember being beside myself with happiness and the Kids Cancer Care volunteers joined us as we celebrated.

Once Michael was off treatment, Kids Cancer Care gave us experiences we otherwise would not have been able to have. For the first year, Michael would have very low immunity. Even though we got to go home, public places were off limits for a certain period. In this time, Kids Cancer Care allowed us to partake in a morning at the Calgary Zoo to see the pandas. Everything was disinfected and we were allowed in before the public to decrease the risk to the children. We also participated in a wonderful Mother’s Day gathering at Camp Kindle.  A day of skiing in February.  The list goes on.

And then there is camp.

I will admit, I wasn’t totally sold at first. My oldest son Henry was four at the time and I didn’t see the need for him to attend since he did not have cancer and Michael was done his treatment. How wrong I was.

When going through an experience such as this, we all need our “tribe.” For me, it was my very close friends and family and my husband. I had incredible support from all of them. For my husband, it was our family and his friends. After the first day of camp, I saw that Henry had finally found his tribe. I had not realized how much coping he had left to do. This was a place where things started to make sense without there having to be a conversation. He was surrounded by this world of children fighting cancer and children who had fought cancer. Siblings of children who had fought cancer, were fighting cancer, or were bereaved. Despite everyone’s stories being different, they were making it. They were having fun.  They were supported.  The cancer world is filled with fear and instability. For Henry to be surrounded by this allowed him to finally find stability in the cancer world. We noticed a huge change in him after camp.

Our world will never be the same. We will never be the same. We do not know what lies ahead in the future. The risk has decreased with time; however, relapse is still a possibility for our future. This type of leukemia carries a very high chance of relapse. The incredibly high doses of chemotherapy that Michael received could have negative effects on his heart health as he gets older. We have been told that his eyes and hearing should be checked regularly. His heart will be checked for defects annually for the rest of his life. His risk of secondary cancer is also very high.

I have learned over the months that living in fear of the what-ifs, while necessary, is also a step backwards for our family. We almost lost Michael once. The what-ifs force us to lose him in our minds over and over again. So, for now, we focus on today. Michael is meeting his milestones and brings us happiness and joy every single day. We now have a three-year-old who has more empathy and love than I could have ever thought was possible. We know this has come from the love that was shown to him from family, friends and health care providers during his treatment.

My favorite thing that has come from this experience is meeting organizations like Kids Cancer Care.  Knowing that there are organizations that fight for our kids, fund research and provide support is so important. Thank you for supporting this incredible organization.

~ Michelle Connor, Michael’s mother

Michael’s Photo Album

At the age of just three and a half months, my son Carter was put on the list for a heart transplant and, at five and a half months, he received a new heart. We were overjoyed. But then this past August, at the age of nine, Carter was diagnosed with non-Hodgkins lymphoma – a cancer that can arise in transplant recipients. His cancer was diagnosed at stage 3 – and tumours were found on his kidneys and bowels. It has been a tricky process for the doctors to treat his cancer because they do not want to add any more damage to Carter’s kidneys or heart. Despite all that he has gone through, he is the sweetest guy you will ever meet.

I was recently laid off from work and I am now collecting Employment Insurance benefits – Compassionate Care. While I am grateful to receive this financial help, it’s still very difficult to make ends meet each month. The children’s Dad and I divorced in 2013 and he wasn’t really a part of their lives. Last year he passed away with the same heart condition as Carter.

We are facing one of the biggest struggles our family has ever faced, but I feel blessed to have such wonderful children: Olivia is 11 and Carter is nine. I also have two adult children Jack, who is 21 and Alyssa who is 20, who have been with us every step of the way. They have been the backbone holding us all together.

We are sincerely thankful for everything that Kids Cancer Care has done for our family. Pizza Night at the hospital has been a favourite of ours over the past many months. We don’t have the proper words for all the support we’ve received, but it has definitely not gone unnoticed or unappreciated. Thank you Kids Cancer Care.

~ Tracy Thompson

Carter’s photo album

My son Jaxon was just four years old in 2017 when he was diagnosed with medium to high risk acute lymphoblastic leukemia. It was a shock to me. What I initially assumed to be growing pains was actually deteriorating bone marrow density and a spinal compression fracture. Whoever heard of a preschooler with a broken back? I had no idea what lay ahead. I was terrified.

The turning point for Jaxon happened within the first month of treatment, which they call remission induction, where they attempt to destroy all the leukemia cells in the patient’s blood and bone marrow. During this time, Jaxon rapidly put on weight due to the steroids. Not only did his skin itch and his body ache, but he was also dragging around all this extra weight. He was on painkillers that didn’t minimize the pain, but made him feel lethargic. This was quite a change from the active boy we knew. As his mother, this was the hardest thing for me to see, such a drastic change in behaviour. I still struggle with this.

Sometimes I worry that I will never get that boy back. I continue to learn more about the immediate and long-term effects of treatment, as we move through the journey of battling cancer. I’ve learned that chemo injections into the spine causes personality and behavioural changes. It also causes learning difficulties. I tried to prepare myself and my other two children for Jaxon’s eventual weight loss, loss of hair, nausea and mood swings, but I’m not sure anything could have prepared us for the personality changes we saw. How do you mourn the loss of the personality and life we knew as Jaxon? This disease greatly alters and rearranges the lives of a family.

Cancer effects our whole family. Although we all rallied around Jaxon and the well-being of my other sons Ethan and Ryan, my marriage dissolved quickly under the pressure of our new reality. I think Jaxon’s father just wasn’t prepared to see the effects that cancer had on his child. He still has zero interest in dealing with Jaxon’s cancer and the treatments. He even refuses to take the other boys, while Jaxon and I are at the hospital.

My children have shown amazing strength and resilience throughout all of this. Jaxon’s brothers have bonded together to help get us through this in really incredible ways. Jaxon’s twin brother Ryan has become Jaxon’s voice and confidant, while his older brother Ethan takes on a more protective role. When Jaxon’s hair started falling out, Ethan was always there to tell him he looked cool or to stop others from drawing attention to it. As a single mother, I continue to be inspired by how my sons have dealt with the changes Jaxon is going through. They have all played an important role.

Jaxon is still actively fighting this battle and will continue to do so until July 2020. At that time, he will be seven years old and will have battled cancer for most of his life to date. Battling leukemia is long and arduous and even when the treatments are over the battle is not. The treatments can cause depression in kids, which is something Jaxon battles with regularly, saying things like, “Just let me die” and “Aren’t I better yet?” Not surprisingly, he usually says things like this after an extended hospital stay. It’s difficult for Jaxon’s brothers to truly understand just how long treatment is. For most kids, an illness is usually over within a week or two. Being on treatment for three and half years is difficult for children to comprehend.

At this point in Jaxon’s cancer journey, my boys are just grateful for his improved health. We are now more focused on paying what we can forward. We are grateful for the amazing people and organizations who have helped us get through the first very tumultuous year.

I don’t think we would have done as well without the support of Kids Cancer Care. I don’t know how I would give the kids the foundation for emotional healing that Kids Cancer Care provides.

For me, the best decision I made, as a single unemployed parent of three boys, was to focus on my son’s recovery and make sure he was not alone. The support Kids Cancer Care provides our family allowed me to do that. They have been there for me and Jaxon and his brothers through every step of this journey. I know the foundation is there for people just like me, facing the same family crisis that we have faced together. They know the struggles. They know next steps. They have the empathy and the experience of interacting with parents in shock and then throughout recovery. That allowed me to breath, during a time when I felt I was drowning.

I am grateful for my children every day, but as we draw closer to Christmas, I feel even more blessed. I cherish the love of my children and all the love we have in our lives. May you be blessed with health, love, peace and joy this holiday season and everyday of the year.

~ Marie Howell, Jaxon’s mom

Jaxon’s photo gallery

Our son Cohyn Joel Jaskela was diagnosed at 14 months old with ATRT (atypical tetatoid rhabdoid tumour), which is a very rare and aggressive brain and spinal cord tumour.

About a week before taking Cohyn into the hospital, I had measured his head, which sounds weird, but I was a nurse at the Alberta Children’s Hospital and I worked on the neuro unit. To this day I still do not know why I measured his head, but I did and we thank God for that. His head circumference went from 50% to 96% in less than two months from his 12-month checkup.

The day before we took Cohyn into the hospital he started to lose his balance and was saying less words. By the time we got him to the hospital he could barely sit on his own and was not saying any words. But he was still happy little Cohyn, waving and showing off for the doctors and nurses.

We did not have to wait in the emergency waiting room as they took us right in and within 45 minutes Cohyn had a CAT scan, which showed a massive tumour in his brain and throughout his spinal cord. He also had massive hydrocephalus, which is fluid collection on the brain.

At first we could not believe it. Cohyn was always a happy and very healthy child, never even had a cold in his life. We were not angry, but in disbelief and only wanted to know what we could do to help our special little boy. I also struggled with the idea that I am a nurse and should have caught this earlier.

Right after Cohyn had a CAT scan he received an IV and then went for an MRI and straight into ICU. Within 26 hours of us bringing Cohyn to the hospital he had so much increased pressure in his head that he actually coded, which means he stopped breathing and his heart rate was lower than 40 beats per minute. They could not even get him into the operating room and had to put an emergency EVD (external ventricular drain) into his head in the ICU and he was ventilated. He was only ventilated for 24 hours and then the pressure lowered and he started to breathe on his own again.

Since Cohyn’s brain surgery was so big the surgeon wanted to have his team do the surgery, so we had to wait five days over a weekend to get the surgery done. That was a very long wait as we were both very anxious, but knew that everything was in God’s hands and Cohyn would come through the surgery.

The day of his brain surgery we were very nervous and I don’t think either of us had slept for almost a week. I remember going back to Ronald MacDonald House and just lying in the bed, unable to sleep, so we came back to the hospital early, even though we knew the doctor would call when they were done. Cohyn’s first surgery went really well. It was 3 ½ hours long and they got 95% of the brain tumour, but would not do surgery on the spinal cord as it was too dangerous.

Cohyn was doing really well after surgery and we both thought we would be out of the ICU quickly and starting chemotherapy on the Oncology unit soon, which changed very quickly. Within 3 days of surgery Cohyn started to have seizures and his drain was leaking because of increased pressure. Our brave man Cohyn had two sutures with no freezing to stop the drain from leaking. I thought I was going to faint, as I was in the room for everything and would not leave. A couple days after this he had more seizures.

Cohyn was now on a large dose of seizure medication that his body kept metabolizing too quickly, so he would have more seizures from a low concentration of the seizure medication in the blood stream. They finally stabilized his medications and pulled his EVD drain out and we are off to the Oncology unit. We were very excited to get started on the chemotherapy as that was ultimately going to help our child.

When we got to the Oncology unit, we had many teams following us and we almost felt overwhelmed for the first couple days. They all wanted to do exams on Cohyn. We had ICU, Oncology, Endocrine, Neurosurgury, Neurology and Hematology. Within a couple days of being on the Oncology unit, Cohyn started to get a bubble of fluid on the top of his head, which meant increased pressure and back to ICU. He had a CAT scan and off to surgery for another EVD drain. More complications. More CAT scans and more surgeries. They had to insert an internal shunt, which is a drain from his brain to his belly.

We could not believe what was happening to us. Our poor little Cohyn had to go through so much. It had been two weeks and we had not even started chemotherapy yet. We got through every day finding something positive about the day and engulfing Jesus strength, courage and wisdom. Also Cohyn’s happiness and laughter really helped us through. He was our inspiration as he was the one going through all these terrible things and yet he was so happy. It was all about playing for Cohyn!!

We finally made it to the Oncology unit and started chemotherapy. We started on a protocol which would be four months in the hospital with five different rounds of therapy. The first two rounds involved five different chemotherapy drugs, one of them high dose Methotrexate, administered within a week.The last three rounds involved two different high dose chemotherapies with stem cell transplants. We were nervous, but excited to start chemotherapy, so we could move on with our lives, not realizing that the worst was yet to come.

Two days into the chemotherapy, Cohyn started to develop signs of increased pressure in his head. Of course this was at 1 am and off for a CAT scan we went. The findings were devastating as he had massive, massive blood clots that had developed in his brain. We were back in ICU and could not make it to the operating room and had to externalize his shunt, which meant taking the bottom end of the shunt out of his belly to decrease the pressure, which was done in ICU.

They then told us that we had to put him on a blood thinner, but because he had just had surgery the potential to bleed was very great. Still, the potential for a stroke was greater. We were faced with another very big decision. We chose to put him on heparin and pray that he would not bleed. Our prayers were answered and within 72 hours we were back on the Oncology unit.

The next day he had an MRI, which showed that the blood clots were not getting any bigger, but the tumour on his spinal cord was bleeding into itself. If it ruptured it would be fatal, so again, we were faced with a very big decision. Should we start him on chemotherapy again with such a big risk of this tumour rupturing? With the help of our Heavenly Father we started him on chemotherapy and within a couple days that tumour stopped bleeding. After we finished the round of chemotherapy, Cohyn was back in for another surgery for another shunt.

If you can believe it, by this surgery we were not as nervous and it was almost normal to us. We just gave him a kiss and off he went with the nurses for another surgery. He never had a care in the world!!!

Again, the next day after his surgery, another CAT scan to make sure the shunt was in the right spot and that his brain was tolerating all the procedures.   I remember the first time he went in for a CAT scan and MRI how nervous we were and how upsetting it was to see our precious child have to be put to sleep for the MRI or held down for the CAT scan. Now, it was almost normal to us, as he had been through so much in the last month.

The next two weeks were full of tests and tests and more tests. Cohyn had to have an ultrasound of his kidneys to make sure the tumour did not migrate there. He had problems with his heart rate dipping really low, so he had many CAT scans, ECGs and a 24-hour ECG monitor (Holter monitor). He also got an infection from his mouth sores and teething, so that meant antibiotics and a shunt tap, which is a needle through his head into his shunt, to make sure there is no infection in his shunt.

Cohyn also had to have blood work done every four hours and, even though he had a central line, they had to poke him for his blood thinner test as well as two pokes a day of heparin in his legs. It felt like everyday was so busy with all the tests, doctors and nurses checking Cohyn as well as his own play time.

The next step was to collect stem cells, which was done in ICU and they had trouble getting a femoral line, which delayed our chemo by a week because he had an open area in his groin from all the pokes. Every day, it seemed like something else was going wrong. Then his heart rate was really high and he had to go for another Echo and ECG. His central line was blocked, so we had to go for surgery for a new broviac. Cohyn was also vomiting so much from the chemotherapy that he was started on IV nutrition.

We felt so bad for Cohyn that nothing ever seemed to go right for him. It was always one thing after the next for him, but as long as he could play he was happy. He was so forgiving and loved everyone. Jesus’s love lit up his eyes and shone through to everyone around. He was our amazing little man!!

Throughout this journey Cohyn found happiness in everyday. We have so many fond memories of Cohyn in hospital. Since he was a transplant patient he was right next to the nursing station. This was great for him as he loved to sit in his stroller in his doorway by the nursing station and flirt with the doctors, nurses, cleaning staff and anyone who would walk by. Cohyn loved giving high-fives and blowing kisses to everyone.

His other loves were his toys, music, books, and of course, the playroom. Once a week the music therapist would come into Cohyn’s room and they would play instruments and sing songs for hours. We would also go to the playroom everyday for a couple hours and Cohyn would play with all the toys there. I still don’t know how we managed all the lines and Cohyn crawling, but we managed.

Cohyn really enjoyed when the sports teams and Paul Brandt came in to visit. He also loved playing BINGO and watching the clown. Another fond memory was one day when the clown was in the playroom and the kids were playing the laughing game. This was right up Cohyn’s alley as he loved to laugh and would laugh all the time out of turn. From this experience Cohyn learned to laugh in many different ways and his laugh would change from time to time. Even through all the tests and procedures, as soon as the nurses were done, he would give them a high-five or blow them a kiss. He loved everyone and was very forgiving, which made this experience a lot easier.

The next step was getting ready for the stem cell transplants which meant Echo, ECG, MRI, lumbar puncture, chest X- ray and X-ray of the wrist for bone density, urine samples, throat and nasal swab and blood work. We were a little nervous with Cohyn starting stem cells transplant, as we had known another child who had gone through this protocol and had trouble and ended up in ICU with problems with his lungs. We just had to trust in God and accept that it is not in our hands and Cohyn would do great and HE DID. Cohyn breezed through three rounds of stem cell transplants, which included a bath every six hours, dressing changes around the clock, all the monitoring and isolation. His lungs, heart and hearing were all protected and he had no damage to any organ.

He did have trouble with vomiting and fevers, which kept us in hospital longer. All we wanted was to take him home since we had been in hospital since July 12, 2007.

Miracle after miracle happened and we were able to take Cohyn home on December 8, 2007. We were so excited and he was doing excellent. The MRI showed only a pea-size tumour in his brain and a small tumour on the C1 section of the spinal cord.

It was amazing to see how all the tumour had disappeared without radiation. Since Cohyn’s tumours were extensive and spread throughout his brain and spinal cord we choose not to do radiation, as it would have disabled him and throughout this experience, our focus was always “Quality over quantity of life.”

We left the hospital on an oral chemotherapy, which was a trial drug. Cohyn was doing really well. We were loving our life with him at home. Cohyn had another surgery to remove his central line, had an EEG in order to make sure he would not have any more seizures and was slowly coming off all his medications.

He was feeling so good that we took him to Arizona, Mexico, Niagara Falls and all over British Columbia. We would have never guessed that the next MRI would show a fuzzy spot, which they thought was nothing, to Cohyn relapsing right after his second birthday with no signs or symptoms. Cohyn was starting to walk on his own, was talking more and was playing more independently, who would have ever imagined. We had just gone in for a scheduled MRI. We could not believe it.

We were faced with all the decisions again. How could this be? How could our son Cohyn, who seemed so healthy, relapse and need to go through more treatment again?

We made the decision to start him on the IRS 3 protocol minus the radiation. The next day, we were back in the hospital, getting a Port (central line) surgically inserted. This surgery was upsetting, but we knew it had to be done for our child to get rid of the rest of this terrible disease.

We decided to do this protocol through the out-patient clinic, which meant taking Cohyn home and then bringing him into clinic on the days he needed chemotherapy, blood work and other tests. Cohyn did have to be admitted when he went neutrepenic and got another fever. This was very disappointing as we had spent so much time in the hospital and could not imagine spending more time in the hospital, but we did whatever we had to do to keep our special boy as safe and healthy as he could be.

We finally had some good news as Cohyn’s MRI came back with the tumours shrinking. This meant that the chemotherapy was working. Cohyn went in to have his shunt removed and a G-tube inserted.

Cohyn was doing really well again during the summer. We always treated him as if he was not sick. He did everything that a normal two-year-old would do. We took him to the Calgary Zoo, Calaway Park, West Edmonton Mall, the mountains, rodeos, camping, swimming at the lake, on the boat and on the golf cart and more. Cohyn thrived on our positive energy and made every moment of his life count.

These happy times ended quickly in October, 2008, when we brought Cohyn into the hospital, thinking he was vomiting from an allergy to the antibiotics. To our surprise, as Cohyn had no other signs or symptoms, his tumours were growing, but this time they were a superbug and in an area where they could not do surgery.

The pressure in his head was so great that he went in for emergency surgery and had an EVD drain put in to decrease the pressure. About three days later, he went for another surgery to have a biopsy done and another EVD drain inserted, as the spinal fluid had too much blood in it to put in an internal shunt. We waited about another week to get an internal shunt put in.

In the meantime, Cohyn was such a happy kid as long as he could play ball, hockey and go to the playroom. One of my fondest memories of Cohyn during treatment was chasing him around the hospital with two IV poles as he played hockey with the doctors and nurses in the hospital hallways, laughing and saying, “HOCKEY, HOCKEY!!!” He sure loved hockey.

We actually took him to the Calgary Flames game two days before his last admission to the hospital. We sat third row and his eyes were so big. He would not even talk to us and kept pointing at the ice and the hockey players. He sat through two whole periods and would have watched the third, but we had chemotherapy the next day, so we had to leave early. Cohyn loved sports so much. When we were in clinic getting chemotherapy, we would turn on the sports channel instead of cartoons, so he would sit still during his treatment.

We decided to start Cohyn on an experimental drug, which meant going to the clinic almost everyday for chemotherapy for one week and then the next week off. When on experimental drugs, it is a very strict protocol and Cohyn had to have many tests pre-chemotherapy. He had an MRI, ECG, Echo and lots of blood work.

By this time we were so used to all these different procedures and we thought he was too as it was not a fight to get him to sit still for the procedures.

The day before we started the experimental drug we had to take him into the hospital as he was vomiting. To our surprise, his tumours had increased 30% and we had another emergency CAT scan. We completed four days of the experimental drug and Cohyn had a massive seizure, which had us back in the hospital. Never to leave again. Cohyn Joel Jaskela went to be with Jesus on December 23, 2008.

Throughout this journey with Cohyn, our family, extended family, friends and even strangers learned so much from a special little boy, who really could not even tell us what he thought. Through his gestures, he brought happiness into a very sad situation. Cohyn never felt bad for himself. As long as he could play, he was happy. He brought courage, love and trust into every situation in life and was determined to live life and life abundantly.

We were very fortunate to have a great support system between family, friends, hospital staff and Jesus. When times were tough, there was always someone there to lean on. What was very important to us was keeping a strong marriage with positive energy and Cohyn sure thrived on that. One way we accomplished this was having grandparents stay the night, so we could get some sleep, while they had time to spend with Cohyn. This also gave us a chance to leave the hospital and spend some quality time together.

We keep telling ourselves the only thing worse than watching him leave this earth is the possibility that we may have never known him at all. Even without speaking, Cohyn taught us the true meaning of life – love and friendship with a rock foundation. The little things really do not matter. Cohyn redefined the meaning of “fight the fight” and we are so proud of him. We just thank God that we had the extra year and a half with our special angel and that we will eventually be with him for eternity.

Babies are angels who fly to the earth. Their wings disappear at the time of their birth. One look in their eyes and we’re never the same. They’re part of us now and that part has a name. That part is your heart and a bond that won’t sever. Our baby Cohyn is an angel and we love him forever.

~ Cohyn’s mother Trisha

Read more about the Jaskela family and Cohyn’s living legacy here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

– Karin McGinn, Sloan and Ryder’s mom

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

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