Laura’s Story

“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.

Cohyn’s Photo Gallery

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.

A cross-country runner, Irish dancer and self-described science nerd, Colette was just a normal 13-year old kid. But there was nothing normal about the pain she was experiencing in her stomach. Due to the pain and an accompanying virus, Colette visited her doctor. The doctor ordered scans which revealed a mass in her stomach.

Colette and her family were hopeful that the mango-sized tumour removed from her abdomen would test benign.

On July 24, 2014, Colette and her parents received the results.

Before the mass in her stomach was discovered, Colette loved to dance. She had been an Irish dancer since grade one. It was a major part of who she was. During surgery, the tumour was found to be wrapped around a femoral nerve, which meant they had to cut some of the nerve to remove the tumour. A 12-cm gap was left in her nervous system’s electrical circuit. Now, messages from her brain that tell her leg to move no longer get there.

Colette could no longer use her knee properly for walking, dancing, running or jumping. Once a cross-country runner, she was now using a walker just to move around a room.

But that wasn’t all that Colette was facing in those first days after surgery. Unfortunately, the tumour was not benign. Colette was diagnosed with synovial sarcoma.

“I didn’t know what to think, which I guess, begs the question: What do you think when you are first diagnosed with cancer? Maybe treatment options? At least something. Well, I thought of nothing. For the first time in my life, I drew a complete blank. I didn’t know what to think.”—Colette.

On the second day of her grade-9 school year, Colette had her first chemo treatment. She describes it as having the worst stomach flu, over and over again. She couldn’t attend school due to feeling ill or her compromised immune system. She began to feel isolated from her friends. Would she ever feel like a “normal teenager” again?

While on treatment, Colette was registered for a weekend camp at Kids Cancer Care’s Camp Kindle. Colette and her parents were nervous. Leaving home in Calgary, where she was visiting the hospital every other day, to head out to Camp Kindle in rural Alberta, was unnerving. But Camp Kindle is unique – the facilities are tailor made for kids on and off treatment. The ReKindle Clinic on site takes care of everything. Nurses ensure medications are double-checked. And Colette no longer felt isolated. “At camp, there is an unspoken understanding that brings everyone together. I could just be me, not the girl with cancer, because there, I wasn’t different.”

After multiple surgeries, chemotherapy and 28 days of radiation, Colette finished treatment in January 2015. Life will always be a little different for Colette. She has undergone nerve transfer surgery in the hopes of gaining some function in her quad, but for now, it is a waiting game and she is grateful for even the slightest improvements.

“I like to think that my doctors and surgeons saved my life and Kids Cancer Care helped put me back together,” says Colette. “Kids Cancer Care has been with me every step of the way”

Colette has experienced all Kids Cancer Care has to offer for kids affected by childhood cancer – she’s been a part of the Teen Leadership Program, PEER Program, and more.

Kids on treatment aren’t the only ones who feel isolated. Colette’s parents have also been on the Kids Cancer Care Dragon Boat Parent Team and to parent activities like yoga and cooking class, where they can meet parents who have been through the same worries, anguish and pressure.

“I’m setting my sights on new sports and experiences. Today, I feel like I am back to being a typical teenager,”—Colette.

But there’s more to Colette’s story.

Last summer, Colette was able to expand some research for a science fair she had done during her cancer battle and joined Kids Cancer Care researcher Dr. Aru Narendran in his lab as a Kids Cancer Care summer research student. Colette was able to see firsthand, research that may one day change the course of childhood cancer forever. Colette studied a unique new drug against three types of neuroblastoma and found that it inhibited growth in all three by stopping the action of a protein called EZH2, which is involved in blocking tumour suppressor genes. Colette’s findings seem to suggest that the drug may not only be inhibiting cancer growth; they may actually be inducing cellular death in the neuroblastoma cells. Another promising attribute of the drug is it doesn’t seem to attack regular cells, which could mean fewer side-effects for patients.

Colette’s life was greatly impacted by childhood cancer, but Colette has set her sights on being part of the quest for a cure. She plans to pursue a Bachelor of Health Sciences at the University of Calgary and follow that with post-graduate work in pediatric cancer research.

Colette believes that “one day with further research, cancer treatment will be less harsh or hopefully, someday, there may be no cancer at all!”

Mason’s journey began in December of 2013 when a large lump appeared on the right side of his neck. I will never forget how my stomach dropped when I saw this mass. It instantly scared me. I contacted my husband Diego at work, right away he could hear the fear in my voice so he dropped everything and we rushed Mason to the Children’s Hospital. They did a few tests, concluded it was simply an enlarged lymph node and sent us home with antibiotics. The next day, the hospital called with test results telling us he had strep throat, so they changed his antibiotics to something stronger. We thought this was a little odd as he had no strep throat symptoms, but we followed the doctor’s instructions.

The pharmacy had only half of the antibiotics we needed, so four days later we went back to pick up the rest. The pharmacist saw Mason’s lump, and alarmed at the mass, she first asked, “Is that what the antibiotics are for?” We nodded yes and she asked if it had gotten smaller. We responded, “No, it is getting a little bigger.” She directed us back to the hospital, because the antibiotics should have started to decrease the lump by then.

Back at emergency, we were told to finish the antibiotics as some take longer than others to take effect. We went home growing more and more anxious. That evening, Mason spiked a high fever and spent the night getting sick. In the morning, the lump was even bigger. We went back to the hospital for a third time that week wanting answers. Something was obviously wrong.

The medical staff at the hospital were stumped. All of Mason’s tests were coming back normal and he was feeling fine. We were referred to an ear, nose and throat specialist who eased our worry by telling us it was not the big bad ‘C’, but simply a swollen lymph node full of clear fluid. Because it was just before Christmas break, it was decided to re-evaluate the lump in the New Year. As we were putting our jackets on to leave, the doctor called us back into the room, offering to give us some peace of mind over the holidays. He offered to prove the lump was just clear fluid by putting a needle in the lump and extracting what was in the lump. So, four of us held Mason down. The needle went into his neck, and again but the doctor could not extract a thing. The room instantly went cold and tense. The doctor quietly walked me back to reception and gave us his fist appointment after the holiday break, while Diego snuggled with Mason, trying to calm him down.

Christmas was cautious. I know that may sound funny; we all tried hard to make the best of the holidays, but in the back of our minds we were terrified. That lump continued to grow and, as parents, you simply fear the worst.

January 8^th, 2014 we met with the ear, nose and throat specialist again. He took one look at Mason’s neck and said it had to be taken out ASAP.

Two days later, on the 10^th of January, Mason had the lump removed in day surgery, a procedure that felt like it took forever. At 2:41 pm we were asked to come into a little office where we were told they had performed a freeze screen test in the operating room and confirmed it was lymphoma cancer.

Mason was six that day in January. Telling a six-year-old he has cancer, what cancer is and what could possibly happen to him was an out of body experience for me. He’s six. How is this possible? He is only six. Our world spiraled out of control. The next eight hours were filled with meeting the oncology team, answering a lot of questions, hearing a lot of information I could not possibly understand and a lot of disbelief.

We were able to go home for a couple of days after that first surgery and before being admitted to the oncology unit. Mason had a lot of questions; we did our best to answer them. But mostly, we snuggled, cried and did our best to prepare for the battle ahead.

The next week, all the tests necessary to determine his complete diagnosis were done: bone marrow, CT scans, ultrasounds, X-rays, countless blood tests and a lymph node biopsy from a slightly larger node on the other side of his neck.

We finally received his complete diagnosis on Wednesday, January 16^th.  Mason had stage 4 Burkitt’s lymphoma. He tested positive for Burkitt’s on both sides of his neck and 5 per cent in his bone marrow. Of course, we jumped on the computer and googled Burkitt’s. Pictures for Burkitt’s are shocking. Researching what our son had and what the treatment might entail kept us up all night. We cried harder and longer that night than any other time; not our son, not our six-year-old baby.

The next morning brought a new determination; there were no options in this journey. We had to win. And with that determination, Team Mason was born. Our family of four, our extended family and our incredible friends all became part of that team.

Mason went through five rounds of extremely intense chemotherapy. Each round brought on different challenges, but Mason never ever quit. He didn’t want to do it for one more second, but he never quit. He was aMazing. He is the bravest person I know.

The Alberta Children’s Hospital is such an amazing place. Not a place any family wants to know well, but we are so lucky to have it here in Calgary. We met many incredible people on unit one: doctors, nurses, families, volunteers and organizations. Being on that unit was humbling to say the least. It really grounded us and made us realize how fortunate we really were. When we first arrived, we thought our world was crashing down; however, when we found out Mason’s complete diagnosis and treatment plan, we were certain Mason was going to beat his cancer. We met so many other families who did not know their future. I can not possibly imagine their fear and pain.

We spent 60 nights at the hospital in unit one. It became our home away from home.

On May 14th, we heard the magical words every oncology family dreams of hearing: “Mason is in remission.”  He then went through his last round of chemo, like a champ. He strolled into that unit, said “Hi” to all the ladies in the nurses’ station, walked into his room and started to set up his bed and room the way he likes it. Through that week, he showed everyone his magic tricks and told them all his jokes, something he never did in the previous rounds. He was in a good space and knew what to expect.

On May 21, 10 days before his seventh birthday, he had his broviac line removed. Forty eight hours later, he was able to lay down in a bath for the first time in months. He lay in that tub until the water went cold. I will never forget the look on his face that day. There was so much peace.

We have spent our days since then trying to find our new normal, finding joy in every day. Although that year was the worst year ever for us, we really are the lucky ones. Our family is whole and we count our blessings every day for that.

One of our normals includes being part of the Kids Cancer Care Foundation of Alberta, an organization we are so lucky to be part of. They include us in so many amazing activities and events, but the very best one of them all is Camp Kindle. This past summer our boys were able to go to camp again. Bennett and Mason LOVE camp. They meet kids who know exactly what life with, during, and after cancer is like. They meet lots of kids and quickly make life-long friends. They swim, hike, sing, laugh and have genuine fun.

Diego and I have also been to Camp Kindle ourselves, once for Family Camp and once for Survivor Day. What a magical place. The peaceful environment overtakes any stress or outside noise in your head. If you ever get a chance to visit, go. You’ll know exactly what I’m talking about.

Kids Cancer Care isn’t just about the delicious pizza they deliver every Wednesday on the unit at the hospital and camp though. This incredible organization has done so much for our family. They filled our freezer with delicious food when Mason was in treatment. They include families in so many awesome Kids Cancer Care events — theatre tickets, sporting events, going to the North Pole on the Polar Express, galas, even golf tournaments.

Meeting other families who have experienced a lot of what we have gone through is also something we truly cherish. We have become part of this incredible family none of us really wanted to join, but we all feel so lucky to be part of. Kids Cancer Care also always include siblings, which is so very important because brothers and sisters go through the horrors of the cancer journey too. They witness many things kids shouldn’t see. Bennett was with his little brother every step of the way, holding his hand and encouraging him every day. Bennett was Mason’s biggest fan. Mason is lucky to have such an amazing big brother.

Another reason we love Kids Cancer Care so much is that they continue to keep us part of the programs and activities even after treatment is over. They know that even when chemotherapy, radiation or transplants are done, our journey along the medical path is far from over.

Hopefully there will be a day in the near future when pediatric cancer is extinct, but until then, organizations like Kids Cancer Care need your support to help families like ours to find peace, joy and love again during and after the horrific diagnosis of childhood cancer. We truly don’t know where we would be without their incredible support system.

We will never be able to thank Kids Cancer Care enough, or be able to express how much gratitude we have for Kids Cancer Care. Thank you Kids Cancer Care for all you do for us and all of the families you take care of.

~Jennifer Rodriguez, Mason’s Mom