Gabriel Benun

401 Days

Gabriel Benun has had a long and fierce fight with cancer. He was diagnosed at six months with an aggressive form of infantile leukemia with a 35 per cent survival prognosis. He underwent an aggressive and painful treatment including six months in-patient as well as ICU admission, only to relapse 99 days from end of treatment. As a result of his relapse, Gabriel’s prognosis for survival was lowered to 15%. He then had to be hospitalized for another eight months and endure more intensive chemotherapy followed by radiation before undergoing a bone mGabriel Benunarrow transplant at 2.5 years old. During those months Gabriel suffered a serious deterioration in his health and was also isolated for a lengthy period of time. Gabriel’s ordeal had life altering implications for his siblings Libby and Jonah (three and five years old respectively at the time of diagnosis). Both were split from their baby brother for a long period of time, as well as from their parents, who spent most of their time at the hospital caring for Gabriel. Eventually, it was Gabriel’s big brother Jonah’s bone marrow that was a match and saved his life. He spent 401 days of his life living in the hospital and is now one year post transplant – still managing many long-term side effects, but happy to be home.

 

 

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Reid’s Legacy: The Ewing Cancer Foundation of Canada

reid-and-momNever heard of Ewing sarcoma? Be grateful. It is a cancer of the bone and soft tissue, affecting mostly kids and young adults but can strike anyone, anywhere in the body, at any age. Researchers pinpointed a chromosomal translocation as the cause. Ewing sarcoma is not hereditary, cannot be prevented and there is no screening.

It is simply a “bad luck” cancer. Diagnosis has proven very difficult and is all too often mistaken for growing pains or sports injuries. Survival rates plummet once this deadly, aggressive cancer spreads.

Reid was 17 years old in 2005 when he was diagnosed with Ewing sarcoma. He endured ankle pain for a number of years plus many doctor visits before the cause was found. The pain worsened over time and eventually tumours were discovered in his ankle, sinus cavity, rib cavity and pelvis.

We were waiting for the next sentence, ‘but there’s a cure. That sentence never came. After diagnosis, we were astonished at the lack of support groups and the short supply of research dedicated to Ewing sarcoma. Both of us knew that had to change – a seed was sown.

Reid dreamed of becoming a pilot in the Royal Canadian Air Force and was in the application process when he lost his battle with Ewing sarcoma on Nov. 25, 2007 at the age of 19, but not before realizing his dream of becoming a pilot, made possible through his job at the Buttonville Municipal Airport in Markham, ON.

Reid’s story and passion for aviation touched so many, including Loretta Lau-Lowerison, who worked with him at Buttonville. During his funeral, she and her husband, Ryan, performed a flyover at the cemetery in their Cessna, tipping their wings as Reid was laid to rest – a moment no one in attendance will ever forget.buttonville-truck-reid

Though I had no background in health care, I decided to start the Ewing Cancer Foundation of Canada with Reid before he died. Less than 5 years later, with more than a quarter million dollars raised, the Ewings Cancer Foundation of Canada is a registered charitable organization. Of late, we co-funded a Canadian research project whose recent remarkable findings were published in Cancer Cell, a distinguished medical report highlighting exceptional, significant cancer discoveries. We are now busy co-funding a second and third grant to Canadian researchers. Doctors have told us these funds are badly needed because there are very few labs in North America that are dedicated to researching Ewing sarcoma.

For me, this isn’t just a story about a rare cancer, but about the huge community of survivors and parents who have lost their children, many of whom are taking on the medical establishment themselves and achieving great results. We are educating not only the general public but also family doctors and other front line health professionals. We have produced an informational pamphlet that is bound for every family physician’s office in Canada, in hopes they will consider Ewing sarcoma as the cause of unexplained pain, hastening a diagnosis and preventing unnecessary death.

Reid’s legacy lives on, one I’m certain he would be proud of. He’d be thrilled to know Ewing sarcoma research is actually happening now, right here in Canada. He dreamt of serving this country in the RCAF and would have been so proud we are at the forefront of Ewing sarcoma research, treatment and, someday, a cure. He was a true Canadian and an inspiration to many.

More information on the ECFC or our signature fundraiser, Rally For The Cure, can be found at www.ewingscancer.ca or www.rallyforthecure.ca
– Tina Pernica

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Creating a Happy Home for my Child with Cancer

In 2014, both my husband and I were working long hours at high pressure jobs. It seemed as though our daughter Selena was spending more time with her nanny and grandparents than with us, and she was having behavioural problems at daycare. We made the decision that Selena needed more “mom time,” so I took a leave of absence from my job in women’s nursing apparel and I started working part-time at a restaurant. It paid off: Selena’s behaviour changed 180 degrees in that first year. She was happy and well-adjusted, and I got the opportunity to really know my kid in a way I hadn’t before.

 

So when our healthy child who never had so much as a cold said, “Mummy, I have a tummy ache,” we didn’t just blow it off like we might have the year before. We immediately took her to a walk-in clinic. The doctor pressed down on her stomach and noticed her liver was swollen. Although he attributed it to an infection, he was still curious so he made a requisition for an ultrasound. And for that, I will forever be grateful.

 

Selena’s stomach ache went away and she didn’t have a single symptom after that. If not for that ultrasound, they would never have detected a mass or ordered the blood work and CT scan that determined it was cancer. Selena was diagnosed with the worst type of Wilm’s tumour; we were told to get ready for a bumpy road.

 

Her protocol was experimental and based on yet-unpublished research out of the United States.

Step 1 – Removal of her kidney and tumour

Step 2 – 13 rounds of radiation

Step 3 – 12 cycles of aggressive chemotherapy

 

Selena’s treatment completely wiped out her bone marrow and she was in semi-isolation for nine months. It was challenging. She couldn’t go to daycare, birthday parties or even the shopping centre. We decided to make home the best possible environment we could and we celebrated everything, from a single poke to the end of a round of chemo. We had a party every weekend with cake and lots of family (screened for even the slightest cold symptom) and the days were joyous and filled with laughter.

 

This last year was challenging in other ways. I quit my part-time job and managed all of Selena’s medical care. I had already taken a serious pay cut to be home and now I had zero pay, no employment insurance or benefits, and our expenses were rising. My husband worked extra odd jobs so we could get by and our Interlink Nurse* from the Pediatric Oncology Group of Ontario connected us to every resource we were eligible for, including their Financial Assistance Program.

 

And now Selena’s treatment is over and she is doing so well. She is excited to start school; I am thankful that I get to return to the same job after being away for two years; and my husband and I are determined to get back on track financially. It will be hard to return to “business as usual.” You get attached to the reality you are in. There is so much readjustment after cancer, but we are looking forward to this next stage in our lives.

– Natasha Koss

 

WATCH SELENA’S STORY: Creating a Happy Home When Your Child has Cancer @ www.pogo.ca/programs-support/inspiring-stories/

 

*POGO Interlink Nurses play an important role between hospital visits. They provide excellent nursing support to the family and they work with schools to help them understand the needs of the young cancer patient.

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Ayverie’s Amazing Attitude

 

In January of 2013, my seven-year-old daughter Ayverie started to show signs of a typical flu— vomiting, headaches, fevers and dizziness. After weeks of back and forth between doctors, specialists and the hospital, a five-centimeter mass was discovered on Ayverie’s brain stem. This was medulloblastoma (brain cancer) and she had just turned eight. She was rushed by ambulance to McMaster Children’s Hospital, and straight to the Pediatric Intensive Care Unit, with brain surgery performed the following day. I came with Ayverie in the ambulance to McMaster Children’s Hospital with nothing except the work clothes I was wearing. Since then, she and I have celebrated birthdays, Easter, Thanksgiving, Halloween, Christmas and New Years’ admitted and isolated on the oncology ward. Over the next years, Ayverie would take on the biggest challenge of her young life—to beat cancer! She had to undergo radiation therapy, chemotherapy, surgeries, cyber-knife radiation, rehabilitation, many tests, hospital visits and stays. Ayverie relapsed September 11, 2015 and is now in remission.November 20, 2016 will mark one year! Ayverie is now 11 years old and she’s beat cancer twice. Ayverie has always approached cancer with grace, humor and maybe a little yelling and screaming! We looked at cancer like this:

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You lose your hair

But you can finally feel the breeze

No more thick and annoying curly hair

 

You lose your hair

Embrace the fashion opportunity!

Accessorize!

Find matching scarves, head bands and hats for every outfit. Even sleep hats to match pajamas.

 

You lose your hair

Wig it! Get a wig of long straight dark hair. Hair you will never have, so wig the head

You lose your hair

Bald head fashion opportunities are endless

Glitter-tattoo your bald scalp!!

 

You get a feeding tube

Embrace another fashion opportunity

Another opportunity to accessorize!

Make little purses to tuck dangling feeding tubes into

 

You throw up! A LOT!!!

Enjoy what you eat

Eat what you want because it’s coming up anyways, so enjoy the taste going down

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ME AND MY TWIN: The Unmistakable Effects of Childhood Cancer

Until the age of 11, most people could not tell me apart from my identical twin brother, Ben; we had the same friends, performed the same at school, and we have always had similar interests and tastes.

At that age, I had heard of cancer, but I didn’t think kids could get it.

My official diagnosis was acute myelogenous leukemia and the doctors said that my best chance of survival was with chemotherapy, total body radiation and a bone marrow transplant. My odds were still only 55%. I actually had two unsuccessful bone marrow transplants before they tried an experimental treatment called lymphocyte donor transfusion. I have now been in remission for over 16 years.

Because of all of my time in and out of the hospital, I missed the majority of grades 6 through 8. Before I entered high school, I had to take a test to see if I met the basic requirements; I barely passed. The amount of school I missed, combined with the radiation to my brain, had set me back academically. They placed me in the special education class with a reduced course load and extra time to write tests.

A few months into grade 9, I developed cataracts, and due to my loss in vision I had to really struggle to complete assignments. Soon it became so bad I had to wait for my brother after school just so he could guide me to our bus!

I ended up spending two extra years in high school, and it felt like I was being left behind by my friends and my brother. It was like I was stuck in time, which was made worse by my physical developments, or lack thereof. While my brother continued to have growth spurt after growth spurt, I slowly grew a few inches at a time and stopped growing once I hit 5’3 and 100 lbs. My brother stands at 6’1 and 200 lbs. And although my stunted growth did not affect me academically, it greatly lowered my self-confidence.

Now I have two degrees, with honours, and I am looking for a job in public administration. Even after this incredible achievement, I still had doubts. I wasn’t getting called for any job I applied for and for a while I felt like I was unqualified for anything. At my lowest point, I reached out for help during my yearly checkup and was referred to Lucie, my Pediatric Oncology Group of Ontario counsellor. With her support, I have been able to upgrade my skills, identify and apply for appropriate jobs and even get called in for interviews. My confidence has skyrocketed.

As a result of these efforts, I recently was hired by POGO as the Administrative Assistant to Conferences, Educational Events, and POGO’s financial assistance to families’ program. Boosted by this success, I will continue to build my skills and professional experience and work toward fulfilling my career goals.

 

– Jamie Irvine

 

WATCH JAMIE’S STORY at www.pogo.ca/programs-support/inspiring-stories/

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Maddie’s Gratitude

It all started in 2013 with extreme pain in my back and knees. What I thought was just an injury from playing volleyball turned out to be a tumour in my abdomen. The tumour was massive. It was 20 by 10 cm—about the size of a cantaloupe. I was 15 and had to quickly come to terms with the fact that, not only was I dealing with cancer; I was carrying around a 15-pound tumour in my abdomen that I hadn’t even noticed growing.

 

Neuroblastoma, a type of cancer that forms in nerve tissue. In the beginning, I had no clue what neuroblastoma is but, over the past three years, I’ve learned all about that and more.

 

My doctors at the Alberta Children’s Hospital had to come up with a plan of attack and that meant I had to go through four rounds of chemotherapy. But after four rounds of chemo, the tumour still wasn’t shrinking. That was bad news.

 

Fortunately, surgery was still an option. But the tumour was wrapped around my aorta, so that was extremely bad news.

 

But my surgeons fought for me and they didn’t give up. They put their heads together and decided they would try surgery in the hopes of getting as much of the tumour as possible—even if that meant removing only a portion of it.

 

I honestly can’t imagine how they felt going into surgery that day. I mean, I was gonna’ sleep through the whole thing. They had the hard part.

 

Well, if you can believe it, after 14 hours, my amazing surgery team was able to get the whole thing!! Imagine the skills and patience it took to do that. No one could believe they got the entire tumour. It was incredible news and a TOTAL game-changer!

 

Before surgery, I had asked them to take pictures of my tumour for me. And they did! Not like a selfie or anything. I can assure you it was all very professional.

 

Following surgery, I had to spend five days in ICU. Believe it or not, one of the hardest parts of my entire treatment was lying in bed with a breathing tube down my throat and not being able to talk for FOUR days! It was agony. It was the quietest I have ever been!

 

Even though, today, my cancer is gone and I am cured, I made friends who didn’t survive. And, that is why supporting pediatric cancer research through organizations like Kids Cancer Care is so important. It’s about saving EVERY kid. And making sure they survive with fewer side-effects from the very treatments that saved them.

 

So I survived cancer and people call me brave. I guess so. But imagine how daunting it must have been for my surgeons to go into that operating room. Imagine the skill it took to take out the entire tumour and not damage my aorta.

 

Imagine the pressure.

 

And the surgery is successful! But their job’s not done. Now, they have to ask me if they can have my tumour for research—to help other kids.

 

They did ask me. And I have to be honest. I hesitated, just for a moment, only because I kinda’ wanted to keep it myself. Like maybe get a shadow box for it and keep it in my room. That might have been cool. But then I realized my tumour would do more good in the hands of world-class researchers, so of course, I said they could have it.

 

I was given the opportunity to visit my surgeon Dr. Paul Beaudry in his research lab. He is studying my tumour to invent new treatments that will help kids like me in the future.

 

Dr. Beaudry is what they call a clinician-researcher and is part of the Experimental and Applied Therapeutics research initiative, which Kids Cancer Care helps fund, at the Alberta Children’s Hospital Research Institute and the University of Calgary.

 

What’s cool is that what he learns from my tumour can be applied by cancer researchers, not just here in Calgary, but all over the world.

 

So basically my tumour is famous!

 

In all seriousness, these amazing people helped me. They accomplished the near impossible and they gave me my life back. I am alive today because of medical research and modern health care.

 

But it’s not only through research and hospital programs that Kids Cancer Care helps kids like me.

 

Since surgery, I have been recovering and getting back to doing the things I love to do. I’ve have had to alter my life in more ways than one since my diagnosis. I stopped playing volleyball, which I never thought I would have to do, but that missing piece from my life has now been replaced with things like going to Camp Kindle!

 

I was told all about camp while going through treatment. Every time I went to the hospital, my nurses would tell me: “You have to try it! At least go for one weekend and give it a go.” I was very hesitant to go, though, because I would know no one.

 

I finally decided I would go to Teen Camp and try it out. My mom signed me up and next thing I knew I was on a school bus heading out to Camp Kindle. Everyone had friends; they were all really close and I didn’t know anyone. Not knowing anyone at camp is like walking into school as the new kid. But soon enough I was a part of everything going on. They made me feel as if I had been going to camp for a long time! It’s hard to express exactly how they made me feel included or what they did to make me feel welcome, but they just did. Everyone is so kind and cares about each other. There isn’t one thing they did to make me feel a part of camp; it was the many little things throughout the weekend, like hanging out with me, sharing stories, laughing, showing me around and sharing camp traditions with me. By the end of that weekend I didn’t even want to go home!

 

Since that first weekend of camp I have continued to go! I have met so many amazing people who I have stayed connected with outside of camp too. These people mean so much to me, because we can connect in a way that I am not able to with other friends. We have all been through similar situations and we have all changed because of it. I can tell my friends from camp anything and I know that, no matter what, they won’t judge me. Even if I do something really funny and embarrass myself because I’m good at that. I know they are there for me. They all have such big hearts, great personalities. They are hilarious and that is only the beginning of the long list of things they are. I can’t imagine my life without them anymore because they mean so much to me.

 

I am so thankful for the opportunity to go to camp because it is a place where cancer doesn’t define me. I can just go and be with people who are now my best friends. Camp Kindle is a place where you can feel comfortable and you are able to forget about what is going on and just have fun! It doesn’t matter what stage of your cancer journey you’re in, you are always welcome and accepted no matter what! It doesn’t matter if your family can’t afford it because you don’t have to pay for it, which is all thanks to people in the community who raise money, so kids like me can go to camp.

 

Camp also opens up so many doors for everyone and it has opened many doors for me. For instance, the Teen Leadership Program, where we volunteer at many events such as Kids Cancer Care’s Dad and Daughter Gala and Parents’ Quest for a Cure gala. I’ve been involved in Teen Leadership for the two years. We get to work on our fundraising skills and raise funds to travel over spring break to help impoverished communities in developing nations. I have been incredibly lucky to have gone to El Salvador on spring break of 2015 and the Dominican Republic this past spring break. These trips are so eye-opening and have made me grow so much. They are such an amazing experience and I am beyond lucky to have been able to participate on them.

 

It’s not only through research and camp that Kids Cancer Care helps families like mine.

For starters, the PEER. This is an exercise and physiotherapy program for childhood cancer patients that helps us regain our strength and get back to doing the things we love. Through their Cooking and Caring program, Kids Cancer Care also delivered home-cooked meals to our family, so my mom didn’t have to worry about cooking for a while. Imagine a freezer full of food. That was us. And I was fortunate enough to receive a scholarship from Kids Cancer Care in June 2016, so I can further my education and achieve my goal of becoming a psychologist. I started university this fall.

 

Being part of Kids Cancer Care and everyone involved is truly an amazing community to be part of. They all support you and make sure you are doing well in a hard time—and even AFTER the hard time.

 

We should all be grateful to be a part of a community that gives us a sense of warmth. It makes everyone’s journey so much easier to deal with and NO one is EVER alone.

 

Kids Cancer Care is a big family and we all have one common end goal—to make sure everyone has a sense of belonging when going through cancer. I don’t know what I would do without Kids Cancer Care because they have done so much for my family and opened so many doors for me.

 

When I was sick, there were fundraisers held in my honour, but that’s because people knew me and knew about my cancer journey. They were my friends and family.

 

The fact that people in the community choose to help kids like me, doctors and researchers by supporting Kids Cancer Care—so many people you don’t even know—means so much to me. It’s truly amazing. I can’t thank you enough.

 

Thank you!

 

Maddie

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Remembering Jason

This is the story of my sweet nine year old boy Jason Conrad Mejia –Jason to his friends but to mom and dad, he was JC.

On August 27, 2015, doctors at Sick Kids diagnosed Jason with stage four metastatic clear cell sarcoma of the soft tissue, bones and lungs. Our world was turned upside down.

The battle began a day after the diagnosis. He was given 3-6 months to live but our family could not accept that. We did everything we could, hoping for more time with him or a miracle cure. The doctors’ advice was taken, treatment protocols were followed and prayers were offered constantly. He passed away June 17, 2016. My husband and I, Jason’s twin brother and his younger sister miss him dearly.image1-3

My son was smart and creative, especially with painting. He loved to read books and work on puzzles. His favourite outdoor activities were swimming, playing tennis, squash and camping in tents.

When he was in the hospital, he mastered video games on his iPad. Friends started calling him the King of Clash Royale because no one could beat him.

Jason was very loving, caring and thoughtful not only to us and to his siblings but to all who knew him. Everyone said he was so mature for a nine year old. He was such a trooper with all the needles, CT scans, x-rays, ultrasounds, biopsies, and bone scans.  He handled his sickness calmly, with bravery and grace.

When my husband and I renewed our vows after 13 years of marriage, Jason acted as our ring bearer.  We are so grateful that he also had the chance to go Disney World and on a Disney cruise.

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A Sippy Cup of Chemo

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Our son, Shawn, was diagnosed with a brain tumour called an ependymoma at 16 months of age. He had been sleepless and irritable and after four different doctor visits over a month’s time, we finally received a diagnosis. Shawn was rushed to SickKids Hospital where he had surgery the next day. The surgery removed 99% of the golf ball-sized tumour and relieved the pressure of fluid that had built up in his brain. Once Shawn was out of intensive care, a few weeks later, he started 33 rounds of radiation. We lived a few hours away from the hospital so I stayed with Shawn and my husband stayed at home with our three-year-old daughter.

When a child is diagnosed with cancer it affects so many aspects of a family. Not only were we devastated that Shawn has such a serious illness but we were hit with what was called our new ‘normal’. Living apart for days and weeks on end. Our daughter not quite understanding what was going on. The stress on our finances as I could no longer work. It is a whirlwind of change, worry and upheaval.

After four months, we were able to move back home and live all together as a family. Shawn was doing well and learned to walk and talk once again. However, during a routine MRI we learned that Shawn had what’s called a goose neck. A small piece of vertebrae had been removed during the initial surgery and now his body was not compensating for its loss. He underwent a bone graft where bone from his hip was harvested and then grafted to his spine. He wore a body cast for four months while his body healed.  You would think that he would have hated the cast but, like all these kids faced with such adversity, he smiled through it and figured out ways to get around anyway!

The cast was removed in January and Shawn learned to run around again and was a happy little guy once again. We participated in a fundraising event called Meagan’s Walk where thousands of people encircle SickKids in a gigantic human hug. It was an amazing experience to be part of that day alongside families who had similar experiences to ours.

We were on our way to being a ‘normal’ family again, or so we thought.

In May, almost a year since his initial diagnosis, we learned that Shawn’s tumour had come back and in fact he had two more down his spine. We tried two months of experimental chemo but to no avail. The tumours were growing at an alarming rate. There was nothing that could be done. We enjoyed the summer as much as we could and then watched as Shawn lost one ability after the next and eventually passed away on October 1, 2007, just before his third birthday.
mckechniesippycup-front-coverSince then I have written a book called ‘A Sippy Cup of Chemo’. I wanted to not only share our story so there was a little piece of Shawn out there in the world but also wanted to help other families travelling down the same path. Going through a devastating illness with your child and then grieving through the loss of them is not something that many can relate to.  I wanted to provide an insight into our journey for other bereaved parents who needed to know that they are not alone.

My book is available for purchase on Amazon. All proceeds go to a non-profit organization called Meagan’s Walk, benefiting brain tumour research at SickKids. https://www.amazon.ca/Sippy-Cup-Chemo-Familys-Childhood-ebook/dp/B01AKWPQW4/ref=sr_1_sc_1?ie=UTF8&qid=1473710705&sr=8-1-spell&keywords=a+sippy+cup+of+cehmo

– Sue McKechnie (Shawn’s Mom)

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Noah’s Blue Ribbon Brigade

In January 2012, our son Noah was diagnosed with Ewing sarcoma, a rare bone cancer. At eleven years old, he was given a 50% chance of long term survival. He bravely underwent grueling treatment for nine months and then eagerly jumped back into life.  He had a zest for life and a mischievous spirit, with a sharp, cutting wit. Confident in his own opinions, he never followed the crowd and was known for his forthrightness.  Although he loved most sports, his two great passions were hockey and baseball.

After one year of remission, we were devastated to learn the cancer had metastasized to his lung; we were fully aware that his odds of long term survival were dismal now that he had relapsed so soon after initial treatment.  He endured a second round of treatment. The cancer responded but returned when treatment stopped.  By August 2014, he had run out of options. Noah entered a last resort drug trial only to relapse again. He never gave up hope.  Noah Scott Llewellyn took his last breath at home on December 7, 2014 but cancer never crushed his spirit.

We were devastated by his loss; the unimaginable had happened. Our community rallied behind us and soon a dear friend devised a loving campaign of remembrance that is still honored today, almost two years later.  All around our community, trees adorned with blue ribbons can be found honoring the memory of our courageous boy (blue was his favorite color).  Thus began “Noah’s Blue Ribbon Brigade”.

Along this lonely journey, I connected with the amazing families who run the Ewing Cancer Foundation of Canada (ECFC) who offered unconditional support and inspired me to tell Noah’s story.  A longer version of Noah’s journey may be found on the ECFC site at http://www.ewingscancer.ca/Noah.html .

In May 2015, I was inspired to create a Facebook page to spread awareness for childhood cancer and share my grief.  In doing so I discovered a love of writing and the cathartic effect it has provided.  Some of my recent articles can be found on The Mighty.  Amazingly, two of these articles were picked up by the Huffington Post and Womans World; they can be found at http://www.huffingtonpost.com/entry/the-phrase-thats-hurtful-for-me-to-hear-as-a-mom-who_us_57978e80e4b0e339c23fa5d5 and http://www.womansworld.com/posts/searching-for-meaning-after-the-death-of-her-14-year-old-son-mom-spots-something-stunning-on-the-ground-108479 respectively.  I am currently working on a book of short stories detailing signs that we have received since Noah’s death.

Noah’s courage and spirit have inspired others to help in the fight to end childhood cancer.  Several memorial dedications include the Noah Llewellyn Ball Hockey Tournament, the LWF Baseball Association 2015 season dedication and the BDMHA Noah Llewellyn Annual Christmas Tournament.

A significant donation to Ewing sarcoma specific research was also inspired by Noah’s story and his friends and schoolmates raised $3,300 for the IWK Children’s Hospital and cancer research through various fund raising initiatives!  His friendships spanned athletes, musicians, gamers and academics. One quote in particular sticks out to me from a note we received after his death.  The father noted he had asked his child if he knew Noah and the child’s response warmed my heart, “Everyone knows Noah; he was everybody’s friend.”

Finally, Georges P. Vanier Junior High dedicated their library to Noah in early 2015.  In the “Llewellyn Library” hangs a picture of Noah bearing his friend’s dedication: “Noah was an amazing guy: always brave and positive. He refused to give up, he lived every day to its fullest, and he inspired us all to become better people”.

And he’s still inspiring us, every single day. Because even though he never had a chance, he never gave up…and neither will we!

– Dawn Williams (Noah’s mom)

Follow this journey on http://www.facebook.com/Noahsblueribbonbrigade .

 

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Harmony’s Story

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On September 1st, 2015, we welcomed Harmony, our third child, into the world. Ten fingers, ten toes, she was absolutely perfect.

We did notice a small bump, just under the skin next to her left eye. Concerned, I asked our pediatrician and he assured me it was a tiny cyst, very common and nothing to worry about. Reassured that it would disappear as she grew, I stopped worrying and continued to enjoy our beautiful angel.

In mid-December, I noticed this tiny bump that I did not need to worry about had started to become very noticeable – red, angry and enlarged. Our pediatrician immediately sent us to the hospital for an ultrasound. We were told it was a dermoid cyst that had become infected. One week before Christmas, Harmony was admitted to the hospital to receive IV antibiotics. Three days later, we were home with an oral antibiotic and assurance that it should get better soon. But instead, it worsened, growing larger.

Another ultrasound. A very long wait. The doctors told us it was not a cyst but a solid mass. Harmony would need a biopsy and would have to travel to London for this procedure.

Now the size of a ping pong ball, the mass was pulling on her eye. She was examined by a team of doctors in London and, after what seemed like an eternity, we were told it was a tumour. The biopsy would determine if it was malignant and if Harmony would need to start chemotherapy right away.

I felt like I had been kicked in the stomach. I couldn’t breathe. I broke down in tears. This was the furthest thing from my mind. She is only a baby.

Everything moved very quickly. We were admitted and by the evening of the following day knew that the tumour was malignant but they didn’t know yet what kind of cancer it was. Four days later, our oncologist called and said she had the preliminary results.

On January 13th, 2016, we took the longest drive of our lives back to London to meet with her oncologist, Dr. Cairney.  I sat on a couch next to my husband, holding Harmony in my arms, with my mom and dad and our social worker there for support. The doctor told us the most devastating news I have ever received in my life:  my sweet baby girl had a Rhabdoid tumour, a rare aggressive cancer with a low survival rate.

I started to cry inconsolably, holding onto Harmony so tight, wishing this was all just a nightmare and I was going to wake up. But this was my reality and, at that moment, I became the mother of child with cancer.

This journey has had many ups and downs, tears and fears, but through it all I have had to be strong for Harmony, to be her voice. This little girl has been through more than most people go through in a lifetime. She has endured countless procedures, pokes and prods, blood and platelet transfusions and nine rounds of chemo, with the heartbreaking side effects. I watched as her tiny body became so fragile I feared she would break, her beautiful thick hair falling out in a matter of days, counting down to three eyelashes before they were completely gone.

Harmony, the angel that she is, always manages to smile through it all. That is what keeps me going. She is my hero!

This journey has taught me not to take anything for granted.  It’s shown me how incredible our family and friends are; the amount of support we have is tremendous. It’s brought amazing new people into our lives, people who have become part of our family.

I was overwhelmed by the support that is given outside of family, not only financially but emotionally as well. The organizations that are helping families like ours cope with childhood cancer are incredible: Childcan, POGO, RMH, the amazing hospitals and teams of doctors and nurses that go above and beyond for my angel!

It has been a very long six months. This disease has affected so many people; it shows no mercy. Harmony’s journey is not over yet. In May, she received a stem cell transplant and, for now, completed treatment. We have weekly follow ups. We hope and pray that all will be clear and stay that way and, one day soon, we can say she beat cancer. She’s not a statistic; she’s a survivor!