Childhood Cancer Awareness Month: Chai Warrior Stories

Childhood Cancer Awareness Month:
Chai Warrior Stories

We have supported and loved many children and their families who have taken on warrior status in their battle against cancer. September is Childhood Cancer Awareness Month and we’ve been sharing the stories of our paediatric cancer warriors on our social media channels all month. While each baby, child and teen have a unique story and perspective, they also have quite a lot in common – personal strength and resilience, support and love from family and a community of care that includes physicians, nurses, therapists and us.

These are their stories.

Corey

As told by his mother, Jennifer

On June 18, 2018, we received a phone call that would change our lives forever. What was thought to be a simple cyst on our 15 year old son Corey’s scalp, turned out to be anaplastic large cell lymphoma, a rare type of non-Hodgkin’s lymphoma that had spread into his chest and abdomen. The amazing team at SickKids jumped into action, and Corey underwent 6 rounds of inpatient chemotherapy from June to November 2018.

Corey’s positive attitude played a huge role for our whole family during this time. He tried his best to continue on with as normal a life as possible – practicing with his hockey team, attending school when he wasn’t in hospital, learning how to drive, and playing a lot of Fortnite. He showed us very early on that cancer was not going to slow him down.

This journey was not without its challenges but

with the support of our family and friends, as well as organizations such as Chai Lifeline, POGO and Children’s Wish, we came through the other side with a sense of strength and perseverance we wouldn’t otherwise have had.

Corey has been in remission since November 2018. He graduated high school in June and will be attending Western University to study mathematics in the fall.

Gabe

As told by his father, Asaph.

When Gabriel was 6 months old our world turned upside down. We were devastated to learn he had a rare and particularly dangerous blood cancer. At the fragile age where babies learn to sit upright and babble, Gabriel had to endure aggressive treatment that would last for two years. Being a baby meant that Gabriel could not express his needs in words. He could not advocate. He didn’t know why he was getting all of the punishing and painful treatment.

But, through it all – whenever he could – he gave a smile that would push everyone around him through. Unfortunately, close to the end of his treatment the cancer returned and Gabriel had to undergo a bone marrow transplant.

401 days of inpatient ended when Gabriel came back home when he was 3. He was small, underdeveloped, covered with scars and physically weak.

On his path to a cure and healing Gabriel was not alone. He was supported by his parents and siblings who tried in every way imaginable to unload some of the burden. His older brother who was very young gave him his bone marrow and his sister kept him company during the lonely periods of isolation.

Gabriel is now eight years old. He is much better. He is a bright and funny kid. He is still facing the many long-terms side effects of his treatment – and still he is not alone. Surrounded by his family and cheerleaders he is supported by Chai Lifeline. We are blessed.

Amanda

In her own words.

My name is Amanda Kauffman and I just turned 20 and am entering my second year at Queen’s University.

Two days before my 17th birthday, I was diagnosed with Stage 4 Diffuse Large B Cell, Non-Hodgkins lymphoma. I was immediately admitted to

SickKids hospital in Toronto and spent almost six months there undergoing treatment, fighting this horrible disease.

Prior to my diagnosis, I was a normal and very healthy teenager. In fact, I was an elite level athlete, participating on the Canadian junior national synchronized skating team which represented Canada internationally and at the junior world championships. One of the most difficult things for me to accept was that my cancer diagnosis meant I could not skate and train with my team. While my friends were completing their grade 12 year and worrying about which university to attend, I was fighting for my life. While my teammates spent hours practicing skills and routines, I was lying in a hospital bed barely able to move.

While this was an incredibly difficult time in my life, I am grateful for the unwavering support that I received and love that I was surrounded with. Family, friends and the community at large came together to lift my spirits and organizations like Chai Lifeline were central in the effort to enhance the patient experience.

I can proudly and gratefully share that I am officially in remission, cancer-free and thriving.

I am committed to giving back to organizations like Chai Lifeline where my siblings and I have volunteered as big brothers/sisters and have donated hair for wigs. I will continue make meaningful contributions to the world- one being in my pursuit of a career as a physician in hopes of working at SickKids hospital.

Elijah

As told by his mother, Emma.

In June 2019 our 14-year-old son was diagnosed with an unknown type of cancer. As his condition deteriorated, we waited anxiously for the biopsy results. At the end of July we learned he had Stage 4 Ewing’s Sarcoma. After 10 months of treatment with both chemo and radiation, as of the end of May 2020 we learned he is in remission.

The year was traumatic and emotionally devastating to our family. We are now coping with the emotional aftermath as we gear up for frequent follow-up appointments.

Matters were even more complicated by the COVID19 outbreak. But we received a lot of support through our local community, the oncology staff at Sick Kids and Princess Margaret Hospital and numerous other support agencies such as Chai Lifeline and WeFundCare, to whom we are very grateful. We are currently adjusting to the new normal, such as it is these days.

Ethan

As told by his mother, Cindi.

September is Childhood Cancer Awareness Month – a time to highlight the horrible disease that changed our lives in an instant.

This time last year my sweet Ethan was in the hospital getting chemotherapy to battle his cancer. I try to blur out last year and all that has happened to my Sweet Ethan.

January 14^th, the first time we heard the scary words that my son has brain cancer which spread to his spine. The floor beneath me crumbled. He was rushed into an 8-hour brain surgery, followed by 3 more head surgeries, one of which was to put in his permanent shunt, a port surgery, 30 high dose proton radiation treatments at St. Judes Children’s Hospital, a clinical trial to save his life, 7 months of chemo therapy, 2 more port surgeries ,pic line and an infection in his head which ended in another surgery.

Almost 13 months of treatment all together.

It was the hardest times of our lives. The fear of it coming back is always lurking in the back of my mind. Every three months Ethan gets an MRI of his brain and spine and a lumbar puncture to monitor him. Thank god he has no evidence of disease.

But this isn’t just about Sweet Ethan this is about all the parents being told right at this very second that there precious child has cancer, the child fighting in the hospital, the parent praying while their child is in remission, the children taken to soon by this ugly disease, the beautiful angels and the children making memories.

It’s time to highlight and support this cause. We need more funding, kinder treatments, more research, we need a cure now. So grateful for the support along the way from Chai Lifeline. Always there with a smile, kind words and support. This month I will be raising awareness through my Facebook page because kids get cancer too, not all ribbons are pink, there are gold ribbons too.

Jess

In her own words.

I was diagnosed with an inoperable brain stem astrocytoma, a type of brain cancer in November of 2013. I was 10 years old.

I went through months of chemotherapy, which failed to shrink my tumour. My only chance of survival was to have my inoperable tumour operated on. It was an incredibly risky surgery, given the location and nature of my tumour. After an 8+ hour surgery, my amazing neurosurgeon was able to debunk most of the tumour.

That was 6 years ago…I am now 17 and off chemo, but still living with a brain tumour that is deemed chronic and the challenges that come with it. I go to the hospital regularly for appointments and MRI scans to make sure my tumour is stable, to confirm I’m able to continue without chemotherapy.

I am now going into my last year of high school, and I continue to fiercely advocate for childhood cancer. Throughout my whole journey, Chai Lifeline was always by my side, whether at home, in clinic or in my hospital room. I always say, the doctors saved my life, but Chai Lifeline saved my childhood.

Sammy

In her own words.

My name is Sammy Belitzky and I am 17 years old. In 2017 I was diagnosed with a rare form of cancer.

As hard as my cancer journey was, I am proud to be a survivor in hopes to share my story for those who are struggling, will struggle or have lost their battle.

Cancer is only going to be a chapter in my life, not my whole story but will shape the life I live from this day on. Beauty to me is no longer defined by my looks, my hair or my massive scars but rather by the strength I have, the person I am and the beautiful family, friends and strangers I am lucky enough to be surrounded by. This is something that has truly taken me a long time to believe. My scars may heal, blood counts may normalize, years may pass but never again will the simple act of waking up to a normal boring day as a healthy

individual be taken for granted or go unappreciated. One never truly knows how strong they are, until being strong is the only option. I hope to inspire people to care a little less about the small things in life, be a little more care free and live each day to the fullest. There is so much more love, beauty and kindness in a world of sick children than what is seen to the eye.

This my journey and I am so proud to be sharing it and celebrating 3 years cancer free!

Ariel

As told by his Mom, Yael.

Meet Ariel. He was born as Idan, but very shortly after his birth we understood he needs a boost to keep him alive. We changed his name to Ari-El (God’s lion).

It helped! Our lion received the strength he needed. He fought tooth and nails for years, but he won!

Ariel was born in September. Little did we know it’ll also be the month to raise awareness for the disease that almost took him away from us.

We are grateful for the research, developments and achievements that allows us to wake up every single morning with our little child by our side.

Marky

As told by his Mom, Heidi.

Meet Marky – a 6 year old Nintendo enthusiast who just started grade 1.

He is also a 3 time cancer survivor.

On May 21, 2017, at only 3 years old, he was diagnosed with a rare and aggressive form of leukemia.

Overnight he was transformed from a happy, thriving little boy to a very sick, unrecognizable version of himself laying in a hospital bed in the ICU. He battled hard through 15 months of intense chemotherapy and lived most of this time on the 8th floor of Sick Kids Hospital. He endured hundreds of doses of chemo and transfusions and suffered through countless infections and complications.

Just when it seemed like we could see the end of the road for his treatment, we were shocked to learn that his cancer had relapsed – July 21, 2018, exactly 14 months after his initial diagnosis. Marky was headed down the long and painful road of a bone marrow transplant. He fought hard for his life every single day – through more tough rounds of chemo, a variety of complications and a transplant that left him frail, exhausted and with a poor quality of life.

Six months later, the day after his 5th birthday, we heard the unimaginable news that his stubborn cancer had returned once more. For the first time since his diagnosis, we were given the choice, did we want to continue with treatment. Thankfully, Marky was a candidate for the newest form of treatment for blood cancer called CAR-T cell therapy. He was only the 14th patient in Canada to receive this therapy. The road to CAR-T would be a long and narrow one with many places where it may fail. We pushed through, “Marky style” and never gave up hope or determination. On June 10th, 2019, Marky received his CAR-T cells.

Fast forward 18 months and Marky is feeling better than he has since that dreaded day back in 2017. He is once again thriving and happy and most importantly, CANCER FREE! This week he started grade 1 with all of his friends and classmates. While he is still fighting through dozens of long term side effects from years of treatment, we are grateful for everyday, every moment and every smile we see on his sweet little face. There were many dark days throughout his journey and many times hope felt far away, Marky fought like a warrior and we all dug deep to push him through. Cancer stole many days, weeks and months from us but we came through the other side a little stronger, a little braver and with an appreciation for life, love and all the moments in between.