Read stories and view photos of real OPACC families as they share their childhood cancer journeys. Some have happy endings, some do not, some are still in transition...but all are inspiring, raw, and powerful!
Story and photo courtesy Amy Amato
"Mia was diagnosed with Medulloblastoma on July 26th, 2015 at the age of 13 months. Up until that point, she was a very healthy little girl, never sick, not so much as a cough. I fed her healthy foods, probiotics, no sugar, not so much as a cookie! I did everything I could to make her first year as healthy as possible. As you can imagine, we were devastated upon learning her diagnosis. Our entire world changed in an instant.
She was admitted at the Hospital for Sick Children and within 20 minutes of being in the ER at HSC, they knew how sick she was and how little time she had to get treatment. They had to drill a hole in her head to drain out the excess spinal fluid that was accumulating in her brain, she had papilladima (swelling of the brain). She would have her EVD tube for the next two weeks. It was undescribable - watching your baby suffering in pain, with a tube sticking out of her head. She underwent a craniotomy, brain surgery to remove her tumor the next morning. Doctors were able to successfully remove the tumor. She continued to recuperate very well over the next couple of weeks; doctors were impressed at how she improved each day. She then started 7 months of chemotherapy treatment to ensure that the tumour cells were destroyed.
It has been an emotionally and physically challenging journey these past months for both Mia and us (her parents). Thankfully we had an incredible support team, family, friends (some who disappeared—some people cannot deal with such crisis or maybe they are simply selfish), the team at SickKids, and OPACC.
OPACC was there for us every Monday morning and Tuesday evening at Sick Kids. They helped me talk about Mia’s condition and listened with empathy and such wonderful support - John & Sue are the best! God Bless them for their selfless work. They gave me such great advice, helped me sign up for events for Mia and helped me deal with my daily struggles. The coffee and treats were so thoughtful and very much needed. It's difficult to stay strong all the time, especially when your child is suffering from any critical illness, but OPACC helped me deal with my daily and weekly struggles, and I would always leave them feeling a little bit better. They knew what I was going through which is the most important thing. Both John and Sue have lived through this. It was comforting to know that you are not alone in this journey. Yes, you have family and friends to help you, but no one really can understand your emotions and your struggles unless you have experienced them yourself. I got my strength from them. If they were able to continue on and get through their children’s illnesses, then I could too. And, we have been able to get through this.
Mia has completed her treatments and at the present time, she has had no recurrence. OPACC helped me create a blog to record my experiences and Mia’s experiences so that we could share it with family and friends - it has been such great therapy for us, for me especially. Even though Mia has been cleared with the last few MRIs and is currently cancer free, it doesn’t mean it is over. It will never be over. Our lives will never be the same. There will always be the constant fear of it returning, side effects of chemotherapy, and post traumatic stress that we are all experiencing. For now, we live and cherish each day we have with her. We thank the Lord every day for giving us more time with her and we continue to hope for a long and wonderful life for our little girl." - Amy, Carmine, and Mia Amato
Story and photo courtesy Hope Russell-Pottage
"The skies were storming, but when Lillian came into this world, with her right arm above her head like a superhero, the skies cleared and the sun came out. She has been a special child from the moment she was born.
On October 30, 2015 after going back and forth to the pediatrician with an unexplained cough, Lillian was diagnosed with b-cell acute lymphoblastic leukaemia. She was only 2.5 years old. Her battle began immediately with a ten day stay in hospital and loads of chemo. After 28 months, Lillian finished treatment and was in the clear.
She was a healthy and vibrant child. A loving sister to her two older and one younger sisters. But on June 25, 2020, just 2.5 years after finishing treatment, Lillian received the devastating news that her leukaemia had returned. She would have to battle cancer again and this time treatment would be more intense. She immediately began intense chemo treatments and a 28-day stay in hospital. This was followed with two additional short stays in hospital and another 33-day stay. It was extremely hard on her and her family and Covid-19 didn’t make things any easier. It actually made things more isolating and lonely for Lillian, and her mental and emotional health began to suffer.
Now, just five months since relapsing, Lillian is nearing the end of frontline chemo and will soon enter the maintenance phase. Her eyelashes have grown back and her hair is starting to grow again. Her colouring has returned and she is back to her old precocious self. Cancer has tried twice to take her down but she’s a fighter and is giving it her all."
Story and photo courtesy Jen Shaffer
"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 to his chest and abdomen. The amazing team at SickKids jumped into action, and Corey underwent 6 rounds of chemotherapy from June to November 2018.
Corey’s positive attitude played a huge role for our 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, and organizations including OPACC, 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 is currently studying mathematics at Western University."
- Jen, Gabe, Corey and Jonathan Shaffer
Story courtesy Tracie Pasubio
"My son Antonio inspires me everyday to be a better person, to strive to do better, be more loving, kinder, gracious, accepting, patient, tolerant and forgiving. He has shown me what real strength of character looks like, real bravery, true grit against immense fear and uncertainty.
His love got me through those moments in the hospital when I wanted to succumb to the black abyss of despair and terror, completely alone. I treasured those early moments in the hospital, little snapshots etched in my mind, I would memorize his face, his hands, his voice. Allowing myself to believe it was just a matter of time. Telling myself to remember all the details just in case it all went sideways, somehow, some day and he was gone forever.
In April, it was Easter I remember, of 2019 he caught a cough. On May 7th at 5:30am Sick Kids Hospital the oncology doctor came into our emergency room to tell my husband and I the results. Acute Lymphoblastic Leukemia high risk and by 7:30am I was signing consents for him to go to for a lumbar puncture.
It’s all a blur now of his intense never ending pain, vomiting, nightmares, insomnia and exhaustion. Seldom he shed any tears out of pity or his asking of why or how long the journey.
I want to say it has gotten better for him. I grasp tightly onto the small victories there have been but I cannot deny the stark realities. The PTSD that rises and ebbs with each month. The continuing thick brain fog and profound lapses in memory.
In some ways the sweet boy he once was is lost and replaced by this weathered and battered young man now. I fear for his future of what the cancer has stolen from him, his innocence and stamina of youth and what is yet to be revealed as he ages through the years.
Don’t get me wrong, I fiercely believe he can only create a memorable life for himself. What, with his courage and wisdom beyond his young years. I pray this exceptional son of mine will find love and peace and joy and all that life can offer him because he is so deserving of it all."
Story and photo courtesy Amy Watson
"On February 25th 2016, I woke up to feed my 3 month old baby, and looked down at my sleeping, just turned 4 year old, and noticed she was grey. I woke her up, and saw that under her eyes were dark grey, almost black. Her finger nails were blue, and there was no colour in the palms of her hands or the pads of her feet. My mom came over and stayed home with my baby while I took Everlee to McMaster hospital. We were brought in to the ER where I told a doctor what had been going on and showed him her colouring. They sent us for a chest x-ray to rule out pneumonia, and then told us they would have to take a blood sample to see if they could figure out what was happening. After getting blood taken, I took Everlee to get a snack at the cafe and we walked around for a while, because I figured it would take a while before any results came back. When we went back to sit in the ER waiting room, a nurse said they had been waiting for us. It had only been 45 minutes. I was surprised but not worried. I figured she was anemic. It runs in the family.
The nurse brought us back into the ER, but instead of bringing us to a bay room, they brought us into a private trauma room. I instantly knew something was wrong. I started texting my husband to tell him I had a gut feeling something was very wrong. A very kind Child Life specialist brought in a DVD player and a few movies for Everlee, so she sat happily on a bed, munching away on cheesies and watching Toy Story. I paced the floor beside the bed waiting for the doctor to come in. When he did, he sat down beside the bed and looked me straight in the eye, and said "We think Everlee may have Leukemia." I will never forget the look on his face when he said those words to me. All I could respond with was "I'm freaking out." He then told me to call whoever I needed to call, and ask them to come down for support, while they ran more tests.
He left the room and I started to call my husband at work, but I couldn't remember the phone number. Then when I got the number, I couldn't dial it. I kept messing up. My fingers wouldn't press the right numbers. I could feel the panic rising in my chest but was trying so hard not to show it in front of Everlee. I finally managed to get the numbers right and my husband picked up the phone. I told him exactly what the doctor said to me, and he said he was on his way, and hung up. The panic continued to rise, and I began pacing again. I knew it would take my husband at least an hour to get to us, so I called my mom, who was home with the baby. She knew in my voice I was panicking, and did her best to try to calm me down. I got off the phone and laid down beside Everlee.
I remember looking at her fingers and cute little toes because she has made herself comfy with her movie and snack and had taken her shoes and socks off. I played with her hair, and started thinking all the worst case scenario things. I knew nothing about Leukemia. I knew nothing about childhood cancer. I couldn't believe this was happening to my child. My first born. The love of my life. When my husband arrived he began to pace the room, while I cuddled with Everlee. Ten minutes later, the ER doctor, a social worker, and a child life specialist walked into the room, and I knew. All hope that they were wrong, or mistaken, left me. I remember them explaining that we were going to a separate room, and the child life specialist would stay with Everlee. I started to follow the doctor and began running my hands through my hair, and swearing.
I have since learned that many people respond to hearing this devastating news in many different ways. Mine was to be angry. I was full of rage. As I walked to that room, I got angrier by the second. While the doctor and social worker explained to us that Everlee appeared to have Acute Lymphoblastic Leukemia, but they weren't sure of the type yet, but more tests would be done after we were admitted. We were told she would have surgery in two days to have a port a cath inserted in her chest, and then she would begin chemo. I couldn't believe it. I couldn't go home first. I couldn't see my baby, who at this point had been home with my mom all day. I couldn't take a minute to let this sink in. We were being admitted to the ward now, where we could expect to be for at least 10 days. I didn't say a word. I didn't cry. I didn't hold my husband's hand. I just sat there. Full of rage. I was mad at the world.
After the meeting, we went back to the room where we met with the Oncologist who was amazing in explaining things to us in language we understood, and language we would learn very quickly. We were moved upstairs to the ward, and my husband left to go get me an overnight bag. Later that night when Everlee had finally fallen asleep, I cried. I sobbed. I believed in that moment that my child was going to die. I didn't know how I would live without her. I cried for hours. The nurses left me alone, and went about checking vitals, without disturbing me, except to offer a smile of understanding.
That night I began a journal for Everlee. In it I wrote" I will not let you see me cry. We will fight this with every bit of strength we have, but I will not let you ever see me cry. I will be brave for you. I will smile for you. I will make this as easy for you as I possibly can. I will do whatever it takes to save your life because I cannot live without you. You made me a mother, and there is no love like a mother's love. I will protect you and love you more fiercely than ever, and I will not cry."
18 months later, I can tell you, I kept that promise. I have cried in the shower, in the car, in the bathroom, while Everlee slept, when she was in another room, and I've gone outside in the middle of winter to scream and cry and fall to my knees because the pain in my heart was so intense I couldn't stand it. I have not shown her my fear. Every night when she goes to bed, I watch her sleep, knowing and remembering what I felt that first night in the hospital, but feeling a little less afraid then I did that first night.
After 18 months of treatment, we have had many ups and downs, but overall, Everlee is doing very well. She goes to school, plays with friends, participates in physical activities such as skating, swimming, cheerleading and horse back riding. People who meet her, have no idea what she is going through, because she looks and acts like every other child her age. They don't see the scars from surgery, or the bump on her chest where her port is, or the reason why her hair is so short. I used to get very angry when we were out and people would stare at her bald head, and shake their heads with pity, or outright stare and point at her, but now I feel like at least people knew what she was battling. Now, people think that because she looks so good, and her hair is growing back that she is "fine". She is not fine. She never will be fine. But for now, she is responding well to treatment, and we are fighting to continue to have positive results.
She will never be an average kid. No bruise will just be a bruise. Every fever will cause me panic. For the rest of my life, the possibilities of what could happen will haunt me. I will not allow it to haunt Everlee. I made a promise that first night to take on this burden. I would carry the weight. I will do whatever I need to do to protect her for the rest of her life. So I will carry the fear, so she can be carefree, and enjoy the childhood she should have. I will advocate for her, I will get out my soap box and tell anyone who will listen that there is not enough funding for childhood cancers. I will participate in every study Everlee qualifies for, to contribute to life saving research, so that maybe one day, no mother will have to feel the pain in my chest, that I did that first night. I will tell our story to anyone who will listen, and I will continue to put on a brave face, because to Everlee, cancer is just a chapter in her life story. I will not let it define her, categorize her, shame her, or allow anyone to treat her differently, because she deserves to live her life to the fullest. I will carry the burden. I will carry the fear. Because that's what us cancer moms do."
Story and photo courtesy Joahnna Mejia
"I'm writing the story of my sweet 9 year old boy Jason Conrad Mejia - Jason to his friends but to mom and dad JC as we fondly called him. Jason had been diagnosed with Stage 4 metastatic clear cell sarcoma (soft tissue, bones and lungs) last August 27, 2015. Our world turn upside down when the scary and bad news was delivered to us by the staff of oncology doctors in Sick Kids hospital. Jason had an identical twin brother and a five year old sister.
The battle began a day after the diagnosis, chemotherapy started the next day, he was given 3-6 months to live but my family couldn't just accept that - we tried so hard, hoping for the best and for longer time with him or to possibly take away all those cancer cells. Following doctors advice, treatment protocol was followed and serious prayers were offered, begging to the Lord and even asking for a collateral to be done just to save my sweet JC.
Jason was smart, creative in many ways like painting, loved to read books, loved outdoor fun like swimming, playing tennis, squash and camping in tents, he loved to play puzzles. When he was sick with the evil illness he mastered and excelled in video games on his iPad and friends were calling him the King of Clash Royale because none of his friends/ or classmates could beat him. He was very loving, caring and thoughtful not only to us and to his twin brother but to all who knew him.
They all say and can't believe that he was only 9 year s old as he thought and acted so maturely, he handled his sickness with braveness, calmness, coolness and as is often said, with grace. He was a real trooper when a needle injection was done or when his PICC line (right arm) was changed to a power port (chest area buried underneath the skin), numerous CT scans, X-Rays, ultrasounds, biopsies, MRIs, bone scans and so on.He was the youngest survivor attendee on the the Relay for Life of the Canadian Cancer Society in Ajax Durham Region last June, a week before he passed away. Within two days of registering he was already helping to raise funds. He created "Twin Mejia," the cancer destroyer team name, and had the biggest group attendees on that day. On the numerous trips to Sick Kids we claimed the 8A as our second home. But even with all those we had the chance to go on a trip to Disney World and did a Disney cruise which he enjoyed so much (the Aqua Duck ride!). We even spent a week at Blue Mountain and he was a ring bearer at our vow renewals of for our 13th year of marriage.
He passed away last June 17, 2016. We miss him dearly, especially his twin brother who is still in shock."
Story and photo courtesy Asaph Benun
"Gabriel Benun has had a long and fierce fight with Cancer. He was diagnosed at 6 months old with an aggressive form of infantile leukemia with a 35% survival prognosis. He underwent an aggressive and painful treatment including 6 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 8 months and endure more intensive chemotherapy followed by radiation before undergoing a bone marrow 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 (3 and 5 years old respectively at time of diagnosis). Both were split from their 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 short life living in the hospital and is now one year post transplant - still managing many long term side effects, but happy and at home."
Story and photo courtesy Valerie Caster
"January 2013: My 7 year old daughter Ayverie started to show signs of a typical flu - vomiting, headaches, fevers and dizziness. After weeks of back and forth from the doctors, specialists and the hospital, on January 31, 2013 through a CT scan a 5cm mass was discovered on Ayverie’s brain stem. Ayverie was rushed by ambulance to McMaster Children’s Hospital, and into the PICU. Ayverie had brain surgery the next day in an attempt to remove the tumour, for the best chance of survival. I came with Ayverie in an ambulance to McMaster Children’s Hospital with nothing except the work clothes I was wearing. Ayverie 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! Ayverie had to undergo radiation therapy, chemotherapy, surgeries, cyber-knife radiation, rehabilitation, many tests and hospital visits and stays.
Ayverie is now 11 years old and has beat cancer twice.Ayverie was diagnosed with Medulloblastoma (brain cancer), one day after her 8th birthday on February 7, 2013. Ayverie relapsed Septermber 11, 2015 and is in remission. November 20, 2016 will mark 1 year!!!
Ayverie has always approached cancer with grace, humor and maybe a little yelling and screaming...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...Embrace the fashion opportunity...Wig it!!!... Get a wig of long straight dark hair...Hair that you will never have...so wig the head! You lose your hair...the 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...enjoy the taste going down!"
[OPACC added note: Sadly, Ayverie passed away on April 3, 2019. To see her legacy tribute page "Ayverie's Journey" please click here.]
Reproduced with permission from Pam Isaak. To read more follow her blog at: http://marketerturnedmama.blogspot.ca
January 26, 2016: "It began like any other day. My focus was on getting my kids dressed, packing lunches and loading them into the van in time to make the first bell. Nolan, age 7, and Brooklyn, age 5, love to play for a few minutes with their friends before classes officially begin. Drop off. Check. Coffee run. Check. Morning visit with my wee man Ethan, age 2, to our local early years centre. Check. Around 11 o'clock that morning E and I headed home. Thursday is our special day together, one I so cherish. I put his favourite show on TV and headed upstairs to make him some eggs for lunch. Cue the phone. I always check my call display before answering, and when I did, my heart dropped. It was my kids' pediatrician's office calling.
In the three seconds or so that it took to pick up the receiver, my mind raced. B had just gone the previous day for an ultrasound on her abdomen, specifically looking at her bladder. After recurrent UTIs, random unexplained constipation and complaints of it hurting to sit on the toilet, I asked her doctor to consider more testing. I couldn't take her to that appointment as I was just beginning to teach my first week of the winter term, thank goodness my amazing parents jumped at the chance to spend time with B. The technician had told my mother it would be about 5 business days before results would be available to our doctor. But the pediatrician's office was on the phone now, on this very normal, average day. Asking me to come in regarding the results of the ultrasound. I hung up the phone and my chest hurt.
Not 15 minutes later, the office was calling again. This time, our pediatrician was on the other end. "I've reviewed the results and referred you up to McMaster Children's Hospital. There is a mass in her abdomen which requires further investigation. I have spoken directly to the surgeon, he is aware of your case." That day, two weeks ago, was just like any other day. The same arguments. The same requests for cooperation. The same snacks in my kids' lunch bags. Never, in my wildest dreams, would I have guessed our very busy pediatrician would call me at home. That McMaster would call the next day and tell us to come in three days later, promptly at 9am. To be admitted. To begin a very, very difficult two weeks. CT scans. IV drips. Blood work. Urine samples. Biopsies. Hearing and eye tests. Echos. Bone marrow biopsy. Bone scan. MIBG scan. Days so long, tears flowing uncontrollably and questions nearly impossible to answer:"Why do they keep touching me? They make me feel worser Mom! Make it stop!" "How many more tests mommy, I hate tests!" "Why can't I eat, mommy? They never let me eat here!" "Mommy I am not sick. I am fine. Take me home?" Seeing my little angel, my precious baby girl, in pain. Suffering at the hands of the people who were put in place to help her. Feeling entirely helpless, hopeless and trembling at the thought of one more wheelchair ride, one more gurney trip around the hospital. Watching her little eyes close, body full of drugs, knocking her into a deep sleep over and over again for the sake of something that did not exist a few weeks ago. Trusting strangers to care for my baby as they would their own, and begging them to do everything in their power to make her well again....
The day began like any other day. Two weeks ago tomorrow. Yet the following 14 days have been the furthest from that day. And while these have been the single most difficult two weeks of my life as a mom, wife and woman, I can see with very clear eyes how lucky we are. Yup. Its only taken two weeks to complete all the tests necessary for a proper diagnosis.The hospital is only one hour from our home. We are surrounded by family, friends and even perfect strangers who continue to fuel us with kind words, meals, gifts and hugs. Love is plentiful. Hope is visible. Faith, while being tested, is a strong and capable companion. Please pray, for Brooklyn and all children who's lives have been anything but any other day." #TeamBrookie #WarriorPrincess
Update July 27, 2016: "Brooklyn's latest test results came in a little over a week ago. Her MRI was NED (no evidence of disease) and while her urine markers were up, the oncologist assured us it's nothing at all to worry about as random urine samples for absolutely anyone can change from day to day. The spot on her liver has not changed in any way, therefore the doctors will continue to monitor it with ultrasounds every three months after her MRI scan and bloodwork. She has officially moved to the 'aftercare' clinic in 3F at McMaster. The secretary congratulated us when she handed back our appointment card. This month we celebrated and thanked our friends and family with a big party at our place... food, cold drinks, ice cream, fun and lots of laughter. We cried a little, hugged a lot and ended the day feeling overwhelmed with gratitude for our village."
Story and photo courtesy Maryam Naji
"Our superhero, Sina, was diagnosed with Severe Hemophilia A when he was 40 days old. He has been getting tones of factor VIII via his veins. However, he has been going through all difficulties bravely and patiently. Recently, he was diagnosed with Hodgkin’s Lymphoma stage 2A in July 2015. Afterwards, he had 4 cycles of chemotherapy which made him sick and bald. His father, who was diagnosed with Non-Hodgkin’s Lymphoma 3 years ago, has always been a fantastic role model and advocate for him in which he got bald to support him.Sina is in recovery now and growing back his hair. His last scan showed that his disease is gone. He is very enthusiastic, energetic and amazing, going to school and doing well there. We were taught a practical lesson throughout all our hardships: Life Is Too Short! As a result, try to be optimistic and hopeful, love each other, and enjoy every single moment of your life as we have been doing."
Story courtesy Barb Bennett
"The beginning of August 2009 Dillon turned 17. Shortly after he mentioned he had a small lump on his neck. I assumed it was a swollen gland and didn't make too much of it. My husband had died suddenly 10 weeks earlier and I was not really in a great state of mind. While school shopping I noticed how much weight he had lost and when he laughed he said he felt like his air was being cut off. The next morning I took him to our local clinic where bloodwork and x-rays were done. We learned Dillon had cancer and we had to go for a CT scan at the hospital in Barrie.
Once the CT scan was done there was a lot of commotion and we were taken to Sick Kids by ambulance with the clothes on our back. A large amount of doctors were waiting for us and we were a little confused that so much attention would be paid to a lump on his neck. It was then that we learned Dillon had 2 tumours on his neck, 15 small tumours in his abdomen and a tumour in his chest that took up 80% of his chest cavity and compressing his heart and lungs. Hodgkins Lymphoma 3B. Extensive chemo started immediately followed by radiation. Radiation was tricky as they had to do it and try to limit the damage to his heart and lungs. Dillon went into remission for 6 months but relapsed. The tumour was growing rapidly and a stem cell transplant was his only option. The prep for the transplant was horrendous but he took it in stride knowing he wanted to live.
Funny how he was the one so sick but if it wasn't for his strength through the treatment and transplant his mama may not have survived. All we had was each other and together we waited for the results of the transplant. On January 1st 2018 Dillon will be cancer free 8 years! Thank you OPACC for everything you do. It doesn't go unnoticed or unappreciated."
Story and photo courtesy Karen Destun
"The feelings of despair and isolation were a wave over us. Finding out that our 12 year old daughter would need to be treated for Acute Lymphoblastic Leukaemia left me feeling as though I were drowning in a sea of emotion, worry and uncertainty. As we navigated this world of chemotherapy, needles, medications, side effects, and appointments it wasn’t easy to ignore the fact that we were not alone.
Our family had weathered medical storms before. We certainly weren’t bargaining for this though. Seasoned as we were, the world of Paediatric Cancer was not easy to face. As inpatients on the Oncology ward at McMaster, we began to see that there was solace to be found in the connections made on the ward. As Lauren’s treatment moved forward, we were blessed to meet so many beautiful families that have become precious to us.
When I saw posters for the OPACC monthly meetings held in Hamilton, I longed to go. Finally, our schedule allowed that I would be able to attend, and that is where I first met Corinne and Jamal. I listened and was able to know their dear Jamshid through their words and tears. They listened and learned our Lauren’s journey through my words and tears. It was a moment in my life when I knew that I had been brought into something truly loving.
It wasn’t easy for me to say that I would drive off to Hamilton from Cambridge for my own well-being. As a parent in this type of situation, you will very often be told, “remember to take care of yourself.” Well, honestly, easier said than done. I would drive to the ends of the earth for my kids. I would take Lauren to any and all appointments, and to her own Teen Support Group, but to carve out that space for myself was difficult. Until... I learned that there were at least eight families in Cambridge receiving treatment with their child for cancer at McMaster.
This was in August of 2016. Childhood Cancer Awareness Month was around the corner, and through connections made with other families, the GoGoldCambridge campaign was taking flight. By January 2017 we were rounding Lauren’s 1st year of treatment, a milestone like no other considering she would still have another year and 3 months to go. The GoGold Campaign for September 2017 was already taking shape and there were new Cambridge families. How could it be that there were even more families in Cambridge bearing the brunt of this relentless disease? I had not had the opportunity to attend another OPACC support meeting, and was feeling that perhaps I wasn’t alone in needing the support from those who ‘got it’.
Following some conversations with other Cambridge families, the intent to create a Cambridge chapter was born. Ontario Parents Advocating for Children with Cancer provided the umbrella for our small but mighty group to begin meeting in June 2017. As a facilitator, I initially saw my role as a parent who was still in the midst of a long treatment with their child. I could easily relate to other parents and had a desire to be a supportive ear and voice during dire times. The feeling of isolation would hopefully be replaced with the sense of never being alone through this group.
I never dreamed that I would be doing this as a bereaved parent. We fully expected that Lauren would make it through to the end of her treatment. It was with utter shock and sadness that on April 23 2018 at the age of 14, Lauren succumbed to infection and passed away. We miss her terribly. Her journey didn’t finish as we thought it would. With this, I move through the pain, and my grief. I continue to facilitate the support group, and I support the work that OPACC provides to Ontario parents.
As a recipient of OPACC I can vouch for the immeasurable support provided through the community support groups that it organizes, reduced hospital parking rates provided to families, as well as the efforts to ensure families are aware of Provincial level benefits while their children are in treatment. With heartfelt regard, I am indebted to OPACC for opening me to a world of love, support and camaraderie like no other. The role of an OPACC group facilitator for me continues to be one of the utmost honour."
Story and photo courtesy Ashley Chapple
"In Oct 2017 Rylee at 18 months old clumsy self took a fall which resulted in a split lip. When Dad took her to make sure she didn't need stitches the doctor noticed something else and requested blood work.
2 days later we got the news no parents want to hear "your child has cancer". AML leukamia to be exact. The more aggressive type in children.
4 months of chemotherapy at McMaster Children's Hospital we got amazing news! Rylee was in remission and we were off to Sick Kids in Toronto for a bone marrow transplant.
Rylee's big sister Abigail (6 at the time) stepped up and donated her bone marrow to help save her sister's life!
Rylee came home and had a wonderful summer full of fun, and love.
July 2018, we got hit again. The cancer was back and worst then before! No other options.
We decided that we were taking Rylee home to enjoy and love her as much as possible free from the hospitals.
November 3rd Rylee gained her angel wings surrounded by the love of Mom, Dad and her brother and sister.
We need more awareness so no families have to share our heart ache!"
Story and photo courtesy Christine Good
"Damien is a special little superhero who has battled more in his 5 short years than most adults.
Diagnosed with Stage 4 High Risk Neuroblastoma (a rare paediatric cancer) just before his 2nd birthday, Damien was shown to have tumors in his head, abdomen, femur and sadly one on his spine which resulted in him being paralyzed from the waist down. It was also spreading through his bone marrow. His family was given a gruelling 2 year treatment plan which included, chemotherapy, surgery, stem cell transplants, radiation, immunotherapy and an almost certainty that he would never walk again.
3 years later and Damien is a happy and active little boy who is currently cancer free and not only walking, but running, jumping and dancing alongside his big brother every day.
He has overcome a mountain of setbacks caused by treatment , and has spent much of his childhood in a hospital room but somehow has always managed to get through it with an amazing fighting spirit and a smile for everyone.
His road has been unimaginably difficult at times but despite everything Damien has been through he remains a bright shining light and the true definition of a warrior."
Story and photo courtesy Sarah White
"We didn’t plan to have children. We liked our autonomy, and were on the fence. Then my mother was diagnosed with HER2+ breast cancer, and we decided that we wanted to have a baby so that they could meet, if something horrible should happen. Pregnancy was easy. Even in utero, she was very communicative, especially at night.
On February 4th, 2017, our daughter, Olive Valerie Wilson, was born. Since that day, she has been the love of our lives. Last winter, we noticed she seemed tired, and she had big bags under her eyes. She wasn’t hungry. Random fevers. We assumed it was normal toddler stuff. She had two little bumps behind her left ear, so the doctor ordered an ultrasound. They noticed her lymph nodes were a little swollen, and that we should follow up in three months. My gut didn’t sit well with this, so a couple weeks later, I asked the doctor to order bloodwork.
I still remember that sensation, my phone ringing at 3am on April 1, 2020. It was like a nightmare April Fool’s prank. We had referred to 2019 as the worst year, as we’d experienced three pregnancy losses. We had no idea. Her white blood count was dangerously low and we needed to get to the hospital right away. Eight hours later, due to COVID restrictions, I sat in the car while my husband was with Olive, being told she had leukaemia. B cell Acute Lymphoblastic Leukaemia. She’d start chemo right away, get a port inserted, and basically have three years of treatment. I would be off work. My husband had just been laid off.
Those first months are a blur. Chemo, lumbar punctures, steroids. Today, Olive is about to start maintenance, the last (knock on wood) and longest phase of treatment. She’s fiery, strong willed, smiley, and bright. Other than being angry when she’s getting her port accessed, and the occasional stomach ache, she’s never complained, even during unplanned hospital stays, while she’s vomiting, or when her hair fell out. Chemo trips became exciting for her, as Olive and her father would wear matching superhero shirts to Sick Kids. When she first realized that her hair was gone, she said, “Look, now I’m bald like Daddy. I’m bald Olive!” Her resilience never ceases to amaze me. She’s the bravest little girl.
She loves superheroes, Blippi, My Little Pony, Trolls, and Paw Patrol. She sings and dances and eats Goldfish crackers. She loves to share, adore affection, and say “I love you.” She adores her Golden Retriever, Walter (Wawa), St. Bernard, Henry (Hemmy) and fat orange cat, Lasagna. We are so grateful, everyday, that she had those two little bumps on the back of her left ear. They were totally unrelated cysts. If it hadn’t been for them, we wouldn’t have been ordered an ultrasound or bloodwork. She’s truly our brave little superhero."
- Olive, Sarah, and Mike (and Walter, Henry, and Lasagna)
Story and photo courtesy Cindi Shoot
"This is Sweet Ethan! He is a medulloblastoma survivor. Last year at this time he was in hospital receiving chemo now he is back at school enjoying life. OPACC helped us so much during those difficult times. Always a smile and support. So grateful for OPACC and the support that is given to our community."
Story and photo courtesy Michelle Da Costa
"In July 2014, at 13 months old, Samantha was diagnosed with a rare saccrococegeal mixed germ cell tumor. Being the youngest of her sisters, Samantha was determined to prove that her strength was so much stronger than cancer. Today, Samantha is a healthy and happy 7 year old little girl, who enjoys nothing more than being a normal child. Her family feels truly blessed and grateful that she remains in full remission and has been cancer FREE for 6 years!"
Story and photo courtesy Jessica Hall
"Johnny’s journey began on August 5th, 2020. When he had woken up that morning he was not himself at all and couldn’t walk. We took him to the hospital where they informed us that he needed to be tested for Leukaemia and rushed him to LHSC. Johnny went sepsis from having a strep toxic shock blood infection and spent sometime in the PCCU. On August 8th he was diagnosed with B Cell Acute Lymphoblastic Leukaemia. Once Johnny was stable his treatment began. After a month and a half at the hospital we finally got the ok to go home with Johnny. Four days later he spiked a fever. We took him back into emerge and he quickly went sepsis again and ended up back in the PCCU. We’ve spent most of Johnny’s treatment so far in hospital, as a in patient. Johnny has had to have several additional surgeries, biopsies, ultrasounds and MRI’s due to odd lumps appearing throughout his body and disappearing a few days later. At the beginning of November he had to have a lymph node in his neck removed and biopsied. Through bumps, bruises, fevers, needle pokes, COVID tests, and chemo my little warrior stays strong and continues to fight each and everyday."
Story and photo courtesy Sarah Abdulahad
"On January 6, 2020 Febronia was diagnosed in Acute Lymphocytic Leukemia, a type of cancer in the blood and bone marrow. Febronia has been fighting cancer for over a year now. She was born in 2017 and is 4 years old now! She has been through a lot of hospital days and treatments. Febronia is currently fighting this long journey and going through it all with a bright smile on her face praying that her treatment would soon end and can celebrate her with cancer free."
Story and photo courtesy Nancy Margetts
"Ava was a happy, cheerful girl who loved to dance and cheer. In the summer of 2020, Ava started limping out of the blue and after taking her to the hospital and running a bunch of tests, they could not find the cause. Then in December she was hospitalized with what we thought was appendicitis, but we were then given the news that it was Ewing Sarcoma. After 14 rounds of chemo, 35 rounds of proton radiation and 10 more rounds of radiation for the lungs, Ava is home and recovering and has returned to school and enjoying time with our family and friends."
Story and photo courtesy Narece Bekker
"Jason was diagnosed with T-Cell ALL leukemia on November 7, 2012, two weeks before his fifth birthday. He was taken to an urgent care after I noticed a very sudden and very large lump in his neck as he tried crawling into bed early, which was completely out of character for him. He had also had a massive nosebleed a few days prior, skipped out on Halloween (his favourite holiday), and lost a lot of weight. The nurses immediately put us in a room alone and 3 hours later we were admitted to McMaster Children's Hospital and given the devastating news.I say 'we' because when Jason was diagnosed with cancer, our entire family was diagnosed with cancer and the journey was one that we took together. Even though Jason had a rough start, he remained strong, resilient, and 'spicy'. Fiercely independent, he still does everything himself - recently he built an entire computer by himself! Now almost 14 and cancer-free, Jason has remained in remission for almost 9 years. This year he started High School and, despite some learning issues, he plans to be a doctor, or a YouTube star...or both."
Story and photo courtesy Lynn Philp
"Patrick was diagnosed with Acute Lymphoblastic Leukemia (ALL, Type B) at the age of 4 in 2017. He wasn't recovering well from his tonsillectomy and then his legs started to hurt. On the day of his stepsister’s wedding, he woke up and couldn't walk. Instead of walking down the aisle as a ring bearer with his brother, we were sent from our local hospital to McMaster emergency to "rule out cancer". We were able to watch the wedding via Facebook video while waiting for blood results. After 3 years of treatment, Patrick had his last chemo dose in July of 2020 and started his post-treatment journey."
Story and photo courtesy Diana Merogi
"Joseph is 4 years old. Joseph was experiencing leg pain, chronic infections, lack of appetite, nosebleeds and pale skin for several months. Due to COVID, his pediatrician didn’t see him in person because of ongoing fevers, which is a symptom of COVID. It took several weeks of back and forth with doctors before we finally took him to Sick Kids hospital, where he was almost immediately diagnosed with Acute Lymphoblastic Leukaemia. Joseph is currently undergoing 2.5 years of chemotherapy to treat his cancer. Joseph is our hero because he has faced this diagnosis and all its hardships with more grace and resilience then one can ever imagine. Keep fighting Joseph!"
Story and photo courtesy Darryl Hazen
"On December 11, 2014, seven year old Olivia woke in the middle of the night with severe pain in both legs. A trip to the doctor assured her parents that the pain was just normal 'growing pains' and would subside with time. Olivia's condition worsened over several days and after much persistence and multiple visits to the doctor and urgent care center, blood work was finally ordered, and within a few hours the family received the devastating news that Olivia had leukemia. Treatment started immediately. It was extremely hard on Olivia, but thankfully she reached remission after the first month of chemotherapy, and celebrated the end of two years of treatment in February of 2017. Unfortunately, Olivia relapsed just a few short months later. Another two years of harsh chemotherapy and radiation was recommended, but Olivia relapsed for a second time before even completing the relapse protocol. Treatment options were expanded and the family headed to Philadelphia where Olivia received CAR-T cell therapy that put her in remission for 11 months. When the leukemia relapsed for the third time, Olivia underwent CAR-T cell therapy in Maryland. Olivia then received a stem cell transplant, as recommended to keep her in remission. It has been almost seven years since Olivia was diagnosed and the treatment has taken its toll in many ways, but she is an incredibly strong warrior who continues to live life to the fullest."
Story and photo courtesy Sabrina Filippelli
"Two weeks after a routine tonsillectomy to improve Gianpaolo’s severe sleep apnea, we grew concerned over him not walking and a low-grade fever that just wouldn't seem to budge. After several visits to our doctor with no real resolution, we decided that something just wasn't right and took him to the Hospital for Sick Children. No one was prepared for the answer we received. On February 18th, 2017, to the shock of family and friends, Gianpaolo was diagnosed with Acute Lymphoblastic Leukaemia. He was a few months shy of his third birthday. Treatment for our brave little ironman began immediately with chemotherapy, transfusions, lumbar punctures, as well as many hospitals admissions in isolation. It was a long and challenging road but May 2020 we finally ended treatment. Gianpaolo is a happy, healthy and super funny 7 year old who has come to life after spending half of it in treatment."
Story and photo courtesy Sharon Parker-Copeland
"Our journey with Eric’s cancer started in 2009 when he was diagnosed with stage 4 neuroblastoma. He had intense chemotherapy and stem cell transplant and radiation. He survived and lived well for 6 years, but then relapsed in 2016 at age 17. We were devastated and OPACC was there for us with support and encouragement. Eric has had a lot of complications from all the chemo, like losing his hearing and permanent nerve damage to his lower legs and hands. He copes well but tires easily. Eric had another relapse in 2018 and had some radiation. Eric was able to graduate high school in 2019 and started work at a restaurant where he had done his Co-op. Then 2020 happened and he was laid off work due to the pandemic and he also relapsed again, starting chemo in March 2020. It's been a struggle. And OPACC has always supported us. Eric started radiation again in October 2021 and continues with oral chemo at home. One day at a time. #TeamEric"
Story and photo courtesy Agnes Barcz
"On March 2nd, 2018, I went to Sick Kids with Victoria to get an ultrasound for a goose egg or a possible cyst near her temple. During the ultrasound, the technician left the room and the radiologist came in to speak to me. Within an hour, we were taken to the ER where all these doctors and fellows were waiting for me. I didn’t know what was happening, but I knew that it was bad when one of the doctors asked for social work to be paged. I remember that I kept asking what was happening and no one would answer. I asked one of the doctors what floor he worked on. When he told me, I knew. No parent wants to belong to a “floor” at Sick Kids, but for me Floor 8 was something absolutely devastating and soul shattering. I told the doctors to leave the room as they had the wrong child. I mean, Victoria wasn’t even 2 years old. I was planning her birthday party and she was fine. She didn’t have cancer. To this day, one doctor still remembers that I threw him out of the room.
Needless to say, Victoria didn’t have a birthday party. We spent her birthday at the hospital. By March 9th, Victoria had her first round of chemo. Within a month and a half, Victoria was officially diagnosed and we were on a flight to Jacksonville for proton radiation. There were times during that year that I didn’t have hope and I didn’t know what the future would hold. Today, Victoria is 3 years in remission. She has many follow up appointments and procedures but she faces challenges with a strength, wisdom, and feistyness far beyond her years."
Story and photo courtesy Gillian Hamby
"Sarah was diagnosed with high risk acute lymphoblastic leukaemia when she was 3 years old in October 2012. It took her 3 months to get into full remission, which was the first challenge, as the goal of her treatment plan was to be in remission after 1 month. We were told that if she wasn’t in remission by the third month, she would have to switch treatment plans. Thankfully, she was, and she remained on this treatment plan until it was finished in February 2015.
Sarah remained in remission until July 2016, when a routine exam showed that her cancer was back. She was 7 years old. She was given a new treatment plan that was more intense than her first plan. This plan was for Sarah to receive 24 months of chemotherapy. Similar to her first experience, it took her over 3 months to get into remission instead of the one month goal. Due to this, her treatment plan was changed. Instead of two years of chemo, she began to prepare for a bone marrow transplant. Sarah had a bone marrow transplant on December 23, 2016 - right before Christmas. Her new chance at life was the best Christmas gift ever.
Sarah’s remission lasted until February 2018 when it was discovered that she relapsed again. She was 9 years old. We were so lucky that she was able to be part of a new treatment called CAR-T. Sick Kids only began having this treatment available at the beginning of 2018, so Sarah was one of the first patients to receive CAR-T right at Sick Kids. This treatment put her into remission again.
Her remission lasted until September 2019. Sarah was 10 years old and fighting cancer for the fourth time. This time her treatment plan consisted of an immunotherapy drug to get her into remission in order to proceed to a stem cell transplant. In February 2020, her new immune system attacked her optic nerves causing her to lose all of her vision. With intense treatment of steroids, plasmapheresis, and immunosuppressants, she was able to recover most of her vision back over a period of about 6 months. In that time, she had three more attacks causing her team to increase her treatments. After her vision was stable for a few months, they began to wean her off of the steroids and the plasmapheresis. She had her last plasmapheresis treatment in December 2020, steroid dose in June 2021, and she is currently being weaned off of her immunosuppressants. Even though she has recovered most of her vision, she has not recovered all of her colour vision and with the permanent damage that was done to her optic nerves from these attacks, she has blind spots in her field vision.
Sarah’s world came crashing down again in October 2020 when her cancer returned for the fifth time. She was still receiving intense treatment for her optic nerve attacks when the leukaemia was discovered in her blood. She was 11 years old and having to start her fifth battle against leukaemia. Due to her optic neuritis treatment and the pandemic, her options were quite limited. But her amazing team found one option that we could try - 6 rounds of an immunotherapy medication that she had not tried yet. Each round consisted of being hooked up to a small pump for 28 days to receive a continuous infusion of the medication. Each round started with a hospital admission. Sarah handled this medication very well. It was frustrating being hooked up for 28 days straight 6 times, but she got used to it pretty quick. She finished this cancer treatment in July 2021. This medication has put her into remission, and we are hoping that this is our miracle drug that has her finally have a lasting remission."
Story and photo courtesy Lisa Heffernan
"Our beautiful sweet baby’s life changed forever on September 22, 2015 when we were told she been diagnosed with High-risk B Leukemia with the Philadelphia chromosome and she had a 3-year treatment plan ahead. During Abby's first year of treatment, we spent over 291 days in hospital. After 3 years, we got the best news ever that the cancer was gone and she could now start to live her life. We didn’t even have a week to catch our breath before we were told she'd relapsed. This time, we would have to move 3 hours away to Toronto so she could endure a bone marrow transplant. After 7 months spent in isolation, the bone marrow had taken and we could start the transition to Ronald McDonald House to heal for 2 months before going back home. Sadly, within those months we were told once again that the cancer was back. On August 19, 2019, my precious angel took her last breath. I will never understand cancer and my goal is that this pain for parents has to stop. Go fly high, my angel girl - I will see you soon."
We thank all of the parents that have submitted their stories and photos to this feature! We hope to increase awareness by having the world read and hear real stories about how childhood cancer impacts real families. If you would like to submit your story and photo for this page, please email them to us at: firstname.lastname@example.org