“After that we thought we were prepared for anything, but nothing could prepare us for the cancer diagnosis.”
Our son Joshua was diagnosed with autism at the age of three. It was a terrifying time for us and a diagnosis that to this day, regularly tests our strength.
Before this, Joshua was diagnosed with craniosynostosis when he was just a few months old. This is when the separate pieces of his skull started to fuse together prematurely. In most kids this happens around age two. For Josh, this must have started shortly after he was born. He had to have surgery to reshape his skull when he was just 6 months old. This left him with his distinctive scar which is usually covered with hair. His entire head was so swollen that he couldn’t open his eyes for several days. As part of his recovery, Josh wore a helmet for a few months which helped his head take / maintain a proper shape while he healed. He was a busy crawler so this actually helped sometimes when he would bang into table legs, walls, us!
After that we thought we were prepared for anything, but nothing could prepare us for the cancer diagnosis in January 2011 when Josh was five. Josh had a tumour in his brain. Now, we found ourselves even more terrified. Terrified that we were going to lose our son.
Josh underwent a pretty intense surgery to remove the tumour. Between the tumour and the surgery to remove it, Josh couldn’t walk on his own for many months. He also endured months of radiation and chemotherapy, which made him sick, very weak and immunocompromised. Also, his lack of hair during treatment meant that this normally hidden scar for the earlier surgery was very obvious. During treatment he had his sixth birthday, but because he couldn’t have a party with other kids, he refused to be six for months afterwards. It was a very difficult time for our entire family, even his younger sister Jessica wasn’t allowed to be around other kids for fear that she would bring home a cold.
Children with autism can have high levels of anxiety. Josh does not do well with change. His cancer completely tore apart every ounce of routine we had worked so hard to build for him.
We couldn’t leave Joshua for a second. Not even to grab a coffee. One of us had to be with him every second at the hospital. My husband Michael and I were determined to create a new normal – even with chemotherapy, radiation and regular blood transfusions. We both took a leave from work, so we could spell each other off on 24-hour hospital shifts. My mother-in-law Pat moved to Calgary to help with both Josh and Jessica.
Surprisingly, Joshua’s autism became an unlikely ally in his battle against cancer. Even the negative routine of invasive medical treatments became a source of routine and comfort for him.
Hearing that your child has cancer is as horrible as you can imagine. But even worse was watching our son endure the awful procedures necessary to get rid of the cancer. And, it didn’t just affect Josh. Jessica once asked us if she would also have to go to the hospital when she turned five. She worried her hair would also fall out. As a parent, it is heartbreaking to see the toll cancer has taken on not only one, but both of your children.
This is why I am so grateful for Kids Cancer Care and all they have done for our entire family. In the summer of 2011, between rounds of chemo, both kids attended their SunRise program, a day camp for younger patients and siblings. Josh loved that he could be around other kids – because Kids Cancer Care creates a safe and supportive environment for kids on and off treatment. For a few days during that awful year, he was just a kid again.
During 2011, we also went to parties and other Kids Cancer Care functions like Hitmen games in germ-controlled private suites.
For the past seven years, we’ve been able to attend so many wonderful programs from the Polar Express train ride at Aspen Crossing to Family Camp in the fall to cooking classes and more. We are so grateful to attend these programs and to see the friends with have made through Kids Cancer Care.
And now both kids go to summer camps at Camp Kindle. They love camp and can’t wait to go each year. Although we miss them, it gives Michael and me a wonderful break too.
From start to finish, Josh’s treatment was less than a year. I wish that was the end of cancer for Josh. Unfortunately, Josh is one of the 75% of children who survive cancer, but live with life-altering side effects. Josh walks with a limp and gets tired easily. It pains me when I hear that the boys at school tease him because he can’t keep up. They taunt him as they lap him in gym class. They call him lazy and say he’s a baby.
Once again, this is where Kids Cancer Care comes in. Last September, Josh was scheduled to attend his first day of PEER (Pediatric Cancer Patients and Survivors Engaging in Exercise for Recovery). PEER helps children affected by cancer to rebuild their fundamental movement skills (e.g., running, jumping, catching and throwing), while also building muscle strength, aerobic capacity, flexibility and balance.
That day, Josh had a particularly bad day at school and refused to go to PEER. Michael and I encouraged him and he finally, yet reluctantly, agreed to go.
He had the time of his life.
He came out of the gym with the biggest grin on his face. PEER is the best thing ever for Josh. When we asked him if he wanted to go to PEER again, Josh answered, “Yes! They’re just like me there.” My heart melted.
At PEER, he’s free to be himself. He can just be a kid without being different. He’s also benefitted from weekly tutoring sessions through Kids Cancer Care’s Education Support Program.
Thanks to all the staff in the office and at camp, the PEER and Educational Support volunteers, and everyone who supports this organization – Kids Cancer Care makes our little worlds brighter. And for that, we are eternally grateful.”
– Victoria, Josh and Jessica’s mom
