“Why did you wish for something that you knew would never come true? Isn’t that a waste of a wish?”
“Well,” smiled Arya, “because there’s always a chance.”
This is the story of strong and resilient Arya who definitely lived up to the strength of her name. Arya means lioness and one could always see the determination in her eyes. She was lion-hearted, five years old, fighting a deadly disease with all her might. In March 2017, Arya was diagnosed with infratentorial anaplastic ependymoma type A – an aggressive brain cancer – shortly after her third birthday. When Arya’s cancer recurred 14 months after her initial diagnosis, it was considered terminal.
We were devastated by the news and wanted to do the best for our daughter in whatever time was left. With Arya’s terminal diagnosis, there were only two things that helped us to sleep at night. Firstly, to make Arya’s short life the best it could possibly be. We wanted her life to be full of adventure, love, excitement, friends, and inspiration. We tried to do as many things as possible on Arya’s bucket list, and we began prioritizing family time and adventures over careers and college savings. Secondly, to try novel treatments (many in the form of clinical trials) to maintain Arya’s quality of life for as long as possible and hopefully contribute to finding quality treatments for others who will walk the same path as Arya. I spent many late nights reading the latest academic research papers on cancer immunotherapy and brain tumors and trying to qualify Arya for clinical trials that might offer her a bit of stability.
What does it mean to have a good life? For Arya, it meant having a chance to try new things. She was always excited at the prospect of any new adventure and the first to yell “yeah!” when we proposed an outing. We worked around her treatment schedule to plan as many fun adventures as we could. In 2019, Arya’s goal was to spend 50 nights in a tent! If you would like to read about her adventures, check out her blog here.
When a child is diagnosed with cancer, it affects the entire family, and our family was no different. Aeo and Zephyr, Arya’s older twin brothers, were often without a mom, as I spent most days with Arya at her appointments. And there were several occasions when we traveled for clinical trials and had to leave Aeo and Zephyr behind with relatives. They grew up early and started handling responsibilities without any guidance. They learned to get themselves ready for school and walk to school on their own whenever Arya and I weren’t home. I often struggle with how much of their lives I missed out on in the three and a half years that Arya battled cancer. The sibling experience is just as important to acknowledge and I’m so grateful to see how Aeo and Zephyr are now becoming more helpful, knowledgeable, kind, and capable young men every year.
During this tough phase, there were many communities and organizations that helped and supported us. One of them is the Kids Cancer Care Foundation of Alberta. Arya was one of the first kids to take advantage of the newly expanded PEER exercise program. Working one-to-one with the Ph.D. PEER exercise specialist, Arya engaged regularly in yoga, sports, exercise games, and gymnastics. The increased physical activity helped Arya counter radiation’s side effects by rebuilding her gross motor skills; building bone density to reduce her chances of bone degeneration; and restoring brain neuroplasticity to prevent cognitive delays. Arya regained most of her gross motor skills, balance, and coordination. She was almost back in the normal range and loved PEER.
On June 20th, 2018, we were looking forward to celebrating one-year cancer-free with Arya. Unfortunately, we didn’t receive the happy news we were hoping for. Arya’s one-year MRI scan revealed a mass on her spine at T11, that was indicative of metastatic disease. Regardless of this upsetting news, we chose to continue with our family holiday that had been planned, and we were determined to make sure that the kids had a fun summer.
2020 was especially challenging for Arya. She dealt with a huge number of health issues, a very intensive period of treatment, and more emotional struggles than in the past. We were very concerned that this quick decline meant that we might be nearing the end, but just as the rest of Arya’s stories have had its ups and downs, Arya surprised us with a dramatic improvement overall.
Swallowing — the most concerning factor during her treatment — took center stage during recovery. We worked with an SLP (speech/language pathologist) to try some strategies to help Arya to get down small amounts of food safely and to help her breathe at night. After a week of no improvement, discussions around feeding tubes started, as Arya was weak and had dropped a lot of weight. Then, 10 days after surgery, Arya suddenly ate a bowl of oatmeal without coughing, and we were optimistic that recovery was on its way!
On July 20th, Arya finished her 5th course of radiation! She had now undergone radiation treatment at the ages of 3, 4, and 5, and now, another course at age 6. The next day, July 21st, Arya finished her 7-day course of trial chemotherapy. She was now off all the meds she’d used so frequently in the previous 4 weeks. She had completed an intense period of daily treatments, dealt with severe nerve pain and drug side effects, and attended a ridiculous number of follow-up appointments (vision, hearing, PT/OT, check-ups, etc.). She earned herself many new Beads of Courage in the last two months, including 40 new beads in the last 28 days. Kids Cancer Care funds the Beads of Courage program, which helps children understand their cancer experience. Each colourful bead represents a medical treatment or milestone along the way, offering kids a tangible marker of the treatments they have endured.
In 2019, Arya, and her three brothers (and mama, papa) attended Camp Kindle’s Spring Family Camp. Camp Kindle is run by Kids Cancer Care and is offered to families impacted by cancer. They also offer summer camps for young children with a parent battling cancer, as well as for bereaved siblings. This is a fantastic organization that has supported us greatly. Arya had an amazing time during her weekend at the camp, she tried archery, and went on a little hike to a challenge course with us! Her brothers had a lot of fun experience too and we’re very grateful to the staff and volunteers for it!
Over the course of Arya’s journey, she participated in 4 (almost 5) clinical trials, as well as 3 investigational treatments off-trial. Arya previously had 2 tumour samples banked for research. We also donated her tumour and brain after her death to help advance knowledge and research into brain cancer. We hope that her journey will contribute greatly to what is known about pediatric cancer and immunotherapy, and we hope that these contributions eventually save other families from a similar tragedy.
For the most part, her quality of life was great, right up to her last 36 hours. She was still attending school the week before Thanksgiving, playing with friends, and hanging out on the playground. She even went out to McDonalds to have her favourite Chicken Nuggets for dinner on her last day. She came home to a slice of pumpkin pie, and asked for seconds of ice cream! She was braver than any 6-year-old should ever have to be. She smiled in the face of adversity, right up to her last day.
Arya passed away peacefully the next morning at home in her parents’ arms, just steps from where she was born. She was just 8 weeks away from her 7th birthday. She always had a big smile and was known for wanting to do everything again!
On the weekend of Bereaved Mother’s Day, our family was also treated to a special retreat at Camp Kindle. Kids Cancer Care offers a Spring Family Camp weekend, and a Bereaved Family Camp weekend. Though it felt uncomfortable arriving there without Arya, it was a weekend of family time and Arya was well included in our time there. We created a family rock portrait and painted and hid some rocks outside for Arya. We all enjoyed some archery, rock climbing, ropes course fun, hiking, camp games, and crafts. And in typical Alberta fashion, we had all four seasons and every type of weather during our 48 hours there!
Arya departed this world on October 15th, 2020. Her absence has left a void in our family that is beyond our ability to comprehend. Yet, her life has taught us so much, and we are incredibly grateful for the gift she has given us. In Arya’s passing, I have found that living a quality life and improving treatment options still drives me forward each day.
— Petra McDougall, Arya’s mother
P.S. Wasting Wishes is an illustrated children’s book, co-authored by sweet Arya! The story is a true conversation between Arya and her mother Petra. Fantasy, reality, and hope weave together a heart-warming story in this true account of a day in the life of a 5-year-old child living with a terminal disease. Purchase the book here. Proceeds from the book will be donated to Kids Cancer Care.