The start of a new year always brings change, growth and new beginnings. For 9 year old Grace and her family, it wasn’t the kind of change they had expected. Grace’s mother Sarah recalls how a few months prior to January 2018, her daughter started complaining about pain in her legs and was looking progressively more unwell as time went by: “Most kids in elementary school have some kind of cold or fever in December, and it can take a lot to get a busy mother of four to the emergency room. Some days were okay, and over Christmas everything seemed to be fine, but on New Years Day, things took a turn for the worst. I called one of my friends who is a nurse and she recommended I take Grace to the emergency room. Feeling lethargic and dizzy, I thought she needed fluids, so I took the advice and rushed her to the ER. It was a few hours of waiting, but I was persistent and refused to leave until the doctors did something. When a blood test was taken, they immediately knew something was not right – but didn’t know what it was. We were admitted that afternoon, and they continued to run tests that evening and the following day. After spending 2 days and nights as an inpatient, a bone marrow aspiration was done. The doctors advised me that they would have the results the following day. Just a couple of hours later they were back… and I knew there was something seriously wrong. They told me she had leukemia.” A few days later, Grace started her first chemotherapy treatment. It was the beginning of a very long protocol, lasting over 2.5 years.
For many families, the burden of cancer can feel heaviest after the initial shock of diagnosis. Sarah called the first month “horrible and scary.” Put simply, your whole world shatters; your brain almost shuts down and the only thing that matters is making sure that your family is okay – you don’t even do things as simple as picking up the phone. Sarah told us that her phone was constantly ringing. Friends and family wanted to check in, but since her priorities were elsewhere, she would end up choosing one or two people to send messages to, who would then keep everyone else updated. One friend would show up every day to walk her dogs and leave them some food, while Grace’s Aunt would come by to help keep the house clean and make sure the dishes didn’t pile up too high. She did a lot for them, even taking many afternoons off work to be there after school and run the show. “I owe her everything,” says Grace’s mom, “it was great for my 3 other kids to have her around.” The family expressed tremendous gratitude for their support system, noting it is not always easy to ask others for help. Your field of view narrows down to a handful of crucial concerns, so much so that you don’t even know what you need or when you need it. “Sometimes friends would show up with food or just to shovel the sidewalk. As overwhelmed as I was in taking care of Grace, I simply had no capacity to ask for what I needed. You really have to understand that nothing else in the world matters when you hear that your child has cancer. From that moment on, the well-being of my 4 children was the only thing of importance for me.”
Sarah had 3 other kids to support during that difficult time, and they were an incredibly tight-knit group even before Grace was diagnosed. Grace’s younger brother was an avid soccer player. After Grace started her treatments, he took up parkour and continues to ride his scooter, shoot hoops, and play with his friends and pets. Grace’s older sister who is now 19 and studying at MRU, is Grace’s best friend. Sarah says they have a very special relationship. She was a competitive gymnast and even coached the sport for a few years. Grace’s creative and talented oldest brother is now 21 and has started his fourth year at AUArts. Our little hero Grace, who just turned 12, loves school, art, and is known for her creativity, just like her siblings. She was a competitive highland dancer before diagnosis, earning her Premier status shortly before her 9th birthday. With the Highland Dance Canadian Championships being held in Calgary in July of 2018, she managed to start dancing again 3 months into treatment. Her goal of competing at Canadians that summer was realized despite her grueling chemo schedule. Her commitment to dancing and her courage to continue doing what she loves, despite battling cancer, is admirable to us.
For many families, the process of treatment can be quite tumultuous and wearisome. Grace and her mother were no exception, often spending 3-4 days a week at the hospital. “It’s a lot of time away,” says Sarah, “Some days were quicker than others, and we were fortunate to have most of her hospital days as an out-patient of the Oncology Clinic. There is however, always a risk of complications. One time, she had an anaphylactic reaction to one of her chemotherapy medications. There was another day when she vomited every 15 minutes from the time she woke up until late in the afternoon. Despite being so ill, she still had to undergo a general anesthetic for a lumbar puncture procedure, to have chemotherapy injected into her spine. Grace had 8 different types of chemotherapy during the course of her treatment. She was on a lot of different pills and steroids at various times. Once the initial course of intense chemo has finished (about 10 months for Grace), kids follow up treatment with scheduled maintenance, which for Grace, lasted 1.5 years. Maintenance is typically less vigorous than chemo treatments, yet Grace experienced some terrible side effects. I remember she endured many high fevers, which resulted in late night emergency room visits. She had kidney stones, complications with blood sugars, and her bones started fracturing as a result of the chemo. When we realized she had a stress fracture in her ankle (that only showed up during an MRI), the doctors ordered a full body MRI and discovered 4 additional leg fractures – just from walking! It’s unbelievable how much long-term damage can be a result of chemo treatments.”
While it was a difficult time, Sarah praised the team of doctors and nurses at the Alberta Children’s Hospital who helped Grace; they constantly shared data with other members of the team, made sure that the kids were on the best treatment plans and listened attentively to the parents whenever they noticed something wrong. Mothers especially tend to get very hands-on in the process of their child’s treatment; Sarah was very knowledgeable and even learned how to troubleshoot the system, so they could do chemotherapy at home. “Being a cancer mom involves a very steep learning curve,” says Sarah, adding that she and a group of other cancer moms refer to themselves as the “Kickass Mom-cologists” at the hospital.
Sarah is a Kickass Mom indeed, and she has been an incredible support to her kids, despite all the hardships she’s been through in the last few years. She was a stay-at-home mom until a year before Grace’s diagnosis, while going through a divorce. As a single mother, her plan was to go back to school to try to regain some financial stability, but of course, once Grace got sick, all plans were averted. She was barely getting by financially, as expenses have a way of adding up quickly and unexpectedly when you have a child in the hospital. “Things like daily parking became a major burden. The fact that HFHC was able to help us with hospital parking was a huge deal, as not having that expense accumulate on a credit card was such a weight off my shoulders. Sometimes we would end up in the emergency room in the middle of night and the 24 hour passes provided got us in there twice in one day, which was always helpful.” They heard about Helping Families Handle Cancer from Laura, a social worker at the Children’s Hospital. “[Laura] was a real saviour, I don’t know what I would have done without her. She hooked us up with HFHC, which was brilliant because of all the things they’ve paid for. When Grace was diagnosed, Laura was the first person to make contact. Grace misses her, she misses seeing everyone in fact. The hospital staff quickly became like family.” Social Workers are the ones who connect us with the families and tell us who needs help the most. Our organization is there to give pockets of support between hardships, while families are trying to land on their feet during their time of crisis.
It took Grace a few months to achieve remission (the stage of a cancer journey where there are no more active cancer cells in the body), but we are happy to hear that Grace received her last chemotherapy medication on April 27, 2020! While remission can be a huge and happy milestone for a family, it does not signal the end of their battle with cancer. There are many long-term side effects, many of which their family knows little about, but Sarah says that they are still just taking things day by day and looking towards the horizon. When asked about Grace’s future, her mother hopes first and foremost that she is physically strong and does not feel too many side effects from the chemo treatment she received. “Emotionally, I know she has grown up past her 12 years, as undergoing cancer treatment is unbelievably difficult and serious. She personally has gone through some major life-altering situations, and witnessed many other children going through their own.” Sarah shared how Grace was able to make some friends during treatment, namely a boy named Cole, who she stood by and supported, while he was undergoing his treatment. Grace was given a special gold key (as a symbol of courage & hope) by a friend who’s mother had passed on from cancer. Upon finishing her own treatment, Grace felt compelled to pass the key on to her friend Cole to help him throughout the final year of his own treatment. It warmed our hearts to learn about this moment of compassion and camaraderie between two little warriors.
“[Grace’s battle with childhood cancer] will certainly affect her career choices, how she moves forward becoming a teenager and an adult. Cancer changes you. It is a terrible thing, but there can be a lot of positives in the way you see the world moving forward. When your child is diagnosed with cancer, your priorities change instantly. You don’t take things for granted, you appreciate people and the little things in life a whole lot more. ” We share Sarah’s hope that Grace fully overcomes her condition, and is able to share her compassion with the world, in whatever way that special gift manifests.
We’d like to thank Sarah for taking the time to share her family’s journey with us. We admire and appreciate her bravery. We do what we do for families like hers, and knowing that we were able to make a difference in their lives is what keeps us going.
Written by: Alex Duica (Board Member)
To make a donation to help other families who have a little one battling cancer please visit: https://helpingfamilies.ca/donate/