When I was little, my sister Alexian used to make me my own Little Critter (by Mercer Mayer) books. By both re-drawing and tracing the original books we owned, she would create my own black and white versions so that I could colour them in however I wanted.
“Ophe, you have to colour within the lines.”
She would tell me this as she gently guided my pencil crayon.
These books were held together with scotch tape. Eventually, the scotch tape became waterproof surgical tape. While she was at SickKids, Alexian faced many obstacles; drawing for her little sister wasn’t going to be one of them.
On May 5, 1998 my sister was diagnosed with Acute Myeloid Leukemia. She was 10 years old.
The tricky thing about this period of my life is that I was so young – 4-years-old to be exact. Every year I grapple with foggy memories, often asking others to help me fill in the blanks. At that age, I don’t remember ever being sat down and told what was happening. One day, she just wasn’t home. She was at the hospital, in rooms with big glass windows that were often painted with our favourite Disney characters.
When any family goes through a difficult time, it makes sense that they would find comfort in togetherness.
This was no different at SickKids. But the hard thing was that I wasn’t always able to chase after Alexian like I did at home. I had to be careful of hugging her so that I wouldn’t tug on any of her wires. Sometimes, I wasn’t even allowed to hug her and instead I watched her through the door. Other times, she was tired, but usually that meant I got to snuggle up to her in her hospital bed, and we’d look up at her poster of Leonardo DiCaprio as Jack in Titanic. I didn’t know who this guy was, but I knew it made her happy.
That was a common theme during this time for me. I didn’t know why a lot of things were the way they were; I just knew things were different. If there’s one thing I do remember, it was her sheer determination to get through it all. We had to hold onto the flicker of hope in her eyes.
Because as if the cancer wasn’t enough, Alexian’s diagnosis came the day after our father had passed away from complications due to a hemorrhagic stroke.
While the team at SickKids was incredible and truly worked to find unique ways to support us, our situation was quite extraordinary. The grief around having a child go through cancer treatment right after the loss of a parent is astounding.
For my sister. For myself. And for our mother.
It’s for that reason that I truly believe in the Psychosocial Oncology Fellowship Program at SickKids.
At the time of Alexian’s treatment, I was so young. Looking back on it, it’s almost like I floated through that time. I was constantly passed from one pair of arms to another, never fully knowing what was going on. Never fully processing.
For my sister, it was waves of emotions from fear, to anger, to courage and back again.
For my mother, it was needing another rock so that she could be our rock.
For me, it was wanting to understand what was happening and overcoming the fear that someone else may not come home.
Family situations can vary greatly and with that comes complexities around how to handle the different emotions. We all needed very different things to figure out how to navigate our “new normal.” The team around Alexian at SickKids was amazing and helped us have more time together than we thought. But now looking back (and this is in no way a criticism of their wonderful work) I understand how much I needed a different kind of support that would help me (even at the age of 4 and 5) understand how to cope, how to still be close to my sister and how to be brave moving forward.
Everyone always talks about how time heals. Though time certainly moves a person through a difficult time, expanding the way we promote healing is a critical part of continuing the evolution of cancer treatment. The physical aspects are clearly integral, but so is mental health. This is true not only for the patient, but for their family as well.
It’s often said that healing happens from the inside out. I may have been young during Alexian’s treatment, but it’s clear to me now how closely the mind and body work together. I truly hope to see a day where we can beat cancer – through revolutionary medicine of course, but also through broadening our definition of what is needed to heal.
By: Ophelie Zalcmanis-Lai
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