International Childhood Cancer Day
Today is International Childhood Cancer Day. Last week it was International Cancer Day, which might make this feel redundant. Not that anyone would fault the world for creating more awareness of such an awful disease.
I have a dear friend that is a nurse at the Princess Margaret Cancer Centre in Toronto. When Violet was diagnosed, I immediately reached out to ask for any advice and support – guidance as to how to navigate this impossible situation. His response mirrored that of our Oncology team. Childhood cancer is a different beast than adult cancer. It’s difficult to compare the two. And his experience was with the latter.
At the time, I didn’t understand what that meant. I knew they were trying to communicate that I should let go of any scary expectations I may already have about cancer. We are all touched in some way by this disease. We all have family or friends that have suffered or passed away, and this fear lingers when you hear the big “C” word. So, when your own child is diagnosed, others want to reassure you that you don’t need to relate the same fears to the equation.
After nine months of living with this diagnosis, I have a much better understanding of what it actually means, or, at least, what it has meant to our family. To me.
Childhood cancers are typically different than adult cancers. Violet’s, in particular, is a form of the disease primarily reserved for children under five, rarely occurring in older kids (Violet was eight at the time of diagnosis). Childhood cancers are also generally highly aggressive, and often identified once the disease has become significantly advanced. Treatments are therefore extremely intensive, and because their growing bodies are able to tolerate higher extremes of vehemence, children are often subjected to “poisoning” of the body that brings about incredibly brutal side effects.
No parent ever wants to witness their child’s suffering, but the suffering that comes with cancer treatment is a special kind of agony. It is the ultimate feeling of hopelessness and desperation. The risk vs. reward comparison is so small that the terror of each option mocks the other – the prognosis of survival without treatment is non-existent, but treatment itself comes with a laundry list of life-threatening perils and side effects that one must spend the rest of time worrying about. Your child’s mortality is forever put at the forefront of your consciousness.
The logistics of treatment, too, bring their own unique stresses with childhood cancer. With neuroblastoma, Violet’s protocol involves 18 months of full-on, intensive in-patient care. For Violet especially, we have spent almost the entire nine months so far admitted to the BC Children’s in patient Oncology ward, living in a tiny room together, rarely leaving one another’s side. Because of this, parents like us that have additional children must relive their own “Sophie’s Choice” daily, choosing to be with one child over the other out of necessity, constantly fearing the message they are instilling that the other child isn’t as “important” or “loved”, not being able to explain to them (or wanting to) the god-awful reasoning behind the choice (Sorry Lucy – the reason I can’t be with you tonight is because Violet is throwing up her own throat lining and is scared she is going to die).
As an aside, I watched Dumbo the other day with Violet, and the scene where the mother is cradling Dumbo through iron bars for a brief moment before waving a solemn trunk at him as he slinks sadly away from her just about levelled me to the floor. Way too close to home.
During our first week of this, many of our friends reached out to offer to set up a fundraiser to support us on this journey. Pride, or denial, or just plain old discomfort with the idea of taking anything from anyone, kept us from accepting the offer. But it doesn’t take long in a situation like this to realize that without help, there’s no way this is manageable. The level of focus required to care for a child in treatment goes well beyond what I expected (I thought it would be easy to continue to work in the hospital while we “sat around doing nothing” all day – um, wrong-o), meaning that I lost my income. My parents, too, had to quit their jobs, arrange for others to watch over their home and belongings, and move to Vancouver to support us and care for Lucy. Matt, too, has had to find ways to juggle work responsibilities to make the equation work. My brother and his wife took on our dogs, which, in the end, suffered multiple medical issues of their own while we have been in here, resulting in the impossible decision to put our dear boy Max to sleep.
Perhaps one of the most difficult aspects of this beyond the suffering Violet has endured of has been the psychological and emotional pressure it has put on all of us as individuals and as a family. It is difficult to explain what it is like to go from living “normal”, separate, independent lives to moving into a small room with five beds and three generations of family members for months and months on end. Couple that with COVID protocols that require you to wear a mask at all hours of the day, and shared cooking facilities that guarantee a daily discussion with others about the severity of their children’s life-threatening symptoms and prognoses, and things start to feel…claustrophobic.
Each family has a different set of circumstances in these situations. Some parents are able to both leave work and find additional financial support to tackle the aspects of care in tandem. But for others, this isn’t an option. For us, despite how incredibly lucky we are that Matt is (so far) able to continue his work, it has meant a momentous division of our family unit. In the past nine months, I could count on one hand the weeks we have been in each other’s presence. Matt has been living in hotels, a trailer, on friend’s couches (of which we could not be more grateful), and wherever he can find space to sleep. Due to the rules at Ronald McDonald House, unless he was staying the night with us, he was not allowed to enter the premises, and because he had to work during the day and my parents were staying with Lucy, this meant he was rarely even allowed visitation rights.
So the emotional build-up has been deep, complicated and painful – a psychological maze of gratitude and guilt, thankfulness and resentment, fear and forgiveness. One thing is weighted against another, over and over, and it always feels a bit like a lose-lose scenario. One the one hand, we are deeply, unequivocally grateful for having the support systems we have had to make it through this. On the other, relying on others has meant separation, a sense of obligation and shame, resentment of role reversals, and a deep exhaustion from never, ever having a sense of personal space and independence.
This is the front nine, too. When we return home, we have to contend with the transition back – the “reverse culture shock” that comes with trying to find new roles, identities, and lifestyles “after treatment”.
Many of these things can come with adult cancer contexts, no question. Adult needs care, too, and their challenges are unique and significant. But the community required to support the matrix of needs in a childhood cancer diagnosis is huge. The situation is layered and nuanced. And, on top of it all, childhood cancer destroys innocence in a way that nothing else can.
Matt and I have spoken over and over again about how hard it has been to accept the kind of help we have had to during these times. As an entrepreneur at heart, Matt in particular believes in accountability and responsibility – in owning your own destiny and not asking for handouts from anyone. For me, work is a way of ensuring my own independence. Of feeding my sense of freedom.
When you have a child with cancer, “work” changes. Everything changes. You have to see things from a wider lens, a heightened perspective. It’s too complicated to sort out all the details. I have found that my need to micromanage has become my absolute worst enemy. Trust becomes the strategy of the day – the lesson to be learned.
For the rest of our lives, Matt and I will be dedicated to giving back. Not because we feel guilty, or feel obligated, but because we understand things in a new way. Childhood cancer has given us that wisdom. Life is about opening the channels to love and generosity and compassion. That’s where the juice is. That’s where the answers are. In a situation as complicated and disempowering as this, you’re forced to see things in a new light. We all want our lives to mean something, and in the suffering of others, we can find solace in knowing we can contribute to making another life a little bit easier, and nurturing the message that we are “all in this together”.
Violet is my child, and I am suffering a unique fate, but she is also a child of our community. Of this world. She is an example not only of the hardships that exist in the human condition, but the opportunities we have to love and support one another. To appreciate the time we have here, and how we can foster kindness and love and giving.
This is how I see it – today is a day to acknowledge all of these things. To hold those that are suffering in our hearts and appreciate what we have in front of us. To consider the “worst thing that could happen” - a child with cancer – and know that this isn’t the end of the story. We can all be a part of healing. None of us is immune to hardship, and if these little angels have anything to teach us, it’s that there is always hope, and always more strength below the surface than we expect.
Today is a day, for me anyway, to celebrate, for we are always making things better, together.