We owe it to him to stand up and stay up.
For the past 11 years, we have been battling an invisible enemy that has chosen to change our lives irreversibly, and in particular that of our son Noah (12). Cancer decided to take us into an unprecedented emotional and stressful whirlwind. Cancer has decided to test our resilience, our will to live, our will to survive... And we're still standing.
There's the visible battle, which remains obvious to our family and friends, but there's also the invisible battle, the one that this enemy insidiously sets up day after day.
The visible battle is already so devastating. Your child has to endure, with a great deal of patience, the medical appointments with their flood of good and bad news. He has to accept the succession of consultations in the various departments, with his fears and misgivings, questioning you about the sense of the examinations he is undergoing and the choice of treatments he is going to undergo. He expects you to validate the choices made by the medical profession, even though you, like him, are undergoing this situation.
Then we have to accept that he will be injected with highly toxic products to counteract his illness, watch him suffer in his flesh and vomit his meals. We must also convince him that he must return the following week for his own good.
Then there are the surgeries that frighten and terrorize him. The pain that follows and the various prohibitions during his convalescence. He'll have to accept that he's different, that he has weaknesses and that he'll have to live with them for the rest of his life.
Your family and friends see, understand and admit this visible struggle, but there's so much more to bear, all that can't be seen.
At the outset, there's the guilt of a mother who wonders alone about her responsibility, about what she might have done to "transmit" this genetic mutation to the apple of her eye. This guilt, which will be repeatedly denied by the medical world, is inside her, following her every day since the terrible news.
Then there's a couple trying to support each other without adding to the destructive burden their partner is already carrying. One day in November 2011, our family went on a rollercoaster ride and still hasn't come off.
We have been forced to lie regularly about the state of our son's health. The people around him only want to hear good news, news that leads to better health.
Answering the simple polite question "How are you?" honestly is no longer an option. Your interlocutor doesn't want to hear the reality of your situation, it's too hard to hear.
With all the love we have for our child, bad news just isn't acceptable. Even if it's real.
And then there's the administrative and financial battle! Defending your child's interests is not as straightforward as you might think. It feels like a double whammy.
In addition to a medical battle that's wiping you out, you have to find the energy to continually fill in forms for health insurance, disability insurance and social services. It's exhausting.
In this invisible battle, there's this question that gnaws at you constantly, gently and perfidiously, every day whatever the time of day or night, whether you're near or far from your child, whether you're in a reassuring or worrying period:
How is my son?
We suffer for our child. Watching him struggle for 11 years is unacceptable and heartbreaking for us as parents. But we are lucky. We're lucky to be the proud parents of an incredible child who sings, dances and laughs every day. He teaches us every day to enjoy this beautiful life.
Financial stress and the fear of not being able to provide financially for medical imponderables are devastating factors in our lives.
Thanks to Zoé4life for your supportour son thanks you. Thanks to you, his parents have undoubtedly gained a few months of life.
We are on our feet and will remain so.
Lore, Marc and Noah
It's thanks to your generosity that we're able to provide families with the financial support they need to make their daily lives a little easier.
