January 7 , 2014, when I am given the news about my little warrior Marouane, the first reaction I have is “No, no, no… It can’t be true. I’m here to see if my son has a broken knee or a fracture.. No you can not tell me his. So he has had a sore leg over the Christmas holidays, but he’s still running and jumping like all children his age and if I were to run to the hospital every time one of my kids has a little boo boo I would be in the emergency department every day.
“Ma’am, there is an aggressive mass that is eating away at your son’s knee”, that’s how I learn that my son has an osteosarcoma.
As soon as she spoke those words I understood, but I asked: “What do you mean, there’s something eating away at my son’s knee?” and I see the look on her face – she must be a student doctor – and I ask: “You’re thinking, what, it’s cancer?” She is staring at me and with a very small voice says “Ma’am, we don’t think, we know. We can see it on the X-ray.”
And then the earth opens up beneath my feet, and I want to scream “No, not him, it’s too unfair, why? He’s just a child! ” I feel dizzy, my legs are shaking, the doctor is still staring at me not knowing how to react because she’s afraid I might explode… Then I go to my daughter waiting outside of the room, to tell her… Just moments before we joked about it, she and I, we said “Imagine it’s cancer” and laughed and said “Yeah right, just kidding, it’s a bump that’s all.”. How could we know that we’d guessed right? I take her aside and tell her that we weren’t wrong about our guess, I can’t say another word, she just looks at me and falls into my arms crying because she just can’t understand either.
How do I tell the rest of the family, how will I handle all this? Because the moment you know, the moment you get that diagnosis, everything starts to happen very quickly, and especially in our case, because – here’s the first blow – the tumour is quite aggressive and is already huge (15 cm in diameter on the x-ray).
Many, many tests and scans are done in the next few days. The first day, well, you have to digest the news, and try to understand what is going on, the long explanations of the steps that will follow, the MRI, Ct scans etc, and they tell you that your life is now completely changed, cancel all your plans… A biopsy of the knee, and then surgery to install the port-a-cath for chemo and other medications.
After a few days or maybe even a week when all the tests are done, the second blow: they take me to an office to tell me that there are metastases in the lung, seven in all. They say that regarding my son’s leg the worst case scenario would be an amputation, but we’re not there yet, let’s start with the chemo and see how it goes. Tons of chemo is planned, and the surgeons will consult with other experts and make a decision as we move forward in the treatment. Long term effects for Marouane will be fragile health, infertility, and tons of medication for the next 9 months. But there’s hope, there’s still hope for a cure, so we’re going to fight – no way am I losing my warrior.
And so the treatments begin, and with that, all the complications… Because cancer spares no one in the family, the rules to keep him alive impact everyone, it’s not just medicine and feeling sick.
First thing is, no more swimming in the public pool for three years, too many bacteria. Yes, that’s right 3 years, and no movie theatre no shopping center, public places, trains, travel, anywhere there are lots of people… And we’re a big family, so we’re warned, any runny nose in the family, and sign of illness at all, any cough, could mean a catastrophe for Marouane. Because if Marouane gets a cold, it’s not just a cold, he will have no immunity once the chemo gets started, so he’ll need antibiotics and hospitalization at the slightest symptom…
No sand box, no carpets, no pets, no plants at home and I’m sure I’m leaving out a few things…
We’re told to make absolutely sure he never hurts himself, because that would just make things worse.
Food, there’s a whole other story. I’m told that chemo alters a person’s taste, that things will change and not taste the same to him, that things he loved before, he won’t like anymore, but even more importantly, certain foods he cannot eat when his immunity levels are low, which will be almost all the time… Food also carries bacteria, so a long list is given to me about what to avoid, and forget McDonald’s or most restaurants…
Instructions on special baths because the chemo will cause body sores, some inside his mouth so he’ll need a special treatment for that, because it hurts so much most kids stop eating, and then they need to be fed through an I.V…. The list goes on…
There’s so much information to be absorbed in so little time I have constant headaches from it all.
And so begins the first chemo after one week of tests, my poor little boy celebrated his eighth birthday plugged into the I.V. getting chemo and throwing up.
Time goes by, the treatment moves along, and so comes the third blow: they tell me that despite everything they have tried, they will have to amputate his leg. My reaction is like the first day all over again, I just can’t stop thinking: “When will all this bad news end, and how am I going to tell him, how is he going to react.” I almost can’t stand it.
So we decide to not tell him for a month, since the operation can only happen one month later. But finally the day comes and we give him the news, and the doctor is wonderful, she comes to his room and explains it all to him, that they need to remove his leg to save his life. But when Marouane cries out that no, he doesn’t want to, I can see the tears forming in the doctor’s eyes, so I have to take over, and tell him that if his mom and all the doctors have made this decision, it really is because otherwise we would lose him forever, and that I can’t lose him. I try to turn it around and see a positive side, telling him he’ll be like the cartoon character Harold in Dragons, except that you won’t actually have a dragon but we’ll find something else!
So we accept the news, well, we have no choice anyway do we? We keep moving forward with the treatments. Back and forth between the hospital and home, because of course you can’t leave your other kids alone, but you can’t leave your child alone at the hospital either, financially it’s a disaster, emotionally it’s extremely difficult for the whole family, everything has changed… No plan can be counted on, nothing is like it was before. All of us make huge sacrifices because cancer is not just chemo and feeling sick, it’s also no school for Marouane even though he loves it, no playground, nothing he used to do… Those who know him know he’s a happy child full of life and energy, so this is all extremely difficult for him and for all of us around him.
Nine months of treatment they tell us, and then we have to wait five years before we can consider him cured. For me the day my son turns 18 I’ll celebrate, I’ll call it a victory.
That’s our story, but every family facing childhood cancer has a story, ours is only one of many. Some kids have to go halfway around the world for their treatment, some kids we met at the beginning didnt survive, some are in remission, some are gone, and we are all together in this battle, even if each story is different. The hospital becomes our second home, the other families are our second family.
Luckily the medical team here is amazing, they are doing absolutely everything they can to save these kids, they suffer when we suffer, they are living this with us.
And so that is basically what childhood cancer is, although I’m sure I’ve forgotten a lot…
I’m willing to talk about it, talk about my hero and share his story because I think it’s important that childhood cancer is talked about and known, yes it’s sad, but we have to lift the taboo about talking about a hard subject because that’s the only way research will move forward.
My story, Marouane‘s story. Still in the battle, never giving up.
As told by Marouane’s mom Stephanie to Natalie Guignard for Zoé4life. All rights reserved. September 2014.