Today marks two years since Ro’i went in for brain surgery, when they diagnosed his tumor, his brain cancer sentence. What does it feel like to be two years after the day that changed our lives forever?
Carla, a grown woman who suffered from neuroblastoma as a baby described it so well – 51 years after her childhood cancer diagnosis…
“The thing is, Childhood cancer isn’t just something I can move on from, walk away from, or never look back on. Instead, Childhood cancer is a menace, a horror story that holds the kind of action that not only keeps me on my toes but pulls me to the edge of my seat time and time again. It is a constant reminder with every turn, and it can shake me to my very core! And yet, there are those moments when even in the midst of knowing that freedom isn’t absolute, that the past could still come back to bite me, I celebrate.
We’re not 51 years. But two years is still a long time. You think after all this time that you’ve had enough, that it may be the end, that you can just “carry on”. I often ask G-d, “Can’t we just put this experience behind us like some terrible nightmare and just go back to our old, innocent lives?”
The answer is plain and simple. No.
We can never put this experience behind us and just “carry on”. Especially Ro’i, who will have to carry the damage with him for the rest of his life. Yes, he fought the cancer, the tumor that was in his brain. But he’s still yet to recover other aspects of the brain that was lost to the cancer, the surgery and the trauma. So the battle continues. His own personal battle to regain his life, his normalcy. And like it was right at the beginning, his battle is our battle. We continue to fight right there with him, for him.
That means the juggling continues: between work and school, between the various doctors’ appointments for the constant monitoring, the assessing of side-effects of the treatments, the MRI’s that will now thankfully become biyearly, the blood tests, and the different therapies (some of which perhaps will now have to continue as private patients). Between the other kids other normal needs – which are equally just as important but not as a result of cancer, and your own, between running a household and preventing yourself from being run to the ground.
So after two years, what have I learned?
- I have learned that life can change forever, in a split second
- I have learned that life can be so brutal it goes beyond pain
- I have learned that among the pain and tears, there are moments of such real happiness
- I have learned that whatever your pain, there is always someone next to you hurting more
- I have learned that through all the cruelty and hatred, human nature is essentially good
- I have learned that mundane is beautiful
- I have learned the meaning of real kindness
- I have learned that even after four babies, I did not know what real tiredness was
- I have learned that it is OK to ask for help
- I have learned that accepting help is about being kind to yourself
- I have learned that if you do not take care of yourself, you cannot take care of others
- I have learned how to fight for your loved ones like your own life depended on it
- I have learned to trust your gut, cause your kid can’t advocate for himself like you can
- I have learned that it is OK to question, just don’t expect any answers
- I have learned there are some things in life, we will never understand
- I have learned that life doesn’t give you choices, you just have to accept the reality
- I have learned that life is ultimately beyond our control
- I have learned that what is in our control becomes a lifeline
- I have learned that life is mostly about attitude
- I have learned that “‘seize the moment” can just be about drawing with your kid
- I have learned not to look at tomorrow, but just take each hour on its own
- I have learned that today is not a given but a gift
- I have learned more about love than I thought possible
I have also learned….
You do not know real fear until you’ve looked into the eyes of a child when he asks “Am I going to die”
You do not know real anger until you’ve heard the screams of a child unable to be “a normal boy”, traumatized from his journey
You do not know real frustration until you’ve stood watching when your child tries to do that which his body won’t allow him and express that which he cannot put into words
You do not know real helplessness until you’ve sat by your child, watching him go through the worst hell on earth, and cannot do a thing to help.
Two years. The battle continues. The pain continues. The fear continues. So many lessons I wish I hadn’t had to learn. So many challenges we’ve had to face. So many challenges that still lie ahead.
In the meantime, in the words of Carla, the brave Childhood Cancer survivor of 51 years: Even in the midst of knowing that freedom isn’t absolute… I celebrate. Two years.