“Today is my birthday” said Roí. No, not the day I, his mother actually gave birth to him, but the day he had another chance at life. For it is today a year ago that he went in for brain surgery, where they took out a large tumor that only by sheer chance, luck or G-ds will had not spread. That is the day that life as we knew it would change forever.
It’s hard to describe to someone who has never been through anything similar with a sick child what it is like to discover that, not only your son has a brain tumor, but the tumor was malignant. That horrible M word. As someone said at the time, it’s like a tsunami hits you. The one day my son was playing soccer for 2 hours outside in the cold, the next day he was being rushed into CT scans and MRIs. He was a perfectly “healthy” kid or so we thought. The only thing we worried about was the fact that he may need glasses as he had been complaining his eyes were doing funny tricks, like making him see double. Why would we suspect that would mean he has brain cancer? Before the surgery, the neurologist examined my dear 8.5 year old boy. “I would never be able to tell he has a tumor if it hadn’t been for the scans” she said. For he passed every external neurological examination she did on him. Outward, he was an ordinary 8.5 year old boy – until today, a year ago.
A year. 365 days is a long time. A long time to be fighting for your son’s health, your family’s cohesiveness, your children’s normalcy, your ability to keep treading water. The first few weeks I could not breath. Every hour was a struggle. That famous day I stopped breathing was January 25th, as we saw him into surgery. We went for a long walk after, my husband and I. Just watching the city, life, the sun, feeling the air. Four hours felt like 4 years. It seemed like forever.
And then it was. Everything had changed.
Ro’i developed Posterior Fossa Syndrome as a result of the surgery to his brain. He had less capabilities than a newborn baby, for a newborn can still swallow. Roí couldn’t even do that. He couldn’t even swallow, he couldn’t lift his finger, or his head. He stopped talking, and started only moaning. He moaned so much in the hospital in those initial weeks of recovery that the lovely Arab grandmother from Gaza of the baby next to us, who also just had brain surgery, stood praying over my son’s bed for his health.
And that was only the beginning. The brain surgery, thankfully was a success. The surgeon, credited for saving his life, managed to remove the majority of the tumor. But he would have to recover in rehab. How long would that take? We asked. There was no reply. It can take a year, they said. It can take longer. And then came the diagnosis of medulloblastoma – a particular brain cancer. Not just one battle, but two – two battles my samurai would have to fight.
Now, after being in 2 pediatric oncology wards, full of other incredibly sick kids, we can say we were and are incredibly lucky. It hadn’t spread. It was standard medulloblastoma. The spine was clean, thankfully. But a tumor in the brain still means that there’s always 1% that remains. It’s brain cancer. And because of those crevices in the brain which the cancer cells could remain in, there is always a chance of return. The solution for that, as lucky as we were, was the next 56 weeks of intense treatment including radiotherapy (6 weeks, 30 sessions) and months of chemotherapy.
I find it very hard to describe, even now, after a whole year, of what it is like. What it feels like to watch your kid in pain. What it is like to see him throw up from the poison that is literally saving his life. What it is like to put him on the radiation bed, cover him with a mask, tell him he cannot move and leave the room – only to sing to him “Hakahol Yeheye Beseder” (everything will be OK) the song made famous by Cafe Shachor Chazak through a microphone. What it is like to watch him struggle to gain his control of his body – trying to sit up normally, to hold an ipad and even eat. What it is like to go from day to day not knowing how it will end – will today be the day he gets fever and you have to rush him to hospital? Will today be the day his blood counts drop, needing platelets and more? And what it is like to see him want to get back to being a normal kid.
I can only recall the very first few days post surgery. I had slept in Tel Aviv at dear friends who had opened their home to us. I was walking the short 15 minutes to Ichilov Hospital. I wanted to get there early before the doctors made their rounds, yet I didn’t know how to get there. I hadn’t asked directions as everyone was still sleeping by the time I left the house. Yet I knew more or less the direction, so I just kept walking. I didn’t know where I was going, yet kept putting one foot in front of the other and telling myself that I had to keep going, keep moving. And then it dawned on me. This is what I had to do. I didn’t know where this brain (cancer) journey would take us. But the one thing I did realize then, that I had to keep putting one foot in front of the other and keep going, keep moving forward. There may not be an end in sight, I realized, but it doesn’t matter. As long as I keep moving. Keep walking forward.
And that is what I’ve done. Now, for 365 days.
