Four years ago today, Ro’i went in for brain surgery. It’s a day we celebrate. We praise the doctors in Jerusalem that sent us to the experts in Ichilov Hospital. We praise the miracle surgeon and all his oncologists, rehabilitation specialists, and medical staff. While today, four years ago, completely changed our lives forever, it is also the day that Ro’i was given a second chance at life. As he likes to remind us for a few days leading up to January 25th, “we prepare to celebrate”.
At least once a year, on his “birthday,” I allow myself to look back to see how far we have come, what we have been up to this last year, and how much we have achieved…
Like everyone else, we’ve been dealing with Covid-19. And it has been all-consuming, just like it has for everyone else. But while we’ve been in lockdown for much of the year and being homebound, it hasn’t been depressing. I often remind myself (and my kids) that we are OK as long as we are all healthy. Even if it means dealing with bored children, reduced workloads, or the opposite and having to juggle work and full-time homeschooling – we are healthy, we are home, and most importantly, we are together.
We passed some incredible milestones too. Ro’i completed primary/elementary school. To think he was in third grade when we started this cancer journey and he now graduated sixth grade with his peers – even during Corona, was an incredible moment.
Without a doubt, starting middle school has been one of the biggest challenges this year. It is hard enough in typical years for the most ordinary of teenagers. But beginning a new school means making new friends, and meeting new teachers and school administrators. They do not know where you are coming from, haven’t taken this journey with you, and do not understand how brutal childhood cancer is or the side effects of its treatment. This continues to be an incredible hurdle that he continues to overcome.
Not surprisingly, he is overcoming these hurdles in his amazing, modest and determined way. We still go to Alyn, continue with physiotherapy and speech therapy, and hope in the next year to go back to occupational therapy. The physical challenges continue to affect him, but he doesn’t let them constrain him from being this regular 12 year old. He has learned that, although it may be hard, for example, to pick up the tongs at the bakery to select his biscuits (something that any other 12-year old takes for granted), it is OK to ask the employees there for help.
He is learning that having had brain cancer isn’t something to be embarrassed about. That while he doesn’t need to “flaunt” it, he doesn’t need to hide it either. That when he strikes a goal at soccer, it isn’t just himself that celebrates but his entire soccer club will cheer and enjoy that moment with him. He also realizes that other regular kids have school aids or need additional assistance, not just ones who have had cancer. He is beginning to understand that the real, big world out there doesn’t care that he’s had cancer. Yet, he still grasps the profundity of what it means to have gone through a life-threatening illness, where you can express that you were scared of dying. And he has shown great maturity at knowing what his strengths and, most importantly, his limitations are, in the most complex of situations.
As a family, we have also had some profound, defining moments this year as we witnessed just how much of an impact cancer has had on all of us. After two years of scans, tests, and medical follow-ups, his little sister was finally diagnosed with Chronic Pain Syndrome, or what would be known in adults as fibromyalgia. The professor who diagnosed her said he’s only seen this in young children due to trauma. He was under no doubt that in her case it was from watching childhood cancer first hand. Navigating that, and how to treat it, had to be handled very delicately. On a personal level, for the first time in three and a half years and as a direct result of Covid, I was forced to take a step back, take some deep breaths, redefine my focus, and had time to weigh in on everyone’s needs and emotions.
Looking back at the past four years – it seems like his surgery was so long ago, and at the same time, just yesterday. So much happens in one year, and so much we’ve achieved. For better and for worse, we’ll forever have a ‘new birthday’ – as hard and traumatic a time as it was, it’s a day that forever symbolizes ‘a gift.’
An acquaintance I met almost a year ago said that she hopes when Ro’i goes to middle school, he’ll be able to put cancer behind him and carry on as normal. She didn’t intend it as an insult, but those words still echo inside. I don’t think that any family who has experienced brain cancer can say you “put it behind you.” Four years on, however, and just when we’ve received another MRI scan result of “stable,” we won’t fully ‘put cancer behind’ us, but we will continue to celebrate his life and achievements on his ‘new’ birthday.
Today, January 25th (2017)
