A dark hospital room illuminated only by the dim light emanating from the IV drip he is attached to day and night, the silence interrupted by the odd beeping of the machines when the quiet flow of the “toxic cure” is blocked. A frail, pain-stricken body tossing and turning in bed restlessly, hugging a brown or blue monkey in search of a sense of security.
The concomitant loss of the sense of time and space. The past reset since that fateful day when you walked into the room where you are told by a caring doctor that the “entity” they discovered is malign; the future vanishing into thin air when you realize that all you can do is to go through one day at a time; eternally trapped in the present, trapped into now and here, trying to make the best out of it, or to avoid the worst of it. A calendar dotted not by festive days, but by weekly or monthly intervals, depending on the type of treatment he is currently on, in between the start and end days. An episodic existence indexed on “good” times and “bad” times, an itinerant life where “being home” is a luxury you cannot always afford.
Notes detailing which medication needs to be given when and at which dose, a list growing uncontrollably as side effects of chemotherapy kick in; text messages between mamma and baba outlining the “symptoms of the day” or offering a tally of the quantity of food and liquid he has consumed, accompanied by a smile when the figures are relatively high; the unique joy you feel when the number of meds he is on is going down while the quantity of food he consumes is increasing, sometimes to the point where you enjoy the “very bearable lightness” of not counting.
The dismal realization, which mostly hits when you are alone or while watching the little angel sleeping, that this is his “normal” life, the only life he has known – a life where he can only attend birthday parties of his friends or take a swim in the pool when his blood counts allow for it; where plasters or bandages covering the countless punctures in his frail body turn into an object of obsession he cannot live without. The intense feeling of revolt and the profound anger that gradually become the “wallpaper” of your existence, running in the background of everything you do; the often unfulfilled quest for compassion – not differential treatment or pity. Just pure, simple compassion.
All this combined with a firm determination to persevere against all odds, defying statistics and resolutely chasing miracles. Encouraged by his superhuman strength, his “epic” struggle; rewarded by his boundless happiness and his disarming smile; motivated by his eagerness to turn every ordeal into a game where the good guys always win, where the Green Ninja defeats the Snake or the Great Devourer, where Minecraft Alex triumphs over the Skeleton or the Zombies. A hero who doesn’t mind learning to swallow pills while his peers play hide and seek in kindergarden; a little big man who thinks being bald is “cool”; a “peaceful” warrior who ponders over his next lego project while surrendering his teeny-weeny finger to the nurse for his 1500th blood test.
A boy with a will to live like there is no tomorrow. Maybe there is no tomorrow. Maybe he knows something that we, adults, don’t know. Maybe he has a mission, a purpose to show us all that life, however fleeting it may be, has a meaning that transcends time and space as well as the worldly and the spiritual.
For us, his family, he simply means “love”. But a love like no others.