The story of a bully (Cancer):
In January of 2012, after having just submitting a post on Facebook about looking forward to what was to be in store for my family, my son who was 4 at the time woke up having difficulty peeing. By the time I realized something serious was going on, it had been hours. Unable to fully express the level of his discomfort, I had no idea of the level. Eventually I made an urgent appointment with his doctor on this Saturday afternoon and we ended up at the nearby hospital with the thought that perhaps an appendicitis was the cause.
An ultrasound revealed that his bladder was at max capacity and so catheter was used to help with relief. With no real information, that we were made aware of at lease, we were transported by ambulance to a bigger hospital a half hour away! After a multitude of tests, and visits from oncologists (the mere sound of this put me in a panic)! On Friday 13th, 2012 my 4-year-old baby boy was diagnosed with a rare childhood cancer called rhabdomyosarcoma. What immediately followed, was the immediate start of chemo, many nights at the hospital, the insert of:
“A portacath is an implanted venous access device for patients who need frequent or continuous administration of chemotherapy.”
After weeks of chemo at the hospital a half hour away, my son and I eventually temporarily relocated two hours away from home, to Boston, MA for 6 weeks, so that he could get daily treatments of a specialized radiation called proton beam radiation (beams target the very specific location so as to damage fewer healthy cells).
Thankful for my village of supporters, my daughter who was 11 at the time, had a steady support of people who did their best to normalize her life during our time away.
Soon after my son turned 5, we were ready to go home. Contrary to what people (myself included) may have thought, for me the return was bitter sweet. While in Boston, we stayed in an amazing place called Christopher’s Haven, an organization that provides a safe space stay,support, and a close-knit community of other families living a similar nightmare. Please read more about Christopher’s Haven by clicking the link above.
I knew that no one back home could quite understand what I was going through and that thought was almost too much to bear. Christoper’s Haven which was conveniently located directly across the street from Mass General Hospital made early morning proton treatment appointments easier to navigate. Our goodbye to the strangers turned family were some of the toughest I’ve had yet.
As I think about my now healthy 11-year-old who is full of life and energy, I never take for granted that his story, our story is among those that I consider to be a miracle…. a miracle that unfolded right before my eyes.
Sitting here at 2:29am, it is dawning on me that this is the first time I’ve put this story on paper, and after all these years the waves of tears are still splashing right behind the floodgate doors. As poetry is a source of therapy for me, On October 10, 2012, I wrote this poem:
You are the definition of a bully and you terrorize your prey.
Not happy with your current list so you add new people every day.
You are like a monster; don’t care whose lives you wreck.
Your missions are so secretive most people don’t suspect.
You are oh so evil your fight is so unfair
Leaving all your victims with feelings of despair.
You are very sneaky breaking all the rules.
Even weapons can’t totally rid you because you hide, pretend and fool.
You are a serious villain unleashing with your entire arsenal.
Picking on so many you chose my son you made shit personal.
You are such a coward like the lion on the Oz.
You think you have the power but not more so than our God.
You are one of the greatest murder mysteries even you’ll one day be solved.
I pray you don’t leave too many more casualties before you are dissolved.
You… are… Cancer…
Even after all of these years, this topic has a way of rattling me to the core. Despite the advice I have given myself many times, I have not sought out the help of a therapist to work through my emotions, and like I have felt the need to do in order remain the focused mother and fully present mother that I must be, I have always held the depths of emotions captive just underneath the surface.
While the poem was the beginning, and this post can be considered a middle, in the end, my plan (which I have recently begun working on), is to write a book about Sabir’s (our) cancer story. This time as I write and look back through all of the documents, cards, letters, notes from hospitals and doctors, detailed calendars etc. that I’ve kept locked away, I will unlock the emotions that I’ve not allowed myself to access and will finally give myself permission to have a good cry.