An Update…

Sakshi Verkot – Forever 16

It has been more than three months since I last posted anything out here. A lot has happened since that post. I have lived a lifetime and died a million deaths.

Over the last few months, I had shared glimpses of my daughter’s and our journey as she fought a rare and aggressive sarcoma called Desmoplastic Small Round Cell Tumour (DSRCT). The prognosis for this type of cancer is rather dismal yet buoyed by her initial response to treatment and her gung-ho, sassy spirit, we had believed that she, and we, could beat it.

We were wrong. The cancer spread to her cerebro spinal fluid (a cancer that spreads to the CSF is called leptomeningial disease and is basically untreatable.) The damage it wreaks on a human being is cruel, and in the last three months of her life, my child lost her ability to walk independently, lost 90+% of her vision and in the last two weeks, most of her hearing.

On 6th July this year, at 1am, my beautiful girl slipped into a deep coma after a cardiac arrest, and at 3.36pm passed away. Random date. Random time. Random fate. The first Code Blue on the Paediatric-Oncology Ward at Mediclinic City Hospital.

None of what happened to her makes sense and we are working on trying to put our lives back together after the very centre and soul and glue that held it together was yanked away so cruelly. She loved life and had larger than life plans, and we are heartbroken and enraged that she was not given a chance to live and try to accomplish those. At the same time, we are aware that had she lived even a few days longer, she would have lost her ability to talk and eat and we are glad that she was spared that torture and humiliation at the least.

Cancer is a fucking bitch, and when it happens to children, nothing makes sense anymore.

I am unsure how the writing will proceed. I know I had started a series on my Himalayan road trip – the drafts for the next few posts lie in a laptop folder, but working on it right now is not a possibility. All I want to do is talk and write about my glorious girl. Keep her alive at some level.

I also want to share her story. We had resisted sharing her story on any social platform, for the last couple of years, because we had hoped and planned to do it after she beat the cancer. That is how she had wanted it – not to be seen as a victim, but a victor. While she did lose the battle to cancer, anyone who knows her would tell you that till the very end, she fought like a warrior, like one of those Marvel superheroes that she loved, and in a strange way she did win.

Striking her favourite pose at her 16th birthday party

She won everyone’s hearts. The doctors, nurses, even the catering and housekeeping staff at the hospital, other patients and their parents on the paediatric-onco ward, her school mates and family and friends – every person she encountered walked away feeling more positive and stronger for having met her.

The people who were fortunate enough to know her and her story have walked away inspired by her kindness, courage, and attitude to life. She inspires my husband and me to carry on and to do things that would keep her legacy and memory alive – be it creating more awareness about childhood cancers, sarcoma, or DSRCT in particular, or creating an endowment fund or plan in her name.

I will be using this platform, besides FB and Insta, to share her story with a clear intent to raise awareness and hopefully, inspire others to stay strong. However, the writing will not commence right away – maybe a month or two down the line. I am focusing on healing and getting some of the above mentioned projects started.

Thank you for patiently reading till the end. If there is any way you can help me in sharing Sakshi’s story, and help create awareness, please do let me know.

Today, She Gets to Play

Photo by Anthony Cantin on Unsplash
Romance has begun anew.
Lying gentle and bright
on a bed of tender laps
moving in and out
of the Arabian bay.
Madness bubbles in minds
laughter escapes lips
milk spilled on waves
as night melts into day,
The full moon has her way.
The sea smiles.
Draped in a blanket of light,
Flung, not wrapped tight,
her toes tease the shore.
Today, is her favourite day.
Today, she gets to play
With the gentle light
she secretly loves.
Even as the land tugs and pulls,
silent where he lays.

A little poem to ease back into the newsletter routine. The last few weeks were tougher and busier than anticipated, but the good news is that the kiddo is recovering well from her surgery.

This disease and its treatment are both designed in the very bowels of hell, and we (and many others) walk through it on a daily basis. The simple act of facing another day with hope, and not giving in to despair can demand every ounce of energy one has. The fight against the rage and envy that one invariably feels when we wonder, ‘Why me?’ ‘Why my kid?’ or as we watch everyone else live their cancer free lives, corrodes my insides.

At the same time, it has taught me patience and how to live in the moment. Of course, the journey is not yet complete – we have a few more months of radiation and support chemo to get through. Right now, we are in the testing, scanning and planning stage and by God! it is the most frustrating stage as we wait for everything to line up before treatment starts. But at the end of it all we have the carrot of being cancer free dangling at the end of the treatment stick.

However, we all hope to have some semblance of a routine back in our lives once this phase of the treatment commences, sometime next week.

In the meantime, on The Wheel of Time front, I have reached Book No. 11. It was tough going at times because I was irritated as hell by how the female characters were fleshed out – almost all of them were irritatingly stubborn and arrogant. And not one single woman simply crossed her arms. She would cross her arms under her bosom. Every. Single. Time. Despite that I could not set the books aside because the story gallops ahead. Am yet to watch the show though… maybe after I read all the books.