PAPER DREAMS

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.

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.