Shrivanie Motilal was ecstatic when she gave birth to a baby boy on January 1, 2021.
She named him Kaveesh and along with the rest of her family, doted on him day and night.
She never expected that five and a half months later, she would be in too much pain to even cradle her baby boy. Unable to even make it to the bathroom without assistance, Shrivanie started visiting different doctors, hoping to find out what was wrong with her.
She was eventually diagnosed with Synovial Sarcoma, a rare type of cancer.
During a visit to her grandparents’ Barrackpore home on Thursday, Shrivanie told Guardian Media she has been in almost constant pain since then.
“There were days I couldn’t come off my bed, there were days I had to hold onto the wall to get to the bathroom, there were days I would lie down all day on the bed because I couldn’t get off, the pain would run down from my back into my legs, underneath my feet would be numb,” she said.
According to the US Library of Medicine, synovial sarcoma is a rare malignant tumor of the spine. The tumor may present as a painless mass of the spine or slowly enlarge, causing pain or neurologic deficits.
So far, Shrivanie has completed six rounds of chemotherapy and each one has left her body more weak than before.
“I would call my parents every morning that I would have to go for chemo and cry because I knew what I would go through for the next week after- body pains, nausea, a burning sensation on the chest- it is the most horrible treatment you can do but I understood why I had to do it.”
She completed her last round of chemo on Wednesday and now that the tumor has shrunk, her doctors are advising that she should have surgery to remove it.
But as her brother, Sudarshan said, that is easier said than done.
“The position that the tumor is at the lower spine, it is invasive on the S1 and S2 spinal bones and this is causing her extreme pain, and it also means they have to cut out half of her sacral bone. To do this, it is very complex and it cannot be done here so it needs to happen outside of Trinidad,” Sudarshan said.
The family is hoping Shrivanie can travel to Panama on February 18 to have the surgery done. But the US$135,000 cost has put a major dent in their plans.
With the help of a relative living in the US, the family has started a Go Fund Me account for Shrivanie, hoping to raise US$100,000.
The account was started nine days ago and as of 5pm yesterday, kind strangers had donated US$25,337.
“This is my one and only sister, when I was growing up, she took care of me and now at the age of 27, she is one that needs to be taken care of,” an emotional Surdashan said. “The purpose of all of this is just to give her a fighting chance, she has a baby boy that is one year old and she is just starting to get into her life and we want to make sure that she has the opportunity to enjoy her life.”
As Shrivanie wept, her grandmother cradled her son, who babbled and smiled, unaware of the battle his mother is fighting to stay alive.
He is now one and for the past six months, he has grown accustomed to being cared for by his grandparents and great-grandparents.
“What I miss the most is taking care of my child, my mom takes care of my child all of the time, he goes home in-between when his father is around to take care of him and that bothers me the most, it hurts the most because I want to take care of him, I want to hold him, I want to be able to sit on the ground, to play with him and these are things that after a certain point, I can’t go down anymore onto the floor,” Shrivanie said.
She spends her days at her grandparents home, heavily medicated against the pain and describes her life before falling ill as a ‘fairy tale.’
“It causes a lot of pain, so I have to be on heavy pain medication and that medication has a lot of side effects- like dizziness, blurred vision, life before this was like living in a fairy tale and then after it was downhill since then.”
And although the surgery may save her life, Shrivanie will have a difficult road to recovery once it is done and may require therapy for a year afterwards.
“This would cause her to be almost bedridden after and she would need to go through therapy to be able to walk properly and even after this, there is no guarantee as to what could happen, her nerves could get damaged and there are a list of complexities the doctors have provided us with,” Sudarshan explained.
Despite the challenge ahead, Shrivanie remains grateful for her family, friends, community and everyone else who has reached out to help her so far.
“I never thought that at 27 I would get to see what my community has for me, I am so grateful for everyone who has assisted. I have neighbours, family, friends who are doing fund raisers, people are going out of their way to do things we didn’t ask them to do to ensure we get the help. And the doctors and nurses at the hospital have been so good to me,” she said.
Anyone wishing to assist Shrivanie can contact Sudarshan at 713-9719, 477-7205 or 725-3340.