Mother wants to raise awareness about rare cancer that claimed daughter’s life
The mother of recently deceased cancer patient Shaniece Nanhoe is planning to do everything she can to help raise awareness about rhabdomyosarcoma (RMS).
Esherdai Jailall told Stabroek News that while she is focused on laying her daughter to rest, she is also working on ideas to help better inform people about situations similar to the one her family experienced. Nanhoe, who had a facial tumour, was diagnosed with the rare cancer in June of 2019 and had undergone over a dozen cycles of chemotherapy. By the time her doctors considered radiation therapy, the facial tumour had worsened and her doctors informed that the treatment would only make matters worse.
She was pronounced dead on January 5.
Nanhoe’s funeral will take place on Tuesday, January 19, at 2pm at the Ruimzigt Cremation Site, West Coast Demerara. The body will be at her Canal Number Two, West Bank Demerara, home for viewing at 1pm. Nanhoe is being buried according to Christian rites and her mother has stated that a wake is being kept at the home every night.
Noting that her daughter was a strong fighter as she battled the cancer tumour that was growing in her face, Jailall said that it is for Nanhoe that she will be trying to get on board with cancer awareness programmes and other children’s health awareness programmes. She said that this is necessary because like many other persons, she wasn’t aware of the cancer type and that she would not wish for this to be the situation for others. “It’s not something I want to see anyone go through. It’s not something easy. Not everybody is as strong as I am or as brave as I am. Could you imagine sitting next to your child, sleeping next to your child while this thing is breaking every bone in them? It’s not an easy task,” she said. “Something has to be put in place directly for this type of cancer. I’ve heard about cancer before but nobody had ever taught me about this one. It was something that hit me like when bandits enter my door… bam! These people just show up. It really kick me up.”
Jailall hopes that Nanhoe’s story can let parents know what could happen to their children. She said that a cold could be just that, but she explained that there are signs and symptoms that need to be followed up. She advises parents to look for those signs and monitor them. She recalled that when Nanhoe started showing signs of the tumor in her eye, they knew it wasn’t normal but they hoped it would pass over. She said that other parents must not take these things so lightly. “Don’t take it likely, especially when it comes to swelling and especially when it comes to pain,” she urged, adding that while things might seem fine, they aren’t always. Jailall said that Nanhoe would play in the sun and do all the other activities as other children “so who would expect that there’s a tumour in her face?” but she said that there were times when signs were shown. One night the family was at a dinner and Nanhoe was complaining about a headache but she thought it was nothing too serious. She said that she advises parents to do routine screening and checkups.
While she knew her daughter’s body was deteriorating due to the rare cancer she was living with, she was not fully prepared for the death of the 16year-old. The teen had celebrated her birthday just a day before her passing and according to her mother, she was very active that day, considering her health condition. Jailall said that seeing Nanhoe kicking the balloons that were on her bed and dancing on the spot with a balloon in her hand were signs of a possible improvement with her condition. She said that she wished she had focused more on spending time with Nanhoe than spending time planning for possible ways to get her more treatment given her upbeat spirit, mere hours before she took her last breath. “I see her in action and I thought what if this child is getting better so I focused on that. I was thinking we’re going to get her a second opinion. I was thinking to call in more medical help the next day,” Jailall informed.
She said that she became hopeful because other days the teen would be in so much pain she would be constantly crying out for her and she had to do everything for her. “On her birthday, like the reality of her dying, I was prepared before, but that day I feel didn’t have enough time with her,” the woman continued, “I went into bed around 11pm and see she wasn’t sleeping and I was shocked. I said ‘what happened?’ she signal that she doesn’t know, I asked if she’s in pain [and] she signalled no, but then I asked again and she signalled she was [in pain] so I got the morphine.”
Nanhoe’s mother said the following morning she woke at minutes to 6 am and instead of doing her normal routine, which was to check on her daughter, she went to the washroom first and then went to check on the teen. While doing her check she noticed the teen’s head was cold but her lower body parts were still warm. She said that she did not want to believe that her daughter had just died. Jailall said that she cannot use words to explain how she feels. “I think it’s heartbreaking. It’s something I don’t think I could fit into words to tell. It’s way beyond her and beyond me [but] she’s a legend in her own way,” Jailall said. As for her two daughters and their father, she said that the family hasn’t really been able to speak out about their feelings. She said that the younger daughters were not given a full breakdown of the situation.