Losing a child to brain cancer
Last Sunday four-year-old Kiana Amaya Niles lost her almost one year battle with brain cancer when she took her final breath in the paediatric ward of the Georgetown Public Hospital (GPH) surrounded by her mom and other relatives.
Her grieving mom Roshanna Mitchell details her months of fighting to keep her daughter alive, dealing with negative comments and now having to go on without her. I reached out to Mitchell after she shared a heartbreaking video about the painful journey she has had since her daughter was diagnosed.
“First I want to say Kiana was a very intelligent girl. She was smart and she could have communicated with you and tell you as it is… She was normal and she did everything a regular child would do,” Mitchell told me in a telephone conversation.
“…She had a fall, she slipped on a plastic bag in the veranda of her father’s place. She fell backward hitting the back of her head. And like the old people would advise we went and soak the back of the head but we did not take it as [anything] serious. That was two weeks before she was diagnosed, two weeks before Christmas last year.
“It so happen that she started being clumsy. She was never a clumsy child… she started falling down while walking so I took her to GPHC and they did a physical examination. The doctor realise it had something to with her brain that was causing her to fall.”
Following a CT scan, Mitchell was giving the shocking diagnosis that her daughter had a brain stem tumor.
According to Cancer.Net, a website run by the American Society of Clinical Oncology, brain stem glioma is a type of central nervous system (CNS; brain and spinal cord) tumor. This type of tumor begins when healthy cells in the brain stem change and grow out of control, forming a mass. The tumor can be cancerous or benign.
“When they told me that there is something on her brain and it could be a tumor, I got weak and was in shock,” Mitchell recalled. “I asked them what they meant, they said it is possible it was a tumor. They said an MRI had to be done. I had no money so I asked people for help on Facebook and WhatsApp… I got the assistance from her father’s former boss and the government assisted.
“The MRI showed that she had a brain stem tumor which was considered cancerous. I was in disbelief but I tried to work around what they were actually telling me.
“GPHC had placed her on medication and she was admitted. They further explained they could not have done anything to assist her... [it] was inoperable because of where the tumor was.”
The little girl was referred to the Guyana Cancer Institute and after consultation the mother was told her best option was radiation. During that time as well, she contacted St Jude Children’s
Research Hospital in the US, but because COVID-19 was just becoming a reality no patients were being accepted from outside the country.
“When they told me about the radiation I had no idea what it was because that was the first time I had heard about it. They explained what it was and what it would be doing and I didn’t really like the sound of it, but as a mother I could not watch her continue to deteriorate and not do anything,” Mitchell said.
“I didn’t have any finance and I had reached out to persons. They helped and the ministry also helped. When we had gotten the finances, the radiation started. She had 28 sessions and it was a come and go process. She went in for 2 pm, had the radiation and went home,” the mother said.
Got better
“After the radiation she started to walk and talk better. Her attitude was great. She was counting back and saying her ABC. I was happy that she was doing her normal things, this lasted for about three to four months. After that three to four months I realised that the symptoms were coming back so before it even got worse I took her back to the cancer institute,” Mitchell said.
A CT scan was ordered and initially Mitchell said she did it through GPH as she did not have the funds to have it done at the institute. According to the grieving mother, the doctor was not too happy and ordered another CT scan and with some financial assistance she managed to have it done at the institute.
That scan showed that the tumor had grown back. Mitchell was given the news every mother dreads; there was nothing more to be done for her child. That was last August.
“When I heard that, I broke down in tears because I was spending money to facilitate her treatment. It was a private institute and I was expecting excellent results. They explained that one of the disadvantages was that the cancer could spread to other parts of the body,” she said close to tears.
Little Kiana was transferred to GPH and there her condition deteriorated quickly.
“… She couldn’t talk or walk properly. She had to be in pampers, her eyes hurt and sometimes they were red and runny. She lost mobility in the entire left side of her body. Communication wise, she could not communicate how she used to,” she said.
“As the days went by, things got worse and she was completely bedridden; she was just lying down and watching around. Like a couple days before she died she would shake her head to indicate what she wanted. She could not balance or anything, everything just went downhill.”
For those months she was in and out of the hospital.
“When she was admitted, two weeks before her death, the doctors at GPHC was very unprofessional, I am not going to lie,” Mitchell said. “I don’t know if they are qualified or in training but they were not professional. One day I am sitting there, beside my child on her bed… and a nurse came and asked the doctor what happened to this child and his words in front of me was that he was waiting for her to crash.
“I looked at him and he looked at me and then the nurse looked at me and after