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 he realised I was getting upset he said God was with them and I shook my head.
“I said why would you say something like that in front of me and he said he didn’t mean to say it like that but, ‘there is nothing more we can do for her’…”
Kiana was discharged on November 8. By November 12, she had to be rushed back to the hospital because her breathing had become irregular and she had stopped swallowing. There, she was fed and given her medication through a tube and sent home the same day. But by the following day she was back at the hospital as her breathing was laboured.
“As soon as we reached they told me to take her inside and they immediately put her on oxygen… They had tests done and wanted to do another x-ray, she had done one the day before. They waited a little while before they got the x-ray done… They requested a CT scan and I was wondering why a CT scan now. I asked why is a CT scan needed, and her [the doctor’s] words to me was that the cancer had spread to her lungs. I said ‘What? Hold up!’ I said, ‘What you mean?’ And she said from the x-ray it show that one side is dark and one is light and it mean the cancer had spread to the lung area which affected her breathing,” the mother said.
Mitchell said she questioned why this was not picked up the previous day and the doctor said she could not answer.
“I am thinking they saw it, but did not want to tell me as a mother. I got annoyed and stressed out and frustrated. Her father was there and he was trying to keep me calm because I am a pressure case,” she said.
Eventually Kiana was admitted to the paediatric ward, where she was not only on oxygen but a life-support machine and her breathing fluctuated.
‘I knew’
“To be honest, I knew that this was going to happen, but I was not accepting it because I was doing what I could have done to keep her alive and I think if the doctors had the same mentality she would have been alive today,” Mitchell said. “During the night [of November 13], her saturation kept going down, it went straight down to zero and stayed there for five seconds, went up back to 40-something. I got really scared and started crying. So happen, I started praying and saying Psalms and hoping for a miracle that she was going to pull through.”
At one point, she recalled Kiana looking at her with tears rolling down her cheeks and that made her cry even more.
“I know she was in pain because she was groaning and making noise,” she said.
At around 3 am on November 14, Mitchell’s sister relieved her so she could get some sleep. At 6 am she woke up to her mother’s voice and they started to pray and recite the Psalms.
“I started praying, ‘Father God don’t take her now, I am not ready for her to go…’ with tears in my eyes. Her saturation went down to 0 and never came up. She took a large blow and blood gushed out from her left side nose and that was it, that was the last time she looked at me,” Mitchell recalled.
“I broke down and fell to my knees on the floor and my stomach started to hurt. I was told that happens when you lose a child and it was the worst pain and I cried and cried. I removed the machine and I put her on my lap and I prayed for her but she still didn’t wake up back. She looked like she was sleeping but had no pulse and she was in my hands and started to get really cold, her feet were cold…
“I couldn’t stop crying. I cried the entire morning. A lot of persons who knew [were] in disbelief how everything happened.”
In her grief, Mitchell believed that more could have been done to save her daughter as she spoke of trying to garner finances to take her overseas for further treatment. She had started a GoFundMe campaign, but it was largely unsuccessful as people wanted quotations from hospitals, which she did not have.
Kiana’s two-year-old brother, who called her ‘Ana,’ has been asking for her and Mitchell said she had to tell him his sister has gone to heaven.
“Kiana was very special. She has touched so many people. A lot of persons who had never met her really felt for her. There is Makeda Sullivan, who is a nurse in training. She first met Kiana when she was first diagnosed and ever since she was by our side helping us through everything. The Sunday she died I was taking them to church to offer both of them and she was going to be the godmother,” Mitchell said.
“Everything I would have achieved for her in the short time was to make her happy,” the mother said.
She shared that she had held a thanksgiving and Christmas party for her daughter during her illness, following a request from Kiana. She received negative feedback as some felt she was wasting money.
“I had a lot of negative comments saying, ‘you wasting money’. I spent the money on toys for her and some people brought toys. I knew what I was doing. I did my best but somehow I feel in my heart I didn’t do enough,” she said close to tears.
Mitchell said she was told that her daughter could have been born with the tumor and the fall triggered it, or it could have been caused by that fall back in December 2020.
She will never know.
“I agree to speak about my experience because many persons who didn’t know me were following Kiana’s story from the very beginning and I know they are hurting. That is why I kept updating on my Facebook page…,” she said.
“Many accused me of using my child to get money. That was never the case. I was just a mother trying to make her sick daughter better.”
Kiana will be buried today. Viewing is at Sandy’s Funeral Home and funeral service at the Seventh-day Adventist Church, Sophia.
