Time running out for class-topping teen blinded by brain tumour

BY DONNA HUSSEY-WHYTE Sunday Observer staff reporter husseyd@jamaicaobserver.com

Saturday, February 14, 2015

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Despite fighting a brain tumour that has left her without sight in her left eye and rendered one of her arms useless, 14-year-old Leslie-Ann Goulbourne managed to top her class with an average of 83.2 per cent.

But that was June 2014 -- the last time that Leslie-Ann was able to attend classes at St Thomas Technical High School.

Since then, the second former has undergone four brain surgeries, six weeks of radiotherapy, weekly visits to the hospital and numerous tests and scans. But, the tumour has now spread to the teen's spine, crippling one of her arms and partially blinding the other eye.

Leslie-Ann is afflicted by germinoma, a non-malignant tumour that affects the brain and the spine. Germinoma is a germ cell tumour that forms in the pineal gland area of the brain. Pineal tumour patients typically experience a build-up of fluid within the brain, causing headaches, nausea and impaired vision.

"From she was in grade four the headaches come on. But the headaches weren't so intense. It was on and off. She was about nine at the time," Leslie-Ann's mother, 40-year-old Andrea Williams explained to the Jamaica Observer on Thursday.

"She studies a lot because she takes her school work very seriously, so I thought that was why. At that time she started suffering minor headaches until it got worse, where instead of feeling it every two to three days she started feeling it every day."

Williams explained that she continued taking her daughter to private doctors but they kept treating her for sinusitis. However, the situation got worse, and when the child started first form in high school the headaches got so bad that teachers were calling Williams to pick her up from school numerous times per week.

But despite the level of pain the child was feeling in her head, she placed first in both first and second form and earned herself a spot on the school's honour roll with averages of 84.3 and 83.2.

The school confirmed this.

"In June she could not manage anymore and I had to go for her every other day at school," Williams said. "If I send her to school on Monday, they call and by 10:00 am I have to go for her. If she stayed home Tuesday, by Wednesday she said she wants to go school and when I send her, they send her home again," Williams said, adding that sometimes, because of the headaches, her daughter would go to school only once per week.

After noticing that her child's left eye was 'crossed', Williams decided to seek treatment at Princess Margaret Hospital in St Thomas instead of the usual private doctors. She was given a referral to do a CT scan, which cost $40,000. It was there that she learnt that the child had lost complete vision in her left eye. She was told by the doctor that it was possible that the child was not aware, because the functioning eye was compensating for the unresponsive one.

On June 25, the day she did the CT scan, Leslie-Ann was immediately admitted to University Hospital of the West Indies (UHWI) where doctors partially removed the tumour that was wrapped around the major blood vessels in her head. She was admitted a total of four times for surgeries. Her last admission was on August 26, when she had a seizure.

That was when they found out that the tumour had grown back, bigger than what they had taken out. And it had been secreting fluid under the brain so she couldn't keep up.

There were times, Williams explained, when her daughter did not know anything that was happening around her. She has no memory of her second and third admissions, she becomes helpless and has to be lifted. At the time she had stopped eating and had lost weight.

Presently, she has a shunt to lead any secreted fluid under the brain into her tummy, something her mother said will be there for the rest of her life.

The four brain surgeries were followed by radiotherapy treatment five days per week for six weeks. Follow-up tests later showed that her brain was now functioning properly and Leslie-Ann was looking forward to going back to school. However, this was not to be.

"She still don't see from the left eye, but the right eye became partially blind because the tumour had grown back bigger than what was taken out so it started affecting her other eye," Williams explained. "Now she cannot see to read details. Since a month ago she started feeling a little pain, and three weeks ago she called me at work to say her left hand was not moving. I called her doctor and he said to take her in. They did a brain scan and they said the brain was okay. They did x-ray and ultra sound on the arm and they didn't see any soft tissue. They didn't see why the arm wasn't working. So we did the MRI."

This was when it was revealed that the tumour had reached her spine.

"The problem is that she had one inside the head, which we treated. The issue now is that she has tumour in her spine that is compressing the spinal cord," Dr Peter Charles, the child's neurosurgeon at UHWI, told the Sunday Observer when contacted.

"Because of where it is compressing it will get larger and squeeze tighter. That part controls breathing and controls movement of the hands and legs, so she can be paralysed from neck down and she could probably stop breathing," said Dr Charles, son of veteran parliamentarian Pearnel Charles.

Dr Charles said that Williams, who recently spent $2 million on radiation to treat the tumour in the child's head, now has to find another large sum of money to rid the tumour from her spine.

"That's the problem, the Government doesn't have the machine that would focus the radiation where we want to and so it had to be done privately, and that is where the money comes in," he explained. "Somebody needs to recognise that it makes sense to invest in a machine that will help all Jamaican people rather than having them beg money and take out loans to try to get it done. It doesn't make sense. The Government has to try and put things together to focus on radiotherapy in Jamaica," Dr Charles said.

Williams broke down in tears as she spoke about the severe pain that her daughter endures, the steroids and painkillers that she has to be given every four hours and which do not seem to work.

"It's really hard when you see your child suffering and sometimes you can do so much and no more for her," Williams said. "Worse at nights, she suffers a lot of pain. She don't sleep," she explained, showing a picture taken of the MRI image on her phone.

While Williams cried, her daughter walked up, hugged and tried to comfort her.

"I'm sorry, I try not to break down for her, but it is very hard to cope with," said the mother of four who works at a government ministry. "Beneath all of this she is very strong. I still try to be strong for her and she always say 'mommy, don't cry, man, everything is going to be okay'."

Tears now filled the eyes of the little girl as she stood looking at her mom. Before that she was pacing her aunt's verandah in an attempt to ease her pain.

Her mother explained that this was a strategy she had adopted whenever the pain was too much to bear.

But despite the evident pain etched on her young face ever so often during the interview, Leslie-Ann said that she tries not to let the pain bother her.

"When I'm in pain I walk around or I go and lie down," she said. "But it hurts me to see my mommy cry."

Leslie-Ann said that her desire is to be well again to go back to school so that she can eventually help her mother. She wants to become an immigration officer or a health inspector.

Since last June, Williams's expenditure report showed that she has used up close to $5 million trying to get her daughter better.

She said that every week she has to travel from St Thomas to UHWI for a clinic visit. Only last Wednesday she received the invoice from the Radiation Onchology Centre of Jamaica for a total of $1.5 million. She explained that the Ministry of Health and the CHASE Fund were assisting, but she had to come up with $1 million on her own before they would start the treatment.

Now, she has no idea where the $1.5 million for the next set of radiation treatment will be coming from. On top of that, medical personnel will not start until at least a half has been paid and a commitment to pay the balance is made.

"I am not ashamed to say I am drained financially. I have nothing left," a distressed Williams said. "It's the mercy of God why I feed them every day and still able to take her in (to hospital) when I have to. I still have to pay utilities, take care of the other children, and send myself to work."

She said that the situation affects her other children who would also be up at night whenever the pain is too much for their sister to bear and she would cry herself through the nights. Each would spend time massaging or rubbing her arm in an effort to make her as comfortable as possible, while they, too, would cry whenever they see her cry.

"But there is just so much we can do for her, we have to keep rubbing her and hushing her, but we cannot ease the pain," a broken Williams said.


 


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