Anastasia Cunningham, News Coordinator
Writhing in excruciating pain and unable to bear it anymore, three-year-old Xyhir Ince would run to his mother screaming in hysterical tears and begging her to pray for him.
"Mommy, I'm in pain. Can you pray? Satan is wicked, he let the pain come again. God and Jesus going to take it away. Pray for me, tell God and Jesus to take it away, please," the toddler would plead, tears streaming down his face.
Heartbroken and bursting into tears, 33-year-old Kerry-Ann Ince takes her son's hand and start praying.
The grief-stricken mother doesn't know how much more of this she can take.
Diagnosed with trilateral retinoblastoma, her baby is not only completely blind with both eyeballs surgically removed, but he now has a brain tumour, which is threatening his life. One tumour is growing at a rapid rate out of his left eye socket on to the face, while another is growing in the base of his brain, wrapping around two main arteries.
The pain gets worse as the tumour grows, forcing the doctors to increase the strength and frequency of his painkillers. If that no longer works, the child will have to be put on morphine.
"I don't know what I would do without him. If I lose him, my whole life would change because he is a big part of my life. He is so jovial and intelligent. He keeps me going," Kerry-Ann shared with The Sunday Gleaner.
"I have to force myself not to think about the possibility of losing him."
On August 16, 2009, when Kerry-Ann gave birth to her third child at the Spanish Town Hospital in St Catherine, her joy was turned to sorrow when the doctors told her they suspected the baby had a serious retinal disorder that could be hereditary, a genetic abnormality in the family.
After consultation, however, she said she was assured that it was nothing to worry about.
"He was a normal child growing up doing normal things, but when he was about six months old his eyes started glowing. It look glassy, like a cat-eye look and with a different colour," she said.
"People would ask me if something wrong with his eyes and I would say 'no' because I went and check it out and they told me nothing was wrong."
But something was wrong. In 2010, at the age of one year, Xyhir was diagnosed with bilateral retinoblastoma, a rapidly developing cancer that develops in the cells of the retina, the light-detecting tissue of the eye. The tumour was spreading fast and based on the severity of it, the doctors had to remove his left eyeball.
Even after chemotherapy, however, it continued to grow, moving to his right eye. Pooling all their resources and with help from friends, they flew him to Johns Hopkins Hospital in Baltimore, United States, last November, but the parents were told it was too late. In January of this year, Xyhir was left completely blind when his right eyeball was also removed.
With prostheses placed in both eye sockets, Xyhir was enrolled in School For The Blind earlier this year.
Breathing a sigh of relief and readjusting their lives to raising their visually impaired pride and joy, his parents thought the worst was behind them until a few months later when the child started complaining of terrible headaches and had to be removed from school.
"We took him to the doctor and they ordered an MRI (magnetic resonance imaging). In October when we got back the results, it showed it had advanced to trilateral retinoblastoma, with the tumour growing in his left eye socket and his brain," said Kerry-Ann.
She was told he needed to begin immediate radiotherapy and was given a referral letter to the Radiation Oncology Centre of Jamaica, where she was told the 25-session, five-week treatment would cost approximately $1.5 million.
"They said I have to come up with at least half of the money to start and a commitment to when the rest of the money will be paid by the end of the treatment," said the office administrator.
Her husband, Devon, added, "We used up all we had when we took him to Johns Hopkins last year and we have not had a chance to recover. We are doing a little cake sale to see how much money we can raise."
MEDIAN SURVIVAL RATE
Oncologist Dr Venslow Greaves, who is familiar with Xyhir's case, said bilateral retinoblastoma was an extremely rare disease worldwide, more so in Jamaica. In fact, it was so uncommon in Jamaica, an expert would have had to be looking for it in order to detect it in its early stage.
"It is a situation that if you're not actually looking for it, by the time you diagnose it, it may be well advanced," he said.
Greaves said the success of the treatment was dependent on the stage of the disease and how early it was detected. However, the bilateral form was a more advanced phase. Radiation therapy would be one form of treatment recommended.
However, he said, "We tend to not want to use radiation with children three years and younger because you're talking about the developing brain and affecting what you call the neurocognitive functioning, the ability to develop intelligence and figure out complex problems, which will affect them later in life."
The oncologist added, "The stage the child is now at, trilateral, is like the last stage. In the early stages, you may be able to use a number of treatments. However, when it reaches the stage of trilateral, you will need to involve a neurosurgeon to see if you can remove the part of the tumour that is in the brain," he said.
"When one looks at the studies that have been done treating trilateral retinoblastoma, the results are not very promising. When you reach the stage of trilateral, you're now talking about median survival of close to a year. If it is detected very early at the trilateral stage with proper treatment, the median survival could be two years. The chances of cure is very limited."
However, Greaves said he would still recommend radiotherapy because "you don't really want to watch the child deteriorating and not try anything".
"I am willing to take the risk," Xyhir's father stated. "It's either I take the risk or do nothing. I would rather do something than nothing at all."
With a deep sigh, he shared, "We thought we lost him once in January 2011 when the chemotherapy shut down his system. He was reduced to nothing. He was two years old and his body couldn't take anymore. But, miraculously, he was given back to us. We can't give up hope now."
I OWE HIM A GREAT DEAL
Living in Willodene, Spanish Town, St Catherine, the family is so distraught and heartbroken, watching the bubbly young man deteriorate.
"He was always so playful and happy and jovial, always asking questions. When people see him playing they would say, 'You sure him blind?' because he doesn't show it at all. Now he is tired all the time and very weak. The least little thing he does, he would say, 'Mommy, I'm tired, I want to lie down'," relates his mother.
The parents said, ironically, Xyhir is the one keeping them strong.
"He has such a strong faith in God. I can't go to my bed one night and don't pray. And I can't just so 'Our Father' or say 'God soon take away the pain'. He would say 'no Mommy, you need to say more, that too short'," said his mother with a smile.
"His faith is so amazing. I can't tell him that we not going to church. Even with the pain, every Sunday he would cry that he wants to go to church. He knows pastor's voice and he knows everything happening in church."
Fighting back the tears, his father, a teacher, added, "If three years is all we have of him, I owe him a great deal because he has renewed my faith and gave me a lot to keep living for."