Every parent's greatest fear is something going horribly wrong with their child’s health.
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Early in March Dallas Taylor and Ricardo Henry were given the heartbreaking news their precious little boy Taio had a brain tumor.
In another cruel blow, the tumor has damaged the three-year-old’s optic nerve and he is unable to see.
Dallas said it all happened so fast.
He started walking into furniture and getting my sister and I mixed up,” she said.
“If one of us went to hand him a drink, he didn’t know where it was even if we put it in front of him.
“It was really quick, it happened over a couple of days.”
When Dallas picked him up from Nurture One Victoria Street Children's Centre on Friday March 10, the staff told her Taio was upset, that he was unsure of his surroundings and he had walked into a wall.
“They had to hold him for the rest of the day,” Dallas said.
“The staff wrote a letter for the doctor describing what had happened and I made an appointment.”
Dallas took him to a doctor in Orange the following Tuesday.
The doctor examined Taio and organised for him to see an eye specialist the next day.
“The specialist said his eyeballs were fine,” Dallas said.
“But then he rang Orange Hospital and organised for him to see a pediatrician straight away.
“He told me it was very important that I go immediately to the hospital, we were really frightened.”
The pediatrician sent him for a CT scan which showed there was a mass in his head pushing on his optic nerve.
They did an MRI the next morning and confirmed the mass was a tumor, but at that stage were unable to tell whether is was malignant or benign.
“The next day we were flown to Sydney by the Royal Flying Doctors and he was admitted to Westmead Children’s Hospital,” Dallas said.
“By the time we left Orange, he had lost his sight.”
Taio had numerous tests and his parents spoke to different neurosurgeons.
He had brain surgery on March 15.
The doctors told Dallas and Ricardo they had removed as much of the Craniopharyngioma tumor as they could, but they were unable to say if his sight would return.
“The tumor was benign but this particular type of tumor has a tendency to grow back,” Dallas said.
“We were told once Taio had recovered from surgery he would be able to go home and in the meantime the doctors would work out what to do next.
“We were home for a little while, trying to live as normal as possible and praying for his eyesight to return, before he had to go back for a follow up visit.”
An MRI on Monday, May 1 revealed the shocking news that the tumor had grown back to its original size.
On Wednesday, May 10, Taio had his second brain surgery.
“The doctors told us they were more aggressive this time with the way they cut it out,” Dallas said.
“They had to remove his pituitary gland which creates a whole host of new problems for him.
“The pituitary gland sends signals to your thyroid and adrenal glands so without it he has to take thyroid medication.
“The adrenal gland controls the stress in your body if you are sick so he will also have to take steroid medication for the rest of his life.”
Diabetes insipidus is another condition Taio’s little body will have to deal with due to having his pituitary gland removed.
“It is caused by insufficient production of the hormone vasopressin which tells his kidneys to retain water,” Dallas said.
“It doesn’t matter how much water he drinks, he still urinates a lot.
“It can cause dehydration and a buildup of salts in his body, which is really dangerous.
“The doctors are trying to get it under control with medication.”
As he gets older Taio will also have to take human growth hormones because he won’t grow at a normal rate.
“Later in life they will give him medication to bring on puberty,” Dallas said.
“Without it he probably won’t go through puberty at all.”
Dallas said despite all his problems Taio has been coping quite well.
“He’s been a little champ,” she said.
“He is always smiling, although he gets cranky when he has to have obs and medications.
“Last week they removed the tubes and he was able to start talking again.
“He loves listening to music and the Teletubbies. He likes to fall asleep listening to Let It Be by the Beatles.”
Taio had a follow up eye test last week.
“The results showed there is no light getting in, still no improvement,” Dallas said.
“They have referred him to the Royal Institute for Deaf and Blind Children.
“He’ll start having lessons in braille for his age group.”
Dallas and Taio arrived home to Parkes on Thursday.
“He’s ok, he’s taking it in his stride,” she said.
“He has medication morning, noon and night, which he doesn’t like very much, but other than that he is coping quite well.”
The doctors are confident they have removed all of the tumor, but because of the high risk of it growing back, Taio will have six weeks of radiation therapy on his brain.
“At this stage the plan is to return to Sydney on Wednesday,” Dallas said.
“They’ll let us know for sure on Tuesday.
“Because he’s so young, he has to be put under a general anesthetic each day for the treatment.
“When we get there they’ll put in a central line, which they’ll use each day to knock him out.
“We are glad to have him home, even though it’s only for a few days. His brothers and sister have been missing him.”
Dallas’ three older children Jack (12), Lilianna (11) and Johnny (9) are staying with her mum Leonie Egan in Parkes while she is in Sydney with Taio.
Ricardo is currently working in Orange.
The family have a long and difficult road ahead
“We’ve decided to start learning braille too,” Dallas said.
“So when he does start school, we’ll be able to help him learn to read.”
Dallas has nothing but praise for the staff at Westmead Children’s Hospital.
“They have been wonderful,” she said.
“We’ve had a tremendous amount of support here in Parkes and in Orange too with Ric’s family.
“We are so very grateful for everyone’s love and prayers.”
Taio’s aunty, Liz Henry, has created a gofundme page to help the family with the financial burden of their situation.
Donations can be made here: www.gofundme.com/3rpygm0