ZIAD Soltani is 12 years old and crazy about footy. His favourite team is the Canterbury Bulldogs and he carries a football around with him at all times.
“It’s become his security blanket,” Ziad’s mother Trudie Timmins told news.com.au. “All he wants to do is play footy.”
But lately, that hasn’t been possible, because Ziad has brain cancer. Two weeks ago, he had a 2cm tumour removed from his brain stem by Dr Charlie Teo, one of Australia’s most renowned and controversial neurosurgeons. The surgery cost $100,000 and was paid for by total strangers, after a family friend set up an online fundraising page.
Most brain cancer patients emerge from surgery with some nerve damage. Ziad’s vision is blurry and his speech is slurred. He has some short-term memory loss. His right hand and foot are constantly numb. His mouth and eyes droop a little at the sides. It’s a tough existence for a 12-year-old boy.
But if not for his mother’s persistence, Ziad’s current condition could have been far worse than it is today.
In March, he was vomiting and suffering from constant headaches, but the local GP said it was just a virus. It wasn’t until July when he dislocated his shoulder playing football and went to hospital for an X-Ray, that doctors realised something was wrong.
“Ziad had a scan on his shoulder and his neck and that’s when they found the tumour,” Ms Timmins said.
“We went straight to the hospital the next day for a biopsy. When the results came back we were told the tumour was very slow growing and it wouldn’t cause him further complications. He’d need check-ups every three months but he would have a normal, happy life.”
But Ziad’s headaches and irritability persisted.
“I noticed things were different,” Ms Timmins said. “His eye was starting to drop and his mouth was pulling more to the left side than normal.”
So when the school nurse called and said, “He’s really off today,” Ms Timmins took her son straight to the hospital. An MRI found the tumour had grown. Doctors recommended Ziad start chemotherapy and radiation immediately. But Ms Timmins had read online that Ziad’s tumour didn’t respond to chemo.
“I wasn’t really keen on them putting all this stuff in his body if he wasn’t going to have a good reaction. A friend of mine who had a brain tumour said to me, ‘Get a second opinion. Go and see Charlie Teo.’
“Charlie said if [the tumour] isn’t surgically removed, Ziad will be paralysed within 12 months and not with us within five years.”
Depending on who you speak to, Charlie Teo is either a hero or an idiot. He will operate on brain tumours that other surgeons consider inoperable or too high risk. His patients come from all over the world to visit his neurology centre at the Prince of Wales Hospital in Sydney. His radical approach has drawn criticism from some in the surgical profession, who argue he is a “cowboy” who offers “false hope” to patients and many doctors will refuse to refer their patients onto Teo. Some critics have previously labelled him a “narcissistic egomaniac”.
He’s famous for his easygoing bedside manner. His patients say speaking to Charlie doesn’t feel like speaking to a doctor. “It’s like talking to a friend,” is how many describe their interactions. Teo rides a motorcycle, happily courts the media and has accused the medical profession of letting egos and a bullying culture get in the way of patients’ best interests.
His prices also cause some ire. Since a family friend set up a GoFundMe page in October to raise the $100,000 needed to fund the surgery, total strangers have donated $200,000. Ms Timmins says the money left over after the surgery has been put in a trust account for Ziad, who wants to give the money to another family in need.
Brain surgery is extremely risky. Death, paralysis, loss of vision and speech are all likely outcomes. “Charlie said, ‘Ziad could be paralysed, he could be blind. He could have memory loss’,” Ms Timmins said.
Many in the medical profession argue these risks are too great — it is better to send the patient home so they can enjoy what is left of their life with full functionality. Teo disagrees.
“While there’s quality of life, there’s hope. If people aren’t willing to die I will certainly not condemn them to a death sentence. People I’ve operated on that really should have died within six months, a lot of them are still alive and a lot survived two, three, four years,” he told Fairfax.
That’s the attitude Ms Timmins takes. Even with the frightening risks, she knew surgery was necessary.
“I saw how quickly he was deteriorating … his face, his eyes and his balance. I said, ‘No is not an option.’”
Dr Teo has told the family the numbing in Ziad’s right hand and feet will probably never improve.
“It’s damage from the tumour sitting on those nerves,” Ms Timmins said. “Every day his eye is improving, but any nerve damage can take up to 12 months to heal. He did have a bit of short-term memory loss in the beginning. He still forgets some things now, but not as intense as we thought it would be.”
Ms Timmins says her son is “really struggling” with the way he looks post-surgery. He has multiple scars on his head and has gained 6kg, a side effect of being on steroids.
“At one point he said it would be easier for his family for him to die. At 12 years old your image is everything. He doesn’t even want to go to his school farewell because of the way he looks. He thinks he’s fat and he’s uncomfortable There’s nothing anyone can say to make him feel better.”
What is more heartbreaking is that Ziad will probably need to undergo another surgery to remove a second tumour.
“When they first diagnosed the tumour it was two masses, but they said they were connected,” Ms Timmins said.
“But when Charlie went in, he said, ‘No it’s two tumours,’ and he couldn’t get the other one, so Ziad still has anther 2cm tumour in there. We haven’t said anything yet to Ziad.
“When he woke up and asked if the tumour was gone, we couldn’t bring ourselves to tell him there was another one. We’ve been very honest with him with everything else. If he had questions that needed answering we would answer them. But I just couldn’t do it. That’s a conversation we’ll need to have eventually.”
But the generosity of total strangers has helped Ziad and his mother through this incredible tragic time.
“Even a little boy knocked on the door the other day with $4.50 and he said, ‘Here’s my lunch money. Here Ziad, you need this more than me,’’” Ms Timmins said.
“You turn on the TV and it’s all terrible news, but there are good people out there. It’s made this journey so much easier.”