Four-year-old Brayden Grugeon reckons he's some sort of superhero, and in many ways he is.
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Brayden and his family - dad Anthony, mum Kim, and six-year-old sister Ella - have just come through the most harrowing 10-month ordeal that tested them in every way. Life and death stuff ... and not once, but twice.
It has involved extended stays in hospitals, too many tests to count, blood transfusions, an uncommon organ transplant, new drugs, isolation wards and some of the country's finest medical teams.
"We are still walking on eggshells now, but things are certainly looking up," Anthony said.
So much so, the Berry Park youngster might even be about to go into medical history. And not just because he's gone from having one very dicky liver, to having two livers both working beautifully.
Brayden's story began when he woke up one Saturday morning and was yellow, despite feeling typically full of beans.
Mum Kim took him to Maitland Hospital for blood tests and by Monday afternoon he was relocated to John Hunter for multiple testing.
After more blood tests and ultrasounds, it was a liver biopsy that told the story - acute liver failure.
For Brayden, the little boy who loved to run and play, hospital was suddenly home.
"The doctors consulted with the liver team at Westmead and he was transferred there," Anthony said.
"His condition started to slip at about that time. Looking at him in the hospital bed, he wasn't our Brayden anymore. He was lethargic and tired, he looked awful."
To be at his side, the family took a room at Ronald McDonald House as the severity of the situation took hold.
What caused it?
"Doctors think it must have been a virus - they're not sure what - and that it infected the liver.
"His auto immune system broke down too, so he had no natural defences. Doctors would come in in the full gear, masks and so on."
TRANSPLANT OPTION
The medical team decided a transplant was the best option, and quickly.
"I was angry and in denial," Anthony said. "Why can't you fix him? Why us, he's a healthy kid?"
Tests showed the liver was getting worse and the big concern was that if one organ fails, others will start dying too. They needed to act.
By now he was being fed through a tube and was "very, very sick".
If there wasn't enough pressure on the family, Ella was missing her mother in particular who was spending extended periods day after day at Brayden's bedside.
"It was tough on everyone," Anthony said.
Maitland Hospital on that Saturday morning was only a few short weeks ago, but it seemed was a world away.
What they didn't know at the time was that the virus had also grabbed hold of his bone marrow - a totally different but equally debilitating situation. But we'll come to that, for now they had enough to deal with.
In desperation Kim asked if they could use a live donor kidney, offering to have her own liver removed. Anthony reluctantly agreed.
But the night before Kim was due to be operated on, they found a donor who matched.
RARE ALTERNATIVE
They decided on an extremely rare procedure - cut away part of Brayden's liver, put the new one beside it but don't graft them so they remain separate, and attach it to his internal plumbing. It can only be used in cases where doctors feel there is potential for the original liver to repair itself.
The hope is that the new liver will take over the workload while the original liver recuperates and, in time, it will grow back and start working again. The obvious benefit is that the patient will no longer rely on lifelong anti-rejection drugs.
To say it's not common is an understatement. In the previous 10 years the hospital had used the procedure twice - for one success and one failure.
After 15 hours of surgery, the new liver was in.
Post transplant, with multiple tests occurring to monitor his progress, things became significantly more complex when it was discovered that Brayden was producing no blood - red blood, white blood or platelets, which meant no immune system whatsoever.
He was immediately transferred to an isolation ward. Again, doctors in full isolation outfits.
"They were talking a bone marrow transplant, but none of the family - me, Kim or Ella were compatible," Anthony said.
"A search internationally showed there were two donors in Europe and one if North America that matched, but the poor kid would have to go through chemotherapy and spend another eight months in hospital if all went well.
"Honestly, it was another nightmare.
"It was then the doctor suggested we try a new drug treatment - one dose in the morning, another at night and high use of steroids. So that's what we did. About eight or 10 weeks later his bone marrow started to recover and continues to do so."
The sense of relief is overwhelming.
"He's still in recovery, but he's now making enough blood that he doesn't need transfusions. We're visiting the doctor again in about six weeks which gives you an indication of how well he's going."
The other good news is that Brayden's liver not only started to pick up but is now like new. He's happy to tell anyone who'll listen he has two livers - which is why he refers to himself as a superhero.
ON EGGSHELLS
The family is home again, but they're acutely aware of the risks if they come home with a cold or the flu, or Brayden cuts himself.
"Eggshells," Anthony repeats.
Ella has been pulled out of school to reduce the risk of bringing something home and is missing her friends, and for Anthony and Kim there's the ongoing stress of looking after medication.
"That can take up to three hours a day. It was incredibly daunting those first days when we came home. It was great to be home but suddenly we didn't have the experts all around us if anything went wrong."
Brayden though can get to run in the yard, play and enjoy all the things he couldn't do for so long.
And he's a quick learner. When he first returned home he had tubes coming from his chest. It meant he wasn't allowed to go on the trampoline or use the pool "because you've got tubes in your chest".
Next day, when told to clean up his room, he couldn't because "I've got tubes in my chest".
And now the tubes are gone, he had his first shower in nine months and loved it.
The one question for doctors now is whether they remove the transplanted liver or not. The preferred option at this stage is to remove it, rather than take steps to get the body to reject it naturally - "we don't want to put any stress at all on his immune system just yet".
"We passed the doctor in the hall at Westmead Hospital recently and he said it was a miracle, that Brayden's liver was operating better than the one they transplanted which was still 'pristine'," Anthony said.
It's been such a success that they're even considering whether to transplant that liver again into someone else.
"As far as I know, that's never been done before, it would be a world first."
He's a superhero all right.