Chandler’s parents found a pea-sized bump on his leg. Now, he has months to live (2022)

Chandler is just like any other eight-year-old boy.

He has a curious mind. He loves chatting with people. He is obsessed with LEGO, Transformers, Pokemon, and Stars Wars.

But it was on Star Wars Day this year – May 4 – when he and his family received heartbreaking news: Chandler was diagnosed with osteosarcoma, a rare and aggressive type of bone cancer.

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Just one month earlier, on Good Friday, Chandler’s parents Cong and Trang Tran had discovered a pea-sized bump on their son’s left leg, just below the kneecap.

They never imagined what would come next.

The diagnosis

Just before the Easter long weekend, Chandler and his brother Carson, 6, had been enjoying vacation care near their home in Sydney’s west.

Back at home on Good Friday, Cong and Trang noticed Chandler was limping around the house.

“We asked him, ‘Did you hit your leg on something?’ But he said ‘No, nothing happened’,” Cong recalled.

When he looked at Chandler’s leg, Cong noticed a small bump just below his left kneecap.

“It was probably the size of a pea,” Cong said. “But it was quite firm.”

The possibility of sarcomas - a type of tumour that develops from bone cancer - sprang to Cong’s mind so he did some research.

“I sort of had in my head that it could potentially be that, as much as I didn’t want it to be,” he said.

The bump was still there the next day and causing Chandler a lot of pain, so Cong and Trang took him to the emergency department at Fairfield Hospital.

“They took an X-ray, and came back with nothing,” Cong said, adding the medical staff recommended further testing elsewhere.

“So they gave us some painkillers, and we went home.”

The next day, Easter Sunday, they took Chandler to Liverpool Hospital for an MRI scan.

That scan showed a couple of bone lesions, and staff told Cong to take Chandler to The Children’s Hospital at Westmead “as soon as possible” - which he did.

“They kept him in for about six days, just to do various scans, like X-rays and CT scans,” Cong said.

“They called us back in – it was May 4, Star Wars Day, so I remember it.

“They said, ‘Look, we got the results of everything … your son’s been diagnosed with osteosarcoma’.”

Osteosarcoma is a rare type of primary bone cancer that begins in bone tissue cells. About 200 Australians are diagnosed with primary bone cancer every year, and about 35 per cent of those cases are osteosarcoma, according to the Australia and New Zealand Sarcoma Association.

Doctors told Cong it was extremely rare for someone as young as Chandler – then just seven years old – to be diagnosed with the disease.

But what was most concerning was the cancer had spread from his leg. Scans found large tumours and fluid in his lungs.

“That really, really worried us … because once it’s spread, it would make things very much more difficult,” Cong said.

“But it didn’t take us long to just switch our minds off that and just focus on what we have to do to get him through this.”

The treatment

The hospital recommended a 29-week program of chemotherapy and surgeries to treat Chandler’s cancer, in the hope the intense treatment regimen would help him.

As a seven-year-old, Chandler was living in a hospital ward.

“That hospital ward became his home,” Cong said. “The nurses knew pretty much everything about him.”

So by the time August – and Chandler’s eighth birthday – came around, the hospital threw a party ... with lots of LEGO gifts for him.

“Everyone knew he was a LEGO kid,” Cong said. “So everyone was buying him LEGO sets, left, right and centre. It was amazing to see.”

As a birthday treat, Chandler was able to go home to his family for a few days in the second week of September.

That’s when things started to go downhill.

“It was all good for a couple of days, but then his leg started really hurting to the point where he couldn’t move it at all,” Cong said.

They took him back to hospital where doctors found a fracture in his kneecap.

“To this day, we don’t know what caused the fracture … maybe the tumour had caused some inflammation which pushed something around,” Cong said.

Chandler was back in his hospital bed but the painkillers were not working - he was not sleeping and his pain was getting worse.

Doctors sat Cong and Trang down to explain one option that could help – an above-knee amputation.

“The doctors said it would be a short recovery time, and a low risk of infection, and then that would have guaranteed that they could get rid of the cancers,” Cong said.

“It was gruesome but, once you get the emotion out of it, it was very much the logical decision to just agree to do that.”

A couple of days before the surgery, Chandler called his father over to his bed.

“He said, ‘Daddy, I’ve been thinking about it, and I’ve got an idea. Can you take a photo of my leg for me on my tablet? I want to do something’,” Cong said.

Cong took the photo and gave the tablet back to Chandler. A few moments later, he showed Cong what he had done.

“He drew a love heart on his leg and wrote: ‘Dear Leg, I will miss you so much when you’re gone. Love, Chandler’.”

‘There was no more saving him.’

The surgery went well. Chandler was back to his positive self and recovering well from the amputation. He even had plans to build his own prosthetic leg out of LEGO – dubbing it “The LEGO Leg”.

But a couple weeks later, doctors ran some more scans to see how Chandler’s lungs were recovering. It wasn’t good news.

“His right lung was half filled with liquid and the tumours had grown both in size and in number,” Cong said.

“So we had meetings with the doctors and they pretty much said we’re at the point where we can’t save him … there was no more saving him.

“That obviously broke out hearts.”

Cong and Trang made the difficult decision to discontinue Chandler’s chemotherapy.

After nearly six months living in a hospital, Chandler has returned home where the focus is now to help him enjoy the rest of his life with his parents and his little brother.

“(His lungs) are putting up a fight, that’s for sure,” Cong said.

“We’re just hoping and praying they continue putting up the fight well into next year.

“We’d be very happy to have him with us for Christmas, and however long we can.

“We’re just very, very happy to see him home and see him not in pain. This is the first time in a long time we’ve seen our normal Chandler again.”

The GoFundMe page

The Tran family’s loved ones have set up a GoFundMe page as a surprise for Chandler, which has raised more than $75,000 – which Chandler wants to spend on LEGO.

But Cong hopes it can help the family spread awareness of osteosarcoma, which he found not many people knew about when they learned of Chandler’s illness.

“It would be great if (Chandler’s story) reaches the right people, and makes noise about the more rare cancers because not only are they rare, they also seem very aggressive and harder to treat,” he said.

“Having been through what we’ve been through the past six months, we just really hope other people have a chance of not having to go through that.”

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