EXCLUSIVE
A young boy battling an incredibly rare cancer typically only seen in adults has been left in the lurch after exhausting all of his treatment options in Australia.
NSW boy Aleksander Kandiliotis, 14, who has born with Lynch syndrome, was diagnosed with colon cancer at the age of 11.
‘It’s very, very rare to have colon cancer so young. In Australia, most people don’t start doing tests until they’re 45,’ his aunt, Sabrina Burke, told Daily Mail Australia.
Despite twice beating the disease, it has now spread to the liquid inside Aleksander’s abdomen causing pseudomyxoma peritonei – a rare, slow-growing cancer that causes a buildup of mucus in the stomach and pelvis.
Aleksander’s family noticed he was starting to lose weight three years ago.
‘He was a bit of a chubby child so we just put the weight loss down to him growing and maybe becoming more aware of his body,’ his mother said.
‘Then one night over dinner he just doubled over in excruciating pain.
Aleksander Kandiliotis, 14, (pictured) has been diagnosed with colon cancer at the age of 11. The type of cancer is typically only seen in adults
‘Sham and Nick (his parents) rushed him to the Children’s Hospital. They thought his appendix had burst so they took him in for emergency surgery.
‘But the doctors just came out and said they had to close him up. He had a really large tumour in his colon.’
As childhood cases of colon cancer are so rare, the Children’s Hospital were at a loss on how to best treat Aleksander.
Eventually doctors settled on surgery to remove the large tumour followed by six months of chemotherapy.
Aleksander finished chemotherapy in March 2023 and has undergone regular PET scans to monitor signs of the tumour returning.
Unfortunately, nine months later doctors discovered ‘shadows’ that they previously believed were surgical scars were actually cancer.
This time the colon cancer had spread to his peritoneal fluid. The cancerous cells were surrounded by a mucus-like fluid – making them difficult to detect.
The mucus also meant Aleksander’s stomach had expanded – a symptom nicknamed ‘jelly belly’.
Aleksander’s family (pictured) are raising money for him to seek international treatment after exhausting all options in Australia
‘That’s also a very rare and difficult to treat cancer. So even though he’d lost all this weight, he had a stomach like he was eight months pregnant,’ Ms Burke said.
‘The colon cancer had metastasised into his peritoneal cavity and those sort of cancers have the special characteristics make diagnosis quite difficult.’
With the colon cancer already presenting a massive challenge due to limited experience, the new diagnosis had doctors at Westmead Hospital stumped.
They eventually suggested palliative care, but Aleksander’s family wasn’t ready to give up.
‘So, they referred us for a second and third opinion. The first doctor basically told us to think of how we could make Aleksander comfortable,’ Ms Burke said.
‘Then we were introduced to the amazing Professor David Morris at St George Hospital.’
Professor Morris recommended Aleksander undergo a peritonectomy – an operation to open his stomach and remove the cancerous jelly-like material.
His stomach would then be pumped full of liquid chemotherapy.
Unfortunately, there was one obstacle in the way of the treatment – Aleksander couldn’t undergo surgery at St George, only the Children’s Hospital.
‘Because he’s a child they couldn’t do the surgery at St George, it had to be at Westmead Children’s Hospital – but their team had never done the procedure before,’ Ms Burke said.
‘It was a lot of red tape but the hospitals worked together and arranged for Professor Morris’ entire team to do the surgery at Westmead.
‘They opened him up on August 28. I remember he went in at 8am and was under for well over 24 hours. In the end they took out just over 10kg of tumour from his abdominal cavity. Which for a child, you can imagine how uncomfortable it was.’
Aleksander’s gallbladder, spleen and part of his colon also needed to be removed during the operation. He was then put in an induced coma for five days while doctors continued rounds of chemotherapy.
‘He had all these tubes everywhere and they would pump his stomach full of chemo, let it sit there for hours, drain it and do another round,’ Ms Burke said.
‘It was continuous for the whole five days.’
Despite the physical and mental toll on Aleksander, he and his family were willing to do all they could to rid the young teen of the disease.
‘He left hospital a few months later, just in time for his 14th birthday in December. He had it at a waterpark. It was hour long sessions but he would get out after half-an-hour. He just didn’t have the energy,’ Ms Burke said.
‘Still, it was so good. It’s the most active I’ve seen in him a really long time.’
But the good news didn’t last long. Aleksander began suffering extreme nausea and vomiting in the weeks after his birthday.
Aleksander (pictured) has already undergone two rare and difficult surgeries in Sydney
‘He had scans a couple weeks ago and found out the cancer has come back in multiple places,’ Ms Burke said.
Due to the rare nature of Aleksander’s cancer there is no further treatment available for him in Australia.
‘There’s not a lot of precedence for what Aleksander is going through,’ Ms Burke said.
‘It’s a very aggressive and rare form of cancer that it works very differently in children compared to adults.
‘With bowel cancer, you only get tested every five years because it grows so slowly, but it’s different in children.
‘Things are also complicated by the fact he has Lynch syndrome which gives him this genetic predisposition to this sort of thing.’
Fortunately there are treatments overseas for cases like Aleksander’s which can be complete in Australia, but it has to be paid for upfront.
‘We have been speaking to other doctors who have some alternative treatment options, but it all needs to be paid for privately,’ Ms Burke said.
‘There’s a specialised blood test in the UK which identifies the very specific and unique features of that person’s individual cancer and all of this other information which we don’t really do here in Australia.
‘Once you have all that additional information they have a more targeted therapy because rather than following general protocol, they can tailor treatments which his characteristics best respond to.
‘But even just the blood test is $8,000 out of pocket.’
The cost of importing the treatments and administering them in Australia is looking to be upward of $200,000 but the family is willing to do all they can to save Aleksander.
‘You are allowed to legally import and use these drugs that have been approved in these countries with comparable regulations,’ Ms Burke said.
‘But everything from this point onwards is directly out of our family’s pockets.
‘It just makes me so sad that there are these developments and advancements overseas that aren’t accessible to the average person here.
‘I just feel like we’re a bit behind.’
The family have started a GoFundMe to help pay for Aleksander’s treatment.
The colon cancer has spread to Aleksander’s abdominal fluid, meaning he’s suffering from two rare cancers (pictured, Aleksander with his parents – Nick and Sham)
‘It’s awful and it’s just even more awful when it’s a child,’ Ms Burke said.
‘He’s so strong. He’ll be hooked up to 50 machines and still tell a joke to make us feel better. He’s a really positive kid.
‘Just before he went in for his big surgery, we asked him what he wanted and all he ever wanted was a dog so we got him one and he called him Archie.
‘He is the light of his life and it was so great because while he was having this really extended stay in Westmead last year they opened up a dog park. We’d take him out in his wheelchair and his face would just light up because Archie was there.’
While Aleksander knows he’s suffering from a very serious cancer, his family have done their best to protect him from the full gravity of his situation.
‘To be honest, he was quite shielded the first time around,’ Ms Burke said.
‘He had a phone and would ask questions like, “what stage is it?” so we knew he was googling things. He always knew he had cancer but the doom and gloom was definitely filtered because so much of fighting cancer is about attitude and we wanted him to stay really positive.’
The GoFundMe has raised more than $95,000 in just four days.
His family have extended ‘heartfelt thank you for the outpouring of support, love and generosity’ and are grateful that they can move forward with Aleksander’s treatment.
