{"id":856644,"date":"2026-08-15T22:58:14","date_gmt":"2026-08-15T22:58:14","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/856644\/"},"modified":"2026-08-15T22:58:14","modified_gmt":"2026-08-15T22:58:14","slug":"dipg-this-rare-incurable-brain-cancer-takes-20-aussie-kids-every-year","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/856644\/","title":{"rendered":"DIPG: This rare, incurable brain cancer takes 20 Aussie kids every year"},"content":{"rendered":"

Exclusive: \u201cGo home and make as many memories as you can.\u201d<\/p>\n

That\u2019s what the parents of children diagnosed with the rare and incurable brain cancer Diffuse Intrinsic Pontine Glioma (DIPG) are told.<\/p>\n

\"Archie<\/p>\n

Archie McDonnell has a rare and incurable brain cancer called Diffuse Intrinsic Pontine Glioma.\u00a0Supplied<\/p>\n

\u201cThere\u2019s no fight. There\u2019s no hope. There\u2019s nothing you can do,\u201d Brisbane mum Chloe McDonnell told nine.com.au.<\/p>\n

McDonnell\u2019s son Archie was diagnosed with DIPG 18 months ago, after a family member noticed one of his eyes behaving oddly.<\/p>\n

He has already outlived his prognosis. <\/p>\n

Most children with this tumour die within nine to 12 months of diagnosis.<\/p>\n

After the standard 30 rounds of radiation following diagnosis, Archie completed another 12 rounds earlier this year and was part of a clinical drug trial.<\/p>\n

But the family have now been told they have no further treatment options.<\/p>\n

\u201cYou\u2019ve got an 11-year-old and you\u2019re trying to explain to them that they\u2019re going to die, and there\u2019s nothing you can do,\u201d McDonnell said.<\/p>\n

\u201cThat\u2019s it. There\u2019s no options. There\u2019s absolutely nothing.\u201d<\/p>\n

\"Archie.<\/p>\n

Archie can no longer walk, speak clearly or smile.\u00a0Supplied<\/p>\n

McDonnell said her clever and adventurous boy had a cheeky, sarcastic wit and was obsessed with planes. <\/p>\n

He had dreams of becoming a pilot and had been involved with the Australian Air League youth group.<\/p>\n

The weekend before he was diagnosed, the fit and active 11-year-old had played his first full game as catcher for the Narangba Demons Baseball Club.<\/p>\n

\"Archie<\/p>\n

Archie played for the Narangba Demons Baseball Club prior to his diagnosis.\u00a0Supplied<\/p>\n

Now having lost most of his mobility, he is most happy playing games on his computer, or spending precious time with his mum, dad David, brother Baxter and his best mate Jake, who McDonnell said has been an incredible friend.<\/p>\n

Archie recently told his mum he wants to meet Neil the Seal<\/a>.<\/p>\n

\u201cYou just live every day one day at a time, if anybody asks me, I just say we\u2019re plodding along, we just enjoy waking up every morning and enjoying the day,\u201d McDonnell said.<\/p>\n

\u201c(But) he\u2019s just not the same kid.<\/p>\n

\"Archie<\/p>\n

Archie with his best mate Jake,\u00a0Supplied<\/p>\n

\u201cHe can\u2019t walk, although if you told him he was going on a flight simulator, he\u2019d get up some stairs, sure, if there\u2019s anything to do with planes.<\/p>\n

\u201cBut yeah, he\u2019s lost the use of his left arm… his speech has started to go… as time goes on, Archie will be unable to do anything.\u201d<\/p>\n

\u2018The worst conversation you can have\u2019<\/p>\n

DIPG tumours grow in a part of the brainstem called the pons that is responsible for crucial bodily functions like breathing and heart rate.<\/p>\n

They cannot be surgically removed, because the cancer cells spread and mix with healthy tissue, and they do not respond to chemotherapy.<\/p>\n

Radiation therapy only works to slow the tumours\u2019 growth.<\/p>\n

And we don\u2019t know what causes them.<\/p>\n

There\u2019s no known environmental cause and only about seven per cent of children diagnosed have been identified to have a genetic predisposition.<\/p>\n

Until about 10 years ago, it was considered too dangerous to even attempt a biopsy – meaning until recently, DIPG hadn\u2019t been studied in labs.<\/p>\n

\u201cIt\u2019s the worst conversation you can have with a parent,\u201d leading childhood cancer researcher Professor David Ziegler told nine.com.au.<\/p>\n

Ziegler is the group leader of the Brain Tumours Group at the Children\u2019s Cancer Institute<\/a>, Chair of Clinical Trials for the\u00a0Zero Childhood Cancer Program and head of the neuro-oncology program at Sydney Children\u2019s Hospital.<\/p>\n

\"Leading<\/p>\n

Leading children\u2019s cancer researcher and doctor Professor David Ziegler\u00a0Children’s Cancer Institute<\/p>\n

\u201cMost cancers have at least, even if it\u2019s a small per cent, a tiny chance of cure or at least some treatment that that may be effective, but this is really one of the worst, one of the most aggressive. <\/p>\n

\u201cIt\u2019s one of the only cancers for which there\u2019s no treatment, no chance of cure even from day one.\u201d<\/p>\n

In 2011, Ziegler led the team that established the first tumour bank for DIPG in Australia, with tumours donated by parents of children after they had died.<\/p>\n

\"Archie<\/p>\n

Archie McDonnell with his family.\u00a0Supplied<\/p>\n

These first specimens allowed the research that has now identified five drugs that are effective at killing DIPG cells and led to the first clinical trial. Another two trials are in development.<\/p>\n

According to Ziegler, it has been parents driving the bulk of the funding and awareness.<\/p>\n

\u201cPart of the challenge is it\u2019s a rare tumour, it\u2019s not something that most people have heard of, meaning it\u2019s not as well funded as other cancers that we hear a lot about, breast cancer, bowel cancer, et cetera.<\/p>\n

\u201cSo pharma companies… there\u2019s not a lot of incentive for them to invest in this area. <\/p>\n

\u201cIn large part it\u2019s been parents who\u2019ve been doing a lot of the fundraising to try and raise the funds to do research, and also generate awareness leading to support from the government as well.<\/p>\n

\u201cWe are making progress, but we still have a long way to go.\u201d<\/p>\n

Reasons for hope<\/p>\n

Ziegler said research now showed biopsies of DIPG tumours are safe and can help match a child\u2019s tumour type with the most effective treatment.<\/p>\n

\u201cSometimes these tumours are actually not what people think they are, so they might be a slightly different tumour type and also we find that many of these have genetic changes for which you can actually match them to a drug treatment,\u201d Ziegler said.<\/p>\n

\u201cFor the first time, we are extending the survival of these children by doing that.\u201d<\/p>\n

He said there was also research underway into CAR T-cell therapy, which takes the child\u2019s own white blood cells and genetically engineers them to fight the tumour.<\/p>\n

\u201cWe\u2019re still not curing all these children, but we\u2019re actually starting to make some ground, starting to shift the goalposts where we can actually have treatments that are starting to do something.\u201d<\/p>\n

\"Cheeky<\/p>\n

Cheeky Archie as a baby.\u00a0Supplied<\/p>\n

Ziegler said 50 years ago, childhood leukaemia was also an incurable disease. It now has a 90 per cent cure rate.<\/p>\n

\u201cIn leukaemia, it\u2019s not just one drug that\u2019s the cure, but multiple drugs used in combination therapy.<\/p>\n

\u201cThat\u2019s what gives me a lot of hope.<\/p>\n

\u201cI feel like we\u2019re seeing the initial responses that they saw when they started using the right treatments for leukaemia 40 years ago, where they started to see some kids going into remission.<\/p>\n

\u201cWe\u2019re starting to find better treatments that are actually starting to see kids actually responding and having a longer lifespan.\u201d<\/p>\n

\"Archie,<\/p>\n

Archie, living his dreams.\u00a0Supplied<\/p>\n

And like DIPG, it was parents who fought for the funding and investment into leukaemia research.<\/p>\n

\u201cIt was parents who said \u2018we need to make a difference\u2019, so they started doing fundraising and garage sales and gala balls and sausage sizzles and all sorts of things, and that was what raised the money that allowed them to start doing lab research and clinical trials.<\/p>\n

\u201cThe more investment we have, the more different drugs we can test, the more trials we can open, the faster we\u2019ll be able to learn and and make the same advances.<\/p>\n

\u201cI think we really are at a turning point where hopefully we\u2019ll be having less of those terrible conversations and having more positive ones and more hope in the future.\u201d<\/p>\n

While Ziegler\u2019s Brain Tumours Group pushes forward with research, family and friends have rallied around Archie to do the only thing they can do, make memories.<\/p>\n

There is a GoFundMe fundraiser to help Archie live his dreams in the time he has left.<\/p>\n","protected":false},"excerpt":{"rendered":"Exclusive: \u201cGo home and make as many memories as you can.\u201d That\u2019s what the parents of children diagnosed…\n","protected":false},"author":2,"featured_media":856645,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[64,63,137],"class_list":["post-856644","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-au","tag-australia","tag-health"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/856644","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=856644"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/856644\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/856645"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=856644"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=856644"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=856644"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}