Doctors amazed as Hugo Long’s deadly tumour shrinks in size
A brave little boy who has endured six months in hospital stays, surgeries and chemo has stunned experts, on his way to beating the remarkable odds.
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After being diagnosed with a rare and deadly brain tumour at just 11 weeks old, a brave little boy is on his way to beating the odds.
Ten-month-old Hugo Long, from Lenox Head, has spent the past six months in hospital after a nurse noticed his head looked a little unusual in September last year.
An ultrasound scan confirmed Hugo had hydrocephalus, a build-up of fluid in the brain cavities, and he was flown from Lismore Base Hospital to Queensland Children’s Hospital.
His parents, Oliver Long and Brooke Carter, said it had been a challenging start to little Hugo’s life.
“Hugo has fought so hard; the most brutal fight,” Ms Carter, 37, said.
“Five gruelling chemotherapy rounds, of poisonous drugs made for adults, not tiny babies or children, of which three high-dose rounds were interrupted by persistent infections, seizures and time in intensive care.
“It was scary stuff, especially knowing that some babies have passed away during the same treatment.
“While it was all necessary to save Hugo’s life, the pain he endured is hard to reconcile.”
About 10 days ago a recent MRI delivered life changing news for the young family.
The tumour had shrunk by 93 per cent.
“Every doctor we have spoken with, including the leading AT/RT treatment oncologist, said they have never seen such an incredible response,” Ms Carter said.
“While this news was heartening, we had hoped and prayed the tumour would be gone. We wanted no evidence of disease. It was a big ask. We wanted a miracle.
“We know that Hugo still being here, smiley and happy, is our miracle. He has done remarkably well. We celebrate his courage and achievements every day.”
Although the test results were miraculous, there’s still a chance it could get worse for baby Hugo.
“AT/RT tumours can change fast due to their aggressive nature. One rogue mutation has no mechanism to stop dividing,” Ms Carter said.
“The remaining 7 per cent, equivalent to half a teaspoon, that resisted the intensive chemo does not want to die and left unattended will take only months to have its way.
“So now, a trial drug is our last line of defence to target the residual tumour cells from multiplying.”
The family has hopes the trial drug will allow them to keep hoping for our miracle while focusing on Hugo’s quality of life.
“We want to return to Lennox with our little boy and soak him up. He has lived in a hospital for six months,” Ms Carter said.
“It’s time for sunshine, grass and walks with our dogs – making the best memories and showing Hugo how beautiful life is.”
The family asked everyone to consider donating blood as often as possible.
“We know not everyone can, but if you can, please be brave for Hugo,” Ms Carter said.
You can support the family here.
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