Heartbreaking discovery after 6mo baby’s brain tumour removed

“He is thriving now and has been so resilient; he is a true champion, but he has also begun his biggest battle for survival."

Parents of a six-month-old baby boy have dealt with another blow after learning their son is suffering from a rare syndrome that will ultimately result in one devastating outcome.

Louis the Brave, as his family affectionately calls him, is battling a rare syndrome that will see him develop another form of cancer in his childhood.

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From bad to worse

After the Royal Flying Doctor Service rushed Louis and his mum, Justine Boylen, to Perth Children’s Hospital from Western Australia’s northwest, they made a shocking discovery.

Initially taken to Geraldton Hospital with gastro symptoms, Ms Boylen pushed for doctors to perform a CT scan after fluid built up on his brain.

And as suspected, the scan confirmed baby Louis had fluid build-up, but it also revealed a brain tumour.

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The longest four days

Louis' father and little brother, Charles, embarked on a long journey, driving for four hours to reach Perth, where Louis and his mum awaited a critical operation to remove the tumour

They endured four tense days leading up to the surgery, and the operation, lasting nine gruelling hours, successfully removed the tumour. 

However, the relief was short-lived as subsequent tests revealed a grave diagnosis: Louis had a grade three choroid plexus carcinoma, an uncommon and aggressive form of cancer not seen in Perth for a decade.

Louis with dad Rob Boylen. Picture: GoFundMe

A grim realisation 

Sadly, there's a grim certainty that six-month-old Louis will encounter another cancer during his childhood.

Further investigations confirmed Louis's condition as Li-Fraumeni Syndrome, a rare genetic mutation affecting the TP53 gene, known for its role in suppressing cancer. 

Individuals with this syndrome face heightened risks of developing various rare cancers, especially during childhood. 

Only three published trials on the Li-Fraumeni Syndrome include children, and the outcomes of these studies varied drastically. 

In one study, only two out of four children survived beyond the ages of five and eight before succumbing to another cancer. 

Another study reported a single survivor out of three battling bone cancer. 

Tragically, the third study provided no hope for survival.

A daunting decision

The devastating news left Louis's family reeling. 

Faced with daunting choices, they weighed options between aggressive chemotherapy, including stem cell rescue post-bone marrow depletion, or opting for palliative care. 

“Looking back on the first 4.5 months we had together as a family since Louis was born were pure bliss, ignorance is bliss,” said Ms Boylen on the GoFundMe page set up Louis’ aunties.

"He looks like any other beautiful 6-month-old boy, smiling, rolling over and communicating." Source: GoFundMe

“A fighting chance”

“Rob and Justine decided to try and give Louis a fighting chance and start mega chemotherapy,” the page revealed.

Over the coming nine months, Louis will be prescribed the most intense dose of chemotherapy a baby can be given.

However, if the cancer returns, doctors won’t have any other means to treat the beautiful baby boy.

“He is thriving now and has been so resilient; he is a true champion, but he has also begun his biggest battle for survival,” they said.

The GoFundMe page was created to help the family pay for medical and living expenses while Louis receives treatment in Perth.

Over $46,000 has been raised so far, with hundreds of comments left supporting the family and cheering little Louis on.

One donor wrote, “Hoping that a miracle is in store for gorgeous baby Louis…thinking of all of you.” 

“We are right behind you guys, supporting you every step of the way,” added another.

“Sending love light prayers and best wishes for a good outcome for your precious brave Louis. I admire your strength Justine for never giving up and following your instincts. Thinking of you and your beautiful family,” another added.

Originally published as Heartbreaking discovery after 6mo baby’s brain tumour removed