Saving Celeste

The inside story of how a loving family and a dedicated Royal Children’s Hospital team rallied to help a brave five-year-old girl in her cancer fight.

Celeste sat in the emergency department, waiting to find out whether the “lump in my tummy” was cancer, and looked up at her terrified parents.

“You guys are worried, but I’m going to be fine,” she said. “Don’t worry.”

Ben’s pride – and amazement – at his daughter’s positivity is clear as he tells the story.

“Five weeks ago, we were just a normal sort of family going about our lives in a pretty standard way,” he says. “All of a sudden everything was just turned upside down.”

It was a simple but persistent cough that prompted Celeste’s mother Rachael to take her to the doctor.

But in checking for signs of glandular fever the GP noticed a tightness in Celeste’s stomach and booked an ultrasound.

A day later they got a call telling them to “drop everything” and return to the clinic.

“(They) found a pretty significant mass on her right kidney,” Ben says.

“Next minute, we were on our way into the Royal Children’s emergency department.

“The whole world just pretty much stopped at approximately 10.30 on that Thursday.”

A scan on the Friday confirmed their fears – Celeste had a type of kidney cancer, Wilms tumour – and she started a four-week course of chemotherapy the next day to prepare for surgery.

“Everything moved really, really quickly,” Ben says.

But, he adds, Celeste’s optimism helped to keep them going.

He and Rachael were worried for her fifth birthday – which fell shortly after diagnosis – but she woke them up bright and early ready to celebrate, and marked the occasion with a fairy party.

CELESTE knew she had a lump that was “not supposed to be there”, but Ben says she took it in her stride and had been happy to talk about and document her experience.

“I wrote a newspaper article about the lump in my tummy,” Celeste told the Herald Sun when we first met her.

Moments later her attention was back to the toys in her bag – sparkly pink like most of her belongings – and she shrieked with laughter as she pulled out colourful “worms” one by one.

Ben has promised to shave his head when post-surgery chemotherapy takes his daughter’s hair and asks Celeste about their plans for “when our heads are bald”.

“We’re going to paint our heads pink,” she says, eyes wide with glee.

Even last Monday, when they arrived for surgery, Celeste had remained upbeat, climbing over the waiting room couches, playing the ukulele with Captain Starlight and listing the three foods she could not wait to eat afterwards.

“Cookies, chocolate and chocolate cookies,” she said.

Rachael tapped her bag with a knowing smile, and said she was well stocked.

It was not until they were called into pre-op that the reality of the situation hit little Celeste, whose main complaint until then had just been her hunger.

She cried in her mother’s arms, her chest shaking with each sob as Rachael stroked her hair and silently blinked away her own tears.

“Mummy, I want to go home,” she cried.

Rachael and Ben hugged their daughter tighter.

But at The Royal Children’s Hospital, help is always nearby and a child life therapist appeared at Celeste’s bedside, a warm smile beneath her mask.

She coaxed a giggle from Celeste, who laughed at a toy egg, which popped out a green baby dinosaur when squeezed between her fingers.

When the time came, Ben leant down to whisper goodbye and promised his daughter she would be fine.

“I love you, I’ll see you soon,” he said.

Rachael walked beside Celeste’s bed, holding her hand as she was wheeled away for anaesthetic.

Ben stayed back in the now empty hospital bay, clutching his daughter’s bag of toys, and their agonising wait began.

IN the theatre, Paediatric Surgery department director Michael Nightingale and his team were ready.

Dr Nightingale said the chemotherapy Celeste underwent would make the tumour easier to remove.

“Her tumour is half the size of what it was,” he said.

“But the real advantage to a surgeon is that it makes the tumour a little bit more robust and easier to handle.”

Over the space of a few hours, Dr Nightingale and his team would carefully remove one of Celeste’s kidneys, and with it the tumour that had caused so much grief.

The nurses observed the surgeons with practised eyes, and seemed to know which tool to sel ect from their trolley of carefully counted and sterilised instruments before Dr Nightingale even asked.

Eventually Dr Nightingale stepped away from Celeste, removed his gloves and reached for the phone. The surgery had gone well.

“The poor parents are sitting out there with the worst three hours of their entire life,” he said.

“I’m pleased it went well, it’s always fun ringing the parents.”

He said while he was the one who got to make that call, it was a “team effort” to save Celeste.

“The good news is that if she takes good care of herself and of her kidney and eats a good diet … there’s no reason that she can’t live a completely normal life,” he said.

“There are some people who are born with only one kidney.”

A COMPLETELY normal life sounds amazing to Ben and Rachael, who cannot wait for Celeste to return home to one-year-old sister Emily, who she has missed terribly this week while recovering in hospital.

Ben says it was “a massive relief” to get Dr Nightingale’s call, and later be reunited with their daughter.

“It was hard to see her recovering … but we’d been looking forward to seeing her since the moment she went into theatre,” he says.

“It was beautiful to be able to see our girl again.”

After cuddles – and a chocolate Paddle Pop – Celeste turned to them and asked, “Is the lump gone?” Yes, they told her. Yes it is.

Three days after surgery, Celeste and her family are in good spirits.

Recovery had been more difficult than expected after she caught a virus that triggered a nasty fever.

But on Thursday afternoon, Celeste feels well enough to briefly leave her room, and even ask her dad to “race” her wheelchair down the hospital’s main corridor. Five weeks to the day since she had told her parents everything would be OK, Dr Nightingale had called with an update. Celeste had been right. Her tumour was stage one and had not spread.

Ben says no words can capture their gratitude to the hospital and its staff.

“It takes a very special sort of person to do day in and day out what they do,” he says. “They have made what has been a really difficult journey for all of us a hell of a lot easier than it could have been.”

Originally published in the Herald Sun, Sunday, 2nd, April, 2023
Words: Sarah Booth
Pictures: Mark Stewart

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