This mom described her rollercoaster journey as she went from celebrating the arrival of her perfect baby girl, to being told her tiny tot faced being paralyzed by a cancerous tumor on her spine just 18 days later.
Within two weeks of Aurora-Grace's arrival, receptionist Emily Turnbull and her partner Matt Tildesley became alarmed by their newborn's distended stomach. So, they took her to the GP who, suspecting it was trapped wind, advised them to try a different milk formula.
But the following day, Emily saw no change in her daughter, so she saw the GP again and was referred to the city's Royal Hospital for Sick Children where tests showed she was diagnosed each year with neuroblastoma – a rare cancer mostly affecting the very young, making her one of 100 children under five in the UK, according to the NHS.
Normally developing in nerve cells left behind from a baby's development in the womb, Rory, as they call the little girl, had a tumor on her upper spine which had spread to her liver putting her at risk of paralysis with or without surgery.
They are now delighted to be celebrating Rory's first year cancer free.
“The doctors explained that any sort of spinal surgery has a major risk of paralysis," Emily said.
“But if the tumor grew and impacted the spine further, it could have the same result."
While their eldest, Jacob, had been a complete surprise to Emily and Matt, they had been trying for a second baby for more than six months when they fell pregnant with Rory.
“We were ready to throw in the towel," said Emily. “Then, in May 2018, my period was late, so I picked up a pregnancy test."
“When it came back positive I couldn't believe it, I had to do a second one. Matt was with me and we were both so happy with the news."
As she bled throughout the first trimester, Emily had regular check-ups every two weeks.
“Sometimes the bleeding was heavier than your usual spotting," she said.
“Luckily, though, at every check-up we were told things were fine and it settled down by the second trimester," she said.
And when Rory was born at St John's Hospital, everything seemed perfect.
“Everything was as it should be," said Emily. “Rory seemed happy and healthy."
“Jacob was over the moon to be a big brother. He'd been so excited to have a little sister," she continued.
“I'm not sure it would have played out the same way if it had been a little brother, though, as he's obsessed with trains and I don't think he would have liked another boy stealing his toys!"
But Rory's temperament seemed vastly different to that of her brother at the same age.
“Jacob was such a peaceful, content baby, but Rory was the complete opposite, she was really grumpy," Emily said.
“At the time, we thought she was just a crier and whinger. It was non-stop, day and night, 24/7."
Then, on March 14, the couple noticed their baby's alarmingly distended stomach and things escalated from there.
"This time, the doctor performed a full examination and I could see when he pushed her tummy he wasn't happy," Emily continued.
“He printed off a letter and I could see straight away it was addressed to the Royal Hospital for Sick Children, in Edinburgh, so I knew it was serious."
Arriving at A&E, Rory was quickly seen by a pediatrician and given x-rays, an ultrasound and blood tests.
After doctors spotted a shadow above her left lung, she was kept in overnight, before having a further ultrasound the following day.
“The doctor said it was like a jigsaw, they were just putting together the pieces," Emily said.
“It was so hard, Rory was only two weeks old," she said.
After the second ultrasound, doctors took Emily aside.
“They walked me into a room which said 'Do not disturb' on the door and I thought, 'This is not good at all,'" she continued.
“They didn't even let me wait for Matt, who was dropping Jacob off at his granny's," she said.
“The doctor told me I wasn't going to like what he had to say, then proceeded to tell me he was pretty sure Rory had cancer. That's when he mentioned neuroblastoma, which I'd heard of before from cases in the local press."
“It knocked me into silence. It knocked everything out of me," she continued.
While Rory had a CT scan, Emily broke the devastating news to Matt.
“I just blurted it out over the phone," she recalled. “That's when it all hit me and I broke down in tears. You never expect to hear that news, especially about your newborn," she said.
“It was a horrible whirlwind of emotions that I'll never forget."
Two days later, doctors' suspicions were confirmed when scan results revealed Rory had a neuroblastoma tumor on her upper spine, which had spread to her liver.
“The doctors told us the cancer had likely been growing while Rory was still in the womb, which was why it had spread already," Emily explained.
Rory's medical team decided to begin with chemotherapy, hoping to shrink the tumor and remove the need for surgery.
The cancer-fighting drugs were given over three days, with 18 days in between, in a cycle that was repeated four times.
During three grueling months of treatment, the baby suffered with extreme diarrhea, staying in ICU for the first week so she had specialist one-to-one care.
“It was awful to watch as a parent," Emily explained. “We had to sit there as she was pumped full of these horrible drugs."
“Parents can't stay over at ICU and leaving behind your three week old baby doesn't feel very nice all."
But when Rory was discharged, doctors were confident that the chemotherapy was already working.
Then, just over a week into treatment, the baby had a seizure and was found to have a high temperature after picking up an infection through the PICC line in her thigh used to administer her chemo.
Worried that she could develop sepsis, a sometimes life-threatening reaction to an infection, doctors put Rory in an induced coma so that her body could heal and gave her high-strength antibiotics.
“It got bad very quickly," Emily said.
“Rory was put in an induced coma and the doctor told us to prepare for the worst."
Miraculously, within 24 hours Rory made a startling recovery and the fever began to retreat.
After five days under sedation, the tot was woken from her coma to start a second round of chemo.
Going from strength to strength, regular scans showed Rory's tumor was shrinking and her liver was returning to a healthy size.
Finally, after six weeks in hospital, she was allowed to go home, returning to hospital as an outpatient three times a week for treatment.
“It was such a joy being able to bring her home," Emily explained.
“Jacob was over the moon. It was really tough on him, having his brand new sister snapped away after such a short amount of time. We FaceTimed him from hospital, when Rory was having good days, but nothing could compare to bringing her back."
After finishing her penultimate round of chemotherapy at the end of May, Rory had an MRI scan proving to be cancer free. Meaning she could skip her final round of treatment.
“They told us the tumor had pretty much disappeared and her liver was back to normal," Emily said. “The tumor had been completely wiped out."
Given ultrasounds every month for the next three months, in September an MRI scan confirmed that Rory had officially gone into remission.
Continuing with monthly ultrasounds, plus quarterly MRI scans the family were marking a milestone they thought they might never reach.
“The local bowls society let us use their hall for free and we had a big get together with friends and family to celebrate," Emily explained. “It was more for us than Rory."
“We've all been through the mill and it felt like a way to celebrate what a fighter she's been."
Rory will have ultrasounds bi-monthly and MRI scans every six months for the next year, to check the cancer has not returned.
But last month, the family celebrated her first anniversary of going into remission.
“It feels so special to have got to this point," Emily said.
“Rory's such a wild child now and outsiders would never guess what she's been through. She's full of energy and growing so much," she continued.
“After she was first diagnosed with neuroblastoma, I desperately searched for a story with a happy ending, but it was a real struggle to find one."
“Now our little girl is on the mend, we can show the other 100 or so families out there affected by this horrible disease every year that there really can be a happy ending. Our Rory is living proof of that."
To find out more about Neuroblastoma UK, visit www.neuroblastoma.org.uk
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