Mum of brave girl, 9, from Westgate reveals family's devastation that cancer is back
11:25, 07 January 2021
updated: 11:37, 07 January 2021
The family of a nine-year-old girl who has been fighting aggressive cancer says it has returned and spread throughout her body.
Just a month after the news Aurora Pile-Gray, from Westgate-on-Sea, was in remission from stage 4 Burkitts Lymphoma, doctors have now found the disease has progressed rapidly.
In an emotional blog post, her mum Keisha says it is now in her skull, the bones in her face, her upper and lower eyelids, neck glands, chest, lungs, spine, abdomen, kidneys, adrenal glands, liver and her pelvis.
The St Crispin's schoolgirl was diagnosed last April, just weeks after complaining of a sore chin.
After undergoing gruelling rounds of chemotherapy she was given the all-clear in September, only for her parents to be told it was back two weeks later and more aggressive than ever.
A campaign was launched to help find a bone marrow donor and a fundraiser to raise £300,000 for treatment abroad.
Then, in November, doctors told her family the amazing news that Aurora was back in remission and a donor had been found.
But her mum, who also has baby son Oscar and toddler Ada-Ireland, says her brave daughter, who is at The Royal Marsden in London, has now relapsed for a second time.
Written in her blog, Growing Pains and Paper Planes, Keisha says Aurora had swollen up on Christmas Eve, something that wasn't unusual, but that something didn't sit right.
"I gave it a day to see if it reduced, but it didn't, it just got progressively worse," she said.
"Aurora has been on prophylactic antibiotics, alongside IV antibiotics, but none of them seemed to be helping.
"She was prescribed antibiotic eye drops, Piriton and steroids in case it was an allergy, but her swollen little face didn’t improve.
"I think I’d made the connection in the back of my mind before they told me."
The concerns were that if it was an infection it could prevent transplant - or, worse, her disease had come back.
Before the results of Aurora's positron emission tomography (PET) scan was back, her parents were told it was highly likely that her eye swelling was caused by the lymphoma returning.
Keisha says a relapse of Burkitt’s lymphoma once is bad, but twice leaves limited options with treatment.
"I’d already prepared for them to say that it was lymphoma, but I hadn’t prepared to for her to tell me that Aurora’s cancer was everywhere," she said.
Keisha says Aurora had an MRI scan on December 23, just before she started to swell, which was clear.
Just eight days later, the PET scan showed the disease was all over her body.
"We have options, but options that need time to come to fruition, and time is something that we don’t have," said Keisha.
"We’re not ready to give up on her, but we have weeks to wait for anything they may give her a fighting chance, and since her disease progression has continued despite intensive chemotherapy, there’s no guarantee that she will respond to any more.
"Chemotherapy alone will no longer be enough to achieve remission for transplant, and so we need to look at novel treatments and new clinical trials.
"The issue is, the eligibility for clinical trials is so specific, and it seems there’s always something preventing Aurora moving forward."
Keisha admits it is hard not to think the worst and that's what they have been told to prepare for.
"We met with the symptom care team to discuss palliative care for Aurora, care for at home if treatment fails and we want her to spend the rest of her days with her family," she said.
"If treatment is unsuccessful, we have weeks left with our baby, weeks we want to spend filling with happy memories and home comforts, not hospitals and isolation.
"She will deteriorate quickly, and could lose the use of her legs, bowel and bladder as well as multiple other side effects, which we can’t bear to imagine.
'We want to have hope, but her disease keeps destroying that, along with her body' - Keisha Pile-Gray
"It hasn’t sunk in that we are in this position.
"Nine months ago my baby was dancing around the house, practicing her karate kicks with her little sister and cooing over her baby brother; now we face the terrifying realisation that she won’t see another birthday, or Christmas.
"We want to have hope, but her disease keeps destroying that, along with her body.
"If targeted therapy goes ahead and successfully leads to remission we still have to proceed with transplant, and the likelihood is that even that won’t give us a year.
"Without a remission the transplant isn’t an option because it’s futile. It wouldn’t work."
Aurora is now on a new chemotherapy drug to try to tide her over until she is eligible for a clinical drug trial in 35 days.
Her parents are also asking for consultants from around the world to try to help their child.
"We're desperate for anything that might help keep her with us, but for now we are spending every waking minute treasuring her for everything she is and with everything we have," Keisha added.
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