A HEARTBROKEN mum has opened up about the devastating moment her four-year-old was diagnosed with stage 4 cancer after going to the GP with a stomach ache.
Enya Gooding, 23, from Collumpton, Devon, took little Cayla Jones to the doctors in June last year after she complained of a sore tummy for a few nights on the trot.
The GP initially dismissed her symptoms as a urine infection and gave her a round of antibiotics – but Cayla still felt poorly after finishing the week-long course.
Enya got a second appointment on July 2 with a different doctor and further tests revealed she had stage 4 neuroblastoma.
The brave little girl went through eight rounds of chemotherapy in just 70 days, as well as surgery to remove the tumour, high-dose BuMel chemo and radiotherapy.
The family are now desperately fundraising for a vaccine treatment in the USA to prevent relapse.
Enya recalled how she thought Cayla was pretending to have a stomach ache so she could stay up later.
Not wanting to take any chances, she booked her daughter an appointment.
“The GP didn’t seem to think there was anything to worry about and said it may be a urine infection so he gave us a round of antibiotics and that was that,” Enya said.
When they failed to make any difference, worried Enya shared her concerns with a different doctor.
“There had been a lot of change in Cayla’s life and I worried that that was causing her stress,” she explained.
“I’d just had my second baby, Finnley, earlier in the year and Cayla was preparing to start big school in September.
“He did a full check of her and when he got to her stomach said he could feel a mass and called another doctor for a second opinion.
“They were throwing around words like hernia and appendix, but I still wasn’t too concerned – it didn’t sound like it would be anything too sinister.
“But then I caught sight of their faces – they both had a strange look about them and that was when I started to worry.”
They gave Enya a letter to take to A&E that meant they wouldn’t need to wait, and Cayla was admitted that day.
When in paedeatrics at the Royal Devon and Exeter Hospital, she underwent blood and urine tests and an ultrasound.
Eventually an oncologist called Enya and partner Brad Jones, 25, into a private room.
Enya said: “My heart sank. I heard them say they’d found a tumour and Brad and I both just broke down, we couldn’t speak.
“I couldn’t even bring myself to ask any questions, I just tried to pull myself together and put a brave face on for Cayla so as not to scare her.”
Throughout the whole ordeal, the couple have insisted on staying strong for Cayla’s sake.
Enya explained: “I don’t know if there is a right way to act in that situation, we just had to do what was right for us and in that moment I knew she needed me to be calm.”
The family were transferred to Bristol Children’s Hospital a few days later for further scans and a biopsy of the tumour.
Enya’s worst nightmare came true when the results were worse than expected.
“She had an MRI and NIBG scan to show where the disease was and if it had travelled, and we saw that it had gone all the way up her diaphragm and into the lymph nodes in her neck,” she said.
“We were really lucky the cancer wasn’t in her bones – which is usually the case with stage four – so that meant we didn’t have to wait to clear out her bones before starting treatment.”
Cayla started chemotherapy on July 19, having eight rounds in 70 days. By the fourth round the tumours in her neck had disappeared completely and the main tumour in her stomach had shrunk.
But by the final round, she was struggling.
Enya said: “At the end of the 70 days her white blood cell count had flat-lined and she had to be in isolation for three weeks because her immune system was so weak.
“It was really tough because we had the baby too, so trying to juggle everything was never easy, but we got through it and an MRI showed two thirds of the stomach tumour had disappeared.”
Her doctors were pleased with how the chemotherapy had gone, but Cayla still had to have surgery to remove as much of the remaining tumour as possible.
The family had one week together between the end of chemo and her operation.
The symptoms and signs of the cancer that affects babies and young children...
NEUROBLASTOMA is a rare form of cancer that mostly affects babies and young children. It develops in nerve cells that have been left behind from their development in the womb.
It usually develops in the adrenal glands next to the kidneys but can also form in the spinal cord, neck, chest, pelvis or abdomen and is able to spread to other organs.
It is unknown what causes the cancer but it affects around 100 children in the UK every year with many of them under five.
The outlook for children diagnosed with the condition varies and mainly depends on if the cancer has spread.
The early signs and symptoms of neuroblastoma can be very hard to spot, especially in young babies as they can be mistaken for other common conditions.
However, according to NHS Choices, signs and symptoms of neuroblastoma include:
- A swollen painful tummy
- Constipation
- Breathlessness
- Difficult swallowing
- A lump in the neck
- Blue lumps on the skin and bruising
- Fatigue, weakness and bone pain
- Jerky eye and muscle movements
There are five main treatments for neuroblastoma and doctors will decide which course of action to take based upon how advanced the disease is.
One option is surgery to remove the cancer and another is chemotherapy to try and kill the cancer cells.
Other treatments include radiotherapy, a stem cell transplant and immunotherapy.
Enya said: “It was so nice to have her home, even if it was only for a few days. We spent the entire time together and she was OK – just nervous.”
After eight hours in surgery, 80 per cent of the tumour had been removed – but Cayla was in tears when Enya went to see her.
“I asked her what was wrong and she was crying away because she wanted the probe off of her toe – that sums up Cayla!” Enya smiled.
“She can handle this major surgery, but this little probe on her toe was doing her head in.”
Brave Cayla then had to have a stem cell harvest – a procedure to obtain stem cells for use in cancer treatment.
“She was in hospital in Bristol for two days and in the first day alone they got 5 million cells, which was amazing,” Enya said.
“When she got home from that she was so well – her appetite was better than before she was ill! It was lovely to see her like it.”
Cayla went through a further week of high dose Bumel chemotherapy – four times a day for six days, and then a final dose on the seventh day.
She was discharged on December 17 and has her next scans booked in for mid-January to confirm if she’s officially in remission before she has a final round of radiotherapy at the end of the month.
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Now her parents are fundraising to send her to the Memorial Sloan Kettering Cancer Center in New York, where they offer a vaccine that drastically lowers the chances of cancer coming back.
So far they have raised almost £28,000 of their £200,000 target with the help of the Bradley Lowery Foundation.
Six-year-old Bradley tragically lost his fight with neuroblastoma last year, and his family are now helping other people like Cayla to fundraise for treatment not available on the NHS.
Enya said: “When we first got the diagnosis, like everyone else, I did the worst thing possible and went online.
“Aside from all the awful facts and statistics, I found information on the Center and the success rate was 85 per cent.
“The odds of the cancer coming back in the first six months are 50/50, so the odds aren’t great.
“The Bradley Lowery Foundation has been such a huge help directing us with our fundraising, and the team there can completely relate to what we’re going through as they’ve been through the same process.
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“All we want is to give our daughter the best chance at living a long, healthy life just like any other parent.”
You can donate to Cayla’s Fight here.
We previously told how an eight-year-old boy died from an aggressive form of cancer just hours after his parents made a desperate plea for donations for experimental treatment.
https://textbacklinkexchanges.com/my-four-year-olds-tummy-ache-turned-out-to-be-stage-4-cancer-now-were-desperately-fundraising-to-stop-it-coming-back/
News Pictures My four-year-old’s tummy ache turned out to be stage 4 cancer – now we’re desperately fundraising to stop it coming back
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