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An eight-year-old with bone cancer was misdiagnosed twice before finally getting access to the life-saving treatment she needs.
And unbelievably it was the second time in a year her family were left fighting for a second opinion - her brother was eventually diagnosed with a bladder tumour after nine attempts to get him an ultrasound.
Aaron Morgan talks to KMTV about his battle to get his children diagnosed
In April Harmony Morgan-Young, now nine, was sent away from Deal's Victoria Hospital minor injuries unit and Margate's Queen Elizabeth the Queen Mother hospital with antibiotics after developing a mysterious lump, fatigue and tingling in her fingers which was making her drop thing.
Doctors thought she was suffering an infection and even though blood tests on her second visit suggested this was not the case she was again sent away with antibiotics and told it may be in its early stages.
Thankfully a family friend, who is a paramedic, agreed it didn't look right and was able to book an X-ray for Harmony, from Sandwich.
Results showed her forearm bone was being eaten into and further tests confirmed Harmony was suffering from Ewing sarcoma, a rare cancer that eats away at bone and surrounding tissue.
The results in June dealt a second cruel blow to the family who were already reeling from the news Harmony's brother Marley, now seven, was suffering from a benign tumour which has since been removed.
“If it were not for our friend booking this X-ray then this could have been a totally different story altogether," said dad Aaron Morgan, 32.
“The consultant at our local hospital was also dealing with my son’s tumour and took one look at the results and knew straight away this needed to be acted upon quickly. A full body scan was booked along with biopsies and bone marrow tests. The oncology team and consultants were fairly certain it was Ewing sarcoma but I held onto a tiny bit of hope that we surely could not be going through all this again with my daughter, a year after finding out my son also had cancer, although benign.
“Following the biopsy results, it took six days to confirm it was Ewing sarcoma."
Harmony now attends the University College London Hospital in London every two weeks for chemotherapy. She is currently on her tenth cycle and is also undergoing radiotherapy.
She faces having her arm amputated from the elbow to stop the cancer returning as it's feared too much damage has already been done to the bone.
Despite her gruelling schedule of treatment Mr Morgan says Harmony is "always smiling", adding: "I don't know how she does it, if it was me I wouldn't want to get out of bed in the morning."
The father-of-three and on-call firefighter added: “It’s vital more is done early on, during the triage stage. If Harmony had received an X-ray of the lump on April 29, her cancer would have been at an earlier stage and she would now be further into treatment.
"The impact this has had on the whole family is life-changing and I have had to give up my job due to care for Harmony. I would love and hope for sarcoma to be considered in every triage of a patient with an unexplained lump or mass in a bony area.”
Mr Morgan, who also has a five-year-old son, Ralphy, with partner Rebecca Young, 27, said: "It took nine attempts to get my boy an ultrasound to confirm he had a tumour in his bladder.
"I didn't want to believe it was happening again but Rebecca said this could be cancer again. To get an X-ray then and there would have nipped it in the bud."
He says sometimes knowing something is not right comes down to "parental instinct", adding: "We came away from Deal hospital and were not happy."
He added: "Her life has changed and all our lives have changed but at least she's still here."
His words come as it's revealed almost four in five children with bone cancer in the UK received one or more misdiagnoses, according to the Bone Cancer Research Trust.
The charity has teamed up with Children with Cancer UK to launch the Bone Cancer Awareness Initiative to better educate all key healthcare professionals on spotting the disease early.
Around 560 people are diagnosed each year in the UK and 28% are children and teenagers who are particularly at risk of misdiagnoses, with symptoms mistaken for growing pains, sporting injuries and pulled muscles.
Just 11% of children are referred via their GP and 22% by A&E.
In the UK, children visited a healthcare professional an average of six times before diagnosis, this compared to four times outside of the UK.
Early diagnosis of the disease dramatically improves patient outcomes and reduces the need for potentially life-altering treatment and surgery, however, healthcare professionals, including GPs, currently receive no dedicated training on the signs and symptoms of the disease.
Dr Jasmine Parkinson, Research and Grants Manager at Children with Cancer UK, said: “Too many young children are slipping through the net in terms of bone cancer diagnosis, and it’s vital we take action.
“An early diagnosis really can be the difference between life or death.”
Dr Zoe Davison, Head of Research, Information & Support at the Bone Cancer Research Trust, said: “Primary bone cancer patients currently make an average of eight visits to healthcare professionals and over a quarter wait seven months before receiving a diagnosis, 13% wait more than a year. We are determined to change this by taking a proactive approach and educating healthcare professionals."
To get involved and read more click here.
