Harmony's symptoms were feeling unwell and a mysterious lump appeared on the side of her right arm, she also started feeling tired and developed tingling feelings in her fingers, which was making her drop things.
This all started in the middle of April and I took her to our local minor injuries unit in Deal, Kent, on the 29th April where she was told she had an infection despite there being no obvious signs of an infection in the slightest, she was given a course of antibiotics to take.
I got home and my partner and I had a discussion and both of us were not happy with what we had been told, so later that evening I took it upon myself to take her to a different hospital to get a second opinion, this time I took her to the Queen Elizabeth The Queen Mother Hospital in Margate to see the paediatric team. They investigated this further and did an ultrasound of her arm and some blood tests. We waited for all the results to come back to find out they were satisfied with the ultrasound findings and the blood test results showed no evidence of an infection.
The nurses and doctors all seemed just as baffled as what I did and agreed that she should continue to take her antibiotics despite the blood tests showing no infection. They said that it could be an infection in its early stages.
A friend of my partners is a paramedic and agreed with us that there was no way this was an infection and we were not satisfied with what we were being told. So, our friend was able to book us an X-ray for Harmony, which revealed the damage that had been done to her ulna bone (long bone in the forearm) and that it had been eating into her bone.
I feel that if it were not for our friend booking this X-ray to reveal what the consultant thought it was, which was osteosarcoma or Ewing Sarcoma then this could have been a totally different story altogether.
The consultant at our local hospital was also dealing with my son’s tumour took one look at the results and knew straight away this needed to be acted upon quickly which it was. A full body scan was booked along with the biopsies and bone marrows. The oncology team and consultants were all 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 in the bladder all be it on the benign scale.
It took 6 days after the biopsy results had been done to confirm it was Ewing sarcoma.
Harmony attends the University College London Hospital in London every two weeks for her chemotherapy, one of these is a VDC cycle which is two days and the other one is an IE cycle which lasts five days. She is currently having her 7th cycle.
I believe it is vital that more is done early during triage and that just because they are young it does not mean they are not able to get cancer.
I have since been to my surgery to put posters up that I received through the post to put up and I have also been to the minor injuries unit to raise awareness after misdiagnosing my daughter for an infection.
Had this lump been given an X-ray on the 29th of April she would have been in the early stages and also 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 the time Harmony needs.
I would love and hope for sarcoma to be considered at every triage a patient has that comes in with an unexplained lump or mass in any bony area.
I feel sad that I have to live with this and I want it to end.