Parents of boy with neuroblastoma fundraise for US relapse treatment
- 20.10.2020
- JessicaMG
- Clinical-negligence, Media-Coverage
8-year-old Kian Musgrave was diagnosed with stage 4 neuroblastoma – a particular form of childhood cancer – when he was just a baby. He was first diagnosed in October 2013, and in December 2015 the cancer returned. His parents have been fund raising ever since in a bid to raise the money needed to continue send him to America for pioneering relapse therapy.
Kian’s story
Doctors initially thought the infant was suffering from a virus after he presented weak, tired, suffering with temperatures and reluctant to use his legs for a period of several weeks. After various trips to his GP and a visit to A&E, Kian was eventually referred to a paediatrician, however while waiting for his appointment his temperate soared and couldn’t be controlled by Calpol - he cried all the time, wouldn't stand up, wouldn't eat, wouldn't sleep or settle and appeared lifeless.
Kian’s parents took him to A&E once more and he was admitted to hospital where he received a blood transfusion after it was found his oxygen levels were low and his blood was clotting continuously.
The hospital took many blood tests, x-rays, scans and a bone biopsy was carried out on his pelvis in order to rule out a suspected aggressive bone infection.
After a week in hospital, Kian’s parents were informed that Kian had neuroblastoma cancer and it was high risk stage 4 + MYCN cell (the most aggressive form). The cancer started above his left kidney on an adrenal gland where a tumour had developed and the cancer had spread to all his bones, bone marrow and a lymph node next to his adrenal gland. In total, little Kian had 27 tumours all over his body.
What is neuroblastoma cancer?
Neuroblastoma is a cancer that develops in nerve cells. It mostly affects children under the age of five. Neuroblastoma tumours most often occur in one of the adrenal glands, in the abdomen. First symptoms are loss of appetite, tiredness and pain in the bones, it affects around 83 children per year in Great Britain.
How you can help
Having recently been advised to take their son home for palliative care only, Kian’s parent’s have continued to fund raise to access the live saving treatment which is only available in the US, where Kian is seen annually re relapse prevention.
As such, Kian’s parents are fundraising in an effort to pay for this pioneering treatment. Any and all donations are very much appreciated – you can donate via Kian’s website here http://www.caringforkian.co.uk/donate/