•  Neuroblastoma is a solid tumour childhood cancer.  Around 100 children in the UK are diagnosed each year, mostly in under fives.  The stage of the disease and age of the child at diagnosis determines the survival probability.  In children under one, even those with the most severe disease (stage IV- where metastatic and bone marrow disease is involved) have fairly good survival rates.  Older children usually present with stage IV disease and their prognosis is poorer.

Helen was diagnosed with stage IV at the age of 4 years 2 months and was given a 20% chance of survival.

•  The site of the tumour varies.  the disease is linked to the sympathetic nervous system and most tumours originate in the abdomen around the adrenal gland, but in Helen's case the tumour was in her chest and spine.  The location of the tumour can cause varying symptoms.  A chest tumour can have a chest infection or cough.  Where the spine is involved  - awkward gait and difficulty when walking, difficulty passing urine and paralysis.  Generally though there may be few symptoms other than the child being lethargic and "off their food".

•  Many of the vague symptoms of Neuroblastoma can be passed off as other normal childhood illnesses, so it is difficult to diagnose.  As it is rare many GPs will never encounter a case and will look for other solutions first.  In Helen's case it was only when Kidney stones were ruled out and she was developing paralysis in her legs that an MRI scan was undertaken and the tumour found.

•  Once a tumour is suspected the child will be referred to a specialist centre for further tests and proper diagnosis.  While frightening this is a good move as these centres deal daily with all forms of Childhood Cancer and Leukaemia and they are the specialists to explain the diagnosis and treatment to the family.  During the treatment period and for some time afterwards these people will be the  key contacts for the family and often become like friends.

Many families find returning to the treatment centre for checkups quite frightening,  fearful that their world will be turned upside down again with news of relapse.

In Helen's case she enjoyed going back to the hospital and catching up with the staff who looked after her.  When she relapsed we already had a good idea that the tumour had returned, but it was still a shock to have it confirmed, we weren't fearful of the hospital because we knew that there she would be given the pain relief and support she needed.