Skye was born on the 5th November 2008. The pregnancy and birth were normal, and during his formative years, Skye has been a healthy and happy young boy. He has developed normally, he has been to a combination of Nursery and Pre-School and in September 2013, he was due to start his formal schooling.
Skye has a younger brother called Jesse, and the two of them have brought their parents a great deal of joy, despite the anxieties of the past 20 months. As a family, we were fortunate to enjoy an extended overseas holiday together from December 2012 to April 2013.
We always knew that this was a special time for us all, but in retrospect it was an unbelievably precious time for us as a family. We still can't believe that during that period, there was absolutely no indication of what was lurking beneath the surface.
On Friday the 26th July 2013, Skye felt a little nauseous when he woke up, but as the day progressed, the nausea disappeared and he was his usual bubbly self. The pattern repeated itself the next day, but this time, he vomited. We suspected that he had eaten something which had disagreed with him, but It became a daily pattern, and after a few days, we booked to see the GP. This was to be the beginning of a very difficult journey.
After numerous visits to the GP and the failure of medication for acid-reflux to stem the daily episodes of vomiting. We insisted on a referral to the paediatrician. They said two weeks. We said NO! Today! That day was the 27th August 2013.
On that day, Skye was diagnosed with a brain tumour after a CT scan at the John Radcliffe Hospital in Oxford. Following surgery less than a week later, and tissue analysis, the tumour was identified as a Grade IV metastatic medulloblastoma, which is the most commonly occurring paediatric brain tumour, but comes in a whole range of guises depending on it's stage of development.
It is an aggressive tumour and is categorised as a Primitive Neuroectodermal Tumour (PNET) originating in the cerebellum, the part of the brain which controls movement and co-ordination. Although the doctors said we had caught it early, it had already metastasised throughout the brain and spinal cord.
Surgery, was quickly followed by 4 cycles of chemotherapy over 11 weeks, and a further 5 weeks of hyper-fractionated radiotherapy. After a 4 week period of recovery, Skye endured High Dose Chemotherapy, confining him to hospital for 7 and a half weeks. He enjoyed 4 weeks at home, and was due to head back to hospital on the 14th May 2014 for another round of High Dose Thiotepa. A urinary tract infection delayed the treatment until the 28th May, which in hindsight was fortuitous.
Instead of getting stronger, it was apparent that Skye was getting weaker and an emergency MRI scan on the 20th May revealed that there were widespread White Matter Lesions within the brain and spinal cord, which caused a flurry of correspondence between consultants across the UK and abroad. He was started on high dose steroids to counter inflammation, but we were informed that this was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan Protocol has been with drawn from use in the UK.
It was initially diagnosed as radio-necrosis, which had been brought on by the combination of therapies which he has endured. It was later confirmed as radio-chemo neurotoxicity. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. But he fought on, as did we. The treatment left him weak and vulnerable, yet strong and brave!
Our dear boy Skye Benjamin Hall sadly died at home on 29th August 2014.