DIAGNOSIS
Our concerns began when we noticed a deterioration in his vision. He was struggling to identify items on toys and in books, and was holding pages unusually close to his face. We arranged for Samuel to visit firstly an Orthoptist, then an Opthalmologist. He was not however diagnosed until at our request and persistence on 5th February 2004 we saw a Paediatric Opthalmologist at Bournemouth Hospital. Through her ability to communicate with Samuel and a thorough examination she expressed her own concerns regarding his vision and arranged for Samuel to have an MRI Scan the following day at Poole Hospital. This request in itself caused some mild consternation as Samuel had happily been running round at Bournemouth Hospital, showing remarkable ability and agility and displayed no outward signs of someone whose vision, as it transpired, was significantly impaired. Samuel was very compliant with the MRI procedure, on the following day, but the shock result for us was that the scan sadly indicated he had a benign brain tumour.
Discussions took place as to the next course of action. It was arranged for us to travel up to Great Ormond Street Children’s Hospital for further assessment and follow up action. Rather than by ambulance we agreed as a family to drive to London. On Saturday 7th February 2004 we arrived at Great Ormond Street Children’s Hospital where Samuel was admitted onto the Paedriatric Neurosurgical Ward.
Samuel’s brother Nicholas (6 years old) also stayed in London and from the outset was always involved in every aspect of Samuels Care.
As parents we were completely shell-shocked at this stage and had a traumatic time for those first 10 days. It was through no persons fault a very chaotic period and felt like the ‘left’ was not talking to the ‘right’, albeit that when the dust settled we were confident that they were. Samuel's tumour was identified as a Low Grade Optic Glioma. This tumour was crushing and atrophying the optic nerves reducing his vision. Worse still was that due to the position of his tumour it was not appropriate to operate. We did get moved significantly around the hospital and Samuel was on 5 wards in the first 6 days. He started emergency chemotherapy somewhat bizarrely as an inpatient on a Plastic Surgery ward. The chemotherapy was started in an effort to prevent or reduce further loss of vision.
For the remaining time at Great Ormond Street the emphasis was put on assessing the level of his vision. It was assessed that he had lost most of his vision in his right eye on presentation and was compensating very well with partial vision in his left eye.
After 10 days Samuel was discharged from Great Ormond Street with a referral and future care to be at Southampton General Hospital, supported by Poole General Hospital.
Samuel’s humour and stoic behaviour was phenomenal from the day he was diagnosed to the day he sadly died and as such its good to remember some of the humerous moments to reflect on how resilient our children are that suffer these illnesses.
Throughout this story readers will become more and more aware of Samuel's resilience and humour. But even in the midst of our shock and despair at the findings of the MRI, and medical staff's efforts to explain the scans to his brother Nicholas, everyone was touched by the manner in which Samuel's character shone through. He chose that moment, in fine voice, to loudly sing ‘I wish it could be Christmas Every Day’, by WIZZARD
Other anecdotes which endure from that otherwise intensely traumatic period include:
• On the first morning at Great Ormond Street the Fire Brigade had to attend the paediatric neurosurgical ward after Samuel's mother burnt the toast in the ward kitchen. Samuel thought this was both exciting and highly amusing.
• Samuel and Nicholas entertaining the ward by collaborating to create a humourous puppet show.
• Less humourous was the loss of Samuel’s little bear ‘Mascarpone’ that sadly disappeared with the Laundry from his bed never to be seen again.
• A memorable day when we were allowed out of Great Ormond Street for a few hours and visited the London Eye / Rainforest Cafe / Aquarium. We travelled round with Samuel in a child buggy but he was enthusiastic and enjoyed his day, and to us it was such a special family day.
