PALLIATIVE CARE
The worst possible situation came in 2009. As courageous as Samuel had always been he was losing his fight against his optic glioma and the many complications it produced.
He had a very difficult time and was intubated on the Paediatric Intensive Care Unit following seizures and then subsequently had the diagnosis of leptomeningeal spread of his optic glioma. A low grade optic glioma which very rarely results in death was effectively out of control, with all options to control having been tried' and unfortunately failed' through no fault or lack of valiant efforts by medical staff.
Decisions were made in consultation with medical staff not to put Samuel through further operations that would be unnecessary and not result in a different outcome, but to provide Samuel with palliative care. Through choice it was decided by us as parents to try to manage the palliative care at home with local medical support. It was not known whether Samuel had one month or six months to live. The priority was now to manage any pain or discomfort and to give Samuel all the love and support that family and friends could provide.
At home the ground floor dining room was converted for Samuel’s care into a bedroom with two beds. An electric adjustable hospital bed was provided for Samuel’s use, and as parents we put in an additional bed so that one of us could be present at night-time.
Samuel was discharged home on the 15th March 2009.
It was very important for us to have Samuel at home, and we believe for him to have us his parents, Nick his brother, and ‘Keira’ the chocolate labrador close by. Despite Samuel now being very ill and intermittently drowsy, he still managed smiles, jokes and his excellent impression of the Churchill Insurance dog, “Ohhh Yes!!”
A phenomenally touching moment was when Gordon who was Samuel’s Tae Kwon Do Instructor gave him his own personal Gold Medal that he had won a couple of weeks earlier at the British Tae Kwon Do National Competition. He also presented Samuel with an honorary black belt that had been awarded to Samuel by Tae Kwon Do International & Tae Kwon Do Association of Great Britain. Samuel was incredibly excited and chuckled when he realised that as a ‘black belt’ he should be referred to as ‘Sir’.
We managed Samuel’s medical issues at home, with the many medicines and food via an NG tube. We were well supported by local Consultant Martin Hussey (PHT) and his team of Community Paediatric Nurses, and support from Consultant Gary Nicolin (SGH) & Pippa (Oncology Liaison Nurse). Whilst we were also linked into Community nurses at the local Surgery to assist with palliative care that was difficult for us as they had very limited knowledge or history of Samuel and whilst in the long term we would have appreciated their assistance the option was not really taken up. In such circumstances it was preferable to liaise with medical staff with whom Samuel and ourselves were familiar.
Samuel was visited daily by friends and extended family members. He was surrounded by his favourite cuddly toys, including a recent dolphin, a gift from Rachel who produced the Channel 5 documentary ‘Extraordinary Animals’ that Samuel had participated in with his echolocation skills.
Samuel was inspirational to everyone he met. He was an amazing boy who brought extraordinary happiness, fun and energy to our family. We were so very lucky to have had Samuel in our lives and will remember him always.
Samuel died peacefully at home on 7th April 2009 with his family.
