TREATMENT

Samuel was diagnosed in February 2004 with an Optic Glioma, benign brain tumour and after his initial 10 days at Great Ormond Street where he commenced his emergency chemotherapy his care and management was transferred to Southampton General Hospital, supported by Poole General Hospital.

Samuel was so resilient with all his health issues. He coped with incredible bravery, maturity, and humour that humbled us all. This was all the more amazing for the fact he underwent 3 separate yearly courses of chemotherapy with the objective of preventing the tumour progressing, also 6 weeks radiotherapy and nineteen neurosurgical operations in 2008 alone. He had a total of thirty five major operations in his 5 years of ill-health. This is a lot for any person to endure, however through his outstanding courage we never saw him demoralised or be anything other than positive. He was inspirational and tremendously thoughtful to other patients and their parents whilst in hospital, trying to reassure and comfort them before, during and after any operations and procedures, reacting to any individuals on the ward that may have been upset.

Samuel therefore commenced his treatment at Southampton on 18th February 2004. His first major operation was on the 19th February to fit his Central Line.....

The choice of Central Line required for his chemotherapy was an interesting topic as prior to leaving Great Ormond Street we were advised of two types of Central Line, Hickman and Portacath, and were given the advantages and disadvantages of both. Having painstakingly considered and made our decision for Samuel to have the Portacath we found ourselves not being offered a choice and being told it would be a Hickman Line. This was discussed at length and the hospital then agreed to fit the Portacath.

In Samuels circumstances the Portacath was a good decision. One important reason was sustaining as much normality as possible for Samuel. The Portacath is all under the skin and therefore Samuel as we described it was ‘waterproof’ and able to carry on swimming which he enjoyed, and we felt it was less susceptible to infection.

Samuel was put on the first 12 month chemotherapy protocol of Vincristine & Carboplatin.

Samuel's vision deteriorated further and by the summer of 2004 he had irretriavably lost all vision and was blind. It will be noted however as you read Samuel’s story that the loss of sight was never an issue for Samuel who chose not to let it impede him, and many sighted & visually impaired people benefited from his ‘No Limits’ philosophy.

After the first year of chemotherapy the tumour had shrunk slightly and appeared inactive, and the central line was then removed in June 2005.

In 2006 the tumour had become active again and a 12 month chemotherapy protocol of weekly Vinblastine was started. This was one of the very few times that Samuel got upset as he really didn’t want to have a central line fitted again. Samuel however used his negotiation skills and it was agreed to attempt to give the Vinblastine weekly through a venflon inserted on the day of medication. Samuel was fortunate that he had veins like large ‘drainpipes‘ and this was a successful procedure for the 12 months changing hands each week. 

In 2007 it was necessary for him to have 4 neurosurgical operations in 3 weeks, immediately after which in true Samuel style he agreed to return to the hospital to be a case study at the Intercollegiate Neurosurgical Examinations for England, Scotland and Ireland designed to examine and qualify registrar neurosurgeons to become consultants. Samuel was so clued up on all his medical history along with the ability to remember the correct terminology that he had to be reminded not to over assist the candidates.

We have great respect and gratitude for all the medical support that Samuel received, and for the outstanding efforts of many individuals which include those on the Paediatric Oncology and Neurosurgical Teams at Southampton Hospital, and the Oncology Team and Community Nurses at Poole Hospital. We would pay specific thanks to Paediatric Neurosurgeon Owen Sparrow, Paediatric Oncologist Gary Nicolin and Paediatric Consultant Martin Hussey with whom Samuel formed close bonds of mutual respect and friendship.

The medical world learnt a lot from Samuel in his ability to cope so well through adversity and for the rare and unusual health issues he presented them with over the years.

His Portacath shifted and required replacing a couple of weeks after insertion. He required conversion of his VP shunt to VA shunt due to a very rare occurrence (CSF ascites). He several times went into SVT due to raised intracranial pressure. He developed pancreatitis on Dexamethasone. Use of intrathecal urokinase in repeated shunt and external ventricular drain blockage from high CSF protein due to the optic pathway glioma. As a result of these many rarities Sam was written up by the Neurosurgeons in a fascinating and extremely well written paper.

He never made it easy for the medics which appealed to Samuel’s dry sense of humour. Samuel’s infectious personality had the ability to break through any professional detachment from patients that the medics may have wished to maintain. He always asked their first names, told jokes, competed with them on mental maths tests, and often taught and tested them on Korean numbers. He asked profound medical questions for his age, often when you thought he had been asleep, and he was generally accurate in his self diagnosis.

Samuel’s health deteriorated significantly in 2008 with significant amounts of time and treatment by the tremendous team on Paediatric Neurosurgical led by Consultant Owen Sparrow. The rare and unusual aspects of Samuel’s health compounded the problems. Multiple neurosurgical operations were required, and he also underwent a course of radiotherapy to address his Optic Glioma, and rising CSF protein levels. Samuel sadly was losing his brave battle against all the issues. Following radiotherapy he started presenting with seizures and a subsequent MRI indicated that his tumour had disseminated. It transpired that an Optic Glioma (benign brain tumour) that is not generally life threatening had reached the point that it was going to take his life and as parents we had the horrendous realisation and decisions to make concerning the management of Samuel and his palliative care knowing that he potentially only had months to live.