Born on 4th May 2001 to his parents Sophie and Fraser, George was a healthy, happy baby, then, at 18 months old a little brother arrived, Harvey, and for a few weeks everything was perfect. We were looking forward to Christmas with our two little boys. It was during the run up to Christmas 2002 that we noticed George’s pupils were suddenly, noticeably unequal. We took him straight to our local hospital and the paediatricians reassured us that everything was fine and that it was normal to occasionally have differently sized pupils. We returned in the New Year for a follow-up assessment and, again, they assured us that George was fine and that nothing more need be done.

Over the following months George became increasingly irritable and we put this down to the ‘Terrible Twos’. He then started to be violently sick and sometimes drowsy. On Sunday 1st June, he developed a severe squint over a matter of hours. We took him straight into the hospital in Basingstoke, arriving at 1000, as we knew something serious was wrong. The deterioration in his condition, which followed, was both rapid and alarming. His ability to walk was markedly affected and he became increasingly drowsy. Following a CT scan at Basingstoke we were sent by ambulance to Southampton General Hospital where they have a fantastic Paediatric Neurosurgery department. We arrived at Southampton at 0400 the next morning, our world upside-down. We could not comprehend being transferred in an ambulance, as an emergency admission, to Southampton. George remained heavily sedated following the CT scan and was strapped to the ambulance bed. He looked so small; too small to be unwell. We believed that this was something we read about, a cause to support and, above all, something that only happened to other people.

George had surgery just over 24 hours later. The tumour was blocking the out-flow of Cerebro-Spinal Fluid from George’s head. Because the fluid could not escape normally, the pressure inside his skull had increased to about 5 times the normal pressure. Two pipes, known as ‘shunts’, were implanted in his head, one in each side. These feed out through his skull, run under the skin and join behind his right ear. A single tube then continues down his neck and ends in a secured drain within his tummy. His symptoms were being caused by the increased pressure in his head. Following the placement of the shunts his symptoms improved rapidly. Following an MRI scan we were sent home at the end of the week to wait for a plan of action. After what seemed like the longest weekend of our lives, we had a call to let us know that the Neurosurgeons and Neurologists thought the tumour was of a low grade type due to its appearance on the images from the scan. We were advised that the next step would be to biopsy the tumour itself.

We returned the following week and George had a Stereo-tactic biopsy. This is a computer-assisted technique where a computer guides the surgeon accurately to the exact location from which the tissue sample must be taken. We then had to wait three weeks for the specialists to come back to us with a plan of action. Despite assurances to the contrary, the biopsy was not definitive in identifying the type of the tumour. Worse still, there was evidence of some ‘more worrying features’. However, they agreed that the working diagnosis would be that of a ‘Pilocytic Astrocytoma’. The treatment plan proposed was to monitor George for the time being with regular MRI scans. In the event that the tumour grew too big, the plan was to surgically remove some of it to reduce its size. This procedure goes by the name ‘de-bulking’. Ideally, the tumour should be removed completely, but to ensure complete removal requires some of the healthy tissue, immediately around the tumour, to be removed also. This carries enormous risks of permanent damage to the brain, so the surgical option is not really viable. Chemotherapy would not be appropriate for this low-grade type and radiotherapy is out of the question until George is older, due to the potentially damaging nature of the radiation on the developing brain. We were happy with this plan and we were reassured that George was going to be fine. Over the following weeks however, the gravity of the situation started to sink in and we felt that a second opinion would be helpful.

In August George’s scans were reviewed at Great Ormond Street Hospital, London and the Surgeon involved concurred with the Southampton treatment plan. He told us that our only hope would be for radiotherapy to shrink the tumour when George is older, ideally 8 or 9 years old. However, he warned that it is impossible to predict how the tumour would respond to this treatment and that if it did not respond then George may not see his 10th birthday. This was inconceivable to us; we had been reassured that George would be OK.

We felt the time had come to start doing our own research and our GP recommended looking to America for treatment due to their more proactive approach. We did lots of reading and soon realised that the treatment of choice, as far as American Neurosurgeons are concerned, is to remove the tumour in its entirety. It was a difficult time for us, and even more difficult to know what to do. In the absence of a more positive way forward, we had no choice but to go with the advice we had been given in the UK. That was until September 2003 when my sister-in-law passed us a story she had read, on the internet, about another family’s ordeal, almost identical to our own. The coupe in the story had been dealing with their daughter who also had a Pilocytic Astrocytoma in a similar location to George’s. The little girl, Alicia, was diagnosed in 1992 at the age of 1. Alicia had surgery in the UK to reduce the size of the tumour, but as it grew it was deemed inoperable, by Neurosurgeons within the UK. Unable to assist, the English Neurosurgeons referred Alicia to Dr Patrick Kelly in the USA. At the time he was Professor of Neurosurgery at the Mayo Clinic.

We contacted the Alicia’s mother who told us all about their experience and recommended that we contact Professor Kelly, whom we found easily on the internet. He is now Professor of Neurosurgery at the New York University Medical Centre. We
e-mailed him and had a response within 12 hours inviting us to deliver copies of George’s scans with his wife who happened to be staying in their house in Bath that weekend!

Patrick Kelly has reviewed George’s scans and feels highly confident that he can remove the tumour completely using a technique he pioneered twenty years ago. He is well respected in the USA and patients travel from all over the world to be treated by him. The hospital fees are expensive but we feel that, as parents, we must do everything we can to safeguard the life of our little boy. If there is a chance of removing the tumour then we must aim for it. Patrick Kelly has successfully removed around 200 of this particular type of tumour in this location, and around 6000 tumours in total. Not only is the technology not available in the UK, but more importantly, he has far greater experience in dealing surgically with brain tumours. Amazingly, and quite unlike neurosurgeons in the UK, he publishes all of his results openly.

What of the future then? Well, brain tumours, however benign, can become malignant. They can also spread within the fluid that circulates around the brain and within the spine. This process, known as ‘seeding’, can happen at any time and without apparent cause. However, seeding can also be triggered by surgical intervention. So what options do we have as regards treatment for George? If we go with the UK option, we have a ‘watch, wait and see’ policy where action will only be taken in the event of George’s health deteriorating, and with all the risks of seeding. And if we go with the US option, we have a surgeon with the capability, the confidence and the experience to effect direct removal of the root cause of the problem with no greater a risk of seeding occurring, than if we had done nothing at all. It seems clear to us, but what do you think ?