This blog has been set up to keep all of Zach’s friends and family up to date with his treatment. We have tried to give as much info as possible whilst trying not to overload you with the medical jargon and give Zach some dignity. Some of it may not be nice and some of you may find what you are reading upsetting, but remember that all of the Doctors and staff at the Queens Medical Centre are world leading experts in their fields and are always looking to cure Zach.

It all started on the 9^th Sept 2013 when we took Zach to his GP with a bobbling left eye. It would bobble or twitch very slightly up and down. It wouldn’t do it all the time. Mostly when he was tired or grumpy, and if you know Zach well, he isn’t grumpy very often. There was no evidence of loss of vision and he was developing normally. The GP very quickly realised that there was something wrong and referred Zach straight to the children’s ward at Grantham Hospital. He was then sent to the Royle Eye Clinic at the Pilgrim Hospital in Boston, Lincolnshire, but they could not conclusively diagnose what they could see in Zach’s eye. A week later after much chasing around, we were seen at the Retinoblastoma Clinic, the Royal London Hospital, where Zach was examined under general anaesthetic. They diagnosed Zach that day as having unilateral Retinoblastoma (Rb) of the left eye. We were given a prognosis that Zach had a 50/50 chance of losing the eye.  If that was the case they would perform an Enucleation, where the eye is replaced with a prosthesis which are matched very accurately and do look convincing, but we were assured that they were aiming to save the eye with Chemotherapy (Chemo). This type of cancer doesn’t normally kill children and has a 98% cure rate. This type of Rb, it being unilateral, only spreads in very rare cases and the oncologist assured us that she wouldn’t be looking to conduct any more tests to see if it had spread as Hayley and I didn’t have any history of Rb and although Hayley’s grandfather did have a brain tumour they weren’t concerned that the type of Rb was genetic rather they thought that it is sporadic i.e. a freak one off event. This did ease the pain slightly, but when you have had a long tiresome day with a child who has been starved and poked and prodded, in a ward with many sick children, some of which bear the scars of previous battles won against cancer, and the fact that up to this point we had no inkling that Zach had cancer, the enormity of the journey ahead weighed heavy.

After much more chasing around again, we eventually got to the Queens Medical Centre (QMC), Nottingham where would have Prof Grundy looking after us. He is Professor of Paediatric Neuro Oncology and Cancer biology. He would be co-ordinating Zach’s chemo. On our initial consultation with the Prof was slightly concerned that London hadn’t carried out any more tests to see if the cancer had spread.  He mentioned that only in very rare cases does a unilateral Rb spread and that London had mentioned that since the tumour wasn’t near the optic nerve that the chances if it spreading were even slimmer. Never the less he wanted to be completely sure that he had covered all eventualities before going ahead with the planned chemo. A lumber puncture (LP) was carried out along with the fitment of a Hickman line or wiggly as it is more affectionately known. The wiggly would allow staff to give chemo and take blood without having to stick needles into poor Zach. We were all confident that nothing more would be wrong and pretty much forgot about the LP results and came back into hospital on Monday 30^th September ready to start the fight back and get the chemo started. How wrong could we have been?

 When the Prof came to see us that morning I was feeding Zach, he sat down and said the fateful words, “I’m afraid they have picked up some suspicious cells in his CSF (cerebral spinal fluid).” It sort of took a minute for the words to register. Once more that sinking feeling comes and the uncertainty which had subsided over the preceding days hit you like a sledgehammer. This now meant that Zach would have to go through more tests, but this time he would be having another LP with a bone marrow sample being taken and a MRI to try and find the source of the anxiety. Again you hope and pray and hope some more that there will be nothing found, and that it may just be the Rb leaking cells into the CSF but on that Friday ours fears were confirmed. Zach had a brain tumour. It was sighted in a part of the brain known as the third eye and is linked to sight. It is in the middle of the brain, which would mean that a complete removal of the tumour would not be possible and oncologist don’t like to partially remove them as it makes gauging how the tumour is reacting to the treatment. When we asked if he had ever seen this before, he said that he had only ever seen this combination in one other child. When we asked about a prognosis he suggested that we concentrate on curing Zach and that putting a figure on it might lead to more stress and anxiety, but that they were looking to not just treat Zach but cure him and that he and his team would do their absolute best to achieve this. Zach would now have to have another op but this time he would have to have an Omaya reservoir fitted. This would allow doctors to put chemotherapy drugs straight to the tumour. It would also allow them to drain some CSF out as it looked like the ventricle where the tumour was sighted, was blocking the flow of fluid.  A biopsy of the tumour would also be taken to ascertain what type of tumour it is and that way tailor the chemo accordingly and a bone core sample would be taken to see if there was bone marrow involvement. Since then Zach has recovered from his op with no ill effect other than a few stitches and a lump where the Omaya reservoir is.