Zachary’s story told by Dad Stuart and Mum Hayley.

“On the 18th September 2013 we received the devastating news that our ten month old son Zachary had a tumour in his left eye which is known as Retinoblastoma. We had never heard of this before and as you can imagine we were devastated by this news. As Zach was diagnosed at the Royal London Hospital, we were then referred to a hospital closer to home that would be able to give Zach the treatment he needed. A couple of days later we were contacted by Professor Richard Grundy at the Nottingham Queens Medical Centre who arranged for us to attend the hospital the following day, where Zach would be fitted with a Hickman line for administering his chemotherapy.

While Zach was in Theatre and under general anaesthetic Professor Grundy arranged for a lumbar puncture to be undertaken to make sure there were no other tumours. We then arranged a date to come into hospital and start chemotherapy, that day we were told that the Lumbar Puncture had detected Cancerous Cells in the Cerebral Spinal Fluid. It was agreed that the treatment would be put on hold until Zach had received an MRI scan. Two weeks after being told of Zach’s Retinoblastoma we received a second dose of devastation that Zach had a second tumour in the centre of his brain which had spread from the eye. We were devastated. Professor Grundy also informed us that he had only ever come across one other child with the same tumours as Zach.

To treat the tumour in Zach’s Brain, he had an Ommaya Reservoir implanted into his brain; I tend to describe it as a straw that points directly to the tumour. In the meantime there were many meetings with Oncology Professors from around the world to try and come up with a plan for treating Zach’s tumours. The chemotherapy plan which came from America consisted of 3 courses through his hickman line to treat both tumours and then a top up of chemo would be administered through the Ommaya into his brain. At some point Zach would have to have his stem cells harvested from his bone marrow before they were destroyed by the treatment and frozen ready to give back to him.

The chemotherapy commenced early October and Zach became very poorly which we expected. Professor Grundy’s words were Zach would have to become poorly so that he could become better! We were told that he would have the same amount of chemotherapy as a teenager would have.

After the second dose of treatment Zach had an MRI scan which showed that the tumours had reacted well with the chemotherapy. The Eye Tumour looked like it had completely broken down and was difficult to see on the scan and the brain tumour had reduced from 17mm to 7mm. We were so thankful and amazed how well it had gone and just couldn’t thank Professor Grundy enough. We then went home for some respite and a break, but while at home Zach became poorly quite quickly and we had to rush him back to hospital. He was given antibiotics which started to help but we then noticed his saturations were low and he needed a little bit of oxygen. This seem to worsen over a couple of days and then on the 16th December Zach went into Respiratory Failure while in hospital and was rushed to the Paediatric Intensive Care Unit (PICU). We were told that the next 24hrs were critical.

The journey
Zach remained in PICU for 6 weeks and in those 6 weeks we were told on 3 occasions that there was nothing they could do. The particular days that remain on my mind were the 27th and 28th December where Zach’s saturations were dropping through the night. We were told if he got any worse and required resuscitation, due to the amount of breathing support he was already getting they would not be able to resuscitate him. At that point they would take him off the ventilator and pass him to us to say goodbye. I don’t think we will ever forget that night. We were able to sleep next to Zach so that we were there for him. At 5am in the morning, we called our parents in to see Zach and all of a sudden Zach started to pull through and his saturations started to rise again. It was truly amazing.

In the last year, Zach has continued with his treatment receiving more chemotherapy and his stem cells back. The last MRI showed no changes to the tumours and Professor Grundy thinks they may have calcified but because of where the brain tumour is we can only tell from regular scans as to whether it changes any more.

In September last year Zach returned to Nursery for a few hours over a couple of days and in January of this year he returned full time. Due to everything that he has been through, Zach is a little behind with his development. He doesn’t walk or crawl yet but by returning to Nursery and with help from a physiotherapist he will be able to catch up with children his own age. Zach turned 2 on 28th October 2014 and with everything he has been through still smiles every day.”