History - 2005

At almost twelve months old, the boy was much like other boys. He was crawling. He was starting to walk around holding on to things. But he did wake up crying in the night. Every night. At almost the same time. And couldn't be soothed to sleep without paracetamol or ibuprofen.

At thirteen months, he was taking a few exploratory steps. His parents were thrilled. But he had a bit of a tilt of his head. The doctor said it was an ear infection and not to worry.

At fourteen months, he had stopped taking exploratory steps. He still had the head tilt. Further trips to the doctors had confirmed the ear infection. It will pass they said.

At fourteen and a half months he had the occasional unexplained projectile vomit to go with the head tilt. Then came the slight droop in the corner of his mouth. Worried and tired from the constant waking in the night, I asked the wife to take him to the doctors again. This can't be right at his age I said. I thought maybe he'd had a small bleed in the brain. I thought I was being over-dramatic. I was wrong.

That Monday the wife went to the doctors again. She wouldn't return home for two months. The doctor finally referred the boy to local hospital. They kept him in overnight for observation. The wife stayed with the boy. I visited the next lunchtime from work to bring tea bags for the wife. I would not return to work for seven weeks.

The boy had just had a MRI (brain scan). The doctors came with the result. They looked upset. Taking us somewhere quiet they said that there was something on the scan. They would not say what but were referring us to a specialist hospital. We transferred that day.

The specialist hospital said it was a brain tumour. A large one. And they would operate the next day. We were left in shock and fear.

The operation took all day. They removed several large fluid-filled cysts from the brain and most of a tumour from near the brain stem. Tests on the tumour showed it was a Grade 3 Ependymoma.

The boy was very ill post-operatively. He had post-fossa syndrome. He was incosolable. Unbeknown to us, he had lost his swallow. Vomit and saliva got into his lungs. Within a few days he had pneumonia. Badly.

He was taken to intensive care. He was put on a ventilator to help his breathing as his lungs were in such bad shape. He was sedated on morphine. We stayed at his bedside for nearly a week. Just hoping he would pull through.

After a week he was weak but off the ventilator. He was taken back to the ward. After a couple of weeks they decided he was well enough to start chemo to try to get him to three years old, when he could have radiotherapy. But without all the tumour removed his prospects were not good. And as chemo would make him vomit, he would need a trachy to protect his airway and a G tube (for food) inserted in his tummy. We did not understand what having a trachy would mean. He can't be left on his own; ever.

He had the trachy and G tube inserted in a single operation - after some heavy pressure from his parents to avoid two procedures. He started the chemo at sixteen months. He was still poorly. Couldn't sit up unaided. Crawling or walking were out of the question. The chemo made him very ill and some of it affected his trachea causing bleeding.

At seventeen months they decided he should be transferred back to the local hospital. A disaster. They were used to dealing with children on chemo but under-estimated what was involved for chemo and a trachy. His needs were so high that we had to do all cares and be with him at night to deal with suctioning and vomiting. We got very little sleep. Even sharing the nights gave us almost no sleep. And nursing support was variable at best. Things came to a head when he had a major bleed from his trachy which I couldn't manage and there was no nursing support (they were all with other patients). I truely thought he was going to die. We were so concerned that they agreed he be transferred back to the specialist hospital.

We stayed at the specialist hospital for a further month while the local hospital tried to sort itself out. Eventually, after pressure from the specialist hospital, they were ready. And back we went to the local hospital.

The boy's nineteenth and twentieth months were spent in a mixture of the local hospital and specialist hospital (specialist hospital for the chemo and local hospital for after care). He was not well. He had pneumonia several times, even with the trachy. I returned to work. They had been very good but I couldn't stay off indefinitely. And there were bills to pay.

At twenty months the boys had another MRI. Bad news. The tumour was growing despite the chemo. Surgery was not an option because of the location. After reviewing the options we decided that even though he was rather young we would have to go for radiotherapy. He was able to crawl by now, when not connected to an oxygen tube. We stopped the chemo.

At twenty two months he started radiotherapy. Thirty sessions done one a day, five days a week for six weeks. To add extra spice this involved a daily ambulance transfer between hospitals. Luckily, the boy thought this was a great game. He loves ambulances and ambulance crews. They used the same crew for the trips and he loved them.

He sailed through radiotherapy without any ill effects and at twenty three months was allowed home. Also, there was no other treatment offered as he'd had everything in their arsenal. The tumour was still there so we just had to wait and hope. I decided to take three months off work (unpaid) as we didn't know how long the boy had.