Haydn by his Mom Sharon

Haydn’s Story

Haydn was a typical 12 year old boy settling nicely into high school. There were concerns at school over his concentration so he was referred to a specialist who diagnosed ADHD. To us he was Haydn – our first child. We didn’t know any different. He enjoyed scouts and its hands on activities camping etc. and was enjoying a little more freedom at home going down town Saturdays with his mates.

It was in March 08 that we think he started getting headaches and occasionally being sick. But when he started getting sent home from school regularly with sickness (usually mornings) and headaches that were getting worse we decided to take him to our GP. We saw two different GP’s on three separate occasions and also the nurse practitioner twice during April and May who said it was a virus or gastroenteritis. I decided to take Haydn to the opticians. Maybe it was connected to his eyes or sinuses? I had to do something.

It was Thursday 15^th May 08 – I’d been to work and met the boys on their way home from school for their optician’s appointment. I went in with Conor (9) as it was his first eye test and Haydn went into the room next door to have tests as he’d had them done before. It was then that the optician said Haydn’s discs behind his eyes were swollen and we should take him straight over to Burton hospital as there was a specialist still there who would take a look for us. I dropped Conor off with friends and collected Darren (partner) and we headed off to Burton hospital. It was about 6pm by then.

The specialist took a couple of hours examining Haydn’s eyes, asking if he’d been given drops as his pupils were dilated but he hadn’t. They decided to admit Haydn and CT scan him first thing next morning. I stayed with him -  we had nothing with us and were still wearing our uniforms from work and school!

Morning came and Darren returned for Haydn’s CT scan. After it was done Haydn returned to the ward and we were taken to a small office. Everything would then change forever. We were told Haydn had a tumour in his brain – Medullablastoma. Our hearts broke. How were we  going to tell our beautiful boy? I couldn’t find the words and his Dad had to tell him. Haydn needed to be operated on urgently so Burton were trying to find a bed at Nottingham or Birmingham Children’s. There were none available that day at either so we had to stay at Burton another night. On Saturday morning we were told there was a bed available at Birmingham and we were taken by ambulance while Darren, Conor and our families followed on.

Haydn was admitted to ward 10 neurology and it wasn’t till about 8 that night that he was taken down for an MRI scan. It was nearly 10 when we got back up to the ward. It was dark as everyone had settled down for the night. We had a lovely nurse Dee. She gave us hot chocolate and a muffin – never were they enjoyed so much! Sunday came and we were told  they needed to drain the fluid built up in Haydn’s brain before they could remove the tumour. So they operated that day giving Haydn a 3^rd ventriculostomy. He was back on the ward that evening eating tea! It was planned to remove the tumour the following morning, Monday.

Haydn was taken to theatre about 9am and didn’t come back until about 5.30pm – the longest day of our lives. We didn’t know how he would come back. He was all hooked up to a machine, which we since found out was paid for by Poppy fields our friends charity. He had a cannula in his neck and needed oxygen. Haydn couldn’t open his eyes to start with. He lost his speech for a few weeks, couldn’t move at all and needed to be turned and have his obs done every 30mins for the first few days. He didn’t eat for 8 days before it was decided to tube feed him. It seemed a slow recovery, he had to relearn everything with the help of speech therapist and physios. His first word was strawberry – not mom or dad! The first foods he was able to eat again was fromage frais. I would ask him if he wanted strawberry or raspberry and he would just point at first. He had to use a book of pictures to communicate with us for his first few weeks.

Time was ticking on and plans had to be made for radiotherapy. He was to have it daily for 6 weeks at the QE Hospital. I wanted to wait to explain to Haydn that the tumour had been cancerous when he had his speech back so he could ask questions but time ran out. It was the hardest thing to tell our 12 year old son he had cancer and for him not be able to say or ask anything. He took it bravely and told us once his speech returned that he was just glad it had been removed. Haydn had to have a mask made which was no problem and 3 tattoos done for radiotherapy but these were harder as he had to lie still for 30 mins. He managed this on his 2^nd attempt! Radiotherapy started July 08 for 6 weeks – 3 weeks in he lost his long dark hair and was admitted back to hospital twice with dehydration because of the internal burns. He couldn’t drink or swallow anything. Haydn finished radiotherapy Friday 15^th August and had about a month off before chemo would start.

Chemo started September following a 6 weekly cycle-overnight for cystplatin, CCNU(lomustine) and vincristine ,then vincristine in clinic weeks 2 & 3 followed by 3 weeks off. Haydn would be at his lowest week 4 then slowly recover weeks 5 & 6. It soon became apparent he couldn’t get through chemo without being tube fed overnight as the chemo had totally taken away his appetite. He started on NG feeds but with him being sick so often the tube was out more than in and he wasn’t gaining any weight.  The decision was made for him to have a gastostromy tube fitted directly into his stomach which helped him to finally gain some weight and cope better with the rest of his chemo. Haydn completed 6 cycles and we were in for his 7^th overnighter when it was decided enough was enough. Dr Peet had concerns over Haydn’s strength and that his bloods were taking longer to recover needing weekly blood & platelet transfusions for the previous 3 weeks. So we were sent home thankful the chemo was over – that was June 09.

September 09 Haydn returned to school part-time having missed a year & a term. Now year 10 and getting ready for GCSE’S. He has gone from strength to strength leaving his wheelchair to walking with a frame then in the last few weeks he has been walking unaided! Haydn has had tests and needed to start growth hormone and we are confident he’d manage this himself , injecting daily.

We’re just so proud of Haydn & his brother Conor for getting through this -  brothers together x