Daniel was 10 years old when he started feeling unwell in December 2003.  He had bouts of sickness and headaches, but nothing you could put your finger on.  We went back and forth to the doctor who suspected a stomach virus and took various blood samples, the results of which came back negative. 

 

In March 2004 Daniel was getting increasingly worse and was taken into Airedale hospital for further tests.  A paediatrician then took a look in his eyes and was concerned that there was some pressure and swelling and organised a scan.  It had never occurred to me before this point that there could be something wrong with his brain.

 

The scan results came back, and our nightmare as a family began, it was confirmed that Daniel had a brain tumour. 

 

We all went home together for one last night of “normality” before we were transferred to the care of neurosurgical ward, 48A of the Leeds General Infirmary.

 

As we walked onto the ward I saw a young boy who was really sick with his head bandaged, and a poster for Andrea’s Gift that was advertising the fact it was brain tumour awareness week. It was unreal as I read the information and realised that this was now so relevant to us.  It was like entering a different world – one where we were lost and unsure about the future.

 

We met Daniel’s neuro surgeon, a wonderful man called Mr Phil van Hille who told us he would operate the following day and it would then be two weeks before we would know the results.  Daniel went down for surgery and my husband David and I met a friend in Leeds and wandered the streets, hour after hour.  It was the longest day of our lives.

 

Eventually we went back to the hospital and a nurse rang my phone and said that Daniel was out of surgery and in Intensive Care. He was then moved back onto ward 48A and five days after Dan’s op he was discharged from hospital and everyone was pleased with his progress.

 

Two weeks passed and David and I went to Leeds for the results.  I consciously hadn’t considered the tumour might be malignant, though our subconscious must have feared the worst as we decided to travel to Leeds by train rather than driving.   Mr van Hille told us that the tumour was a malignant medulloblastoma, though he was quite positive saying that he had managed to remove the whole tumour.

 

David and I were in total shock at such devastating news.  Our emotions were overtaken by treatment options, regimes and further minor operations and obstacles for Daniel to overcome.

 

His treatment consisted of 31 days of radiotherapy and primary chemotherapy sessions and after around ten days Daniel’s hair began to fall out.  During this time he was incredibly sleepy and very sick, he was losing weight rapidly and was unable to eat so his medical team decided to insert a feeding tube.

 

After the radiotherapy sessions were completed, there was a break of a few weeks before the secondary chemotherapy started this time for 48 weeks in six week cycles.  

 

Daniel finished his treatments in June 2005; he was very weak as a result of 15 months of intensive treatments.  He is now monitored every three months with scans every six months.

 

Dan is now 12 and started high school in September 2005 found the adjustment quite difficult.  He went from a small school where everyone knew him to a very large high school – a situation that fazes most children, let alone those who have been ill. 

 

It is an incredibly tough time for all the family – Dan’s younger brother Liam (age 9) has coped extremely well with a great deal of upset, panic and turmoil.

 

One of the things that kept Dan’s spirits up is his love of cars and the chance to meet one of his heroes, driving and stunt car ace Russ Swift.  Russ has arranged for us to go to lots of car shows and has really taken Dan under his wing.  He even arranged a meeting with the Top Gear team at the MPH show in Birmingham.

 

We have done a lot of fundraising for Andrea’s Gift, and it all began with a sick bucket!  Dan had so many visitors when he was poorly – it was as though the whole of our village of Silsden were rocked when they heard the news.  When visitors came we asked them to throw £1 (or more!) into Dan’s sick bucket in payment for a cup of tea.  We then threw ourselves into raising more money to support the research centre project and with the help of family and friends who have supported our events and done sponsored runs and held parties of their own in Daniel’s name. 

 

Visit Daniels' fundraising page to see how much we have raised!

 

Meeting wonderful people along the way has been a very positive part of this journey – we even met a family with a child who has a brain tumour in Vietnam!  The family were originally from Riddlesden, Keighley and were working abroad.  They logged onto the Keighley News website and read a story on Dan, and got in touch.  We have met up twice now when the family have been back in the UK.

 

It is a long road and I am grateful for family holidays when we can all get away from hospital appointments and scans and behave in a normal way and get to know each other again.

 

Written by Tracey Wilkinson, Daniel’s Mum