Daniel's story

Daniel   Twitter image 506 x 253Our third child, Daniel, was born on 28 January 2007 and developed well in the early months, showing no unusual signs. However, in August we noticed that he became less interested in food and was occasionally sick.  We also noticed that there was what appeared to be a "laziness" to one side of his face.

Daniel was admitted to our local hospital in September, following several visits to the Doctor during the previous two weeks. Following numerous inconclusive tests he had an MRI Scan which revealed the devastating news that our son had a brain tumour located around his brain stem. He was immediately transferred to King's College Hospital in London. We then realised that our lives were going to be very different.

We were able to stay at the local Salvation Army Training Centre across the road from King's to allow us to stay close by as we awaited Daniel’s surgery. Almost all the tumour was removed, however, the prognosis was dependent on finding out the exact nature of the tumour. In the weeks following the operation, despite Daniel's positive recovery, we remained concerned. Initially, we were told it was malignant (ie cancerous) but a sample of the tumour was sent to Great Ormond Street Hospital for a final diagnosis. We travelled there one day to be told it was a very rare, aggressive and malignant Atypical Territorial Rhabtoid Tumour (ATRT). Whilst they would at our request, carry out chemotherapy on Daniel, it would result in little chance of success and could even kill him. We decided to take Daniel home at the earliest opportunity. We wanted to enjoy Daniel and to spend the rest of his life in the loving environment of the family home.

Over the following few weeks, Daniel continued his great recovery - movement was regained in his legs and arms (previously affected by the tumour) and he became able to sit up well on his own. We continue to get huge support from family, friends and our church. Despite being reliant on some additional oxygen and being fed by tube, Daniel was happy and continued to play with his toys and offer all the nurses his cheeky smile! It was a joy to have him home and be back together as a family once more. Thomas (7) and Hannah (6), his older brother and sister, loved having their baby brother back home and it was a joy for us to see. Daniel continued to progress, he attempted to crawl, pulled himself up to a standing position when in the bath and developed a vicious throw of, well, anything he had in his hand!! We continued to have the full medical support that we needed from the NHS, together with Ben, a play therapist from the Rainbow Trust. The local hospice, Demelza House, was also in touch.
As time progressed, whilst Daniel physically was showing good signs, he was starting to become sick again. Our fears were realised when he was suddenly very sick and stopped breathing. Through the prompt actions of Susannah and her friends he was speedily resuscitated and flown by Kent Air Ambulance to a local hospital before returning to King’s. It was 18 December, the day before Thomas' 8th birthday.

Despite an initial good recovery and optimism that he could come home in due course, after Christmas Daniel deteriorated and they were unable to remove him from the dependency of the ventilator. We released him from his pain on New Year's Eve at 5pm.