Stories

Lewis' Story

Lewis' Story

Lewis was first diagnosed with a brain tumour in October 2016, after he experienced a variety of symptoms, including fits, before being rushed to Sheffield Children's Hospital. He sadly passed away in December 2017, aged just 14.

Lewis' nana Carol, herself a retired RGN and Health Visitor, said: “Lewis' story started in 2016 in the summer. Lewis was feeling down, not as much energy during his holiday in Whitby in July. He went home early with his grandad and he had started to lose his appetite.

“In July and the beginning of August, Lewis began feeling nauseous and dizzy and started vomiting in the morning and during the day. He was taken to see a GP who gave him a thorough examination at the time but was diagnosed with a gastric bug which needed to be kept monitored.

“This continued and then we noticed that Lewis's clothes were too big for him, he was losing weight rapidly. We didn't have a recent baseline measurement for Lewis's growth history so the next GP we took him too said he had nothing to compare his weight with. It was quite obvious he had lost a lot of weight as his clothes were hanging off him.

“We then saw an out of ours GP at Bassetlaw hospital who was worried with the symptoms and referred him onto the children's ward where he was an inpatient for five days and started on IV fluids to rehydrate him. But his vomiting continued with dizziness and more weight loss and was given ondansetron an anti-nausea drug usually used for cancer treatment patients. He was discharged and his diagnosis was firstly gastritis, then a behavioural problem linked to his autism."

Lewis' symptoms began to get worse however and on 12 October 2016, he found walking and balance difficult and his morning vomiting was increasing. A head scan was ordered and whilst in the hospital waiting for this he started with seizures - a brain tumour was diagnosed.

Lewis was rushed to Sheffield Children's Hospital onto S2 Neuro ward where he was stabilised. He had a craniotomy the next day for removal of the tumour. This was the start of a lengthy time in the hospital for Lewis and his family, where this brave young boy endured 30 days of radiotherapy and was started on chemotherapy.

Throughout 2017, Lewis' resilience continued as he battled with his treatment.

Carol says: “Over the year we watched our beautiful boy struggling and suffering with pain, nausea and vomiting.

“In October 2017, we received the terrible news that the cancer had spread into his spine. There is no cure for this hideous disease just treatment to hold it back, to give a little time.

“We managed to get Lewis to Harry Potter World on the 8th November and our friends and neighbours arranged a wonderful firework party for him.

“After that he deteriorated quickly and spent his last weeks in Bluebell Wood Hospice. He died at 6.27 am on December 17 2017".

As a family we want him to be remembered and help in some way to ensure awareness and secure funding for this disease. Our experience has highlighted many problems that families face along this terrible journey that need addressing to families so that they do not have to fight for everything that is needed for their child. Lewis was so incredibly brave and was fighting to live. It has been a nightmare for us all and still is.

- Carol