The William Low Trust - Charity No 1184677

William's Story

Will was a delightful cherubic baby boy with golden curls, plump kissable cheeks and a calm and loving nature. Adored by his parents and big sister Harriet, he grew into a busy toddler and affectionate child taking easily to school and making lots of friends. Picked to be Joseph at his first school Nativity play, Helen and Craig brimmed over with pride. If only life could have continued like this.

 

Early in 2005, when Will was 5, he started to complain of head, neck and legs aches that made him sick and tired. After numerous visits to A&E over several weeks, an emergency MRI scan eventually revealed the devastating truth. William had Medulloblastoma, a large cancerous brain tumour.

 

Blue lighted through London (the city was in lock down after a bomb scare) the family arrived at Great Ormond Street Children’s Hospital in total shock and agony as they saw their gorgeous boy hanging on to life by a thread. They knew that day that their lives had changed forever. Survival of children with brain tumours is poor, especially when they are so young.

 

Will survived the operation, but the treatment was severe. Aged just six, he had to have radiotherapy every day for six weeks and chemotherapy for 57 weeks. He was often sick and had to be fed through a tube. The energetic, happy boy with blonde curls became a shadow.

 

It was a long year. Will suffered endless infections, each one potentially life-threatening. Blood tests, assessments, surgery, being wired up to machines, physiotherapy and occupational therapy became part of daily life. Through it all Will remained brave, quietly determined and unusually stoic for one so young, winning the love and admiration of all who came into contact with him. He was too ill to go to school, but his family kept him stimulated with fun things to do, friends visited when he was well enough to see them, and Craig, Helen and Harriet were always by his side encouraging him every step of the way.

 

Against the odds, Will recovered, learned to walk again, and was able to return to school. Despite some acquired hearing loss requiring extra help, he was a bright lad, tall for his age, loved football (and a true blue Chelsea fan). Life gradually went back to include normal routines and life experiences with hospital life close in the background. The family held their breathe following each MRI scan, praying for good news each time.

He began secondary school where his cheeky sense of humour made him a popular lad in a quirky kind of way. The family enjoyed some lovely holidays, adopted a wonderful rescue dog, Basil, and life was good.

 

Then came the crushing news that, at age 13, Will’s cancer was back. This time the tumours were scattered like icing sugar all over his cerebellum (back of the brain). It was extremely rare for the disease to return in this form, and after so long, and the GOSH consultants were doubtful that they could save him this time. Advice was sought from around the world and eventually an extremely tough treatment plan was decided upon. Will’s strength of character was a major factor in the decision to put him through further brain surgery, more chemo and radiotherapy and a stem cell transplant.

 

The stem cell transplant that saved his life had harsh consequences. The chemo burnt his skin inside and out. He needed six baths daily, creaming all over and clean pyjamas and bedding every time he was bathed, as the chemo coming out of his pores of his skin was so toxic. He was unable to eat for many weeks as the chemo had damaged the skin in his mouth and gut. It was heart-wrenching to see him suffering and there were many times that his life hung in the balance. But the result was amazing. William was tumour free again. The champagne was out!

 

The brain surgery knocked him hard this time and recovery was challenging, Will had to learn to walk again, but this time it was much more difficult as his balance was impaired and he felt constantly sick ( this stayed with him for the rest of his life). He could no longer write or draw with any control over his right hand. Typically, Will practiced every day so that he could use his left hand as dextrously as his right.

 

Gradually, Will got stronger and studied hard to catch up on the work he had missed, achieving really good grades in his GCSE’s – a remarkable achievement considering how much school time he had lost. He was particularly proud of his A* in Art – all done with his left hand. Voted Prom King by the students at the end of year school prom was a real highlight, he looked so very handsome that night.

 

William completed the four-week National Citizens Service course in July 2016 and made plans to go on to college. However the day after the course had finished, a routine MRI scan showed new tumours had appeared in his spine. William was now 16. The family knew this was grave news but never lost hope.

 

Running out of ideas, the medical team watched and waited to see how these unusual tumours developed, continuing to carry out extensive research for a plan to buy some extra time. Many health care professionals gave up their free time to investigate possible leads; William had made such an impression on them all. Helen, Craig and a medical friend exhaustively investigated every possible drug trial available in the desperate attempt to find something that might be appropriate. Nothing was suitable. At the tender age of 17, it was the end of the road for Will.

 

Will insisted on going to college although his health was slowly deteriorating. In March, scans showed his tumours were advancing and fluid was building up in his brain. He was constantly nauseous. In April, surgery to insert a shunt to help drain off the fluid didn't go to plan. Will had a big brain bleed and could no longer walk, his brain was in trauma. He had already withstood so much in his young life, his body just couldn’t take any more treatment. All hope was gone and there was nothing more to be done except make his remaining time as comfortable as possible. The family were forced to face the horrific fact that he was no longer to survive.

The family were heartbroken and in such pain. However, they were determined that Will’s last few months would be as enjoyable as they could possibly make them. A local friend converted the garage into a downstairs bathroom in record time so that Will could be moved home from hospital. Shooting Star Hospice and the Rainbow Trust organised lovely events; Will spent the evening with Simon Cowell at Britain’s Got Talent, had Frank Lampard over for afternoon tea and have some lovely trips out. He enjoyed seeing his friends and family, watching movies and especially having his dog Basil up on the bed for cuddles.

 

He loved being at home and surrounded by his wonderful family. The last weeks of life were so hard as he became dependent on Craig, Helen and Harriet for absolutely everything, yet he never complained and always had a smile for visitors – of which there were so many – no matter how bad he was feeling. He died in August 2017, surrounded and encompassed by love. His last word was ‘Harriet’.

Beautiful memories