Battling Burkitt's lymphoma

When four-year-old William was diagnosed with Burkitt’s lymphoma, his mum Sally couldn’t take in what the doctors were saying. Here she shares her story, from William’s diagnosis to reaching remission.

"In July 2010, my four-year-old son William was lethargic, not eating properly and constipated. He was getting worse every day and his stomach was huge.

"My doctor referred us to Basildon Hospital. They did an ultrasound but couldn’t see enough so they did a CT scan too.

"They found a mass in his abdomen and said we needed to go straight to Great Ormond Street Hospital (GOSH) for more tests. The next thing I remember, William and I were in an ambulance with blue lights.

"It was only when we arrived on the ward and I saw all the children with no hair, connected to drips that I realised the implications of where we were.

Diagnosis

"My husband arrived and the doctors told us that they were 99 per cent sure William had Burkitt’s lymphoma, a very rare cancer.

"When you’ve just been told your child’s got cancer, you can’t take in what they are saying. I remember coming out and saying 'we’ve just got to be positive for William, we can’t be upset because he doesn’t understand what is going on'. He was just too frightened and in a lot of pain.

"I wanted to pick William up and run away with him. I remember thinking 'I’ve got to tell my Mum and my other kids. How am I going to do this?' I texted my Mum, which is awful, but I literally couldn’t speak. I felt constantly sick. I couldn’t even drink water, it was an awful feeling.

"Cancer changes your life within a minute. I was angry at first, which was actually quite helpful because the adrenalin kept me going.  I don’t think I slept that first week.

Starting treatment

Photo of William in hospital
"William had tumours in his stomach, round his kidneys and round his liver. The doctors said there was a 96 per cent chance he’d reach remission but it would be a long battle. Burkitt’s lymphoma needs a very aggressive form of chemotherapy.

"William also needed a biopsy, and during the operation he needed chest drains. William stayed in intensive care. The doctors rang as soon as he woke up and said 'you need to come immediately'.

A long wait

“There were about 20 people in the room. I don’t really remember much. His kidneys had been affected so they put him on dialysis, and his heart was getting faster because of a build-up of potassium. I don’t know how long we waited before the consultant said William was picking up.

"Having to wait to hear whether the tumour had gone was horrendous. We couldn’t do anything, we just wanted to know.

"The registrar was crying when she called me and said it had gone. The consultant also rang to tell us everything was clear. I remember just screaming, ‘it’s gone!’

Family life

"We were petrified when we first got home. That first night, we stayed awake all night watching him. Then we realised we had to get back to normality for our other two children.

"It was amazing to be home, have the three kids together and cook dinner in my own kitchen. William was still poorly but nothing got him down. I’ve got video footage of him a week after finishing treatment. He hasn’t got any hair and is painfully thin, but he’s running round the kitchen and dancing like you wouldn’t believe!

Starting school

"Last year, William started school full-time and now he’s full of beans, back playing football and swimming. He still has check-ups at the hospital every 12 weeks, and gets worried sometimes that the cancer will come back but, otherwise, he is brilliant.

"The experience brought us closer as a family. I think it’s made me a better person, although I do find it difficult when people moan about small things. I said once that everybody should walk through the intensive care unit at GOSH to give their lives perspective.

"Everyone at GOSH was so fantastic, not just to William but to us all. We felt the best way to show our gratitude was to try and raise some funds, so we organised a sponsored event called William’s Walk. We raised nearly £25,000.

"You can’t ever thank people enough for saving your child’s life but we hope it will help GOSH continue their work with other children like William."