“He never wants to come home!”

No one can teach a family how to deal with childhood cancer. Ben was five when he was diagnosed with a brain tumour in 2009. His parents and Trust fundraisers, David and Erica, say the Trust gave Ben a way to talk about his illness.

Warning signs

Ben complained of feeling sick and rubbing his tummy. He started having seizures too. At A&E involving social services was even discussed with suggestions we may need parenting help for the behavioral problems he was displaying!

It was hard to cope when we knew there must be something wrong for our son to act that way.

Nobody would listen

After fighting for a consultant referral, Ben was diagnosed with severe epilepsy, but the medication didn’t touch the sides. The seizures continued, up to seven every day.

His behaviour also became more erratic. He would say and do inappropriate things, even to strangers. After each seizure he would fall asleep. It was a relief, a break from his behaviour.

But normal daily activities and planning were impossible.

eventually tests were doneat our local hospital

They found something the size of a golf ball. In many ways it was a relief; it showed we were right. Ben then saw Consultant Paediatric Oncologist, Dr Juliet Hale, at the Royal Victoria Infirmary, Newcastle.

She instantly recognised Ben’s behaviour as a symptom of the tumour. It was actually malignant, but with brain tumours it isn’t if they are benign or malignant, rather if they are accessible or not for surgery.

We finally had our answer

Now we had many more questions. Is it aggressive? Will it spread? What are the side effects? Will it come back? Will he live? The surgery to remove the tumour took five hours. The surgeon took a little bit more away than he wanted to.

Ben had titanium plates inserted. He was in intensive care for 24 hours and very poorly.

What next?

Because it was part of the brain controlling movement and speech we were worried about side effects, but thankfully Ben is ok. He had to be weaned of the epilepsy medication, which took 18 months, and he remains under the care of his oncologist until he is 18.

A clinical psychologist also assesses his development every two years. He doesn’t deal with stressful, pressure situations well, which have to be managed.

sometimes it’s easier talking to strangers

Ben didn’t really talk to us, but he would to family friends or teachers. It was frustrating at times but we were pleased he could talk to someone. This is where the Trust has been so good. He can talk to other kids like him. We don’t ask what they talk about and he doesn’t say. But just knowing he’s opening up, and seeing the enjoyment they have, helps us too.

The Trust gives Ben independence and his confidence has grown so much.

He never wants to come home!

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