Family stories

Read stories from families who have travelled abroad for proton beam therapy.

Lorraine, Frank, Lewis and Jake
Emma, Paul and Milly
Sarah, Nick, Emily and Alice

Lorraine, Frank, Lewis and Jake

Lorraine is married to Frank and they have two sons, Lewis, 15 and Jake, 13. Jake had proton beam therapy in Florida in 2011 following an operation to remove a brain tumour.

Lorraine says, "We left for Florida in April 2011. Jake, Frank and myself all went out leaving Lewis with his grandparents, then Frank flew back after three weeks.

"Jake had loads of scans and tests then the doctors took two weeks to design a treatment plan. At that point I just wanted to fly home. But there was no other option for us. Our only other alternative was to leave and hope for the best. Luckily, Jake didn’t need to have an anaesthetic during the treatments. But he had to have a mask made for him that made him look like Spiderman and he was pinned to table with that.

"A week into treatment Jake became poorly. He felt sick, tired and he lost his appetite. He was put on food supplements but I could see him wasting away.

"Our CLIC Sargent Social Worker, Kathy, communicated by email a lot. She would drop me a line and ask how it was going. It was lovely because you had someone you could communicate with who understood.

"We had an apartment but towards the end we moved into the Ronald McDonald House because I couldn’t cope any more. I missed everyone so much and was crying all the time. It was the best thing – just what we needed. It was great when Jake finished treatment because his dad and brother were there and we all came home together."

Emma and Paul and their daughter Milly

Emma is married to Paul. In 2011 their daughter Milly, 6, had proton beam therapy in Florida for a brain tumour.

“The eight weeks we were out in Florida went very quickly. Because we had raised funds ourselves it meant Paul and I could both take unpaid leave from work. It was a huge bonus.

“We didn’t stay very long in the Ronald McDonald House. It has fantastic facilities and it’s a wonderful place. But we wanted our own place where we could come back, relax, eat and drink and have our own space and privacy.

“There was a group of other UK parents out there at the same time as us. All the NHS families joined in and shared things. We had days out to see the local baseball team and things like that.

“Milly’s treatment course lasted six weeks and she had to have a daily anaesthetic. Staff at the centre were fantastic. The proton machines are huge, but they have a kind a wall in front of them that they only pull back when the child’s asleep. Milly was a bit grotty and miserable here and there, but basically she went through it in her normal style.

“One distressing thing was the consultation where Dr Danny, Milly’s consultant at the proton centre, told us what side effects could result from the treatment. They bring up an image of the tumour and say, “The beam could damage this, damage that.” That’s when you think, ‘Why are we doing this? Why don’t we go home?’ Most parents said they found the same thing.

“When we came home in July 2011 it took us months to get used to it. Everything seemed very small and going back to work was hard. It’s only really this year that we’ve got back into swing of things.”

Sarah, Nick, Emily and Alice

Alice, 13, had proton therapy in Oklahoma in 2011 for a brain tumour. She was out in the USA for two months with mum Sarah and dad Nick while her sister Emily, 16, stayed in the UK to complete her GCSEs.

“First of all I had to lie down on a bed that was a bit like a beanbag. They made sure I was comfortable then sucked all the air out of it so that it moulded to my shape. It was really clever because it made me more comfortable when I went every morning. I had a mask fitted at the same time. It was moulded to the shape of my face.

“They were so sweet there, so nice to me. They normally tried to keep to the same times for my treatments. I had to lie down on the beanbag bed then I would be clipped into the mask. It was great because they had an iPod dock so I could listen to music, which made it much more relaxing. I didn’t feel a thing. All I used to hear was my music and some clicking every now and then. Then after about five minutes they used to change my positioning so that the proton beam could go where it needed to go. The younger patients had a general anaesthetic but I didn’t have to have one.

“It was tough being away from the rest of family and not seeing them every day. I missed my sister Emily so much. We Skyped each other and did FaceTime on my iPod. It’s like you’re in the same room. I used to get up early and Skype my friends during lunchtime at school too. They set up a webcam in our tutor room. The school emailed me work and told me I could do as much as I wanted. I’m quite conscientious so I tried to keep up with it.”



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