Ethan’s Story – CLIC Sargent

The members and families of Berkshire Freemasons can be very proud of their involvement in raising funds for CLIC Sargent by manning bucket collections, marshalling at the Reading Half Marathon and providing other support.   It’s great that our efforts can enable CLIC Sargent to provide such wonderful support for Ethan and his family.

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Ethan, from Southampton, was 11 when he was diagnosed with osteosarcoma, a type of bone cancer, in his left leg. He had to undergo chemotherapy and “limb sparing” surgery to remove part of his femur, which was replaced with a prosthesis. He finished his chemotherapy treatment in October last year but still has to have physiotherapy twice a week to build up his strength and uses a wheelchair for long journeys.

He has to have hospital check-ups every two months, including chest X-rays as there is a risk the osteosarcoma could attack his lungs.

He also has three-monthly checks on his leg and has to undergo leg lengthening whenever he has a growth spurt. Ethan and his family have been supported by a CLIC Sargent social worker who provided much-needed emotional advice, information on treatment and help with their application for Disability Living Allowance.

Sue, Ethan’s mum, said: “Cancer at any age seems so dramatic. The word itself makes people sit up with fear. When you tell family, friends, work colleagues they all have the same look – some say it, others don’t, but most people just think of the worst. But you have to stay positive when you’re supporting someone through this illness and it’s hard at times, very hard.

“Cancer is a serious illness and the treatments for it are pretty nasty themselves, with very powerful drugs, with all sorts of side effects. Thankfully with charities like CLIC Sargent around, working with hospital care workers, staff and doctors, you have a great support network.”

The family first knew something was wrong with Ethan when he started saying his leg felt stiff and developed a limp. After an X-ray and an MRI scan they were told the devastating news he had cancer.

Sue said: “It was a complete and utter shock for the whole family. You never think it’s going to happen to you, as cancer isn’t common in children, but you have to try to maintain a normal life.

“Tricia, our CLIC Sargent Social Worker, has been really brilliant. We met her within the first week of Ethan’s diagnosis and although it was all so overpowering in the first stages and everything was happening so quickly, it was great to have someone there to chat to if you had any questions. She’s been there at hospital or in the home whenever any member of the family has needed a chat about anything, and I don’t think I could have asked for a nicer person to be around.

“She introduced herself in the family room at hospital and talked about CLIC Sargent and how the charity could help. She discussed the emotional support she could provide and how she could be there for all of us, she talked through CLIC Sargent information booklets and she discussed applying for Disability Living Allowance.

“We were so surprised by the costs that you meet with when your child’s going through treatment. As you’re visiting hospital a lot, you’re spending lots of money on hospital parking, petrol, and costs for different food, as chemotherapy makes your child’s taste buds change.”

Ethan has now finished his chemotherapy treatment but still has regular checks in hospital as well as physiotherapy treatment.

He said: “My treatment was really hard, there were times when I was really sick from treatment and then the next day I’d feel OK. My moods changed from day to day too, and my appetite changed, so I could never tell what I’d feel like.

“I don’t think people realise what it’s like to have chemotherapy, they think that you have to take little tablets, but it’s more than that. I’ve kept in touch with close friends and had a couple of friends visit me in the hospital. They were able to realise what it was like for me then.”