Caroline, in our Patient Services team, spoke to Sharon about her daughter Naomi’s experience at Over The Wall, a camp for children with serious health issues part-funded by Anthony Nolan.
Can you tell me a little bit about Naomi?
Naomi was diagnosed with T-cell acute lymphoblastic leukaemia (ALL) in October 2014 and had a bone marrow transplant in March 2015. Very fortunately, because we are quite ethnically mixed, her brother was a perfect match for her. He was her donor.
Naomi’s 14 now and doing really well. She’s coming up to almost four years in remission. Although she will always have some long-term health issues, she has also been affected psychologically by her illness. She was diagnosed when she was 10 and missed a lot of school. She said to me ‘I don’t feel normal’ whatever normal is. It’s understandable, which is why things like Over The Wall are really beneficial because she gets to go away and meet kids who understand.
I don’t want to pigeon hole her as a ‘cancer kid.’ We don’t want her to feel as if she’s in that box. Over the Wall is a way for her to meet and actually be with kids that know and get it.
How did you hear about Over The Wall?
Through Google. There were things specifically for teenagers living with cancer and a lot of things that were for really young kids. I was just googling to see if there was anything that might be appropriate for her because I felt she needed something more residential. She’s very artistic and crafty and this just seemed to hit the spot.
Why did you want Naomi to take part?
From a parent’s perspective, it’s really easy to wrap children like Naomi up in cotton wool. My husband and I really fought against that instinct – we wanted to try and get her back to having as normal a life as possible.
We said to her, ‘It’s ok to go out and be independent and do your own thing.’ For myself and my husband it’s also helped us to know that she can go away on her own, and that she’s confident and happy.
It has definitely encouraged Naomi to spread her wings a little bit more.
What were your expectations of camp, and how did Naomi feel?
I just hoped she’d have a really nice time. Over The Wall were really good at keeping in touch with us via phone and email. There is a health form to fill in prior to the trip and it is very reassuring that they have a lovely medical team at the camp. We knew that if there were any issues they would be in touch.
The main expectation of hers was just to have a lot of fun, which she did! She was very excited to go.
What kind of activities did Naomi take part in?
She did a lot of crafty stuff, she’s very artistic so enjoyed that the most. She plays the piano so she played a piece in the talent show. She just really enjoyed hanging out with kids her own age that understood. They start to remember each other year on year if they are lucky enough to go more than once. She’s been in touch with lots of friends afterwards on Instagram or Snapchat as they live further away.
What has she spoken about the most following camp?
Making friends. I know she would love to go back. That is just indicative of how much she really enjoyed it.
How did she feel after camp?
She was a bit wistful when it came to an end. She made lots of friends and quickly asked if she could go back. It’s just so positive to see.
Did you notice any change in her confidence or self-esteem after camp?
Certainly this year when she got back, she was just a bit more chatty and feeling more confident. When she attends similar things now, she’s more grown-up in herself. It’s really hard to describe what things like Over The Wall do for her. They just make her feel special and understood in a good way.
What would you say to another family who are thinking about taking part?
Absolutely do it! They’re fantastic and reassuring. The kids have an amazing time. Do follow the rules and don’t take your mobile phone! If you go, you’ve got to go all in! The people that volunteer are just happy and bouncy and they glow with friendliness, and that’s really good for the kids. They make them feel special, and you can’t ask for more than that.