Katherine shares how getting involved has helped her do something positive and allowed her to make a meaningful contribution to other families facing childhood cancer.
Could you tell us a little bit about Helena and how she was diagnosed?
Helena was ten years old when she was first diagnosed with a germ cell tumour. She had a swollen tummy, and I took her to A&E because she was complaining of stomach pain. They told us she was constipated, and then the pain went away, so we didn’t hear any more about it.
In the run-up to Christmas that year, she began complaining that her tummy was a bit swollen, so I took her to the GP, and it all went from there. Tuesday we were at the GP, Wednesday at A&E, Thursday at the Royal Marsden in Sutton, Friday at the Royal Marsden in Sutton and then chemo started on the Saturday.
Ultimately, the treatment wasn't enough, and Helena sadly died from her cancer in December 2024, when she was fourteen years old.
I, and I can’t believe this looking back, thought that children’s cancer was leukaemia; that it was a special type of cancer that children got, and that it was the only type of cancer that affected children.
I knew about bruising, and I knew about slow recovery from infections and looking a bit pale, those classic leukaemia symptoms. I was aware of those, but I had no clue that there were other types of cancer that affected children, so it was a huge shock when we found out that’s what it was. I had never imagined it would be that.
What was it about Helena’s experience that made you get involved with CCLG?
Many times throughout Helena’s treatment, I’ve felt helpless. There wasn’t really anything we could do, and we were in the doctors’ hands.
It seemed to me that CCLG plays an important part. All the leaflets in the hospital were written by CCLG, and in those whirlwind first few days, when you're looking for a source of information to find out what's going on because the doctors talk really fast and I didn't always follow everything, there were leaflets and information on the CCLG website that I found to be very helpful. I was grateful to have that as a steady source of information that I could refer back to.
As time went on, I became part of a group of people who review those and provide comments to try to make sure that they stay relevant and understandable.
What kinds of projects have you been involved in since Helena’s treatment?
I've tried to get involved in as many different things as I can. Researchers really value parent and patient involvement because it gives them a different sort of view on what's going on, what's helpful, and what's not helpful.
I've been involved mainly in non-clinical kinds of things, obviously because I'm not a doctor, helping a PhD student with research into fertility preservation procedures and how those are approached and discussed with patients and families. When children are about to embark on chemotherapy, what is the best way to approach that topic, which some people obviously find very sensitive.
I've done some work with another PhD student about grief and music and how that works.
I also sit on the project board for the move of the primary treatment centre for the South East region from the Royal Marsden in Sutton to the Evelina. That's really interesting because it involves looking at designs for bed spaces, playrooms, artwork, and where the reception area should be, and drawing on all those many nights of experience spent in hospital to try and make the new hospital space as nice as it can be for the families and children who are going to be treated there.
What role can parents and families play in research?
I have found it really helpful to get involved and feel like I'm doing something positive. The fundraising side is about doing something positive out of a terrible situation that we, as a family, have found ourselves in.
With the research projects, I think there are a lot of people trying really hard to do really good work that will be very useful in the long run, and they need people to help them do it. They really want volunteers to help with their research, so I'm happy to be that person who tries to help.
It doesn't take up loads and loads of time. Often, it will be something like reviewing a patient information sheet to make sure that it makes sense. So, if you are in the position where, during treatment, you're offered the opportunity to take part in a trial, you understand what that means, that it's explained in language that's appropriate for the audience, that the options are clearly set out, and that the information is accessible.
I think that's really important because a lot of it is technical and difficult. Especially when you're in the thick of treatment with your child, your brain is not working as it probably used to, and you need things explained in simple terms. So, if I can be the person who helps to make that accessible for another family, then that's great. That's not a difficult task for me, and I'm very happy to be involved in it.
You don't need to be technical or scientific to be involved. In fact, they almost want you because you're not those things. That's probably quite an important message: the research community wants people who don't know everything and are simply willing to offer their experience and their lived experience of going through this horrible process.
What would you say to others considering getting involved?
I didn't do all of these things whilst Helena was in active treatment because I didn't have time, because it's all-encompassing. Looking after your child and trying to get through all those experiences takes up all of your time. But now my other children are older. They're away from home. I have time, and I really feel like I want to give something back. I also find it rewarding to be doing something useful.
So, yeah, a real mixture of things, but overall, I find that it helps me to be doing something. It also makes me feel like I'm being useful. This is a way of trying to make things better and stop other families having to go through all the horrible experiences that Healy had to go through.
