This Childhood Cancer Awareness Month, Louise shares Fred's story and explains how she is helping to create a brighter future for children and young people with cancer through fundraising and research.
Could you tell us a little bit about Fred and how he was diagnosed?
Fred was an indestructible boy and was relentless. He was really energetic, always moving, always on the go, never ill. So, cancer was never something that really worried us. I worried about him all the time, that he was going to fall out of a tree or fall off a wall, or, you know, do a stunt on his bike that would go wrong, but I never really worried about him being ill.
He was diagnosed very quickly. He had been ill for about a week, feeling quite tired and quite lethargic, but he was thirteen, so we just thought this was typical teenage behaviour. We took him to the GP thinking that he had glandular fever, and they ran some blood tests. Then, really quickly, we had to take him to hospital, where he was diagnosed with acute lymphoblastic leukaemia.
Did you know much about the signs and symptoms of childhood cancer before Fred became ill?
I didn't know anything about childhood cancer in terms of what to look for. It wasn't even on my radar. I had memorised all the symptoms of meningitis, and I knew the symptoms of sepsis. I actually sent my husband a list of the symptoms of sepsis the day before Fred was diagnosed because the symptoms were quite similar. So, I said, "I think we need to take him to the doctors, just in case it's this." But a cancer diagnosis was completely off our radar.
Could you tell us about Fred's treatment and side effects?
Fred was diagnosed in July 2019, and he died in May 2020. In those ten months, it was a really complicated process of treatment. A little bit like Fred, Fred's cancer was awkward and complicated, and it didn't respond to chemotherapy. By the end, he was referred for CAR T-cell therapy. But to get to that point, we had to go through all of the chemotherapy options on the treatment plan and discover that they didn't work before he could move on to something else.
I think we felt that what we really wanted was for children in the future not to have to go through all the treatment that Fred went through for it not to work. We wanted children to be able to know really early on that theirs was a type of cancer that was not going to respond to a particular treatment, so that they could be moved much more swiftly onto a different pathway. That wasn't something that was available to Fred, and so we were keen that this might be his legacy: that, in the future, children would have that option.
Fred didn't really have very severe side effects from the chemotherapy, mainly because it wasn't working. But the treatment itself was quite brutal. The steroids, in themselves, were brutal. I think they were the worst bit.
People talk about steroids making children angry, rageful, and prone to mood swings, but with Fred, they actually just made him really quiet, which was unheard of. Fred didn't really talk very much, and he didn't really smile very much, which was really difficult.
The main issue around side effects for Fred was more the restrictions that the treatment placed on him. Fred was a boy who was always filthy and always covered in bruises. He would throw himself down on the floor just because he thought it was a fun thing to do. Suddenly, he had to become very, very clean and very, very careful, and that was something that he found incredibly difficult.
He used to talk to his doctors all the time about what his platelet levels needed to be to do certain activities. He would negotiate with his doctors so that he could still go go-karting, as long as he was careful, and could still go on rollercoasters and do all those things that he really enjoyed.
So, I think it was the restrictions more than the physical side effects for him. But as time went on and he grew more poorly, those side effects obviously became more severe. He was an inpatient in hospital for quite a long time and had some quite intense chemotherapy. It wasn't so much the side effects themselves; it was that you could see the damage that it was doing to his body and how much his body was struggling to cope with it, which was really quite difficult.
One of the top priorities for parents and researchers is kinder treatments. Why do you think that is so important?
I think kinder treatments are really important because the toll that treatment takes on children's bodies is something that we really had no idea about. Everyone knows that chemotherapy is bad, but I don't think we were quite prepared for how much it would affect Fred's body, or how much it would restrict his day-to-day life.
As a child with a cancer diagnosis, you are already dealing with an awful lot. But then to have additional restrictions placed on you by the treatment, because you can't go out, you can't necessarily go to school, you have to be really careful, and you feel so rotten, just makes everything even worse.
I think we were really aware that Fred was a really strong, robust, almost invincible boy. We were very conscious that even if he had made a full recovery, he wouldn't have been the same again, because the toll that those treatments had taken on his body had left lasting damage.
As much as we want as many children as possible to survive, we want that quality of life to be preserved as well. We don't want them to suffer all of the consequences of the treatment as well as the consequences of the cancer.
What was it about Fred’s experience that made you want to get involved with research?
We set up Don't Look Down as a CCLG Special Named Fund because we wanted to fundraise for research projects that would help find kinder treatments and enable earlier and kinder diagnoses.
As well as the fundraising, I've also been involved in research projects as a parent advisor. I think it's really important that, when clinicians and researchers are looking at childhood cancer, they have that input about what it's like for the child and for the parent, and can advocate for what really makes a difference to the treatment plan and the treatment experience, rather than just focusing on the end results and the data.
Advising on research projects and being involved in research is really rewarding. This is exactly why we got involved with CCLG, because we wanted to make a difference. We wanted Fred's life to have made a difference and for that to have benefits for children in the future.
It is quite hard, though. There's always a moment when some really good news comes out of a research project, or something amazing happens, and you think, "Well, yes, it's a bit late, though, isn't it?" Because it's too late for us. You have to sit with that for a bit and remember that the reasons you've done it are still the reasons you've done it, and that it is incredibly beneficial.
I do it as well because I really like talking about Fred. It's really nice to talk about him, and it's really nice that people know who he was and that he isn't going to be forgotten. So being involved in something that is really positive and creates a long-lasting legacy is really important to us.
Do you have any messages for other parents or survivors who are thinking about getting involved?
I think if anyone is thinking about getting involved in research, it's really something to consider. It's incredibly hard to have gone through everything that we've gone through and kind of have nowhere to put it, nowhere for it to go. But being able to focus that energy, knowledge, and experience into something really positive makes a huge difference.
