04 Oct 2024

An absolute fighter: Freddie’s Story

“When I see stuff on the news about childhood cancer I can see the distant look in the parents’ eyes – it’s so painful to see … it’s fear. I’m so pleased Leukaemia UK is there. Research is making children’s lives so much better. I want the day to come when they don’t even remember having their treatment.”

Freddie was diagnosed with leukaemia in April 2022. A few months earlier, the usually energetic four-year-old’s behaviour had started to change. But looking back, Freddie’s dad Francis says the symptoms were incredibly subtle and could easily be explained away.

“In early 2022 we had just moved to near Kingston upon Thames and come through a very rough time,” said Francis, 45, who works as a software engineer. “During all the challenges of Covid in the previous years, when Freddie was just a baby, I had also lost both my parents and had not been able to see either of them due to lockdown. We decided to start a new life in a new location, and so we bought a house with some of the money I’d inherited. We also booked a holiday to Thailand, and it was there Freddie started to show what we now know were symptoms of leukaemia. 

“One day we took him down to breakfast and he threw up all over me. We thought maybe he had a stomach bug. He didn’t want to eat. Then he got an ear infection – we thought he might have caught that in the pool. That was treated by the local doctor but then he started not wanting to walk very far. Freddie has a strong personality. We thought maybe he was just out of sorts with all the travelling and not enjoying the heat, so we just carried him a bit and didn’t think too much of it. But when we got back to the UK, he continued not wanting to walk far and complaining that his knees were hurting. There was one time on a trip to York that I had to carry him through Kings Cross station along with all our luggage. By that time, we had also noticed he seemed flushed and sweaty at night in bed. We decided it was time to book a doctor’s appointment.

Freddie after taking a blood test

“We had a new doctor as we’d just moved, and she immediately booked him in for a blood test and an x-ray on his knees. I realise now how lucky we were as I’ve heard from so many families since then when their GP hasn’t acted so quickly. I was worried at that point – I’d lost a friend to leukaemia when I was 14 so I was aware of the condition. But we got home from the blood test, dropped Freddie off at nursery and went about our day. 

“My wife Lizzie is a TV producer and works from home, like me. The same afternoon as the test, Friday 6 May 2022, I received a call from the doctor. I was in a work meeting and so I handed Lizzie the phone to take the call in another room. I hoped it was just an update and kept thinking ‘if she doesn’t come in, it’s all fine’. I could hear her talking. Then she came in a few minutes later with a face I had never seen before. She looked absolutely broken. She said we had to pick Freddie up and go to A&E right now. We rushed to collect Freddie and were then plunged into the worst night of our lives.”

After a three hour wait in A&E, Francis and Lizzie were taken to a separate room and told their son had had a malignancy in his bone marrow. It took a week to confirm exactly what type it was – acute lymphoblastic leukaemia (ALL). 

“When we were told, I reached the end of my humanity. I didn’t know how to react. I couldn’t cry, I just lost my words. Lizzie burst into tears. If I’m honest – and other parents have echoed this – we almost didn’t believe Freddie. We thought it was him playing up – like a normal four-year-old. I feel terrible about it now, but I also know leukaemia symptoms can be really vague and mysterious. 

“We went back into the other room – it was surreal seeing Freddie looking quite healthy playing on his iPad and sitting up in bed. I wondered if was one of those dreams where I could force myself to wake up and everything would be OK.”

Doctors said that Freddie’s blood levels were still reasonably good and his leukaemia had been caught early. The family went home for one night and were joined by Lizzie’s parents from Rye in Sussex. The next day Freddie went back to hospital and was then transferred to the specialist team at St Georges Hospital in Tooting a few days later.

Freddie during treatment

“It was there we met the specialist nurse and the consultant Dr Sanjay Tewari who sat us down and gave us the most amazing quick medical degree ever on blood and blood cancer. Freddie was also taken to have his port fitted and his naso-gastric tube put in under anaesthesia. I think that was when it really hit home – seeing him going off sitting cross legged in his wheelchair and then coming back flat out and full of tubes.”

Freddie was transferred to the cancer team at the Royal Marsden Hospital in Sutton, Surrey, and started chemotherapy straight away. He stayed in hospital for two weeks, and treatment then continued at home alongside regular trips back to the hospital for any appointments or when he gets any infection or if his temperature increases to 38 degrees or above. 

“He has been so brave throughout but does suffer side effects, especially sickness. It’s now generally under control, but we had some months where he would be sick in the early hours of morning. We learnt, through trial and error, to give him a lollipop as soon as he wakes up and says he feels sick. 

“We found out that the drug he was on could reduce his blood sugar, and we needed to get it into him, whilst avoiding anything solid to eat, as he would just throw that back up. 

“We trained him to take pills by swallowing Tic Tacs and then Nerds sweets. He loved this training, as even if he failed, he got a sweet! Now he’s an absolute champion at it and, even with the biggest antibiotic tablet, there’s no problem! The worst bit was when the naso-gastric tube dislodged and putting it back in involved four nurses holding him down whilst he was screaming. It was awful. But Lizzie bought sticky plasters online and cut them into a special shape, which works well at keeping the tube in place. 

“We were warned he’d lose his hair, but he wasn’t too upset when it happened. He agreed to have it all shaved off one day when he was getting annoyed with it dropping in his food. Both my wife and I also decided to shave ours at the same time! So, we sat outside in the garden and Lizzie let him do hers. His hair grew back once as blonde stubble, then he started maintenance chemo and lost it again. But now it’s back and he doesn’t want us to cut it!”

Freddie is now in remission and has under a year of home treatment left. 

Freddie on a fun day out during his treatment

Freddie on a fun day out during his treatment

“The doctors are pleased with his progress. He is at school and doing well, although he misses some days for appointments and when he is in hospital for infections and sometimes during his week on steroids. The school is brilliant. He started a bit late – in October – but they encouraged him to make a little presentation to the class to explain what was happening to him. We’ve talked to him about leukaemia and he tells people his blood cells aren’t the right shape. We decided at the start to keep life as normal as possible for him. He might get more infections than if we kept him at home all the time but that’s a short-term issue and the longer-term gain is that he’s in school with his friends and doing normal things. He’s an only child and incredibly outgoing and we think this is the most important thing. 

“The hospital is fantastic and keep a very close eye on him. In fact, we went there the other day with no appointment just to have their pasta bake for lunch, as Freddie likes it so much!

“My wife and I have certainly suffered mentally, and it has increased anxiety, but we try and keep to our routines, such as exercising, to help us. Lizzie bought me a timer that sits above my desk and shows me the days, hours, minutes and seconds until Freddie’s treatment is over on 5th July 2025. It can’t come fast enough. Just one more Winter when, of course, he will get infections. But Lizzie is on a school WhatsApp group and all the parents tell her quickly if another child has come down with something.

“Freddie is an absolute fighter and I’m so proud of him. Sometimes he has more energy than the kids around him who aren’t on treatment!

“I remember being told my childhood friend had leukaemia when I was around 12 and going to see him in hospital. And then the shock of being told by another friend that he had died before I could go and see him again. That was 30 years ago, and I know the chances now are so much better for children. But I would love to see the day when it is just pills and much less brutal on the body. When I see stuff on the news about childhood cancer I can see the distant look in the parents’ eyes – it’s so painful to see. I’ve got photos of Lizzie with it – it’s fear. I’m so pleased Leukaemia UK is there. Research is making children’s lives so much better. I want the day to come when they don’t even remember having their treatment.”

Freddie’s hair has now grown back!

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