George’s story
“George is a very astute, inquisitive little boy. He loves learning, discovering how things work, and building Lego.
When George was two, we noticed his energy levels started decreasing, he stopped being so active and would sit and watch children play, rather than joining in. I had noticed this in social situations, and George’s key workers at preschool picked up on it too. At first, we thought it was a social issue caused by the strict COVID-19 restrictions that had been in place at the time. Not long after this, George’s gums started bleeding at night, and we noticed he got very cold when we went out for walks. We spotted some bad bruising on George’s body and his eyes had started to look dull and grey. We initially thought it was an iron deficiency, nothing particularly serious even crossed our minds.
We took George to the GP a couple of months before he turned three. They recognised that there was something concerning, and we were referred for blood tests at Ashford Hospital.
The morning after the blood tests, we received a call from the hospital at 5am and were told we needed to get George to A&E as soon as possible. It was 2021, and the Covid-19 rules were still in place, so my husband wasn’t even allowed into the hospital with us initially. Receiving a call so early in the morning, we knew it was serious, but never in a million years did we think it would be cancer.
Once we were transferred to the children’s ward, my husband came in and they told us George had blood cancer – it was May 2021. Two days later they confirmed it was acute lymphoblastic leukaemia (ALL). We were heartbroken, and I was really worried about the strain it was going to put on my relationship with my husband.
The next day, we were transferred to St. George’s Hospital, where George had his portacath fitted and his chemotherapy treatment started. We stayed there for five days before being transferred to The Royal Marsden, Sutton.
It was a really stressful time as my younger son, Henry, was still a baby, and we were in and out of different hospitals with George for weeks. Once the initial treatment was over, we came home, and we only had to go into hospital for check-ups and day treatments, unless George was suffering with temperatures from the treatment which meant we had to stay in overnight, sometimes for up to a week at a time.
I remember being given some books for George and a toy lion to help explain to him what he was going through. George was only two years old, and he really didn’t understand much, but we told him his ‘red juice’ wasn’t working properly.
George has no memory of life pre-cancer, so that has helped us in a way because he doesn’t know any different.
The first six months of treatment was really tough. George had to have liquid feeds administered through a tube as he wouldn’t eat or drink. He stopped being the chatty, lively boy he used to be, he was fragile and sick a lot – it was like the light had gone out in him. Thankfully, by December 2021, George moved to the maintenance phase of treatment which consisted of oral chemo at home, monthly chemo in hospital and three-monthly lumbar punctures at The Royal Marsden. On top of this, we had unexpected hospital trips for infections and temperatures. George was on maintenance treatment until this Summer when he finally finished.
We got a call from Momentum about two weeks after George’s diagnosis. One of their Family Support Workers asked us what help we needed and told us a bit more about how they support families. I have had counselling sessions, George has had play therapy and online sessions with Megan the music therapist and the boys have had a Doorstep Santa visit. Our Family Support Worker, Emma has been brilliant – she checks in on us regularly, takes the strain off us, and gives me some relief with George. She also organises coffee mornings so we can talk to other parents who are going through similar experiences.
We have had breaks at Momentum’s respite cabins. They became a safe place for us as they were close to hospitals and it was nice to be away, but also know that you are not too far from home. When George was going through his treatment, it was hard to plan anything much or be too extravagant just in case we were unable to go and couldn’t get our money back.
We have been on Momentum’s boat a few times – the volunteers are amazing. They have so much energy, they know their stuff and are great with the kids.
On 12 July this year, George rang the bell at St. Peter’s Hospital. It was a huge celebration with loads of family and friends. George’s teachers from his preschool and his school were there – it was all very emotional.
George had his portacath removed last week and now we feel like things are a bit more finalised.
We went to Menorca for 10 nights in August – it was amazing. It has been fantastic to see George’s energy levels getting back to normal, especially as he has just gone back to school.
I have just unpacked our hospital bag – until now I didn’t feel ready, but I finally feel more confident.
George has just started a new term at school and he is settling in well into Year 1. We kept him back a year at school to avoid him having too much of his early years schooling disrupted. It was the right decision for us as he is still adjusting to life post-treatment. He is very used to the hospital visits and in many ways looked forward to the care, attention, games and treats that they provided. This term will be a big adjustment for him as he settles into the new ‘normal’. He has made some lovely friends and is making good progress with his reading and writing – we are very proud of him. The staff at his school have been very supportive in ensuring that school is a happy place for him to be and even when he was feeling the side effects of his monthly chemo last year, he was supported so well to enable him to engage with the learning but with a little extra care (and snacks!).
People don’t realise how important it is to donate to charities like Momentum, who are helping families going through treatment. Momentum has given us the coping tools to get through each week and to have things to look forward to. I don’t think I would’ve got through the last few years without Momentum – thank you.”