Afonso’s story
I often send photos of my sons to my family, who live in Portugal and it was when my father commented on the dark circles around Afonso’s eyes, that I started to think there was something more to it.
I had noticed Afonso’s energy levels dwindling, he’d started sleeping more during the day, but at first I just brushed it off. He’d never been a great sleeper so I just thought he was tired. I remember my husband taking Afonso and his twin brother Gabriel out on their scooters and Afonso didn’t want to do anything. He had no energy at all and just wanted to come back inside.
I called 111 on 23 May and saw the GP on 26 May. When we were making our way to the doctor’s surgery, Afonso was completely depleted of all energy – he could barely walk. The doctor checked Afonso over, but he couldn’t see that anything was obviously wrong, although he was concerned at how pale he was. He contacted Kingston Hospital to arrange some blood tests.
We arrived at the hospital that same day, we were asked lots of questions, the Doctor did some observations and Afonso had an X-Ray. We waited in a small room for what seemed like ages, before a Consultant, a Sister, and a Nurse Specialist from Paediatric Oncology came in to speak to us. I could tell it was going to be bad news, and they allowed my husband and son Gabriel to come in from the car park. As soon as they told us it was Leukaemia, I remember becoming desperate – my instant thought was that Afonso was going to die. One of the nurses, Sue, was brilliant from day one, she was so reassuring and calming.
Thankfully, the Leukaemia had been caught early. Afonso’s treatment started immediately, that same evening, with a blood transfusion and antibiotics. It was a whirlwind – I’d not had a chance to process anything and suddenly I had a child with cancer. I started doing lots of research so I could understand exactly what was happening.
Afonso wasn’t even four years old, so we had to explain his diagnosis to him and his brother in a very simplistic way, telling them Afonso’s medication was to kill the bad cells in his body.
Momentum has been a warm source of support for us since day one when I received a bag of toiletries from them to use while I was staying in hospital with Afonso. We’d gone to the hospital with nothing, fully expecting to be coming home that night. In the coming days, we were assigned a Momentum Family Support Worker, called Kelly. We were in the throes of the COVID-19 pandemic, so we had to meet outside in the hospital carpark, but it was comforting to know she was there for us at the end of the phone or email if we needed anything. Our family all live overseas, so it was nice that Kelly wasn’t miles away.
Afonso’s diagnosis was very hard for his twin brother Gabriel to deal with. We had all the Covid rules in place which meant there were long periods of time where Gabriel would only see and hear me on a phone. It was tough, he didn’t want to be near me when I did get the opportunity to spend time with him. He is extremely close to Afonso and at three years old, everything was difficult to comprehend. The boys are very close – they play together, sleep together and are each other’s rock. Gabriel has a very calming influence on Afonso.
We were transferred to St. George’s Hospital so Afonso could have his portacath fitted, and within a week of his diagnosis, his chemotherapy and other drug treatment had started. Afonso responded well, and thankfully after six weeks, he was in remission. His treatment has lasted three years in total, and I am so happy that we have finally reached the end. We feel lucky and are well aware that the outcome is very different for many other families.
Thankfully Afonso has never been scared of going to hospital, Momentum has decorated the children’s ward at Kingston Hospital beautifully – it is bright and airy and a welcoming space for children and their families.
As time goes on, you gain some confidence in knowing how well or unwell your child is, and you become less scared about doing things. That was when we decided to take Momentum up on their offer of using their cabins and riverboat.
Over the last three years we have had respite breaks at both of the Momentum cabins. We adore being near water, and seeing the sea is so beautiful. The cabin breaks allowed us to relax and be together, and it gave us the chance to have a break from thinking about treatment. These trips gave us the reassurance that daily life really can get easier.
We have had two trips on the Momentum boat which have both been brilliant – they are educational and fun for the boys. They even got to have a go at driving the boat! It is wonderful to be able to offer these experiences to kids going through cancer – it allows them to temporarily forget what they are going through.
Momentum also arranged music and play therapy for Afonso and Gabriel as well as a very special doorstep visit from Father Christmas which was so special for the whole family.
Afonso started school in September 2020 and I’m really pleased that he’s had a very good level of attendance. He can read, write, and he LOVES swimming! He enjoys building things and plays with Lego for hours on end. He is a happy little boy.
Afonso will have six-weekly appointments for the next year, but we are looking forward to moving on with our lives. We will do some travelling and gain more confidence that life will go back to being similar to how it was before cancer.”