“It’s very hard to put in words what I felt when Afonso rang the bell at Kingston Hospital to signify the end of his cancer treatment – it was a huge milestone. For cancer patients and their families, it is the day that you have waited for. It means your child has overcome all that was necessary, and that whole family, has coped with uncountable hospital stays and appointments, chemotherapy treatments, steroids weeks… the list is endless. It’s such a happy moment, a dream come true, where you continue to believe and have hope for the future that better days will come.

Afonso was almost four years old when he was diagnosed with acute lymphoblastic leukaemia (ALL) during the first wave of the COVID-19 pandemic in 2020. I remember the day we received his diagnosis and what my first thoughts were – “he is going to die” and “this diagnosis is not right, it can’t be”.

After my first night with Afonso in the hospital, just hours after hearing that he had cancer, I was in a lot of emotional pain and despair. I felt panicked and was in total shock. I had so much to learn, a whole new vocabulary was starting to be introduced, one that I didn’t want to have to know. I tried to hold myself together by remembering the nurse’s words, “it’s treatable”.

Afonso was very uncomfortable with the ‘hotel facilities’ and was very upset with me. After the first canula was put in his hand he said, “why do you allow them to hurt me so much?”. Thoughts of “why him, not me?” will continue to be one of my nightmares. Unfortunately, no one knows why cancer appears, but everyone knows it can come back. My husband and I must learn how to live with this fear for the rest of our days. Nonetheless, we try our utmost to stay positive and to only look on the bright side of things.

Supporting a child with cancer is very hard. Apart from Afonso, who was often in hospital, I had his twin brother, Gabriel, who needed love, support, care, attention, and patience. I also had to think of my husband who was having to try hard to combine work, parenting, and now, is trying to help us all move on.

We’ve had the support of my mother and my best friend, and several other people to whom we are very grateful. Various teams at Kingston Hospital were very supportive too. Afonso’s consultant was also key to driving me in the right direction and was always there to answer my infinite list of questions and insecurities. And last, but not least, we had Momentum and their amazing team.

For parents of children who have had cancer, the disease will always be something that we have to learn how to live with. I am still scared of the word “tired” – Afonso manages very well to avoid mentioning it around me, or immediately justifies his tiredness because of something else. He knows how worried I get as it takes me back to when he was first unwell. It’s interesting, and most relevant, to observe how this little human grew so fast, became so confident and learnt so much during more than three years of treatment.

So much happened during this period; Afonso and his twin brother Gabriel started school and then moved schools, they learned how to write, read, do mathematics and learnt how to swim… and he’s done all of this, almost every day, with a beautiful smile on his face.

As a family of four, even during the pandemic, when Afonso was feeling well and his bloods were good, we tried to have a ‘normal’ day to day life, avoiding crowded places, but doing age-appropriate activities like other families. Inspired by the ‘pursuit of happiness’, I started the ‘pursuit of normal’ and that is what has helped us move on.

For the ‘end of chemo party’, Afonso wanted a Superhero party, where he was the Superhero, like any other seven-year-old. He knew how he wanted to dress, in his own words ‘prince style of clothes’, the people he wanted to invite, the cake design he had envisioned, the food he wanted to have (cancer parents understand this better than anyone else!). We carefully prepared everything and on 18 October 2023 Afonso thanked everyone and read the following poem by Ms. Moem:

Hope
Hope is the place where you want to go
Hope is the person who you want to know
Hope is the feeling that carries you through
And hope is the future for me and you

After 1240 days, Afonso finally rang the bell full of HOPE and dreams for a brighter future for him and everyone he loves.”