Rory was diagnosed in April 2018 with Acute Lymphoblastic Leukaemia (ALL). He was just 20 months old and the diagnosis was an enormous shock to the whole family. Momentum Children’s Charity have been a constant support since that time, and here his mum, Jo, talks about their experience:
“Rory had been generally unwell for several weeks before his diagnosis, with virus after virus, and extreme tiredness. We were starting to feel a bit concerned, but put it down to the usual lurgies that young children seem to get. One day Rory’s nursery called me at work to say he wasn’t himself at all and had developed little red dots on his skin. I immediately went to collect him and took him to A&E at West Middlesex Hospital, calling my husband on the way who met us there.
After a few tests, the medical staff sat us both down and told us that Rory had cancer. I’ll never forget that moment, not least because the doctors themselves had tears in their eyes. My husband went grey and sweaty and I couldn’t stop shaking. We were in complete shock, it was terrible.
We spent that first night in West Middlesex Hospital, feeling shocked, confused, and incredibly worried. The next day we were transferred to GOSH for Rory to be fully assessed and given his treatment plan. We started to feel more reassured as we learnt more about ALL, and that – although treatment for boys would be a long 3 ½ years – his prognosis was good. I remember almost feeling fortunate that Rory had this type of cancer.
After 10 days at GOSH we went to Kingston Hospital, which we learnt would be our regular hospital, where we would go for routine treatment and if Rory succumbed to any infections. The oncology team were lovely and I started to feel more relaxed. The panic from that first night had dispersed and I felt we were in good hands. The oncology team also referred us to Momentum Children’s Charity, telling us this was a local organisation who could support us during Rory’s treatment. I couldn’t believe there was this charity that existed to help families like ours; it was so reassuring.
Our Family Support Workers – first Michelle, then Niki – have been just a breath of fresh air; happy, bubbly and kind. From the first time that Michelle brought Blossom the Fairy into Rory’s isolation room, to the regular calls and visits, I felt glad to have someone I could talk to and share my worries and concerns. It was also lovely to know they were there for our whole family, including Rory’s big sister who was overjoyed when they arranged a Fairy Party for her birthday. It was hard for her when Rory was first diagnosed as it split our family apart, and we had to spend so many nights away from home in the hospital. The Fairy Party helped to make her feel special and important too!
We’ve benefitted in so many ways from Momentum Children’s Charity’s support. Rory had a course of play therapy at home and loved it; the therapist really lifted his mood, that was sometimes negatively affected by the steroids and chemotherapy. That hour of play was also much-welcomed respite and time-out for me. We’ve had a couple of trips on the charity’s riverboat, and went to the New Forest holiday cabin for Rory’s third birthday. He still talks about this on almost a weekly basis, asking when we are going back to ‘our’ holiday home! It was so wonderful to just be together in a nice, peaceful environment, knowing the holiday home was clean, well maintained and the local hospital was aware of Rory’s presence. It felt safe and comforting, yet good fun at the same time.
Rory is stronger now; things have settled down and we definitely feel over the worst. Both my husband and I are so grateful to Momentum Children’s Charity. They have brought some essential light relief during our darkest times. We wanted to do something to say thank you, so my husband ran the half marathon and I took part in the Thames Bridges Trek in September. I was thrilled by the support I received from my friends – I thought one or two might join me, but we had a team of 25 people which was amazing. We wanted to raise as much money as possible so that the charity can continue to help families like mine for many years to come.”