Eli’s story
“Eli is so much fun. He has just learnt to cycle – he absolutely loves his bike and his scooter. He was recently gifted a bike from a charity to help keep him active. Eli is a sporty boy who loves basketball and football – he was really enthusiastic about the Euros championship this year and enjoyed watching all the games.
In January 2023, Eli had started getting recurring fevers. He would wake in the night screaming in agony with stomach and leg pain. I kept taking him to the GP and to A&E at The Royal Alexandra Children’s Hospital, but I would always get fobbed off and told it was a virus. It got to the point where I didn’t want to take him to hospital anymore and I even started doubting myself as to whether there was anything wrong with Eli. The hospital eventually ran some blood tests and discovered Eli was anaemic, but nothing else was picked up.
We decided to get private healthcare to see if we could get anywhere, but they dismissed our concerns, and we were told not to worry, and that Eli doesn’t have cancer.
After about 10 weeks of going to and from the hospital and the GP surgery, we eventually got to see a fantastic paediatric consultant at The Royal Alexandra Hospital – by this point it was March. She did a physical assessment and noticed Eli had a swollen liver, so they did another blood test. The paediatrician booked us in to see her at her own clinic in six weeks, but the very next morning, we received the news that Eli had cancer.
We were told to head straight to The Royal Alexandra Children’s Hospital where they ran more tests and confirmed the devastating diagnosis that Eli had acute lymphoblastic leukaemia (ALL). Eli was just three years old.
I felt so angry when we got the news as I knew Eli hadn’t been right for such a long time. It was a relief to finally have a diagnosis after a really stressful time. As well as Eli not being well, I had my younger son to look after who I was breast feeding – it felt like a lonely time. That said, the whole of the oncology team at The Royal Alexandra Children’s Hospital have been brilliant – the nurses have been great, and really reassuring.
After spending five nights at The Royal Alexandra Children’s Hospital, we were referred to St. George’s Hospital in London where Eli had a bone marrow biopsy, his port-a-cath fitted, and had his first round of chemotherapy. From there, we were referred to The Royal Marsden where Eli had chemo treatment for nine months. Over the course of this time, Eli had four one-week stays at the hospital, where he was receiving intensive treatment. It was a lot for us as a family, but The Royal Marsden were brilliant, and provided us with accommodation close to the hospital.
Eli has been quite sick from the medication, and he’s had different side effects, but thankfully, in December last year, he started maintenance treatment. This means I administer the chemo for him at home daily, and twice on a Wednesday. Eli still has weekly blood tests, but we only have to visit hospital once a month for chemo and can go home afterwards.
We were introduced to Momentum Children’s Charity at The Royal Alexandra Children’s Hospital. One of their Family Support Workers, Liz, came in to see us very soon after we’d received Eli’s diagnosis and I’ve been in touch with her ever since. Having someone who checks in to see how we are doing really helps. Liz has been brilliant at finding out information for us, including practical and financial help. Momentum have also supported my mum – grandparents are often overlooked, but Momentum realises the need to be there for the whole family.
It has all been a bit of a whirlwind, but we are hoping to book a stay at one of Momentum’s lodges and go out on their riverboat.
Eli will complete his treatment in April 2025. I have mixed emotions about it as it will be a nerve-wracking time. While Eli is undergoing treatment, he is having blood tests, and we are seeing consultants regularly which gives us a sense of reassurance. We are looking forward to having a bit more of a ‘normal’ routine where we can plan in a few more things without having to worry about being close to a hospital in case Eli is unwell.
On 1 September, Eli turns five. It is a busy month with him starting school too. I feel nervous and I think the school are too. Eli has medication administered through his stomach and the school will have to do this. There are always so many bugs going around at the start of a new term and Eli’s immune system is compromised so he is more likely to pick something up which fills me with anxiety. Eli is extremely excited about starting school! He is going to be in the same class as his best friend so he can’t wait.
My message for other parents with a child who is unwell would be to trust your gut instinct – you know your child best. We fought so hard for Eli – it really did feel like a battle. One of our friends’ children had been diagnosed with cancer so I knew the symptoms, but not everyone does. Use the support systems that are available to you – Momentum, other charities, families that are going through the same thing – everyone will want to help you.”