“Lily had been unwell for a few months prior to receiving her cancer diagnosis. She was getting terrible back pain, ear infections and warts on her fingers and despite regular trips to the GP and various antibiotics, nothing seemed to be clearing. The GP originally said Lily’s back pain was due to growing pains and she was referred for physio. Before long, Lily started getting really bad headaches – the pain was so bad that it was making her sick and causing her a lot of distress. 

We took Lily to A&E at the Royal Alexandra Hospital only to be told she had a viral infection, but it was just fluid she was bringing up, not food as well, so that didn’t make sense to us. Two days later, Lily was still being sick a lot so we went back to A&E and they did a blood test straight away, which was swiftly followed by a second blood test and Lily being admitted and taken to a ward. 

Our consultant, Dr Catherine Wynne asked me to call my husband and tell him to make his way to the hospital, and at that point, I knew it was serious. We were told the devastating news that Lily had acute lymphoblastic leukaemia (ALL). 

The weeks and months following Lily’s diagnosis were a whirlwind. We were transferred to St. George’s Hospital by ambulance, where Lily had her portacath fitted, which we call her ‘wiggle’ and she started chemotherapy treatment straight away. 

Lily spent four weeks at St. George’s, before we headed back to the Royal Alexandra where she spent another 2/3 weeks. To add to the worry, Lily was diagnosed with diabetes, and this was brought on by the steroids she was having to take. Lily kept picking up infections so we were going back and forth to St. George’s for these to be treated. We also discovered Lily is allergic to some of her medication, so we’ve had to reintroduce this back into her system slowly – it has all been very intense. 

Prior to Lily’s diagnosis we had absolutely no idea that she could have cancer, or anything remotely serious. I was very disappointed that we were being fobbed off so many times by medical professionals but was relieved to be told that the type of cancer Lily has is very curable.  

When we were referred to St. George’s, I met an amazing nurse who told me about her daughter who had also had the same type of Leukaemia as Lily and was now 21 years old and in good health – it was so reassuring to hear this. 

Lily’s younger brother, Alfie, 11, has been brilliant throughout everything. He is thriving at school and is looking forward to starting secondary school in September. It hasn’t been an easy time for Alfie over the last few years as my husband had a stroke three years ago, which has resulted in him being on life-long medication. Both Alfie and Lily have counselling which they get a lot out of. 

Lily returned to school as soon as she could, firstly on a parttime basis, and then more recently, she has been going fulltime. Staff from the hospital go to her school to take her bloods to try and minimise the impact on her daily life. 
Lily is now in the maintenance phase of her treatment and although she feels pretty rough the day after treatment, she generally bounces back really well. Her hair is starting to grow back now which is brilliant to see. 

We first heard about Momentum when Hana, a Family Support Worker from the charity, introduced herself to us when we arrived at St. George’s Hospital just after Lily’s diagnosis. We had so many things running through our minds and Hana made everything so easy for us, answering lots of questions. Hana was always there to check we were ok.  I have had so many amazing chats with Hana and have formed a strong bond with her, she is like part of our family, and we will never forget her. 

Everything has really taken its toll on us financially, and Hana helped us to apply for a grant to pay for hotels, fuel and food when Lily was being treated at St. George’s. Both Hana and Liz, our Family Support Worker at the Royal Alexandra Hospital, have been amazing. They helped me to apply for another grant when I was struggling to pay our council tax and other bills. I couldn’t get Lily’s Disability Living Allowance as there was a 14-week delay and being self-employed, I wasn’t able to work during Lily’s intense treatment. I wouldn’t have been able to apply for the grants without the help from Hana and Liz – I didn’t have the headspace for it with everything else going on. With the help from Momentum, I received a grant for £1,000 which allowed me to pay the council tax, gas and electricity Lily needed to stay warm. We are currently looking for a new house to rent. The windows in our current house are wooden and need replacing – it is just too cold for Lily. Our rent was increased again this year, and financially everything is still a fight.  

Liz is amazing with Alfie, she’s always making sure he is included in things and she knows us all really well. Lily and Alfie have had pebbles painted by volunteers at the charity, and they both have these on their windowsills. I had a scarf sent to me which I love – it is so nice to know someone is thinking of me. I couldn’t imagine life without Momentum to be honest. 

Lily started maintenance treatment about a month ago, so she is now taking oral chemo tablets and other medications. Lily’s treatment plan is about 2.5 years in total.

We recently met another family at St. George’s Hospital. Their son Archie has the same type of Leukaemia as Lily so we’ve been able to sit with them and give them an insight into what happened with Lily. We’ve really bonded with them, as Lily has with Archie. 

We’re looking forward to taking a trip on the Momentum boat and when this is all over, I will be giving something back to the charity.”

Lily said: “I go to Burgess Hill Academy school and my favourite subjects are English, history, and health and social care. I do my GCSE’s next year, and then I’m looking forward to going to college and hopefully starting a career working with children. My school has been really supportive since my cancer diagnosis, and all the teachers have been great, as have my friends. When I’m not at school I enjoy going out with friends and going shopping, especially for makeup and wigs. I’ve got three wigs – a blonde one, a burgundy/pink one and a brown one with a blonde piece.  I was heartbroken when I found out I had cancer. I remember mum and dad being taken away to be told the news, and then the oncology consultant coming to speak to me with them. I would like to encourage everyone to go to the doctor and get checked out if you notice anything out of the ordinary, whether that is back pain, headaches, bruising. Keep pushing for a diagnosis. The earlier things are diagnosed, the better the prognosis. 

I’ve recently made friends with a nine-year-old boy called Archie who has the same cancer as me. We met at St. George’s and we chat to his family via Instagram. We give each other support and I answer any questions he has about treatment, side effects and anything else. It is lovely to be able to be there for Archie and support him and his family. 

Momentum has helped us massively with both emotional support and with grant applications to help us financially. All I can say is thank you – Momentum has been a wonderful support during a very traumatic time.”