Emma shares their story:

“Looking back to Holly’s diagnosis, it feels like a million years ago, but also just like yesterday. We’ve been through so much in the six months since we found out she has cancer.

We initially went to our local hospital, St. Peter’s in Chertsey in May this year, because Holly had started getting pains in her shoulder. Holly loves dancing, so we thought she had an injury related to that. The consultant we saw thought it was a fracture, so we were sent home.

A couple of days later, Holly started getting pains in her bottom so we went back to A&E. By this point, Holly was starting to get quite unwell. We knew that things were a lot more serious than we initially thought. The nurse took Holly’s bloods, they did a scan and we stayed in hospital overnight.

The next morning, I was told Holly had cancer. It was 26 May, a date that will stay with me forever. I was devastated – there was so much to take it, as well as the emotion of it all, I had to find a way of telling my daughter and also had to get my head around a whole new language of medical terminology.

I didn’t feel it was right to hide anything from Holly – she was 12 years old and understood a lot. Teenage years are hard enough, without having to deal with cancer. She has been my warrior from day one – I am an incredibly proud mum.

We were transferred to St. George’s Hospital where we stayed for a couple of nights before Holly had her biopsy and we received the official diagnosis of Rhabdomyosarcoma (RMS), a soft tissue cancer. The original tumour was in Holly’s pelvis, but it had spread up through the bones to her shoulder, spine, pancreas and lungs. 85% of her bone marrow was infiltrated with cancer, so chemotherapy treatment had to start that very same day.

There was no time to absorb any information or process anything – and that felt completely overwhelming.  We stayed at St. George’s until 5 June, and then were transferred to The Royal Marsden, where we stayed for seven weeks. It was a really difficult time – Holly’s immune system was at an all-time low, she kept picking up infections and then she developed pneumonia. Thankfully, I was able to spend the whole time with Holly, but this meant I barely saw my son, Will, who was 10 at the time.

Holly spent her 13th birthday in hospital – it was a really tough time as she started losing her hair which is hard for anyone, let alone a young teenager. We made the decision to cut all her hair off and donated it to a charity that makes wigs for children who are unwell.

We first heard about Momentum when we were given a leaflet at St. George’s and we were then introduced to one of their Family Support Workers, Sam, at The Royal Marsden.  I always feel a sense of relief when I spot the green t-shirt and see Sam’s friendly face on the ward – it is a welcome reminder that as parents we are human too, and there is a level of emotional support that is very much needed. The chats with Sam help break up the long and sometimes very dark days at the hospital.

Momentum has also been great at providing us with practical support, including information on grants and help with applying for Holly’s Disability Living Allowance (DLA). This kind of support is so welcome when there is so much going on and your brain feels a bit overloaded.

We’ve had a respite break at one of Momentum’s lodges – it was so special to have that time to ourselves, we can’t put a price on what that meant to us. Given Holly’s health, there is no way we would’ve been able to book a holiday and risk losing the money because she wasn’t well enough to go. To be able to book the break with Momentum without any financial burden and relatively last minute was great.

In September we had an overnight stay on Momentum’s riverboat – it coincided with Will’s 11th birthday and was a fantastic way to celebrate with him. Everything has taken its toll on him – he won’t talk about Holly’s cancer and it worries me that he bottles his emotions up.

Holly has just completed her eighth chemo session, she has one left and it is looking like we will be in hospital over Christmas for that. She’s about to start radiotherapy so we will be making daily trips to The Royal Marsden for the next six weeks.

It is really disappointing for the whole family to think that Christmas won’t be as we had hoped. It was our goal to be done and dusted with this whole thing by then, but sadly that’s just not how it has worked out. We are trying to stay positive and have planned some nice outings– we’re taking the kids to the Jingle Bell Ball and to see a musical. At the moment we just don’t know how Holly is going to respond to the radiotherapy so everything else is up in the air.

To other families going through a similar experience to us, I would say, try to remain as positive as you can. There are always dark times, but it can get better. There are still so many memories to be made – family time and laughter at this time of year is what it is all about.  I’ve learnt that Christmas is all about the people around you – no one cares about gifts and materialistic things. Use the support systems that are in place from charities like Momentum – they are there to help.

For us, we are looking forward to January 2024 and hopefully receiving positive news from the results of Holly’s scans. If everything goes to plan, she will enter a new phase of treatment will be in remission chemotherapy.”