Bec’s story: “I don’t know how you can do this journey without Latch”

Bec lives in Cardiff with her daughter Maud, six, and husband Paul.  In December 2011, when she was seven, Bec’s eldest daughter Martha was diagnosed with rhabdomyosarcoma, a rare cancer that starts in soft tissue. Martha had five years of treatment, including periods of remission. Sadly, Martha died in January 2017. Bec has become a Latch Ambassador and says the support she received from the charity, including a Latch Social Worker and our Home from Home accommodation, helped her family cope.

Martha had over 90 rounds of radiotherapy and countless cycles of chemotherapy. Her cancer came back three times over five years. Throughout this time all she really wanted was normality and so did we. Latch helped to provide that.

I don’t know how you can do this journey without Latch. They are part of the entire package that you get when you walk through the doors of the paediatric oncology unit at the Children’s Hospital for Wales in Cardiff. Because of the way that Latch is set up as a charity within the hospital, they are in a unique position to support you. They feel like an extension of the medical setup in the hospital.

Latch Home from Home accommodation

After Martha’s surgery to remove the lump and diagnosis, she undertook three months of treatment in Cardiff. The Latch Home from Home accommodation helped me to cope. I could go there to escape the hard, clinical environment, have a shower and use the laundry room to wash clothes. I could also make myself and Martha some food. I wanted Martha to eat really well so I’d use the kitchen at the accommodation to make food that she loved and was familiar to her. 

Martha liked sitting in the sitting room. The accommodation has got a warmth about it and the other families we met there were lovely. It feels like home, and I can honestly say that going there, to this day, feels like going into an extension of my house. Even though it’s filled with hard memories, there’s something very comforting about the space.

We also spent two months in Oklahoma, USA where Martha had proton beam therapy and further chemotherapy. Martha received amazing treatment, and aside from the chemotherapy induced sickness and managing the severe pain on her face from the proton beam, we did our best to treat it as a positive family experience. 

When we returned to the UK, after more chemotherapy, Martha went into remission. Unfortunately, within a few months the cancer came back, this time in the lymph nodes in her neck. What followed was a further six months of radiotherapy and chemotherapy, which was brutal. It resulted in Martha losing the ability to eat and the desire to speak. We had to stay on the ward for several weeks so the pain and her diet could be managed.  It made such a difference to know that Latch was always just upstairs ready to support us in whatever way we needed.

Treats and in-hospital support

The days can be incredibly long when you are in hospital and there are only so many Disney films that you can watch. Martha loved all the various people who came onto the ward to entertain her, thanks to Latch. This included children’s entertainers and artists who painted with her and the other children. 

Latch also organised treats and trips away from the ward. For example, visiting the Build- a-Bear shop with other children going through treatment. There were even get-togethers arranged for the mums and dads which were a lovely way to spend time with others who truly understood what we were going through.

Latch also provide equipment in the hospital, like the LATCHmosphere, which made the radiology department less scary. The system creates different light and sound experiences in the MRI area. Martha recognised the Latch logo and it gave a familiarity to the area, helping her feel safe.

Support from a Latch Social Worker

It was particularly helpful to have someone in the hospital who I could speak to day-to-day in total confidence about private things to do with Martha’s treatment. I really needed this emotional support from Latch because, increasingly, I was having to see Martha endure procedures I would have struggled to manage myself whilst telling her it was all going to be fine. I also had to become a different person, one who could administer injections, manage nasal gastric tubes and strictly organise various drugs, even though I have no medical background. It’s a huge responsibility.

Unfortunately, Martha’s cancer came back, this time in her groin and leg so she had more chemotherapy and radiotherapy, followed by another short period of remission. Finally, the cancer resurfaced in her abdomen. Martha’s final course of chemotherapy treatment was at the Royal Marsden hospital in Surrey where we had to travel to each week from Cardiff.  An unexpected period of high blood pressure and the need for emergency surgery on her kidneys indicated just how aggressive and fast growing the cancer was this time. 

Compassionate support

In January 2017, when Martha was 13, one morning I phoned the nurse to tell her that something had happened. Martha seemed really, really poorly that day. The nurse indicated that this could be it. The nurse came around later that day and Helen sent a kit with her to take Martha’s thumbprint. Martha passed away later that day. Helen got the thumbprint made into a beautiful necklace for me. It was a gift from Latch as part of their bereavement support. It’s the most precious piece of jewellery I own and I always wear it. 

This was one of the most amazing things that Helen did for me. It’s the fact that Helen, and Latch as an organisation, know us so well that they had the confidence to send the kit in that sensitive moment. The moment we were told it could be Martha’s last day with us.

Fundraising for Latch

Martha was very aware of how important Latch was to us as a family and what they’d done for her and all her friends she made in the hospital. She loved to support Latch and did so in a number of ways. For example, selling Latch Christmas cards at her school Christmas fair and being a Latch carnival queen assistant at a fundraising event.  We are so proud that her enthusiasm for Latch lives on in her family, friends and school community. They continue to fundraise and raise the profile of the charity, doing everything from bike rides, to running events and bake sales. 

Paul and I continue to fundraise and support the charity too. Paul has run a number of marathons. Martha has inspired the raising of tens of thousands of pounds for Latch. I have become a Latch Ambassador. I feel very privileged to be able do this. I’ve done everything from speaking about the charity in schools to collecting cheques for the them where money has been raised by other individuals and organisations. I also spoke in the Senedd about Latch when it was their 40^th anniversary, which I was delighted to do. 

Being involved with the charity means that I have the opportunity to go into the Children’s Hospital and see everyone. It’s a comfort. I genuinely feel that I’m missing being with my family if I don’t go. They are an extension of everything else in our lives.

I feel like I’m helping someone who’s like Martha by being involved with Latch. I want the children who have to go through cancer to be able to have treats, like those Martha had.  And I want to help families who need financial support at such a difficult time in their lives. I also want to tell people how important Latch is.

Future thoughts

We’ve been blessed with another daughter, Maud, who is six. She talks about Martha all the time, even though she never met her. She recently ran the Cardiff half marathon children’s race and raised nearly £500 for Latch in doing so. She saw the poster advertising it and I explained what it was. She said: ‘That means I could do something like Daddy to raise money for people like Martha and Latch.’

I never wanted to be a bereaved parent, but Martha’s positivity was infectious and has helped me to appreciate how many incredible people there are quietly getting on with their jobs in unbelievably difficult and sensitive circumstances. It has been a privilege to know the team at Latch and to see their dedication first-hand.

I hope that Maud can continue smiling as much as she does, without the troubles behind the smile that Martha had to carry.  I really would like to see more funding put into children’s cancer research. And I hope that Latch continues to grow and evolve as a charity to accommodate those that it needs to support.”