Posted on Friday 18 October 2019

Elsa’s story – “We just felt horrified that our darling daughter would have the biggest battle so early in her life.”

Twin Elsa from Devon was diagnosed with leukaemia when she was four years old. Here, dad Jason shares their family story from Elsa’s diagnosis to returning to school.

Elsa and her twin Charlotte. When Elsa was diagnosed with cancer, it was the first time the twins were separated.

Elsa and her twin Charlotte. When Elsa was diagnosed with cancer, it was the first time the twins were separated.

“We first noticed something wasn’t right with Elsa in September 2015. It was Elsa and Charlotte’s first year at school. Elsa had a fall and was treated by the doctor and her energy levels just weren’t the same as her twin sister.

We visited the doctors three times and Derriford Hospital twice. They say mums know best and thank god, because it was my wife’s persistence that got the diagnosis as doctors were very dismissive.

When she was diagnosed with leukaemia, we were shocked. We were told that it was possibly a viral infection as to why she was feeling unwell, and then within a matter of days we were told it was leukaemia. It was the worst day of our lives and heart-breaking, never did we expect it to be cancer.

We just felt horrified that our darling daughter would have the biggest battle so early in her life. We felt the unfairness of it all. Cancer is such an indiscriminative and invasive disease no matter who you are. We felt fear and anger of what lay ahead for our beautiful little girls as we knew how much this would also affect her twin sister Charlotte. They hadn’t been separated since birth.

Elsa started her intensive drug regimen and chemotherapy which she finally finished in January 2018. It was with great difficulty that we managed getting her to treatment. We had lengthy periods of staying in hospital and a lot of reliance on friends and family who were in a position to be extremely supportive. Bristol was very far for us to travel but fortunately we were able to have her treatment at Derriford Hospital in Plymouth which is 20 minutes away by car.

It was heart-breaking for us as a family to see Elsa go through this debilitating treatment. We were always amazed at her spirit and resilience. If we needed to gain some positivity, time spent with Elsa would be an uplifting experience.

Elsa experienced hair loss three times, sickness and weight gain. It has taken her time to build her confidence back and we’ve been amazed at her memory as she reflects on what she’s gone through. We are conscious that we need to carefully manage her understanding as she grows older.

It was a really difficult time but we had to keep strong for her and Charlotte. I needed to be there particularly too for my wife and helping her travel through this terrible journey.

My wife had to resign from her career after she had only just started back from maternity. It was an awful lot of pressure on the family budget which we are still suffering the consequences now.

We first had contact with CLIC Sargent when Elsa was transferred to Bristol Children’s Hospital. We stayed in the Bristol CLIC Sargent Home from Home so that we could be close to Elsa when she was in hospital, and Helen and Elsa had regular visits from a CLIC Sargent nurse. They were both the biggest support we would have wanted.

Having a CLIC Sargent nurse and social worker meant we were able to have regular home visits from them rather than facing a trip to the hospital. It was great support for my wife.

Our experience without the support of CLIC Sargent would have been unthinkable. CLIC Sargent was there for us every step of the way."

Friends, school and work were all very understanding. They all shared the same fears and concerns about what lay ahead and what they could do to help, for that we are extremely thankful.

There was a degree of fascination in observing the reaction of others too. From total strangers offering what support they could, to individuals literally crossing the road to avoid a ‘difficult/emotional’ conversation not wanting to discuss Elsa’s diagnosis. We’ve raised nearly £10,000 thanks to the kindness of supporters and strangers too which we’re very proud of.

My wife Helen is back at work part-time now. Elsa’s consultant continues with regular check-ups, which is a continued reminder for us all and can be very emotional. Our little lioness is back at school now gradually returning to a full curriculum and is determined and committed to catching up academically, nothing like some sibling rivalry to spur her on. Elsa has emotional and psychological feelings which manifest in sleep deprivation still to this day.

Our experience without the support of CLIC Sargent would have been unthinkable. CLIC Sargent was there for us every step of the way. We can’t thank CLIC enough and we are extremely grateful for what they have done for us and others in their time of need.

Cancer affected the whole family. We all went on the journey with our little lioness together, and we have such pride in her and her sister. We live in a small Devon community and Elsa has become somewhat of a local celebrity – sadly for reasons we’d rather not have happened though. She’s worth the celebrity title though unlike those who search for it. She really is a remarkable young lady.”

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