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The devastation of losing an only child

July 16, 2018

Thirteen-year-old Evie starting suffering from violent headaches. She was rushed to hospital while on holiday in Spain where she was diagnosed with a brain tumour.  She died three months later. Julia’s House nurses were there for Evie and her family in their last few weeks together, enabling them to stay out of hospital and at home. Here, her dad Bryan talks about the devastation of losing his only child.  

Evie had been having headaches and being sick for a week or so, but the doctors thought it was just hormonal, part of growing up – something she would grow out of.

We went to Spain on a family holiday and when we arrived Evie went straight to bed which wasn’t like her at all. She had something to eat and went to bed but got up at 9pm with a raging headache and being sick. By 2am the headache was so bad she could not stand the pain and we rushed her to A&E.

Within half an hour she was seeing a neuro specialist – it turned out she had a brain tumour the size of a clenched fist and the pressure of it was causing the headaches. If they had not picked it up when they did we were told Evie could have been dead by the evening.

When the brain tumour was first diagnosed on 24 October 2017, the doctors in Spain had implied that, because it was so large and Evie hadn’t shown any symptoms until the last minute, it must have been slow growing and benign. 

She had two emergency operations in San Sebastian that saved her life, and we began to plan for an extended period of chemo and radio therapy. Then we came home to the UK, got the full pathology report and our lives fell apart - we were told that not only was it malignant, but it was also aggressive and terminal. She could not be saved but with the right treatment she could live for six to nine months.

So began many conversations with the Macmillan nurse, the oncology team and the neuro-surgeons about what our options were and the impact on Evie. The surgery had left her paralysed down one side, with some sight and hearing loss and damage to her short-term memory. Because of the latter, we don’t think she ever really knew what was happening.

Somehow, we managed to take it all in and talk in an almost detached way about what the treatment would mean for her, and how the side effects would take their toll on her. My wife and I were totally focused on Evie in every respect. We were driven by the need to not only keep her alive, but also give her the very best quality of life that we could.

As you can imagine, chemo and radio therapies and quality of life are not good companions.  

Because of the severity of Evie’s condition, the advice that we were given was that rather than undergoing a period of chemo for 12 weeks, followed by a short break, then a period of radio therapy, Evie would have to have them compressed into six weeks and done simultaneously.

We had to weigh up the impact on her for the first two months which would have been the worst, against the extension to her life of up to six months. It goes without saying that we were desperate to have her with us for as long as possible, but not at any cost. 

We were completely torn and swayed back and forth for days, undecided on what course of action to take. Eventually we realised that one of us leant more towards treatment and the other didn’t. There were no disagreements, just immense sadness. 

We explored every option with the specialists but eventually the decision was taken out of our hands. A scan revealed that Evie’s tumour had grown incredibly rapidly. It had grown so much that treatment would be completely ineffective. Instead of six months, we had a few short weeks at best. 

We put the wheels in motion to take Evie home so that she could be surrounded by those that loved her. She had a life expectancy of two weeks and she survived for six. We needed the combined support of nurses from both Julia’s House Hospice and CLIC Sargent. Without them, Evie would have died in hospital. 

Hospital care is all about routines and is so regimented with everything being done in time slots. There can be no flexibility because the nurses have no spare time. Evie would be woken up so that tests could be done, instead of delaying them until she was awake. I just thought, Evie is dying, she’s exhausted, is this really necessary?

We were offered a place at a hospice that was miles away, but none of us wanted that, Evie just wanted to go home and be in her own bed, with her pet cats and her friends coming to visit. There is a huge amount of comfort in familiarity.  

People in our situation think there is only hospital but with the right support there is another way. Being at home gave us control back. We had everything we needed, were able to sort out our lives, cook, potter around the house and sleep in our own bed.

We wanted to be with Evie every second of every day - you can’t do that in hospital.

We could not have done any of this without support.  CLIC Sargent would pop in for half an hour two or three times a week to do some medical checks and Julia’s House nurses would come for a couple of hours a day – and overnight some days - to give us a break.

There was a really good balance from Julia’s House with each member of Evie’s care team offering her different things  - the younger nurses,  Jess and Rachel, would pop in and chat to Evie, wash her hair and play games and entertain her and the older nurses, Lisa and Heather helped us with her more complex medical needs.

Having that overnight care every few days made a big difference. We could shut the door, go to bed and have at least a chance to sleep knowing Evie was being cared for.

Evie fought the cancer with a dignity, humility and strength that would put any of us to shame. She never complained, she maintained her sense of humour throughout and we couldn’t have been more proud of her.

Evie died on 11 January 2018. In her 13 years she packed in a huge amount and everyone that she touched remarked how caring and loving she was. Friendship and loyalty were incredibly important to her and by having her friends close she spent her last few weeks knowing that she was loved. 

Would we have put her through the treatment had the prognosis not been so bad? Probably, but it would have been a horrible decision to make. Whatever you decide in these circumstances is the right decision because you always have your child’s needs at heart.

The hardest part was telling Evie she had cancer. She asked us: “People die of cancer don’t they?” and we had to say yes, they do. Because of her short-term memory loss she did not remember things but we felt it would be too harrowing for her and for us to go through the agony of telling her the news over and over again. We decided we would only raise it again if she actually asked. We got a sense that she knew more than we were saying.

Towards the end she was asleep 90 per cent of the day. Nurse Lisa told us that hearing is the last sense to go when you are dying so we would talk to her and read stories – it was comforting to think she could still hear us.

Our future is gone. We are facing a lifetime without Evie. I will never see her graduate, never walk her down the aisle, never be a grandfather. Evie defined our lives, defined every decision we made - not just the big decisions like what car to buy or which school to choose but the little ones  too – what time we got up, what food we bought. There is no structure to our lives anymore.

Our water bill and food bills have halved – there is no hungry teenager in the house using all the hot water. It has made some of our family and friends rethink how they live their lives – there is no time to waste, you need to enjoy what you have right now. For us, there is just a vacuum – we are living our worst nightmare.

 

Become a Julia's House Nurse

Anyone thinking of becoming a paediatric nurse of changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.

           

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