Eve

Eve shares her experience of Emmie’s childhood cancer

“Hi, my name is Eve and I am mum to Billy 20 and Emmie 16. On the 4th September 2017 my life changed forever – Emmie was diagnosed with ALL – we had just returned from our summer holiday in Portugal, whilst we had been away Emmie had not been eating very much, she complained of her legs aching and her colouring didn’t look quite right, I just put it down to her being out of routine and trying to keep up with her older brother and cousins. When we got home, I took her to the walk in, they initially sent her to A&E with suspected appendicitis – she was sent home and we were told it’s nothing to worry about – she did not have appendicitis, Emmie had another unsettled night of high temp and sweating – I got her an emergency appointment at our GP- they were a little concerned about her colouring – we were fortunate enough to see a Junior Dr – who had never ordered blood tests for a child so he thought this was a good opportunity to test the system – Em was booked in for bloods later the same day. By 7.30 that evening I received a phone call from the GP surgery that I needed to get her to A&E as quickly as possible – they said that her high in hb levels could indicate anaemia. At this point, I really didn’t know what to think, we were checked into A&E and waited for what seemed like hours. Canulas, bandages and blood tests all seemed like such a novelty to Emmie – she appeared to be quite enjoying the experience – she never really been to hospital before! She was due to start back at school the following morning after the 6 weeks holidays – She of been going into year 4. Myself and my husband Steve were taken into a small side room with sofas in – I instantly knew that this was not a good sign but still had not even considered the words cancer – leukaemia

Leukaemia Leukaemia Leukaemia- I didn’t have the faintest idea of what this meant – the word itself was just going around in my head. 

We instantly became a ward 84 family – a cancer family, we would stay on the ward for the first 5 weeks – in which time Emmie would be on endless IV drips of hydration and chemo / constantly machines beeping / we would need to learn a whole new language / meet lots of new people all with very poorly children / we would have to learn the rules of the ward – who were the nice nurses and who were a little more prickly, what times are the shifts, will she loose her hair, can she have a wash / should her line look like that?? All whist been on show 24 hours a day – no where to ask the questions / no where to cry / broken sleep / my husband and son living completely separately. Everyone who came to the hospital – all found it hard, all needed comforting and telling them is doing great and everything is going to be alright – even though I didn’t know if it was – I was surrounded by children a little further in in their journey – infections, relapses / complications / death – I had no idea how we were going to cope or get through the next 10 minutes let alone the next 2.5 years.

2.5 years seems like an eternity- my beautiful 8 year old little girl would be 11 when she wound complete her treatment!!

Communication with Emmie’s team throughout Emmie’s treatment was poor – she had had 3 named consultants within the first 6 months – during this time Emmie experienced many more long hospital stays and some very concerning infections – endless weekends of high temps, dangerous symptoms but no one willing to make a clear decision. Infections took weeks / months to recover from, delaying treatment, she had periods where she had a four by six cm hole in her chest and no immune system and another long stint where an infection in her legs left her unable to walk, needing hydrotherapy and intense physio to get her back on her feet- we would end up for hours in A&E with a temperature and eventually end up on a ward where the nurse would ask what her dose of antibiotics is / when is she due pain relief – I needed to be on my A game, as hard as it was, I had to question every decision and push harder when things didn’t feel right.

Emmie found her own ways to cope – she created a routine, attended hospital school, befriended the nursing assistants, got involved in everything – including giving out the beads of courage/ love your garden and made she made her bed space her own. As hard as the intense long hospital stays were, they were also times that someone else was in control, somewhere where other people got it, somewhere you now belonged. Going out into the real world was hard – the lists / alarms for medication / the responsibilities of life, the stares off people, the sympathetic looks, the constant referral to Emmie as a he, nothing can really prepare you for the irrelevant normal moans of day to day life  the frustrations with no one truly understanding, the constant fear of a temperature instantly changing your day or week or month – the unknowing for her brother if you’ll still be at home when he get home from school and if not how long will you be away again – through school holiday, weekends, birthdays, the not being able to be more than one hour from the hospital. Understanding the numbers and what they mean – chemo increase / decrease.

During all of what we had going on – we thought of ourselves as lucky!! It’s a common phrase used between cancer families – lucky that we lived close to the hospital, lucky that it was ALL, lucky that she responded well to treatment.

We saw ourselves as lucky and this made us really think about the other parents on the ward – who had to travel further, who didn’t know the local area, who had no access to food or money as they’d lost there sources of income as a result of their child’s diagnosis, those parents who didn’t get to go home for months / years. Just 9 months into Emmie’s treatment we established Emmie’s kitchen, a monthly session at RMCH where we provided a free 3 course meal for parents/ carers – in as nurturing, non clinical environment with lots of volunteers who could sit and listen to all the difficult journeys of prolonged diagnoses, trials , rare conditions and palliative care.

Initial session was just oncology with 28 meals by March 2020 we were feeding upwards of 250 people at each session from the whole of RMCH. Through Covid this offer evolved in to a weekly take away / snack bags / toiletries/ gifts for parents – over 50,000 meals over the last 6 years – Emmie was recognised by Prince Harry at the well child awards and was a child of courage in 2020 pride of Britain awards.

Emmie rang the end of treatment bell in December 2019, we were excited for find our new normal and have an amazing year of travel and adventures that we felt we missed during treatment !!!!! 3 months after Emmie completed her treatment -Covid hit …. Emmie was on the shielding list and life was again put on hold – meaning Emmie did not have a proper transition from primary to secondary school – Covid impacted massively on year 7 and her drive for certainty and routine was massively disrupted. She got used to again being at home, school on line, inconsistencies with relationships —— as Emmie started to get a little older, she began to reflect on her cancer journey and even though her hair had grown back she still had so many scars – she began to question why her, could she have died, what will the impact be on the rest of her life?? Emmie has struggled massively with her mental health – as have I, it’s the thing that all my cancer family talk about all the time – the lack of specialised support for parents / carers / siblings and the child post treatment.

I did try and access psychological support for Emmie through the psycho social team connected to RMCH but she was deemed to poorly with an eating disorder in 2022- we entered into another unknown world battling another disease that was largely in her head, she was nearly hospitalised on numerous occasions for her weight being dangerously low – we opted for a home based therapy which enabled Emmie to put on some weight – Emmie continues to receive on going psychological support for Anorexia, OCD, anxiety and trauma, she has also experienced delayed puberty, physical scars, leg pain, some difficulty with processing, find it difficult build relationships – Emmie is currently in year 12 and did amazing in her recent GCSE exams – brilliant considering the last time she completed a full school year was year 3, Emmie is no longer under the care of oncology as she is 5 years NED- she was completely discharged in January 2025 discharged with no follow up survivor clinic or access to a late effects clinic. I worry that for the growing numbers of those who now survive childhood cancer there is no plan of how they will navigate the world , their diagnosis will impact them forever yet the support tends to end when the treatment is over.”

Autumn 2025