Elly's family visited Ben's Retreat in June 2023.
Elly was diagnosed with Hodgkin’s lymphoma in October 2019, at the age of 14, after nearly a year of failed GP visits.
Three GP’s failed to grasp that screaming at night was a common sign of cancer, thank goodness for Google, and that we insisted on an MRI.
We just knew something was terribly wrong, Elly is quite muscular, she rode horses and played rugby, her swollen glands were never identified until her biopsy, which if we hadn’t insisted on the MRI, may well have gone undetected until too late.
Her first MRI detected an anomaly, but the radiology department failed to asses her MRI for 6 weeks ( the NHS must review MRIs within two weeks) Elly proceeded to worsen and could hardly move, she slept all the time, and as a family we fell apart with worry.
The impact of this is often not discussed, but the mental trauma that Elly and her younger sister experienced has had a lasting long term impact, that only families who have experienced childhood cancer can truly understand.
On her second MRI they identified the cancer and within two weeks she’d had bone marrow aspirations, several full body MRI’s, CT scans and a neck biopsy where they identified HL. She was staged 4B as she had lesions in her spleen, where a lot of pain was situated, her bone marrow and her lymph nodes were all cancerous.
The team at the cancer centre were amazing and she started chemo early Nov 2019, she was fortunately randomised for a trial which meant she had a different chemo mix, and this meant she avoided radiotherapy. After 2 months of chemo she had a full body CT scan, and as she told everyone at Christmas’ I light up like a Christmas tree’ there were now less red lights, as she has responded well to the first two cycles. Her hair fell out, and she suffered with side effects, she got sick Christmas Day and she spent Christmas in isolation, which was utterly miserable.
She battled on and after another 4 months she was declared NED, this means no evidence of disease. No bell ringing, no told you’re cured, no discussions of remission, just NED, which is all you ever want to hear.
She managed to miss all of year 10 and then Covid hit and we isolated as a family, it was hard to get food, but our friends helped us out until we could get orders in. With GCSEs around the corner, Elly decided to cut back on some options and she managed to pass her reduced exam list and to get into sixth form. She trained as a life guard as she was a keen swimmer, and now she works after school. She has just finished her A-levels, she’s an amazing person and inspires us everyday, as does her sister who supported Elly all through her journey.
The fallout is permanent and we try to make the best of what has happened, but the lack of mental health support for survivors and there families is staggeringly poor, we carry on, but cancer children are not refers into cahms for any help after their experiences and this should change.
However, what the Ben Saunders foundation does to give respite and happiness to child survivors and families is a truly wonderful act, so if you are reading this please support this fantastic charity.