On the 29th August 2019 our life was turned upside down. It started at the beginning of July when we noticed Emma was losing weight and becoming extremely fussy with her food, we put this down to her wobbly tooth and not wanting to eat incase she pulled it out.

Emma would fall asleep in the car more often than usual and she was starting to complain of toothache, and earache. We again put this down to her wobbly tooth and new teeth growing.

Emma was generally lethargic and ‘just not quite right.’

Towards the end of the summer holidays Emma’s left eye started to squint and she was complaining of double vision.

After the third trip to our local GP, with us having the same feeling that “she's just not right,” we were advised to go to the opticians about her eye.

We went to the opticians on the 27th August and the optician advised us to go to LRI Eye Casualty, that evening, but unfortunately it would of been closed by the time we got there.

We ended up going to LRI in the morning and we were seen by the eye casualty department. After a thorough examination we were moved to the Childrens A&E for further tests. During this time spent in A&E, Emma was checked over twice by doctors and she also had a cannula put in her hand to take bloods from. Emma was quite distressed by this, having never been in hospital before.

Little did we realise that this was only the beginning of the investigations, where Emma would be very distressed and scared. We quickly had to accept that we had to help Emma through this, no matter how hard it was for Emma and ourselves.

Shortly after Emma had her bloods taken, she needed to have an MRI scan to investigate possible 6th nerve palsy, which they believed was causing her eye to squint.

Because MRI scans are very overwhelming for children and make the strangest unfamiliar loud noises, Emma was so scared they had to stop the scan and re-scheduled it for the next day. The next morning another MRI was attempted. Emma tried so hard to do it but again it had to be aborted after five minutes. Emma unbelievably managed to do a CT Scan the same day which was less noisy and a lot quicker for her, but it was still a big thing for her to do after experiencing the MRI scanners. 

That night after all the scans were done, we were asked to meet the doctor. A nurse led us to a side room and we remember watching the nurse take a big gulp as she led us there. The doctor was standing looking at a computer screen with Emma’s scans, he asked us to stand and look at the screen, he was flicking though the images and explaining that the CT Scan had picked up a mass in Emma’s head and that it was behind her eye and had spread slightly into her brain. He explained that they were unsure of where it had a originated from. He gave us an inkling that this could be cancerous and we would need to be transferred to QMC Nottingham for further investigations and care. 

In one second, one sentence, our lives had been turned upside down, that night was the longest night of our lives trying to process what had just been said. We had a feeling it could be cancerous but we still hoped it was something less sinister. 

We got transferred to QMC by ambulance on the 31st August 2019.   The ambulance crew took us to E39 and as we were walking along the corridor all the signs were directing us to the cancer ward, the realisation that our fears were being confirmed were happening with every footstep. The first night on the ward was very overwhelming but we kept smiling for Emma.

On the ward I took myself to the parents kitchen and tried to make a cup of tea, I met another mum in their and she was so kind and made me feel so welcome and gave me some lovely words of encouragement. I made my way back to Lee and Emma and I felt a bit calmer. Lee and I knew instantly that we were in the right place and we were going to get the help needed for Emma.

The next morning the continued support from the ward and families came pouring in, it was quite overwhelming but it was giving us strength more and more everyday.

During the following week Emma had more investigations. They tried to sedate her, to keep her calm so that she would lie still for another CT scan, but this did not work, she was wide awake and distressed. On the way back to the ward, Emma was lying on her bed trying to text her brother on my phone, the nurse said “In all my years nursing, I've never seen a child trying to text whilst they were supposed to be sedated!”

Emma had an MRI scan and CT scan the next day with the help of a general anaesthetic, (the sleep doctor). They also performed a biopsy on her mass, under general anaesthetic and then another trip to theatre to have a central line put in (Hickman Line), a lumber puncture and a bone marrow sample were taken.

By the end of the week after three general anaesthetics and needing to be nil by mouth for these procedures, Emma had neither much opportunity to eat nor the appetite for food, Emma was quite run down.

Emma got diagnosed on the 6th September with Rhabdomyosarcoma RMS, which has meant a tumour has been growing on Emma’s cheek and has spread. Hearing the news that Emma may have cancer and then having it confirmed was heart breaking.

Emma started her chemotherapy on the 7th September and she was responding well, but unfortunately on the 3rd day Emma had a seizure, which meant she had to spend the night in Paediatric Intensive Care Unit, Emma’s electrolytes suddenly dropped during her treatment and these had to be monitored and increased safely.

We came home on the 14th September for a couple of days, but ended back at QMC A&E on the 17th September, because Emma had a raised temperature. We spent three more nights in hospital and during this time Emma had antibiotics for 48hrs incase she had an infection, she also had a blood transfusion due to her blood platelets being low and another chemo treatment on the Friday, this completed the first of, three rounds of Chemotherapy that have been scheduled where Emma will then be reviewed.

Since coming home on the 20th September, we've had an eventful time experiencing Emma’s hair falling out. We were surprised how quickly this happened, Emma found this incredibly hard and insists on wearing her BoldBeanie.

Emma has had a good couple of days at home, full of energy, happy and starting to get her appetite back!

We are now preparing for a second, three week round of  chemotherapy on Friday.

A lot of people keep asking what they can do to help Emma and ourselves, we thought that by setting up a just giving page to support Nottingham Children’s Big Appeal, that this will ultimately help Emma and other poorly children in the long term.

Thank you everyone for your support in this difficult time, and I will continue to update you on Emma’s journey on here, as she is loved by so many, but I also hope it helps to raise awareness of the signs and symptoms of childhood cancer. 

The Charity are currently raising funds for a new state-of-the-art intra-operative MRI (IMRI) Scanner, and for the amazing wards that care for these brave young children.

The iMRI machine will be a huge benefit to children who have been diagnosed with a brain tumour. Currently, children often have to endure multiple brain surgeries to remove parts of a tumour. The iMRI machine will allow surgeons to scan their patients during surgery, enabling them to remove as much of the tumour as possible at once. By operating in this way, surgeons will have the best possible chance of curing their patient in the first operation. Families will also avoid an agonising wait between operations, and children will need to undergo fewer courses of general anaesthetic.

Please share with friends and family to try and raise as much as possible for this great cause. 

Love Lesley, Lee, Oliver and Emma x