Ellie Simms

Ellie was diagnosed with high-risk abdominal embryonal rhabdomyosarcoma in May 2021, aged one. Ellie had 16 months of treatment including IVADO chemotherapy and regorafenib on the FaR-RMS trial. However, these treatments had limited results and she sadly passed away on the 4th December 2022, aged three and a half.

Ellie's Story...

In May 2021, Ellie was unwell and after speaking with the local surgery (not directly with the doctor) they said her symptoms were due to constipation and gave her a prescription. After a couple of days, she still wasn’t better and we decided to take her to Bassetlaw Hospital. After having blood tests, scans and being seen by a paediatrician, she was sent to Sheffield Children’s hospital via an ambulance. They did an ultrasound, more blood tests and an MRI which confirmed Ellie had a tumour in her abdomen. She had a biopsy, along with the insertion of a nephrostomy tube, central port line and an NG tube. A week later we were sent to Leeds hospital for a PET & CT scan and the following day it was confirmed that Ellie’s tumour was Rhabdomyosarcoma.
Ellie had 9 rounds of intensive chemotherapy, which started the same day as we heard the word Rhabdomyosarcoma. Unfortunately, the first 2 rounds didn’t have good results and they added another drug to the treatment, Doxorubicin, which came with severe side effects. This was a bitter sweet moment as it massively reduced the tumour but due to the problems it caused she was only allowed a certain amount of it. She went on to have 28 sessions of radiotherapy and numerous blood tests, MRI scans, UT scans, CT scans, and kidney function tests.
The treatment was shrinking the tumour but the next phase of maintenance chemotherapy didn’t have any impact. This led to another biopsy, bone marrow biopsy, blood tests and CT Scan. As a result, Ellie went on the FaR-RMS trial and received the drug, regorafenib.  This had limited results and came with very poor side effects making her so unwell that the treatment had to be stopped. Unfortunately there weren’t any further treatment options and she sadly lost her fight on 4th December 2022.

What was your journey with cancer like?

Ellie always had a smile on her face and her wellies on her feet and allowed her cheeky personality to shine through even the toughest times and we, as her parents, could not be more proud of her.

What changes would you like to see for children diagnosed in the future?

We have decided to create Ellie’s Arc to hopefully help achieve more positive, and less harmful, treatments for Rhabdomyosarcoma

We would like to see changes with regards to the range of treatments offered and less harmful treatments; one of the drugs Ellie had meant she would have been on heart medication later in life. She would have required regular checks on her kidneys and heart muscles. Personalised treatments that target the tumour without causing problems elsewhere would be the ideal result. Also, improved training for GP’s to enable more simple and faster identification of cancer in children.

 

News

Read all the latest fundraising news, charity news and commentary on childhood cancer.

First RMS research grant made in the USA in collaboration with St. Baldricks EPICC team.
Read all about what happened from 1st October 2022 to 30th September 2023 in our Annual Report.
Family Research Day at the Sanger Institute
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Our Mission

We have already raised £4,500,000 and now aim to reach £10,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £4,500,000