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.