Georgia and the germ cell tumour

When Georgia arrived at the Emergency Department (ED) in January 2019 she was unable to move her legs. In ED, blood tests showed that her sodium levels were extremely high and she was sent for a CT scan. This scan revealed a tumour – a mass of abnormal cells in the brain – and Georgia was moved to Neurology for a full diagnosis.

Her mum, Becky, said: “Georgia was very ill at this point and they struggled to control her sodium levels and the fluctuations were causing her to be very confused so she was transferred to the High Dependency Unit (HDU). Endocrinology were involved in her care too as the tumour was pressing on her pituitary gland which can cause hormonal issues.”

In February, Georgia had a stereotactic biopsy and the results showed that it was a malignant – or cancerous – type of germ cell tumour called a germinoma, which is very rare and only affects around ten children a year in the UK.

“We had a consultation with Dr Vicki Lee from Oncology who was her lead consultant along with Professor Dimitri from Endocrinology, and she told us that treatment was a course of four doses of chemotherapy followed by radiotherapy for five to six weeks.”

Georgia was also recommended for proton beam therapy due to the position of the tumour and potential damage that could be caused by conventional radiotherapy. Proton beam therapy enables a dose of high energy protons to be precisely targeted at a tumour, reducing the damage to surrounding healthy tissues and vital organs.

“Georgia was extremely unwell during some of the chemotherapy sessions as it involved a lot of fluid being given to her to protect her body from the drugs, and this affected her sodium levels again and she needed one-on-one care on the HDU for two of the sessions. We were very lucky as the staff there were amazing and she was looked after so well by the lovely nurses.”

After the third chemotherapy dose, an MRI scan revealed some good news – Georgia’s tumour had significantly reduced in size. She had also been accepted for proton beam therapy which meant travelling to Essen in Germany.

“I’ll be honest and say that it was extremely overwhelming as we didn’t speak the language but I trusted that her consultants knew what was best for Georgia and it ended up being a very positive experience for us. Everything was arranged by Sheffield Children’s for us from transport and accommodation, to travel to the Proton Centre which took the pressure off. We spent six weeks over there and she received 25 proton beam sessions before travelling home.

“The therapy causes inflammation to the brain so we didn’t have another MRI until a couple of months later and we were able to relax at home over the summer. When she did have the scan last September it showed that the tumour was gone and she was cancer free.”

Since then, Georgia has had scans every three months – soon to be every four months – which have all been clear.

“She has recently started full time in year eight at school and is doing really well. She has been registered as partially sighted as the pressure the tumour put on her optic nerves has caused irreparable damage but she can see well enough to get around day to day.”

Georgia is still under the care of the Late Effects team, including an Oncology and Endocrine consultant, who she sees three or four times a year. This is to check her hormone levels and any long term symptoms caused by the tumour and treatment.

Becky said: “Her prognosis is good but she will be on steroid and hormonal replacement medications for life. She leads a full and normal life though and handles everything thrown at her better than most adults!

“The staff at Sheffield Children’s have been a fantastic support to us and I can’t thank Dr Lee and Prof. Dimitri enough for the care they have shown to Georgia and the treatment she has received. We also have a wonderful Outreach Nurse, Paul Coyle, who is always at the end of the phone with both practical advice and emotional support for our whole family, as well as our CLIC Sargent social worker, Louise Dolphin, who has been a great support to us too.

“We are very blessed to live close to such a fantastic Trust. All the nurses, doctors and workers there have done so much for us and words can’t describe my gratitude to every one of them.”