Aubrey's Story

Aubrey was an emergency diagnosis in January 2021 when fluid from the tumour in her chest started to fill into her lungs causing her severe breathing difficulties, we were in paediatric intensive care for nearly 2 weeks.

Throughout this time we were delivered the devastating news Aubrey had a cancerous tumour wrapped around the hearts main artery the aorta. At this moment in time they did not know what cancer it was and it took 3 months worth of investigations to come to the conclusion it was Rhabdomyosarcoma -.

Locally Metastatic thoracic embryonal Rhabdomyosarcoma (ERMS) Because of where the tumour is consultants have explained the tumour cannot be removed, so therefore there is no cure.

Once Aubrey was out of PICU she was straight onto treatment which was 9 rounds of intense chemotherapy one after another. Radiotherapy has always been in discussions but there has always been a huge risk to this as the tumour is so close to the heart radiotherapy could potentially cause Aubrey severe heart failure.

Chemotherapy did shrink the mass but of course we are still stuck with the heartbreaking reality that it can’t be removed. The tumour is currently stable and has been since treatment ended which we feel is a tremendous blessing, we have to live life each day and face whatever comes our way.

After the 9 rounds of chemo Aubrey then went onto 2 years worth of maintenance chemotherapy, I believe Aubrey was one of the youngest in the country to be going on the 2 year maintenance trial but this made absolute sense as this was one of the very little options we were left with.

She completed maintenance and rang the bell on the 16th June this year. Obviously this is bittersweet as we are relieved treatment is over and we can try and get back to some normality but very difficult as we know the tumour is still there.

Aubrey was last admitted a few weeks ago to Addenbrooke’s with a nasty Ecoli infection in her Hickman line which made her very unwell and we were in hospital for about 2 weeks with heavy doses of antibiotics, throughout this time there was a scare on Aubrey’s last CT scan that the cancer had spread to her liver which as you can imagine was absolute hell but it turned out not to be cancer but hyperplasia in her liver, we do believe someone is watching over Aubrey and protecting her.

Currently Aubrey is doing well and we try our best to live life to the full and not think too much into the future.

Thank you 💕