This is Gracie’s story as told by her mum, Katie.
“On 14th January 2014 Gracie woke up having a seizure down her left side, we were rushed to RMCH and found out later that day there was a large tumour in the right frontal lobe of her brain. She was just 2.5 years old. She had not really had any other symptoms but she had become very poorly the week leading up to this, high temperatures, very lethargic and really just not herself at all, a visit to the GP had put it down to something viral. She had also had a really terrible cough on and off for a few weeks and had been sick a few times but only ever in the car which we had put down to travel sickness, we had no idea there was a much more sinister reason for these symptoms.
Gracie had surgery two days later to remove the tumour and a few days after it was diagnosed at an Atypical Teratoid Rhabdoid Tumour (AT/RT) a very rare and aggressive type of brain tumour typically seen in children under 3, we were told survival rates were around 10%. The surgery was successful and there was no spread to anywhere else in her brain and spine so we started treatment from the best possible place. The next 6 months involved an intensive chemotherapy protocol along with 6 weeks focal radiotherapy to where the tumour was (she had to have a general anaesthetic every day for this!!!), Gracie rang the bell on 3rd July 2014, cancer free and doing amazingly.
We had 15 wonderful months before a routine MRI scan in October 2015 revealed new tumours in both her brain and spine, utter devastation yet again. There is no standard treatment for relapsed AT/RT and no cure, so it became about prolonging her time with us and giving her the best possible quality of life we could. She started an experimental drug which was very successful at first, she carried on at school pretty much full time, we had some amazing holidays including her wish trip to Disneyland Paris and we tried to make the most of every day with her. Towards the end of 2016 her symptoms worsened again and she had more radiotherapy in the hope this would stop the tumours long enough for her to start on a clinical trial, it did and we were really hopeful at the beginning of 2017 when she started the trial but it did not last long. A line infection and pneumonia meant we had to stop the drug which gave the tumours chance to progress again. We had just restarted the trial when she had a massive seizure at home and was rushed to hospital again, she was ventilated and sedated but she never came round.
Gracie passed away with mum & dad at Francis House Hospice in Manchester on 16th March 2017 at 5.5 years old. Gracie is missed unbelievably each and every day, throughout her short time here she made an impression on so many and despite everything she always stayed the same bright, funny, chatty, intelligent child, she was so brave and strong always.
Atypical Teratoid /Rhabdoid Tumours are a very rare type of brain and spinal tumour, forming only about 1 to 2% of brain tumour diagnoses in children. This means for every 100 brain tumours that are diagnosed in children, only one or two of them would be AT/RT.
AT/RT typically grows very fast meaning children with these tumours may develop symptoms quickly over weeks or even days. AT/RT is usually found in infants and young children under 3 years of age, but can occur in older children and occasionally adults as well.”