After having 14 hours of brain surgery at Great Ormond Street Hospital (GOSH) Stanley had to learn how to eat and drink again, as well as swallow his own saliva, making him high risk of aspiration.
He has since had surgery on his spine, six weeks of proton beam therapy, six weeks of craniospinal radiotherapy and many months of chemotherapy. He has relapsed four times since diagnosis and all relapses have been during first line treatment.
We have now been told that he is incurable, that they are running out of options for him, and any treatment offered will be to buy him more time.
There is a trial at Royal Marsden Hospital Sutton, that is focusing on Stanley's specific diagnosis - this is not a cure but the best possible option for him.
He currently has a tumour in his cerebellum which requires another brain surgery to remove it. He will then require chemotherapy (hopefully the trial). The trial does not cover transport or accommodation, so we are currently focusing on fundraising to cover that, as we don't own a car.
Now aged eight, Stanley's diagnosis has left him deaf on the left side, and with weakness on the left side, chronic fatigue and change in balance. He has been unable to keep up with friends, and due to the nature of treatment and its intensity, he has missed a lot of school making him quite isolated from friends.
His voice has never been the same since, while his confidence, self-esteem, mental health and emotional wellbeing have been greatly affected.