Please would you be kind enough to provide a proper Palace welcome to Jack on Saturday. Jack is the 10 year old son of one of my friends and I outline his story below. One thing I must say is CPFC have been absolutely brilliant in organising his day.
Jack was born with autism and Type 1 diabetes and is self taught by his Mum at home.
In September 2016 Jack was diagnosed with a rare pineal tumour in his brain and underwent major surgery the following day. He underwent further surgery in October 2016 to debulk the tumour. Unfortunately Jack had a bleed on his brain during surgery and then spent a further 10 days in intensive care and the high dependency unit at Kings College Hospital. Once Jack settled down after six and a half weeks he was then transferred to The Royal Marsden Hospital for chemotherapy and radiotherapy treatment.
By the time he was referred to The Marsden he had developed posterior fossa syndrome which meant he would have to relearn to do everything from holding his head up, sitting, standing and finally walking and is unable to speak. As Jack couldn’t open his mouth he had more surgery to fit a PEG (which is a feeding tube through his stomach wall) and a potacath.
Jack was an inpatient at The Marsden for 3 weeks undergoing chemotherapy and radiotherapy.His lack of communication skills were extremely frustrating for him and every medical procedure was difficult and a stressful time for the whole family.
Whilst Jack still cannot talk or eat and is PEG fed he is improving slowly every day. He is walking short distances inside at home and is regaining his fine motor skills.
At the beginning of this month Jack went back to The Marsden for a check up and it is with a heavy heart we are sharing this news Jack has another brain tumour in a different part of his brain.
Surgery is not an option, so we have been told that they can manage his symptoms but they are advising us to think about his quality of life over quantity of time.
We are just beyond devastated & feeling completely helpless we’ve been told Jack has months but could have as much as a year. The family are set to make lots more memories with Jack.
Thank you all for taking the time to read...........
Jack was born with autism and Type 1 diabetes and is self taught by his Mum at home.
In September 2016 Jack was diagnosed with a rare pineal tumour in his brain and underwent major surgery the following day. He underwent further surgery in October 2016 to debulk the tumour. Unfortunately Jack had a bleed on his brain during surgery and then spent a further 10 days in intensive care and the high dependency unit at Kings College Hospital. Once Jack settled down after six and a half weeks he was then transferred to The Royal Marsden Hospital for chemotherapy and radiotherapy treatment.
By the time he was referred to The Marsden he had developed posterior fossa syndrome which meant he would have to relearn to do everything from holding his head up, sitting, standing and finally walking and is unable to speak. As Jack couldn’t open his mouth he had more surgery to fit a PEG (which is a feeding tube through his stomach wall) and a potacath.
Jack was an inpatient at The Marsden for 3 weeks undergoing chemotherapy and radiotherapy.His lack of communication skills were extremely frustrating for him and every medical procedure was difficult and a stressful time for the whole family.
Whilst Jack still cannot talk or eat and is PEG fed he is improving slowly every day. He is walking short distances inside at home and is regaining his fine motor skills.
At the beginning of this month Jack went back to The Marsden for a check up and it is with a heavy heart we are sharing this news Jack has another brain tumour in a different part of his brain.
Surgery is not an option, so we have been told that they can manage his symptoms but they are advising us to think about his quality of life over quantity of time.
We are just beyond devastated & feeling completely helpless we’ve been told Jack has months but could have as much as a year. The family are set to make lots more memories with Jack.
Thank you all for taking the time to read...........
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