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As some of you know this year has been a roller coaster ride for our little family.

At the beginning of the year we noticed that Riley was drinking a lot.  He was starting to wake during the night for a wee and was drinking a whole bottle of water at 3am!  This got more frequent and through the night and he was also constantly complaining he was thirsty all the time during the day.

I mentioned it to our GP at the school gate one Friday afternoon in January.  She is our friend, so I thought nothing of asking her if I should bring him in.  I thought maybe he had developed Diabetes, but I didn't want to be a paranoid Mum and waste her time.

She told me to take him into the surgery to have bloods taken on Monday, she thought we should crack on with it quickly so we could sort him out.

On the Monday he had his first lot of blood tests.  She called me when the results came through and said she wanted refer Riley to an emergency paediatric appointment as she was concerned it was still happening, but the bloods didn't show anything for diabetes.

We went for the appointment, but the consultant was unhappy and wanted Riley to go for an urgent MRI brain scan as he said there could be a problem with his pituitary gland and that he may have to go to Great Ormand Street to have some tests done, depending on the results.

He had his scan the following week on Monday.

11am Wednesday morning and I got a phone call from the consultant while I was at work, telling me to leave immediately, collect Riley from school and go to Addenbrookes where an Oncologist was waiting for us.  I knew what an Oncologist was. I was terrified.  Just typing this brings it all back...

When we arrived there were 5 people waiting to see us.  Riley was admitted straight away.  They were very concerned that he was drinking so much and had to get it under control.  He was drinking around 9L in 24 hours.  He was at high risk of drowning himself.

To cut a long story short Riley was diagnosed with a brain tumour on the Friday.  It is sitting on his pituitary fossa, which is where your hormones are released from.  It is also sitting on his optic nerve.  It's not big.  He is at high risk of losing his sight, being growth stunted, not going through puberty (including infertility)and being paralysed.  Paralysis is lower on the list, but everything hormone related and sight related are at the top.

They cannot take a biopsy without putting him at higher risk.

The risk of operating to remove it is higher than the risk of leaving it there, so for now, we will live with it and it is part of his life.

He can live a normal life of an 8 year old, he just has medication to control his drinking.  The drinking was caused by Diabetes Insipidous, which has nothing to do with normal diabetes, it is a symptom of your diarrhetic hormone malfunctioning.  His no longer works at all. 

We keep a close eye on him as do the amazing team at Addenbrookes. 

 I cannot thank them and Dr Harland (our amazing friend) and Dr Deverajan at Colchester General enough.  They saved Riley and without their quick work things could have been very different for us.   

Riley now goes back every 3 months for MRI brain scans, which he hates because he hates having a cannula fitted.  He screams every time.  It breaks our hearts every time, but I would rather screaming and unhappy than something worse.  We then have an appointment with his Oncologist, who watches very closely what is happening with his tumour, together with the neurologist, ophthalmologist, endocrinologist and Brainbow team.  He has a whole team watching him!!

The Brain Tumour Trust have been the only charity to give us any support.  Because Riley was never diagnosed with a malignant tumour, because they can't do a biopsy, no other charity would help us.  No one would give us any support or advice to help us learn to live with it.  They call and check on us and send goodies to Riley and generally work really hard to look after anyone affected by brain tumours, malignant or benign or undiagnosed like Riley's.  They're 90% sure its benign, but there is that little 10% where they can't be sure without a biopsy.

So please help me help them.

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