The story hasn't change and it never will

This might be a little long and more than a little emotional so here goes....

We have been putting up our Christmas light display for more years than i can really remember, it started out with a couple of lights in the window, then it was lights in the window and a couple of inflatables and lights in the front garden and now the window is slightly out of the picture (though I may bring it back) (spoiler – I haven't brought it back... yet) but the inflatables and lights in the front garden have grown so much that we now also take over the next door neighbour's front garden as well. There is now so many decorations that it takes about 4-5 days to put it all together, it would probably be quicker if we had help but it is always just me and dad (with mum supervising from the living room window.) 

Most of you will know why we put the lights up but for those of you that don't I am going to let you know and also how it connects to Brain Tumour Research, when we started this tradition Sara was still with us but it took on a lot more significance when she passed away.

In 2002 when she was 24 Sara went to the optician to get her eyes tested, the optician noticed that there was something wrong with her right eye and Sara was referred to Ninewells hospital for an investigative MRI scan. After the scan was analysed she was diagnosed with an HNPGL which is a Head and Neck Paraganglioma, a rare and slow growing tumour which had actually been there since birth but had taken until then to show any symptoms. Sara had a 12 hour operation to remove the tumour which was attached to her Jugular vein, which was also removed along with the inner part of her ear leaving her deaf on that side. A few hours after the operation she developed a very serious infection (I can still remember the smell of the gunk that came out of her ear to this day) and was moved to the High Dependency Unit where she was treated with antibiotics and thankfully she recovered from the infection. After this Sara had follow up checks and scans yearly and in 2005 it was found that the tumour had grown back, again there was an operation to remove it and this time it was followed up with a course of Radiotherapy (I was personally disappointed that Sara didn't glow in the dark.) Sara was then on 6 monthly checks and scans and everything appeared to be stable, then in 2009 she required a dental extraction which was to be performed under general anaesthetic and at her pre-anaesthetic assessment she was found to be hypoxic with oxygen saturation of 84% on air so she was sent for a chest x-ray which showed opacities scattered throughout both lungs. Follow up scans showed that Sara had multiple pulmonary metastases and malignant mediastinal lymphadenopathy (I don't know what that one is either) an MRI scan also showed that the original tumour had invaded the C5 vertebra and unfortunately there was no further treatment available for Sara's condition. It is very rare for HNPGLs to become malignant and spread somewhere between 4-6%, Sara's case was so rare that the doctors that were treating her actually wrote a case study about it and had Sara speak when they presented it at Ninewells (we actually have a copy of it and that is where I got all the big medical words.) During this time it was found that Sara's original tumour had been caused by a mutation to P81L of the SDHD gene because it was thought to be genetic the rest of the immediate family were tested and it was found that the mutation was hereditary and that it had come from Dad (mum and I don't have the faulty gene.) Dad now had to get tests and scans and it was found that he has 2 tumours in his neck one on the left side and one on the right and both are sitting in the branch of the carotid artery which means they cannot be removed and one on his Adrenal Gland, like Sara he had a course of radiotherapy and they did shrink but they are still there today and he still has follow up tests and scans. After all this life got as back to normal as it could, we still went places and had holidays and Christmas was a special time. Sara had to use a wheelchair latterly as she was no longer able to walk very far (it was always fun when pushing her on a hill to threaten to let go.) Over the next few years Sara's health deteriorated to the stage where she needed to be on oxygen 24 hours a day, even with this she never complained about her illness and still managed to keep her sense of humour but then in April 2013 at the age of 35 she sadly passed away at home.

I only knew Sara for 31 years as she was 4 years older than me (I was taller though as I pointed out to her on many many occasions) but she will always be my sister as well as Mum and Dad's daughter and as long as we remember her she is always with us. 

So that is why we put up the Christmas lights in memory of Sara and it turns what could be a sad time into a happier time. The lights make me smile and if they make just one other person smile then it is worth all the effort and the cold and the aches and pains from putting them up.

Brain tumours kill more children and adults under the age of 40 than any other cancer… yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

If you have read this far, please, if you can donate whatever you can to Brain Tumour Research.

Thank You!