Dean and Lydia's Great Wall of China adventure.....                                Dean and I have signed up for a Great Wall of China trek in September this year, to raise funds for Paul Sartori in memory of Dad.                                                                                                                                      The trek is around 70km of the wall, starting from Huangyaguan, and ending in Beijing. Even though this is an organised event and you can fundraise to pay for the trek, Dean and I are funding our own trip but would love to be able to raise the same amount as it would cost anyway- and we have a target of £4k :) We will be arranging a number of different events to help us reach this target, so please look out for them and come along if you can.                                                                            Paul Sartori offer such an amazing service to families who so badly want to do the best for their loved ones in their final days. Paul Sartori needs an average of £2,500 a day to run it's service, and these charitable events and donations are vital for these funds.                       The reason we have decided to take part in this fundraiser is because when Dad became terminally ill from a brain tumour in 2011, and we were told that there was nothing else the doctors could do, Paul Sartori allowed us to bring Dad home to spend his final days in the place that he knew best. He was surrounded by his loving family and in he was in the comfort of his own home. They provided everything we needed to make Dad comfortable- a hospital bed, help with overnight care, nursing care and the nurses were brilliant,

Here's dads story.... apologies for the long story, but I wanted to do it justice. The story spans over almost 2 years, which began when Dad was 53 and ended when he was 54 years of age...

My dad…. Our hero….. a fit, healthy young man.                                        53 years of age, he had no illnesses, no health scares or any health problems throughout his life. He was a painter by trade, and worked hard his whole life. He had lots of hobbies and he was a keen biker- he loved his motorbike.
He was a devoted family man, and as a family we did everything together. 

How his illness started….
The first sign (not knowing it was a sign at the time) was when dad was asleep he would hold his breath for a few minutes, and then all of a sudden he would let out a huge gasp. The length of time he was holding his breath for startedincreasing. Mum and dad went to the GP and he referred dad to the sleep clinic. They diagnosed him with a mild dose of Sleep Apnoea caused by slight weight gain around dads chin. There was no need for medication needed, they just suggested that he lost a bit of weight in this area. So this is what he did.                                                   The next thing was one day when dad was doing some painting on his knees in our house, he stood up and he immediately felt dizzy- the feeling when you get up too quick. Normally that feeling passes after a couple of seconds, but it didn’t. This went on for a few days so dad made an appointment with the GP, who diagnosed him with Vertigo. He was given tablets, and dad carried on as normal, still went to work.      Next was when dad started to fall asleep quite a lot. He was becoming quite tired and would quite often have a short nap at any time of the day. Then whenever he sat down to have his lunch at work or on his breaks, he would have a little snooze- very unusual for my dad as he was always always so active. When he came home from work he would have 2 or 3 naps before he went to bed. We didn’t think much of it at the time, because he was very busy at work and was getting up very early in the morning and coming home late.                                                           Dad continued to see the GP for the vertigo over a couple of months, regularly updating the GP with any changes in the symptoms but he would just say it was all because of the vertigo.                                          As time went on it was obvious that it wasn’t just vertigo, and there were big changes in symptoms- his eyesight became blurry, he couldn’t focus properly, he started to feel wobbly when he walked. By this time, the GP described possible diagnoses of MS, Sarcoid, TB and even that he had had a series of mini strokes, so eventually sent him for MRI scans.                                                                                                                  As the symptoms were becoming worse, mum and dad discussed with the GP whether or not this could be a brain tumour, as dad had lost his sister to a brain tumour 5 years before, and some symptoms were very similar. The GP said that it was highly unlikely and he was sure the MRI would show that it wasn’t.                                                                              His eyesight became quite bad, and his eyeballs started to shake which was very noticeable. Dad started to see the optician quite regularly who had said that he had never seen anything like this before. Even though his actual eyesight was ok- his eyes couldn’t focus because they were visibly shaking. The optician made him specific glasses which he said would solve the problems but after a couple of weeks it was clear the glasses weren’t making any difference. The optician would adapt them, change the lenses- nothing seemed to make a difference but as the optician was the only one who seemed to be helping dad at the time, dad was adamant that he wanted to carry on seeing them.                                                                                                                   Dad was referred to Morriston hospital to have more MRI scans and tests to identify if he had had a stroke, waiting 8 weeks for the appointment, and several more weeks for the actual results- little did we know but this was vital time.  When we eventually had the results, the scan showed a shadow on the top of dads brain which highlighted pressure or something similar. It was at this point we were told that the scan didn’t show a mass and it was not a Brain Tumour. As you can imagine this was like lifting a million ton truck off your shoulders that we’d been carrying for a long time. But then it caused a feeling of anxiety as we needed to know what was causing all of this.                                                                                                              Dads walking was becoming very difficult for him and he was regularly falling over. At first they were slight stumbles where he would manage to regain his balance, but these falls started to become worse and he would often fall to the floor and  hurt himself and was awful to see. Dad was frustrated as he couldn’t control it, and we couldn’t always prevent him from falling. We never left him alone at this point, and Dad could no longer do the things we all take for granted, making a cup of tea or carrying his cup for example.  Over the next few months dad carried on having  MRI scans every 6 weeks- 2months to see if anything was changing. Often, we would have to wait up to 2-3 months just for the results, which was valuable time for something like this. Each MRI scan was showing no change, the shadow was still there, it wasn’t growing, moving or changing shade, it was just there in the same place every time.                                                                                                                     He spent another spell in hospital on 2 occasions for a month to 6 weeks at a time, under the senior neurologist so that they could monitor his symptoms and carry out a number of tests including lumber punctures, blood tests, ct scans, balance tests, co-ordination tests and more MRI scans. The MRI’s continued to show the same results, all other tests were completely clear and as far as the doctors were concerned they couldn’t see what was causing all of this. They did suggest mini strokes once again, or early signs of dementia or a degenerative wasting disease but each time we didn’t accept any of them as we felt we were just being told anything.                            Dad was no longer able to walk unaided. He had a frame to help him walk, but eventually he started to fall over the frame as he didn’t have the co-ordination to use it properly. He would hallucinate and often thought he was somewhere else.                                                                Just to give you an idea of how quick the symptoms were developing, over a 3 months period where Dad had the first spell in Morriston hospital for tests he walked into the hospital linking arms with my mum. The second time around 6 weeks later, he was walking with a stick. The 3rd time, another 6 weeks later he came out in a wheelchair. After all these tests, the senior neurologist called us in and told us that the tests weren’t showing up anything and he didn’t feel there was anymore he could do and that we would just have to see what happens. We’d tried numerous times to seek private medical services but each doctor at the private surgeries were the same doctors we’d already seen- which was very frustrating. Obviously we were disgusted with the doctors response, and refused to accept that nothing was going to be done with dad changing so rapidly and no diagnosis that made sense after all this time. Mum and I basically begged for the neurologist to refer us onto another doctor, and told him that we weren’t accepting what he was saying as nothing was conclusive.                                                             After several discussions and again several weeks later, the doctor finally made a referral for dad to the National Neurology and Neurosurgery hospital in London, as he trained there and still had contacts there. We finally thought we were getting somewherewe, however it was another 10 weeks until dad actually got admitted and he had been like this now for the best part of 18 months.                              By now his condition was very difficult. He couldn’t walk, he was sleeping for almost 20 hours a day, sometimes he wouldn’t know where he was and would hallucinate very often.                                                   When we eventually got to London, we met the professor on the second day of being there and he did a few simple tests on dad- co ordination tests, speech tests, walking tests and he also looked inside his mouth. Within 2 minutes he identified that there was a tumour somewhere in dad’s body. He picked this up from a visible pulse in the roof of Dads mouth, which suggested a blockage somewhere, he wasn’t sure where but promised he would find it.                                              Within a week we were all called in and it was then that million ton truck came crashing down on us all. They’d found a Brain Tumour, and they needed to do a biopsy. The tumour was situated on Dads brain stem, buried deep inside his brain, and the operation was life threatening. Mum had to try and have the conversation with dad during the few times that he was awake, and the little time where he was actually Dad. He actually said he needed to know what was happening so agreed.                                                                                                               The biopsy took hours, and he spent a couple of days in special care. The biopsy was clear, this wasn't cancer at this stage so no treatment could be offered. The tumour was growing as what we could describe as a sprouting potato, it was growing  with 'sprouts', each sprout growing onto brain stems, each time closing down a different function of the brain.                                                                                                       Dad was sent back to Singleton hospital, onto a main ward which was totally unsuitable for Dads needs, and we just knew we needed to get him home. It was then that Paul Sartori stepped in. The following day Sophie came to the house to assess what dad would need and a package was put in place the following day.                                              Dad was brought home, and he was a different person straight away- he knew he was home, he was more relaxed and we were able to make sure he had regular food and fluids during the few times a day he was awake. On the 1st July 2011, Dad passed away peacefully in his sleep in his own bed, in his own home - in the place he loved best.                             The last few months were made so much more comfortable for dad, and for mum, and for us as their children, and that was all thanks to Paul Sartori helping to bring Dad home with their support. Without them the end of our story would have been very different. There are so many families in Pembrokeshire and surrounding counties that have similar stories, and you don't realise how much of a lifeline Paul Sartori are until you really need their help.                                                                               

So on that note.... here's to raising awareness of Brain Tumours, supporting Paul Sartori, and looking ahead to that amazing trip of a lifetime climbing some of the Great Wall of China in memory of Dad :)