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  • georgesdragons

Back in July I wrote a blog about the difficulties of fundraising. Since then we have hosted our first Quiz Night and Julie and I have run our first half marathon. Both were events with highs and lows and personal struggles but we have come through them with more money raised for this amazing charity, and with smiles on our faces (well a sort of smile/grimace!)

The Ashtead Quiz Night was a huge success raising £2,500 for Shooting Star. We have so many people to thank including Andy, the fabulous Quizmaster, my wonderful sister in law, Katy, who wrapped prizes and kept me calm in the week before, everyone who donated raffle/auction prizes, everyone who came along and of course my amazing Mum for organising the event - Thanks so much Nanny Dragon! We had great fun on the night, the fish 'n' chips were excellent and we left the hall shattered but delighted with how the evening had gone.

Posing in front of the castle

A week later Mum, Jacqui, Julie and I headed off to Disneyland Paris (yay!) for another run challenge - 15k for Mum and Jacqui and 36k for Julie and me (5k Friday evening, 10k Saturday morning and 21k on Sunday morning!) I was in one of my favourite places in the world, the atmosphere was electric and thankfully Jacqui had her medical kit. Mum's ingrown toenail meant she walked in a pair of sandals and by the end of the weekend was barely walking. But the disaster of the weekend was Julie falling at the 8k mark of the 10k. Bravely she struggled round Disneyland on the Saturday going to First Aid finally on the Saturday evening with them showing just a little concern for her plans for the next day. Yes - she did still run the half marathon in excruciating pain and that evening we discovered on a trip to A&E that she had "strangled" her ankle and was wheelchair and crutches bound for the rest of the trip! I am so proud of her and she truly deserves the Disney bling. We all had a fantastic time and most of us plan to return again - think Julie needs to recover from a lot of trauma first!

Back home and a little achey and then on Wednesday a call from Shooting Star. Julie and I have been given Gold Bond places for the London Marathon. So we are officially training for that. Unfortunately I will be running Royal Parks on my own in a few weeks time but after that we will be back out training in the cold winter mornings. We also have our Car Treasure Hunt on 6th October and Weybridge Quiz Night on 9th November!! It's going to be a busy time...

So is running or fundraising easier? The jury is definitely still out on that one!!

All I do know is that I couldn't do it alone. Thank you all xx

  • mummydragon

Summer is here, and for George the break is made more fun with Shooting Star events including an incredible residential trip at Woodlarks, and the annual Shooting Star Festival of Music, an opportunity for him to sing, make music and enjoy the company of other budding musicians. For me... I'm trying to keep up with the training runs (never easy in the holidays with George needing full time care), organise activities for George, and being a taxi service for Mia!

However, this message is a plea... And a thank you to all you wonderful people who have supported us so far through sponsorship, coming along to events, listening to me moaning, and even helping to organise events and get much needed raffle prizes etc. You are all amazing!!! And well done to every single fundraiser out there. I had no idea how difficult it is.

But, yes, we have another ask... We want a full-house at our two Quiz Nights and lots of cars competing in the treasure hunt. This morning Julie and I run our third race in three months, I am asking you to spend 5 minutes on the site booking tickets to an event or sponsoring us for this fantastic charity. We would actually rather you book tickets as this year is about seeing you and enjoying time together... Please contact us if you have any trouble using the site or want to pay cash for an event.

The Ashtead and Weybridge Quiz Nights promise to be fun events (definitely not too serious!) with professional quiz comperes giving up their time to be there, along with fish suppers, and fabulous raffle prizes - we've been very busy and local businesses have been very generous!!

A great friend offered to organise the Scatter Style Car Treasure Hunt, having enjoyed them when she was young, and is currently spending hours travelling round the beautiful Surrey countryside, plotting clues and organising an afternoon tea for us all to enjoy afterwards, as well as more raffle prizes of course!

Enjoy the summer everyone and hopefully we will get to see many of you at one of our three Autumn events!!

  • mummydragon

As the warm weather is now upon us I take a look back at this time last year. George should have been taking GCSEs but instead we were gearing up for an operation that we hoped would change his life. People who know us well will know that we associate good weather with hospital stays and last year was no exception!

After years of waiting, several tests, and trying dozens of different medications, we finally met with the surgical team at GOSH last February. At this appointment we were told that George was a candidate for invasive monitoring - a stereo EEG, to see if they could find a focal area for the seizures. The theory being that if you can point at it, you can remove it... This was our biggest hope and whilst there were obviously risks attached we had agreed to it before we even left London that day. There was a nine-month waiting list so we tried to put it out of our minds whilst planning for some time out in September/October!

Then in April we received a call inviting George for surgery in June and this became real. There was lots to organise - childcare, time off work etc, and family and friends were called upon. After more tests and GOSH visits, George and I headed up to Great Ormond Street Hospital for what would be our longest stay yet. We were taken through the procedure by the surgeon, swabs and bloods were taken and George and I signed numerous consent forms and taken through the risks (stroke, paralysis and death to name a few) - but this was something that we all wanted and hoped would deliver a positive outcome for George.

Operation Time

On a sunny Friday morning Phil, George and I headed to the ward for George to have his first general anaesthetic. The doctors were calming, and George was talking about Legoland as he fell asleep. The operation took about four hours: 13-15 tiny holes were drilled through the skull, then electrodes were both implanted directly on the surface of the brain and (scarily) deep inside the brain towards the areas that previous tests had indicated as focal points for the seizures. Each electrode was carefully fitted to avoid any important areas like vision, memory and speech. Immediately after the op, a CT scan confirmed that the electrodes had been seated correctly.

George was left with a bad headache but generally recovered well from surgery. It was then we realised how aggressive the week was going to be. Unfortunately to understand what triggers a seizure, and monitor what happens when a seizure starts, a number of seizures had to be induced. Medications were reduced, and by morning George had his first tonic clonic of the stay and within hours he had his second. By Monday evening they had the information they needed and thankfully his medications were increased again to stabilise him.

The next testing was incredible - and would have been really interesting if not my own child. By hooking all of the electrodes up to another machine we were able to see how parts of his brain work, induce more seizures, give him funny sensations, smells, and even alter his vision. Wow!

Devastating news

Unfortunately after a week of testing we were given the devastating news that instead of a clean focal area that could be operated on, there were multiple focal points to the epilepsy, each too spread out and too deep within the brain. Trying to remove the damaged areas could leave George with significant deficits, paralysis and possible loss of function, and despite this, might not even leave him seizure free.

At this point we were reminded just how forward thinking GOSH is though as we were offered a new technique known as thermocoagulation. The electrodes that were previously used to monitor the brain, would now be used to zap specific parts of the brain to try and damage the multiple seizure focal points. This was a brand-new technique and there were only a few machines in Europe, with the closest available machine in Lyon, France. More risks were explained and this was not quite as quick a decision for us. After lots of reading we made the difficult decision to give it a go - even though the machine would take 3-4 days to arrive lengthening our stay over a weekend and into the following week. All I can say is thank you so so much to our friends and family who visited, called and messaged that weekend and kept us sane. We were all at a difficult time in our lives, trying to accept what couldn't be done and very nervous about what would be tried next.

The procedure itself only took minutes and literally made a zapping noise inside George's head... somehow he managed to stay calm during the procedure - who knows how! However, the team were not able to coagulate all of the areas they had identified; some were too far from the electrodes; some were too close to functional areas of the brain; and some focal areas had not been identified on the earlier scans so were not accessible. Therefore they were not confident that the procedure would be successful. Ultimately, we do believe there was a decrease in tonic clonic seizures over the summer, but as anticipated the effects of the thermocoagulation wore off over about six months, and 'normal seizure activity resumed'. We are still glad we tried both operations even if we now have to rule-out a surgical fix in the next few years at least. We would not want to go through those weeks again but at least we know we have tried everything available so far.

A BIG Thank You to the Shooting Star Children's Hospice Nurses

During these two weeks the nurses from Shooting Star Children's Hospices visited George and spent a few hours playing games allowing us to head outside for fresh air and food. He also stayed at the Hospice after the operations and had home visits. We are so grateful for what they did and how they made George giggle during a horrible time. We were lucky enough to receive hospital entertainment and lots of friends and family who made the weeks a little easier. Every visit, text, email, message and card meant the world. This is just one of many reasons we want to thank the hospice and their staff for all their varied support. Please do support through our events or fundraising if you can!

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