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Sophie

Fundraising

One Foot In Front Of The Other

I don’t like running. I like swimming, gymnastics and spent several years wanting to be an Olympic trampolinist (it didn’t end well, a neck brace is not a good look). Running was never my thing. When I left school I rarely did any sport apart from swimming and trips to the gym. It was surprising then when I  talked myself into taking part in the London triathlon 9 years ago and in all honesty I would have been quite happy to dine out on that for the rest of my life.

When we setup The Lexi Mace Brighter Future Fund last year in May I had been sent details of The London Landmark Half Marathon and had applied for the ballot. I had no intention of taking part. I was in a somewhat crazed state of trying to fill a calendar I had created with a fundraising activity for every month. When the email came telling me I’d been unsuccessful in the ballot I moved on to thinking of something else to do. When we visited GOSH a few months later, to talk about how we wanted the money raised in Lexi’s memory to be spent, I foolishly mentioned I’d been unsuccessful. “Don’t worry” I was told, we’ve got a charity place for you. Oh, great.

I managed to quash my concerns, this was a futile worry, or so I thought. I’d have a baby by March surely or be pregnant and have a perfect excuse not to take part in a half marathon. And to be honest after a while I pretty much forgot about it. When Andrew got sicker there was little to no spare time in the weeks for training. I did week 1 of couch to 5k about 5 times. The first time I ran I was nearly sick in a bush and came home and cried I hated it so much. I hated the position I was in. I should have been at home looking after Lexi not raising money in her memory. I let myself wallow in self pity for a while.

I managed to reach week 2 of couch to 5k 3 months later. December proved to be busier than I could have imagined with Andrew’s kidney transplant, the ball and the devastation that followed of the first anniversary of Lexi’s death. I didn’t run the whole of December. I barely walked, I just seemed to sit in hospitals and drive back and forth to London. When January 1st rolled round and I realised I had less than 3 months to be able to run a 1/2 marathon I found myself lacing my trainers again. It didn’t last, I ran the grand total of 5 times in January and totalled less miles than the 13.1 I’d have to run in one day.

The end of January brought its own sadness with another trip to GOSH confirming Annabelle will be an outpatient there for many years to come. February came with more knocks as we received further details of the investigation into Lexi’s death. It has felt like my world has come crashing down all over again and it’s why I have been rather quiet on here.

I had finally though found a reason to get out and run. I found it was actually helping me. My mental health was worsening and every time I made it out to run I could think these things over without distraction. I’d return from running with a clearer mind and something that I hadn’t had since before Lexi died, an appetite! It hasn’t solved my problems but today with just two weeks to go until The London Landmarks Half Marathon I ran 9.3 miles. The furthest I have managed to date and the better news is I felt I could have gone further, so hopefully the 4 extra miles on race day will be fine! I’m not looking to beat any records. I’m not competing against anyone else. Just myself and the self doubt I am plagued with. It hasn’t been easy at all to get to this point, but it seems after the half marathon I might even be seen still going out for the odd run.

As I run I listen to all sort of songs but the lyrics to Sia’s song Flames seem rather apt. Not just for getting through to the end of the run, but on finding a way to keep moving forwards in life …

“One foot in front of the other babe
One breath leads to another yeah
Just keep moving, oh
Look within for the strength today
Listen out for the voice to say
Just keep moving, oh”

Myself and my friend Pavla will be running The London Landmarks Half Marathon on 24th March. If you come to watch give us a great big cheer, I will definitely need it. If you can’t make it and would like to give us a virtual high five you can do so by adding to our fundraising total here: https://www.justgiving.com/fundraising/londonlandmarkshalfmarathon2019

And if running is your thing there is plenty of races to sign up to be part of team Lexi. We will be taking part again this year in Run or Dye at Penshurst and you can find all the details here at GOSH (advertised with some familiar looking faces.) https://www.gosh.org/get-involved/fundraising-events/run-or-dye

Fundraising

Help Helen..

Please take a read. This lovely lady is my friend’s niece. Helen says; “Our last remaining option is to reach far and wide to raise the money. I’m desperate to try and improve my quality of life, extend my life, or even find a cure. I want to be around to see my children grow up, to create memories for them, and to grow old with my amazing husband. So if you can, please make a donation, for me and my family. It would mean the world to us.”

https://www.crowdfunder.co.uk/please-help-save-my-life-my-cancer-s-spreading-fa?utm_source=crowdfunder&utm_medium=dashboardmodel&utm_content=shareonfacebook&utm_campaign=marketing&fbclid=IwAR0nzHs63p7PtdTM7ddnNOnZNzDqgFeKZW1esEkZxKQjqZQgptL6QBXNaNI

Chronic Kidney Disease

Kidney update 24th January 2019

We have got very good at waiting. So good that we know where to find the good seats in the surgical admissions lounge! Back row lazy boys for the win!Andrew is doing really well still. Today he is having a very small operation to remove the catheter that was put in his stomach at the end of November when they were planning for him starting dialysis. They will take that out and the stent that was put in during his kidney transplant op. When he has recovered from this op he will be able to pick the children up again 😊 something they are very excited about! With the dialysis catheter in he has only been able to lift up to 15kgs so been a long few months of no daddy pick ups! Tuesdays blood test showed a good up tick again in his kidney function. Was a relief after 10 days of it plateauing and creatine slightly creeping up again. This was due to his immunosuppressant level not being quite right. After a couple of changes to the tablets he seems to be on the right track again.

Fundraising

Looking to get involved?

Lovely sunny morning running around St James Park with other GOSH runners training for London Landmarks Half Marathon and London Marathon! Brilliant advise from an amazing lady and ultra marathon runner,Annie Foulds, who led our run. Feeling motivated and excited for race day! Fancy joining us? There is still time to sign up to take part in London Landmarks Half Marathon and entry is currently only £10!

pursuitOfHappiness

Happy New Year

A year ago I spent new years eve laying on the bathroom floor, unable to do anything but sob for my baby who had gone. It was one of the lowest points of my life. As I lay there I couldn’t imagine a life where happiness could exist again. To everyone who helped me back up and continued to stand by me and Andrew this year, thank you.To finish the year having raised £15,999.10 (90p short of £16k!!) for Great Ormond Street Hospital and Children’s Charity feels pretty amazing. I feel proud of what we have achieved this year. Thank you to everyone who has been a part of the past year with us.And finishing the year on the high of not only the amount raised but too on even more amazing results today for Andrew.We look forward to making more happy memories with many more events next year.Sophie xx

Chronic Kidney Disease

Kidney Update 27th December

Andrew’s creatine has come down to 249 which is incredible. This is a GFR (measure of kidney function) of 25 – the last time it was that high we think was around May 2017. It puts him out of end stage kidney failure. The day of his operation his GFR was 7.His tac level today was a little low so they have increased one of his immune suppressants. Tac or Tacrolimus level is the measure of treatment needed to prevent organ rejection. They have to find the optimum balance of suppressing his body from attacking the new kidney, whilst still allowing it to function. During the early stages after a kidney transplant getting this balance right can sometimes see a change in the kidney function. He’s been asked to increase his tac drug to raise that level, therefore lowering risk of rejection. It might be at the next test it shows the tac level higher and the kidney function a bit lower but eventually they will find that balance! Andrew is very pleased with how his new kidney is functioning and enjoyed being able to eat some chocolate over Christmas! I got given a job at the clinic today of taking his urgent bloods over to the lab 🔬 amazing to think these little bottles can tell us so much! (Probably a sign I’ve been there too much too now they are giving me jobs!)

Christmas

Surviving Christmas

Even more good news today at Guys, Andrew’s creatine has dropped by another 200. His kidney function has already increased to what it was back in May and we hope it will continue to rise. He was told to go home and enjoy Christmas and will be back on Thursday as he starts attending a twice weekly transplant clinic. To anyone facing Christmas this year without someone they love, know you aren’t alone. I wish I knew last year that it might be possible to feel happiness again. When others told me, I couldn’t believe it was true. That I might be able to not just give a painted on smile, but feel it. Christmas will never be how we want it to be with Lexi missing. But unlike last year, we will be feeling joy. Joy can live along side sadness, we don’t need to chose only one to feel. I can’t wait to see Annabelle and Lukie’s faces tomorrow. The presents are wrapped, the food prepared and Andrew and I are snuggled up watching that Christmas favourite Deadpool 2! Survive Christmas by doing what is right for you, find your own way to feel joy. For us this year we planned to spend Christmas week just the four of us on holiday. Plans change but it’s going to be lovely to spend the time together at home, so grateful that we do get to spend it together. And if all of that or the thought of being able to feel joy is so far away, I survived last year with the words continually in my mind, of surviving one breath at a time.

Chronic Kidney Disease

Finally Home!

Best feeling to have him home!! This mornings blood test showed a drop in the creatine! What we had been waiting to hear, the new kidney it seems has started to work 🥰 The CT scan showed a healthy new kidney and no kidney stone which they had thought he might have. He was discharged this afternoon and will be back at Guys on Monday. The tests on Monday will hopefully show a continuing drop in the creatine 🤞🏻 So amazing to think that just a week before we had walked into Guys unsure what to expect. To see him walking out just a week later is just incredible ❤️

Chronic Kidney Disease

Kidney Update 21st December

Not home today unfortunately. Rather than going down, his creatine has gone up! One doctor thinks the kidney isn’t sleepy and there is something a miss, another thinks everything is fine still! So a few more tests today a CT and ultrasound. Drinking lots of water and another review tomorrow morning with the mornings blood test. Andrew’s certainly rattling about with the amount of tablets he is now on. The amounts will change over time depending on how the kidney is working with his body. One of the most important ones is the immune suppressants. That is what stops his body attacking the kidney and rejecting it. He will be on these for the rest of his life. He’s had two infusions of immune suppressants as well as having three different oral immune suppressants to take throughout the day. He’s also on steroids at a low dose that also act as a suppressant and a tablet to help prevent him getting chest infections. His immune system has essentially been wiped out by this combination and we’ve seen people return to the ward who had been discharged earlier in the week having now caught an infection. The early months after transplant it is so important to limit your exposure to germs that would normally not have affected him. They recommend no public transport for 3 months. No eating in restaurants or takeaways for 6-8 weeks, so he’ll have to put off that kebab for a while. I’m off home now to go and wrap Annabelle and Lukie’s presents ready for Tuesday. We were due to be going on holiday tomorrow for Christmas week but have obviously had to cancel that. We are keeping everything crossed we still get to enjoy a quiet Christmas at home together. Annabelle and Lukie got to see Father Christmas today and the dog seems to have got a job at the local pub so it’s safe to say they are in good hands. But it will be lovely to be back home together.

Fundraising

A Million Thank Yous!

I’m a bit lost for words here! Over £4,000 raised from A Million Dreams Gala for GOSH!! We received an exceptionally kind donation for the night of £500 from Shirley on behalf of Usborne Publishing. Thank you so much for that. It was lovely to hear how much your company support charities benefiting children. The raffle, auction and other kind donations on the night added to Usborne’s donation has helped us to have an incredible total of £4,071.21. Thank you to everyone who joined us on the night. Buying tickets to the evening, raffle tickets, bidding on auctions and throwing money in the pot as you left – what an incredibly kind bunch you all were. And thank you for coming along and having a fab evening – it was lovely to celebrate Lexi’s birthday in your company. To our sponsors, St Julians Club and Bandstand (https://www.instagram.com/bandstandlondon/). St Julians Club’s generosity meant we were able to host this evening just 10 days before Christmas. They allowed us to use the lovely venue and gave us an incredible price for food and drinks. The staff were all lovely and the biggest of thank yous to the lovely Nell. If all of that wasn’t enough they also donated a years membership to one of our lucky raffle winners! Thank you to Bandstand, who sponsored the decor for the event and helped us to make everything look as we dreamed it! Bandstand are big supporters of GOSH and we were honoured they chose to support our event as well. Of course a big thank you to the many companies who donated amazing prizes to us. With the costs involved with putting on the event the money raised came nearly exclusively from the raffle and auction. We are incredibly grateful for you helping us to hit this amazing total. And thank you to Lexi for inspiring me to do anything I dream. A Million Dreams. Same time next year everyone??https://www.justgiving.com/fundraising/amilliondreamsgalaforgosh