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.”
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.
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!
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
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!)
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.
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
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.
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
All reports were good again today – no sign still unfortunately of Andrew’s creatine going down though. I have a tin of celebrations on standby in the ward ready to celebrate when the new kidney kicks in! The doctors remain completely positive still.
The ward was a lot quieter today as they are hoping to get everyone home for Christmas and a lot of people have been discharged already. Firmly crossing our fingers that Andrew will be home soon too, maybe even as early as leaving tomorrow!