Monthly Archives

December 2018

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

Chronic Kidney Disease

Kidney updates 20th December

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!

Shard
Chronic Kidney Disease

Kidney updates

No change to report from up here I’m afraid. I imagine it’s a bit like waiting to hear confirmation you’ve won the lottery. The new kidney is still sleepy and not yet showing signs of functioning. This was making me feel anxious but the doctors have repeatedly reassured us that there is no cause for concern. They did another ultrasound of the new kidney today and blood is flowing round it well still, so the doctors are happy. We are waiting to hear that Andrew’s creatine has come down. This will show in a blood test and if it comes down it’s an indication the kidney has started working. So every blood test result we hold our breath and hope to hear it’s gone down! But when it finally does it will feel all the sweeter I’m sure. We heard today about someone whose kidney didn’t start working until 2 weeks after it was transplanted – so it’s still very early days.

Miracles

Miracle on Christmas Close

We don’t really live on Christmas Close. It’s just what the children had renamed the road on account of the Christmas lights that beautifully illuminate our road.

But there was a miracle that happened here. The doubters and the naysayers can believe what they want, but for us there is no doubt.

I wanted to believe in miracles all my life. I felt drawn to church when I was younger. We had a vicar who was able to tell stories from the bible that would capture my attention. I loved stories and hearing people talk about them afterwards. It was like one giant book club that would meet and review the stories they’d heard each week. I was always most interested in stories of seemingly magical happenings. How could Noah have built a boat big enough to hold so many animals? How could Samson lose his strength when his hair was cut? Stories that drew you in to a different world, where you could believe the impossible might happen were always my favourites. Yet in my own life I felt I was trapped in a life where things seemed to go from bad to worse, no matter how positive I tried to be.

Always believe something magical is about to happen. I’d put it on my Instagram stories just a few weeks earlier. It was my screen saver for many years and what I always hold onto. I refused to give up. In a year where my baby girl had been so cruelly taken from us, where my elder daughter’s health had declined and where my husband’s health plummeted, I attempted to cling to a belief that things can always get better. Sometimes that belief took the form of me thinking this was all just a dream and I would wake up soon to find my three children happy and my husband healthy. But mostly, I believed we could find happiness right where we were.

Society tries to sell us a belief that we can find better elsewhere, mainly by buying happiness. Buy a bigger house, get a better job, buy more clothes another car etc etc! I’m not really a things person. My house is testimony to it, if we were to move my own possessions would occupy hardly any space, my children’s collection of toys on the other hand would need their own van. But for me things don’t matter, it is the people that do. So I believed in the broken place we occupied we could find happiness. I believed that something magical would happen to bind us back together.

In the week leading up to Lexi’s birthday and the anniversary of her death I found myself unable to hold back the tears. I attempted to keep it together by not stopping. I am not one for sitting still, I can’t often focus on watching tv programs, I can always find something that needs to be done. I have an obsessive compulsion to tidy. Lots of people have told me they wish they had OCD but I can categorically say I wish I didn’t, it is exhausting. The week of Lexi’s birthday it was at an all time high and not wanting to sit still helped me at least be prepared for the ball, maybe the only time I’ve been thankful for OCD. On Friday evening I had finished boxing everything up for the ball so it was all ready just to be put into the car the next evening. I looked at the clock, 12:01. It was Lexi’s birthday. I got out my laptop and rewrote part of my speech. I finally shut the laptop. There was nothing else I could do, everything was ready, I considered tidying the house and my exhaustion made me finally just sit. I started talking to Lexi, something I do often. I was telling her how I was sorry I wasn’t finishing off wrapping her birthday presents. How we should have been sat here putting together a little tikes car, traditionally our children’s 1st birthday present. Through tears I told her I was sorry I couldn’t buy her anything but I hoped in Heaven she would be having the most amazing birthday. I said that although we couldn’t get her a present maybe she could send one for daddy. It was 12:45 I was exhausted and went up to bed.

Always believe something magical is about to happen.

I was asleep within minutes and then suddenly awake again. The phone was ringing. “Hello” I heard Andrew saying. He put the phone on speaker.

“Is that Andrew Mace?”

“Yes.”

I grabbed Andrew’s hand, both of us squeezing each other’s tightly. We knew what this was.

“I’m calling from Guys hospital, we have a kidney for you.”

I’ve never felt anything like that before. We had received one phone call in July and another offer had come and been refused by his consultant earlier this month. The call in July was courtesy, unable to outright tell Andrew not to accept the kidney they had explained all the reasons why he shouldn’t accept it.

This call was so different the surgeon went on to explain what a very good kidney this was. Everything he said was positive. How the donor had one small kidney and so the kidney they were offering him had grown bigger to compensate and they suspected that kidney was doing the work of both. It was a sort of 2 for 1 in the kidney he was being offered. The donor had an incredible GFR, that is what tells them how well the kidney was working. The donor was only a few years different in age to Andrew. We both couldn’t believe it. Everything we were told sounded so positive. They commented that although Andrew might have potential live donors this kidney could be as good as a live donor kidney.

“What are your thoughts Mr Mace? Would you like to accept the kidney?”

Andrew is often more guarded with his feelings so it was a surprise to hear his response.

“Today is my daughter’s birthday, she died last year. This is a birthday gift from her.”

As we said goodbye to the surgeon and told him we would make our way into Guys hospital we both stood in shock. Both of us crying and thanking Lexi. It was a sign she was still with us, the sign we had so desperately waited for.

I called our neighbour who had been on standby ready waiting for this call since Andrew had been placed on the list.

“Is everything alright” she answered. “The hospital phoned, they’ve got a kidney for Andrew, it’s Lexi, it’s Lexi, she’s done this for him.” I must of sounded hysterical and I was. I was completely overcome with the fact I had just minutes before we received the call been asking Lexi for this. She hadn’t left us completely, we couldn’t see her anymore but we could feel her love. And Andrew was going to get his kidney.

As we drove through London it didn’t escape me that nearly a year ago we had made that same journey down the motorway in the ambulance with Lexi. One journey filled with despair, one filled with a renewed sense of hope.

All the doctors and nurses we met on Lexi’s birthday we told of why this was so significant to us. We shared lots of tears with them. We went and found a quiet space and sat and thought of the donor and their family who had just lost their loved one. We said prayers for their family. We would never forget this donor and will without question remember them every year on Lexi’s birthday.

Andrew had made me promise on the journey to the hospital I would still go to the ball. At 7:15pm just 15 minutes before our ball was due to start Andrew was taken down for his surgery. I had just arrived at the venue. For months I had worried how I would survive the time Andrew was in surgery. 7 hours the operation would take. I too had been gifted the perfect distraction. Although I wasn’t able to stop checking my phone every few minutes I managed to enjoy a beautiful evening celebrating our Lexi’s first birthday and all that has been achieved in her memory.

Finally at 2am the surgeon called me. “Mrs Mace, the surgery has gone really well. Andrews awake and talking.”

She even took the time to ask how the ball had gone. It was an amazing call.

We couldn’t prevent the donor from dying but Andrew was able to honour their wishes to give the gift of life to another.

A miracle happened on Christmas Close that night. The timing was perfect. The doubters and the naysayers can believe what they want, but for us there is no doubt.

Always believe something magical is about to happen.