Everything that i need

I’m going to try and write this blog without crying but no promises! To start with, the little fun fest video i filmed is nearly done and when it is i will post on here along with my thoughts about the day so sit tight! 🙂

Today is the 25th April. One year ago today George was receiving his life saving treatment. One year ago today, the man who saved my sons life was in hospital giving his cells to a stranger he knew nothing about. Damn it, the tears have started.

I remember leading up to the transplant i used to walk down to the chapel every night, i’d write in the prayer book for George and the friends he had met along his journey. The vicar used to read the prayers every morning and pray for every single person in there which is such a beautiful thing to do for all the people at the hospital. I’d always write an extra one, for the protection and the happiness of our hero. I often wonder whether ‘good karma’ has worked it’s way back to him for what he has done. I wonder whether he has remembered the date today and whether he knows just how much we are thankful for him, and celebrating the wonderful thing he did.

I can’t quite put my head around the fact he saved my sons life. The fact that anybody could be someones hero is just amazing. I am truly disappointed that i couldn’t be a donor but Matt is and i will always hand over any cells they need for research. I still find the fact that anyone could be saving little babies, kids or adults is so magical. If you fancy reading over how to become a donor i’ll link it below, i know i’ve said it over and over but just think YOU could be someone’s hero, the admiration i have for this man and his family is just on a whole new level. The procedure can be done two ways, so if the needle in the spine or hip is putting you off, did you know you can donate just like a blood donation?? Think about it, for a few days of recovery you could save a child from a grizzly looking future.

You could give two parents hope, a family dreams and a child – a future. Because of you someone could grow to be something wonderful, and because of you two people can hope of the future they once couldn’t bear to picture. A life with their child in it.

To our donor,
Today is the day my son was given his second chance at life. His re-birthday. Because of you we get to celebrate this extra date in our life. This time last year i was sat in a hospital bed watching my son with rashes all over his body, in pain and receiving your cells. Thoughts were running through my head about a number of worries and questions but the over riding thought was how ill my son looked. How bad everything seemed back then, i could never run away from the thoughts that my son was just getting worse. My family were worried sick too, i had so many tearful calls with my mother and family members, who although they wanted to fall apart too, stayed strong for us and pulled us through. I can’t wait to meet you and show you all of the photos from the hospital life we lived, for you to see just the transformation he made once he received your cells. I often think about you and your family, and i hope you are all well. We’re celebrating for you too, we hope you understand we will never be able to pay you back for what you have done but we will ALWAYS honour and remember you.

To our beautiful stranger, thank you.

A x

http://www.anthonynolan.org/about-us/frequently-asked-questions

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Sort out your spinning head

I didn’t expect to be writing another blog post so soon, but this morning after deciding which outfit George would this morning and brushing our teeth together I spotted a hospital envelope which had been posted this morning.
We receive hospital letters daily, appointments, updates etc so this wasn’t an unusual addition to our day. I sat George down, got him settled and addressed the envelope.

Opening the envelope I could see the words ‘Great Ormond Street’. I expected a one year post transplant appointment or something along those lines.

What I received this morning was the most beautiful thing I could of ever wished for. A hand drawn card. From the person who saved my sons life.

The person who had donated his bone marrow, who had gone through a procedure to help save someone’s life had again taken time out to write a beautiful note to George.

We aren’t allowed to know anything personal about our donor like names, emails etc and vice versa until 2 years post transplant so to receive the first piece of mail from him really struck a chord with me. What an incredible man.

Our hero, is someone we have never laid eyes upon, someone we’ve never spoken to yet I would take a bullet for this man. He gave my son life, and the best chance of life at that. I can’t ever repay this man for what he has done for me and my family but I hope one day to explain to him how amazing the thing he has done is. We found out in this letter, he is also a father. I hope to one day tell his children just how much of a heroic thing their father did.

My emotions are flooding today, and have again made me assess just how lucky and blessed I am to be able to watch my son run round like a mad man!

Thank you stranger and I look forward to meeting you one day.

Forever grateful,
A x

P.s. Why don’t you try being someone’s hero? You can now donate bone marrow just like a blood donation, it’s not all scary needles!! Give it a read and think about it at least, you could be saving someone’s baby. Be a hero.
http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register

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These mist covered mountains

Finally I have updated videos for you to watch if you wish! I have had a YouTube channel set up for a while now, uploading videos I hope to one day show George so I shall post the link below for his London trip and his surgery day. Have a nosy!

George is doing leaps and bounds right now, smiles are constant and his speech is just amazing us. He now can recognise and say his letters, numbers, colours and shapes.. Little smarty pants!

It’s still so surreal not having his line in, bath times are easy and happy. Matt and I let him sleep in just pj pants the other night as it was a little hot, with his line in I always worried he’d pull his line or do damage lying without a top on. His hair is sprouting curls still, and he’s gaining weight fast!

Little Fun Fest is this weekend, and I’m so excited to see his little face when he realises where we are. I really hope he remembers the happy memories we tried to fill him with last year before we took him in. I’m hoping the weather holds as last year it was beautiful and sunny, although it won’t dampen our spirits if it is raining! I will also be filming this, so I’ll make sure I link that here when it’s done too!

Enjoy the vids and we wish you all a happy weekend 🙂

A x

London & Georges second birthday

George’s surgery day

Ribbons and Detours

Apologies for the late blog post. George did amazing and he really is a strong little trooper.

The day started with Matt giving George his porridge (George had to be starved before his operation). 8am he had his bottle and he wasn’t allowed anything else past this time. My stomach was in knots for most the morning, it doesn’t help that I have a huge phobia of surgery. Every time I kiss him goodbye before a surgery I feel this pit of pain in my heart, it’s the worst feeling.

George was in good spirits and despite the wait, no food and hospital environment he didn’t let it stop him smiling. When it was our turn the nurse popped over with a gown for him, and I started to become the emotional wreck I’d been feeling like all morning. Dressing him in the gown, I took extra moments looking at his soft perfect skin, his sparkly eyes and his gorgeous smile. I handed him his lucky ‘Mr Froggy’ who watches over every surgery George has. It’s an added comfort for me as well as George and he gladly snatched him off me and cuddled him.
Matt carried him to theatre as the one time i did, I barely made it to the doors before I caused a scene and broke down!

Matt and George went to the prep room where they blew bubbles much to Georges delight. Shouting ‘bubbles’ George went to sleep and Matt left him. We began our nail biting wait and although it took longer than expected we finally received the news he was in recovery.

Matt went with a freshly made bottle and returned with a very hungry sleepy little boy. Cuddles and a nap later, George was ready to come home.

He did so well and is home, laughing and happy. It’s weird seeing him without his line, and worrying about it. I keep going to check it’s taped up or clean and realising it’s not there anymore. It’s a relief and lovely to see our son looking like a ‘normal’ two year old.

Thank you so much for all the prayers and wishes

Love to all. A x

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I’m kidding myself as I’m standing here in the pouring rain

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1.45am and unusually George is awake, toddling around the living room, driving his cars and laughing with that twinkle in his eye. It’s like he’s in sync with us, he can sense our nervousness and worries.

George has been doing extremely well sleeping in his room, he very rarely awakes and wants to play but tonight he has. In the morning we have to bundle him up and take him to ward 76 for surgery.

Central line surgeries are quite regular I imagine at a childrens hospital but seeing your child go through those theatre doors never gets easier. It never takes away the worry, the anxious nail biting minutes that your child is away from you.

Each surgery, words seems blurred, minutes seem like hours, the ticking of the clocks seem emphasised, the thoughts in your head take over and the sinking feeling in your heart stays with you throughout. The last vision of your child haunts your mind.

Tomorrow will be the start of his new life, no line means we can do so much more with him. I can’t wait for his first proper bath since his line, a deep bubbly bath. Hell, I might even jump in too! Although this is a great thing, a real step forward in Georges recovery, we’re saying goodbye to his safety net. Georges line has been a lifesaver in so many way.

I remember the day they told us he’d need one for the first time so vividly. A doctor telling us he needed a tube to a vein next to his heart to help him, feed him medicines effectively. I remember seeing him after his surgery to place his line in, the cut in his neck, the bump on his skin where you could feel the tube. It terrified me, how could something that looked like this be a good thing?
I remember thinking at the time I had made the wrong decision, I hated it. I cried that I had let someone do this to him, now I wish I could thank them. That line, that thing I hated – saved his life. Many times.

It became his (and mine) safety blanket. I knew if something was wrong we could give him something quickly and effectively. It’s become an extra body part to him in my eyes, one that I now look at with love.

It’s amazing to think that medicine and technology has allowed our doctors to do something incredible and research has come so far.

So we come to the end of one journey tomorrow, and the start of a new one. I am going to film the whole day tomorrow so we can show George as he grows just how brave he was/is. I will also post this video on YouTube and post the link here so you can join us too!

For all the mums wondering what to pack for surgery I have added a picture of what we have ready to take.

Shorts to put under his hospital gown
Quilt so he is comforted with his own smell in hospital
Pjs and dressing gown to go home in so he is comfortable
Slippers so he can toddle round after if he’s up to it
Toys (lots of them!)
Food/nappies – the basics!
Thermometer (nurses normally share and take a while finding one)
Lucky teddy (Mr Froggy) every surgery he has attended
A little treat for when they wake up!

Wish us all the luck in the world for (hopefully) Georges LAST surgery!

A x

It’s all going to shift, it’s out of our hands

Last week we celebrated a milestone for us all, Georges second birthday.

A date that during our hospital stay seemed so distant and a date that has taken us by surprise with how fast it has approached us. We celebrated in style with a stay in London, 5 days of relaxed family time. George seemed so relaxed and happy spending most of his time running, smiling and playing with his new toys.

We have so much good news and updates to talk about at the moment so I’ll jump right in!!

First off we booked our tickets for Little Fun Fest. I did blog about this festival last year, it was our last hurrah before going in for Georges bone marrow transplant. A day of normality to keep us going through the endless days in there, and it worked. Matt & I talked about how we’d be taking him next year and how much he’d love it, it was a goal for us to reach. We are so excited to be going this year and even more exciting is that WASGeorge has been chosen to be an official blogger for the event. We are ecstatic to be blogging about an event so close to all our hearts, and George is going to be able to enjoy everything so much more this year. We have a healthy child and will be attending an event as a ‘normal’ family. I’ll post the link to their website at the bottom so if you’re interested you can check it out too!

Secondly, we have some amazing news from the hospital. George has come along leaps and bounds with his recovery, his bloods are looking fab and although we still have some issues we can’t help but look at just how far he has come this past year. A date has been given to us for… (Drum roll)… His central line to be removed! His central line has been an extra body part on him since August 2012 so this is a HUGE deal for us. No central line means we can finally give him a bubble bath and we don’t have the worry of some serious infections always on our minds. The date we have been set is 25th Feb and I will hopefully update you all on the day, I am also filming it so I will post the link for that too when it’s up on youtube!

Lots of exciting and happy things going on in Georges life at the moment.

Love to you all. A x

Www.littlefunfest.co.uk

Into the adventure

George,

How do I begin to tell you the pride I feel when I think of you? The bravery I see in your eyes? The strength behind your smile?

I have watched you battle everything against the odds since the day you were born. That perfect day I finally got to stare into those big blue eyes of yours.
The days that followed in hospital, although some of my scariest memories, were bittersweet. Here I was, a new mum who more than anything in the world wanted to bundle you into the car, take you home and be normal. But we couldn’t, you weren’t a normal baby, you were a one in a million – you still are. Instead I settled for wheeling you away from the nurses and hospital beds into the break room, sneaking tea and biscuits and watching you sleep. I used to sit there gleaming stroking your ear and rocking your little bed. How did I get so lucky?
The early days at home where I’d wake up next to you in bed with you smiling back at me, staring at you while you slept all day (typical teenager already!!). I remember the pure joy I felt having you home but the fear I felt for our future was indescribable. I couldn’t leave your side for even a shower, the fear took over me. What if when I got out you’d stopped breathing? I’d find myself breaking down in the shower, outside, in the hallway while you slept. I know you heard me, I never cried because you weren’t perfect – I cried because I was so desperate to have you stay here with me.
Our journey was a difficult one, and when you developed the Caffeys disease nothing could of prepared us for the ride we were all about to take. Nothing broke my heart more than seeing you in so much pain all day every day and having no doctor who could help you. Day in, day out I cuddled and held you while you whimpered and screamed. I felt like I was falling apart, I couldn’t protect my baby. The hospital stay began and although I was strong enough to stay with you every day and night, seeing the nurses poke you with needles and IV lines killed me, I could never be in the room. I want you to know, I was there. I was on the other side of the door, ear pressed up and crying probably as hard as you. Please know I was there, but just not strong enough to hold it together for you – I’m sorry.
The long nights at hospital began. I remember every detail like it was a bad dream. The safari nightlight in the corner of the room slowly turning, the faint cries of children down the corridors, the dim lighting, the beeps of the IV machine, the blanket wrapped around you with blue stars on, the drawing you did for me above the bed, the nights were my escape. I’d sit on the bed, and my fears and worries would consume me. I would write in my notebook stats from the day, how well you’d been, what you’d eaten.. The boring stuff. Anything to take my mind away from where it was wondering.
The weeks felt never ending, the hospital became a painful home. The dreams I had for my baby were a nightmare. I had so many lovely things planned for you, baby groups, play dates, weaning at home, bed times, bubble baths.. Instead your life was this, I’d failed you, disappointed you. Who wants to be brought into a world where they are just in pain all the time? I couldn’t shake the guilt I felt that I had done this to you. It ate me alive, my counsellor really helped me get past the guilt eventually but I still get it sometimes – you deserved so much more and instead your first year was snatched from you.
2013 arrived and I don’t think I had ever dreaded a year like I did this one. Your bone marrow transplant was nearing and I have never been so scared in my life.
The time we spent in hospital for your transplant is sometimes a bit of a blur. Your dad and I tried to make it as fun and happy as we could for you, deciding smiles was the best medicine. Taylor Swift – Trouble was your jam and I used to blast it dancing with you in the room, we’d sit on the floor and play with your drum set, watch toy story again and again.. And again! We’d paint, draw, play cars, dance, we’d do what ever you felt like. I’ve never felt more scared in my life, but at the same time having to slap on the biggest smile so you thought everything was okay. Every night id go outside to write your blog, I’d sit on the steps with my cup of tea, wind in my hair, sun setting in front of me and daydream that daddy would be carrying you out and we’d all walk off into the distance.
You proved everyone wrong little man, you battled and battled and you got better. Six weeks after being admitted we were taking you through the double doors out into the sunset and going home.
You, George Arthur Clough, are the strongest little boy I know, the bravest and you’re mine.
The emotions I have felt along this journey have made me a different person, a stronger person. Someone who appreciates the smalls things in life, worries less and doesn’t stress as much. I want to be the mum that has water fights with you, splashes in muddy puddles, and finds felt tip on her face. I hope I can be the mother you deserve and I will always be here for every heartbreak, scrape and cold.

You have proved anything is possible George, always follow your dreams.

I will always be proud of you.

I love you.

The wonders

We’re home – hurray!!
All in all we had a pretty uneventful day today apart from the fact it took HOURS to discharge us! George has been happy and very sleepy, and is now passed out downstairs on daddy.

The antibiotics he was on have seemed to make his nappy rash ten times worse so we’re struggling to keep him comfortable with that at the moment but he’s doing well. We had new neighbours move in today and unfortunately with being in hospital we didn’t get to say goodbye to George’s little friends next door but they will be missed, he loved them! I’ve just had a lovely shower and washed away the horrid hospital dirty feeling you get whenever you stay there!!

Ward 84 were absolutely fantastic with us though and the nurses are so lovely to George! I love it on that ward compared to the others and wish we’d get admitted there every time we had to rush in but I’m so happy to be home and happy that George will get a comfy nights sleep 🙂

A x

Forever and a day

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Well after saying yesterday we shouldn’t be hopeful, we have had an amazing day!

Late last night he started to really cool down, we assumed the paracetamol had kicked in and his temp would be back up at around 6am. I woke at 5am fully prepared to sneak a temperature check to find it in the 38/39’s but it was 36.2!!! George slept well and had kicked this temperatures butt! He woke up at 8.30am and we had a little play together till about 10am when he took another little nap. The whole day he has been full of beans, giggling SO much and it’s really turned a negative stay into a positive time with my boy!
The play specialist came in to see us and brought in a few toys for George including the bubble tube which holds some really old feelings and sentiment. When George was admitted for his first long stay, I sat in front of this tube with George crying on a number of nights and kissing his head. It takes me right back and in a way makes me feel happy about just how far he has come – my little Wiskott warrior!

The doctor has said that if his temperature stays down, tomorrow they will stop antibiotics and hopefully we can go home so fingers crossed for negative virus results and no temperature!

After a day of playing, running round and hiding and seeking I’m wiped and going to sleep very soon!!

George is still up, although he’s super tired (he’s fighting it) playing cars. Thank you for all the well wishes and prayers.

Love to all. A x

Without the dark, the light won’t show

Clinic visit was today (we have these weekly) and after what seemed like a positive visit, George started boiling up.

At first Matt & I decided to keep an eye on him but after picking him up and feeling him burning we decided a hospital visit was what we needed. He very soon after decided to throw a vomit in too!

Packing our stuff we couldn’t help but feel a little scared and worried, with all the bad news recently from our friends on the ward we felt it was our turn.

George continued to burn up and when we arrived at accident and emergency he was red with a temp of 38.5 but his heart rate was through the roof at 185. We had called the hospital to let them know we were on our way and to get a room ready for us, however, it took them longer than an hour to see to us at which point George was shaking he was so hot. We requested paracetamol and also for someone to see him as we were very worried at this point.

Finally we are in our room, on ward 84. This ward has been very good to us so far and seem to be friendly and efficient. They all remember George from months ago and one even popped in to see how much he’s grown!

His temperature is settled for now as the paracetamol is working its magic, he’s had some antibiotics and is now curled up next to me. I’m hoping he has a fairly temp free day tomorrow but I know I shouldn’t be so hopeful!

On a very sad and devastating note, George’s little friend Ryan left to be with the angels today. We are thinking of his family so much at this time and if you want to show your support to them at this difficult time, here is the website set up for Ryan.

Ryan’s Fight

A x