Almost a year!!!

Hello!!!

I had reason to have a look back at our blog today and watch all of Alex's video diaries....
First of all I realised that I have been very shabby at keeping you up to date with Alex's progress....which, considering all the wonderful support and love we had from you guys is terribly rude!!! My apologies!
Second and perhaps most importantly, I realised how very far we have come....and that it is definitely time to update....:)

I have included very recent photos, taken by a friend: the very talented Jay Armstrong.......... here on the beach at Hill Head.  As you can see for yourself, Alex is doing REALLY well...he has grown, not only in height but in hair too!!!! He really does have a very impressive mane!!

It is almost a year since we arrived at GOSH for the most incredible journey....and what a year it has been.
I was struck whilst watching Alex's videos that he really is the most brave and positive boy....that has carried on through a tough year!! :)

Our last entry was all about his red blood cells and their reluctance to play the game..... turned out that it was all because of the blood type mismatch between him and his donor, coupled with the type of chemo that he received...It just stopped in time... once he was well enough to come off the immunosuppressant drugs and his body could take over and get rid of the old antibodies, it fixed itself!!! Clever body!!!
So..... we celebrated for a while.... a very short while.......

And then a pesky virus reared its ugly head.... EBV reactivated within his body and became a huge problem, very quickly!!  So.... another treatment was needed called Rituximab.....that drug basically had to kill of all of his B cells ( as the EBV was hitching a ride on them).
After a rather nasty reaction to the actual treatment, which meant more time in hospital, all appeared well and things were back on track....:)

Or so we thought........ :)

In a very few cases of patients treated with Rituximab, they can have a delayed reaction to the drug, around 8 weeks after treatment, all of the white cells and neutrophils disappear and the patient becomes neutropenic......

YEP!!!!  That was Alex...... *sigh*...of course!!!

he is now known as " small print boy" by the team at GOSH..... if it has happened to one person before....it will happen to him!!!

Sadly this has meant lots of delays in his immune system getting back to normal.... its been tough on little brave....every time he has been close to getting back to normal life and going back to school it has been put further back!!

However............ things are really good at the moment :) He is still 100% engrafted...which means that he is 100% cured...CGD has GONE....he no longer has CGD!!!  Wooooohoooooo!!!!! :)

Alex has had his central line removed and is back at school ( full time this week!!)  and has been back out in the wider world for a while now..... he is still on a fair few drugs to prop up his weedy immune system ( which appears to be as lazy as he is!!! LOL)

We have had a few fun adventures...Paralympics closing ceremony, House of Commons to receive an award from Anthony Nolan and a couple of cinema outings......Hospital visits are thinning out and he hasn't had a blood test for a FORTNIGHT!!!!! :)

Alex even managed to go on a school residential trip, for a week to a farm in the New Forest....(Dave went with to administer drugs and keep an eye on him)  He had a brilliant time...he fed ferrets, milked goats, collected eggs from chickens and dug up turnips.......ALL things that he would just not have been able to do a year ago!!!
I know it sounds fairly standard for a child to be able to do these things but that is the fabulous thing you see........

HE CAN DO IT NOW!!! :)

Yes...I know I'm shouting but its REALLY FANTASTIC!!!! :)))

He can do normal things......which is all he ever wanted...

He has a wish coming up with Make a Wish soon...... we hope! We are now looking forward to spending Christmas at home...all together :)
No Afghanistan.....No Hospital....... just Xmas telly and Turkey...NORMAL!!! but so Incredible!! :))

I feel almost ready to breathe again.....5 years is a long time to hold your breath!!! Believe me!!! LOL

We are hoping that his lazy lymphocytes will pick up the pace soon.....then we will gradually lose the drugs...the anti virals, the antibiotics and the horrid weekly stabbings for his immunoglobulin infusions...by Easter, they should all go and we will just have daily penicillin and yearly appointments to check on him!!

I think we will have some exciting things coming up over the next couple of months....Alex's wish and maybe a TV appearance in the most unlikely place!! LOL.....I will keep you updated :)

Now...I want to end on a thanks


Thanks to all of you.....your support by reading my waffle and watching Alex's videos...your comments....your messages......your cheer up presents....All of it...

We honestly couldn't have stayed smiling without you.... it has meant the world to us....particularly to small brave who didn't feel so alone thanks to your wonderful support.

Speak soon

All my love..... Always

Lou XXXXXXX