Hello, Hello!!!!

I know......I'm officially rubbish...... I haven't updated you guys for ages!!  So I thought that I would take a few minutes to give you all an update on little baldy man's progress :)

As you can see...still bald....still smiling....and still GORGEOUS!! :))
Took this picture this morning as he was happily trying out his new desk... courtesy of the lovely Aunty Di :)

So...we are now 14 weeks post transplant..my goodness, hasn't that gone quickly!!??
Since getting home we have just been trying to get back into some kind of routine and normality ( as much as we can).
Alex has been doing really well in his recovery and as such we have been lucky enough not to have to go to clinic in London too often...we are at appointments every 6 weeks at the mo and he has already been able to ditch a few meds...
We have lost MMF ( one of the anti rejection drugs), he has, MUCH to his great delight, also lost Itraconazole which he has been taking for 5 years..that is the foul tasting anti fungal drug that has kept him safe :)),  Don't need it any more...HOORAH!!  He is weaning his magnesium supplements and his anti sickness meds...( although we do still have a few vom moments!!! LOL).
He has home school most days for an hour, we have a lovely teacher who is great with him... he is getting fairly up to speed with his Maths and English and Alex and I work on Science and History and other stuff to try and make sure that he isn't behind when he eventually goes back to school.
He has had a couple of his school friends over for a play after school...he LOVED it...catching up with all the school gossip and just being a "normal" 9 year old for a while....It is fantastic to see, and gives me a little glimpse of how normal his life will be again...... can't wait!

We have been out and about a little bit for a whiz around the block on his scooter and on sunnier days a longer walk on the beach.... it's nice to get out and about in the fresh air and as long as we time it so that we don't run in to too many people it is fine and really good for him :)
We still can't go anywhere like shops, restaurants or cinemas....nowhere inside where there will be people....germ carriers...the lot of you!!! :) LOL
As Alex's immune system recovers we should be able to do more and more...just waiting for his lymphocytes to start to recover and then he will be able to start thinking about going back to school and venturing out and about more...still got a very long way to go with those pesky little cells though.... they are taking their time and we think it will be at least another couple of months....

Now to the not so good stuff.......

( I know right.....it couldn't all be good news.....it is us we are talking about!!)

Alex has needed a few blood transfusions since we got home.... not a worry at first...not unusual to need a top up a couple of months after transplant....(especially when the donor and recipient are different blood types)...but...
His Hb (Haemoglobin)  levels have been dropping very quickly and suddenly...the cycle has got quicker after each transfusion.  It's a bit of a worry as it could mean that his body is not producing any of its own red blood cells...:((
The Docs have got steadily more concerned after each transfusion.... as have we...he gets very symptomatic....pale, tired and quite breathless... I can tell before the blood results come in that it is low.
They have tested for various virus strains that could cause it...changed one of his meds and checked for antibodies which would suggest that it is the O blood group and the AB blood group fighting for supremacy...
It is non of the above! :(

The only thing left to consider is a problem with his bone marrow...it would be extremely rare BUT there have been a couple of cases ( worldwide) where the bone marrow hasn't grabbed the stem cells responsible for red cell production...BUGGER!
It has been a frustrating time...shockingly...the BMT outpatients nursing team haven't been very proactive and I've had to do a fair amount of chasing various people and hospitals to get blood tests done, looked at and transfusions to happen....  Who knew that I would have to utilise all my old and rusty P.A. skills for this!!!?? :)

So...where are we now you may ask....

last transfusion was on Friday 2nd March and his blood tests on Monday 5th were good!! :)
His Hb was back up to almost normal levels...I have to say...he has been really well this week...not too pale, not too tired....looking good in fact!

I've got everything crossed that his blood tomorrow will reflect this....hoping for a steady Hb level.....so come on my lovely bloggies....send up and out with your fabulous positive thoughts...prayers...whatever you do....we need you again :))

If it shows the same trend ( lowering Hb) think we may have to go back in to hospital so that they can extract some of his bone marrow..
( yes....I think that is as crappy and painful as it sounds)
Take a look at it and maybe even grab some more stem cells from our lovely donor to give Alex a top up....

Sigh

My poor boy.....

Anyhoo....back to the amusing positives...his hair is really growing back now and sure enough...as promised is lovely and soft and really blond!! :))  No more tennis ball head.... he may actually be able to have a real haircut instead of a number 2 with the clippers!!! LOL
Most amusingly.....the Ciclosporin ( anti rejection med) causes excessive hair to grow all over his body....and BOY does it!!!!!! LMAO...we now call him Wicket because he is beginning to look a lot like an Ewok!!! :D

It's like having a new and exotic pet!!! LMAO

One of the possible virus' that they were looking at was Parvo Virus.....( the virus that dogs get!!!) I'm sure you can imagine the mickey taking that went on..... we suggested that maybe it was because he was actually turning into a puppy and that we wouldn't have to buy one....we could have the best of both worlds.... a puppy boy!!!! :))

Bless him....what did he do to deserve parents like us!!!??

So....think that's got you all up to date..

OOOh....apart from the very exciting news that I am currently at Number 2 in the Official UK Album charts!!!!! :)
Yes.....ME!!!!

To take my mind off things a bit and get me out of the house, I went and joined our local Portsmouth  Military Wives Choir.....to cut a very long story short....we were approached by Gareth Malone and before we knew it we had recorded a song for the new Military Wives Album...In My Dreams.
We are track 4 on the album...Up Where We Belong.  It's not half bad...even if I do say so myself!!! LOL

so.....here I am listening to the album chart countdown on Radio 1  :)
We are a new entry at Number 2...only beaten by Bruce Springsteen!!!!
Hahahahaha....my bizarre life eh????  We went Gold before it was even released on Monday and are well on the way to going platinum!!
How cool is that!!!! LOL


I will endeavour to blog again and keep you up to date with developments and will hopefully be telling you that everything is fine and his body has decided to fix itself!!

Take care of yourselves......

as always.....lots and lots of love from us..

Lou XXX