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

Quick update

Hey all!! :)

So..... thought I would update to let you know where we are at this week in the mysterious case of the disappearing red blood cells....

Unfortunately Alex weekly blood test has shown that his Hb is not holding :(
I kinda knew what it would say before they phoned.....I can see it in him...he gets paler and more tired....

So.....

They have decided that they need to figure out what is going on by taking a look at his actual Bone Marrow....we are going to GOSH on Tuesday for a bone marrow aspiration...they will extract some of it under general anaesthetic and see what they can figure out.

Should take about a week to get any answers...if any at all...they aren't sure whether they will get any.
Alex, true to form, is proving to be unique!!!!
They haven't seen this before and are totally at a loss as to why his red cells are disappearing but everything else is doing well.
They assure me that they will be able to do something about it...eventually...it just may take time to figure out the mystery!

Some days it gets hard to fight off the terror that grips me in the chest......:))  I have to keep repeating the mantra......

He will get better....all things pass......he will get better.....they will fix him....

It is going to be a busy few days ....because his Hb is dropping so rapidly, they are concerned that by Tuesday it will be too low to safely operate and put him under.....
.......so off to the QA on Monday for a blood transfusion to make sure he goes into Tuesday in a better state :)

He is, as always, still smiling and seems happy enough about things.
I've explained as best I can about the procedure on Tuesday and why they need to do it....he understands that it may be a bit sore but that they have to do it to try and fix the problem...

If only I could bottle his positivity and bravery and sell it!!!  I meet people al the time who could do with a dose of Alexness!!! LOL

So...for now...life goes on as normally as possible :)  We wait....................................... and keep smiling!  Even though some days are harder than others to keep positive.

I am mindful of the lovely saying that I heard in a recent film.....

Things will be alright in the end....and if they are not alright........ then it is not the end!


Will let you all know how it goes and may try to get Alex to take his mind of things by sharing his gorgeousness with you via video diary!! :)

Take care

Much love

Lou XXXX

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

Still going strong!! Home Now :)

Hello my lovely bloggies!!!

I know its been an age since we updated...It has been a bit of strange time...coming home and getting used to being independent again!!
We had become really quite institutionalised....I guess it would have been hard not to.....living in a 12 x 12 box for all that time!! :)

We have been home for 2 weeks now....Alex has put weight on ( almost 1.5 Kg since we got home....he looks much better for it and seems to be gaining strength all the time.

The pictures above were taken on our belated Christmas Day which was last Saturday!!!  Father Christmas came on Friday night and brought Alex EVERYTHING that he had asked for on his list....must be because he has been so good and brave this year!! :)
We had Christmas Dinner with all the trimmings on Saturday and watched all the Christmas TV that we had saved on the good old Sky planner!!!  It really felt like Christmas day...in fact it was strange to see normal life going on outside as we sat with our party hats on!!!!
The Scooter in the pictures has been put to good use and Alex has been out on little ventures around the estate....he is managing to get outside for some fresh air when it is quiet and nobody is around....He loves it!!

Alex's blood tests are weekly now... which is quite stressful after getting daily updates..... you get used to such close monitoring..  We have a lovely Community Nursing Team who come every Monday morning and change his dressing, flush his lines and take some bloods...
Last week, his results were FABULOUS....neutrophills over 2 and Lymphocytes rising nicely......
this week not quite so good....everything has dropped again :(  Neutrophills down to 1.3, lymphocytes down, Haemoglobin down to 8.7 which is getting very close to needing a transfusion.... :((
I'm hoping that it was a dodgy blood sample and that next Wednesdays test will be better!!
It is frustrating because he looks so well and feels well....makes you realise how potentially fragile the whole house of cards is....and what a long way we still have to go...
On a positive note though....they tested engraftment again last week and it is still hanging in there at 100%... HOORAY!! :))

Today has been a frustrating day....as my Facebook Friends will already know!! LOL

We STILL don't have any teaching at home...despite the fact that GOSH contacted Hampshire LEA on 4th Jan and Alex's school sent of all the paperwork on 5th Jan...the age old...."paperwork didn't arrive" excuse is being wheeled out and so..... after me and school chasing it for a week now....I've FINALLY had a call to say that his tuition will be starting NEXT Wednesday!!!
Despite the fact that I had already told them that we couldn't do any Wednesday as it is Clinic day....

The lady actually said that she was sure that I would be really grateful and pleased that they had managed to sort it out so quickly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Alex has been home for 2 weeks.....by next Thursday he will have been home for 3 weeks.....with no provision AT ALL.......

There is a statutory requirement for them to provide a minimum of 5 hours a week......
Then.....to top it all off...she told me that he had to have his lesson at 9am every morning and whilst she understood that he was sick and probably needs rest....I have  to understand that she only has 6 tutors and LOTS of children requiring one to one tuition so I could take it or leave it!!
I wonder if they would have the same attitude if he were one of their regular "clients" at the Pupil Referral Unit....the school refuser's or kids with behavioural problems so severe that school won't have them?????

Brilliant!!!........As those of you who know me well can imagine.....
there aren't enough curse words for me to use in a rant about the attitude of some of our sectors of Public Service........
I am very close to giving up hope that there is any point in being a law abiding, well behaved, tax paying citizen....

I've also had to spend the day chasing down the delightful team of CNS Nurses in outpatients for BMT....we were told that they would always phone us on a Thursday with an update on bloods and Alex's care...
After eventually tracking them down via a message on answering machine and then sending our CNS, Helen to see them....

apparently we were misinformed by the inpatients team...and they would only phone us if there was a problem....

I'm sure you can imagine that the information was passed on to me with the usual care, compassion and understanding of the BMT nurses in outpatients..... They didn't even tell me about his engraftment holding steady....luckily our CNS Helen is fabulous and phoned me herself as I think she suspected that I wasn't going to get much out of the BMT team!
It must be very difficult for them...having to deal with these damn parents with children  that have just had a transplant ....I can't imagine how hard it must be for them to have to pick up the phone and give information to people like us who are so bloody demanding...
Perhaps we could all petition for patients and their carers to be removed from hospitals to make Nurses jobs a bit easier....then they would be able to finish their shopping on-line or catch up on the latest gossip!

I must remember to stand by their side next time they are out on strike ....all these truly competent and professional "teachers" and nurses!!!

There......rant over...... well for today at least!!

I can't wait for the day when we get the all clear and I don't have to spend my life relying on incompetent and rude "professionals"....

It will be A  MAZ  ING :))

Anyhoo.......Alex is oblivious to all the background crap that I deal with so he is a happy boy......:))

Ms Wills from school brought over a dozen kids from his year today...they came to bring Alex some presents of sweets and books...
He was thrilled!!!
They all stood outside on the front lawn and Alex talked to them through the window...

He loved seeing his school friends and was really excited!!

I particularly loved it when one little girl ( who is renowned for speaking her mind!!!! LOL)...walked up to me on the front step with a look of outrage on her little face and said

 " WHY DOESN'T HE HAVE ANY HAIR????????
 I briefly explained....she looked perturbed and then said  

" Well....................... at least his eyebrows appear to be growing back!!!!"

Brilliant :))  really made us laugh!!!  ( especially as Alex's eyebrows are indeed growing back....they are quite dark and he is in danger of looking a bit like Sam the Eagle of the Muppet Show!!!!)

Will try to keep updating once a week to keep you up to speed with the recovery...

Finally I just wanted to reiterate how very grateful I was and am for all your support over the last few months....It was incredible to have my worldwide family cheering us on  and I hope you all realise how very important it was to keep us all smiling and positive!!

Yay for social networking!!

Speak soon

Lots of love as always XXX

Day Plus 31.. The first trip to the outside world of 2012!!

Hi All!!!!

A Very Happy New Year to you all.... as you can see from the videos.....we have started our New Year really well!!!!!! :))

As Alex's white cells and neutrophills are holding steady above 1 and he is off all IV meds...... they let us go OUTSIDE!!!!!!!!

HOORAH!!!!!!!

Luckily, as it is a bank holiday, it is really quiet around here so it is safe to venture out..... we went to Queens Square Gardens just outside the hospital.....grabbed a drink from Costa and had a great 20 minutes in the fresh air and sunshine.....and freezing cold!!!!

BRILLIANT!!!!!!

It must seem really strange to you guys that we find it so very exciting to walk outside for 20 minutes but it feels like such a massive milestone.....

Alex hasn't seen the outside world for almost 7 weeks.....it absolutely feels today like I can actually dare to really hope........... that we might just be home by the weekend..........INCREDIBLE!!! LOL

Alex is doing extremely well, no problems at all with his meds all being oral he has made the switch really well...he is fantastic.

His skin reaction doesn't appear to be GVHD but is very likely to have just been a reaction to the blood transfusion...which is great.....GVHD or a temp are the things that would keep us here.....
The Docs have said that it could still happen...they said that children have a habit of spiking a temp half an hour before discharge.....

Let's hope that we continue to be an exception to the norm!!!! :))

I know that we still have a long road ahead....the next 6 months will be crucial....holding on to the engraftment and staying well and germ free.
We need to slowly build Alex's strength and weight back up.....but it will be so much easier at home...with proper rest and food I'm sure it will take no time at all!!

It's all just a little bit exciting isn't it!!!????????? :)

It is lovely to be in a position where I am having to hold back the excitment rather than the worry and stress.....
I never dared to think this far ahead.......and now...all of a sudden...

Here we are.......on the threshold of a new life!!!   It's all very dramatic isn't it!!???? LOL

I hope that you all having a great start to the New Year and that it will continue for all of us!!

Can't wait to see you all SOOOOOOOON!!!!!!

Girls in Hill Head.....get that  Champagne on ice?????? :))

Lots and lots of love and hugs

Lou XXXXX

Day Plus 28....D Day!!!

Hello All!!!! :))

Again, my apologies for being so quiet......  We've been in a quite a lull of non activity and very little change in neutrophills and stuff..... it's been quite hard to stay motivated and I think we have all run out of steam now and just want to come home!!

Christmas was very quiet and just a tad miserable...we absolutely made the most of it and had as much fun as you can in a small room with no alcohol!!! LOL

We NEEEEED a proper Christmas though when we get home....turkey dinner and crackers and Christmas lights...the works!!!!

I hope you enjoy seeing Alex's video tonight...he looks really well doesn't he!!! :)

he is doing fantastically well and is feeling great... his neutrophills are 1.07 today which is fantastic and a huge rise..... great news....there are some problems with his kidneys and his liver....being caused by the drugs that he needs to take, so they are playing around with his meds a bit and have had to pull back on an anti fungal and an immune suppressant..... they are hoping that that will do it and they will right themselves and not have to work quite so hard...he has to help too by drinking 2 litres a day which amazingly...he is managing!!! Good Boy!!!

He has made the switch to Oral meds really quickly because he is so tough and hardy....he hasn't batted an eyelid....it's no prob at all...he has quite surprised the docs and nurses with how quickly he has picked himself up and forced himself to eat and drink and take meds...

The motivation to go home is strong!!!!!...... :) LOL

So...to the BIG news....they took the engraftment bloods on Wednesday and the results came back today.....


100% engraftment!!!!!  It's worked......!!!!!!!

It's only gone and bloody worked!!!!!!!! LOL

FANTASTIC!!!!

They have warned that it may go down a little and fluctuate for a while...but also said that if it starts at 100% then the chances of it dropping too much is VERY slim..

As long as we don't fall at any hurdles over the next few days....no GVHD and so no steroids needed....no infections and no temperatures....

We may actually be home by next weekend!!!!!!!  HOOOOORAYYYY!!!

We start drawing and administering his drugs as from tomorrow..( how hard can it be...we've been doing it for 5 years!!!??) and we start the process to get the hell out of dodge!!!


HOW EXCITING IS THAT!!!!!?????

It all feels a bit surreal at the moment...I think I may be a tad institutionalised....I'm just waiting for someone to come and tell me they have made a mistake....:)

If we don't get the chance to Blog tomorrow...I wish you all a healthy and happy new year...

It has been a hell of a year for so many of us...but I can't help but think that 2012 is going to one hell of a year for very different reasons.

I am thankful for good friends, good health and an appreciation for simple pleasures....so may it continue

All my love and good wishes for the New Year

Night night XXXXX

See you next year!!!!

Christmas Message :)

Merry Christmas Everyone!!!!!

(I do feel a little Dickensian every time I say that.......maybe it is because we have a little Tiny Tim and we are in London!!!! LOL)

I hope that you have all had a lovely day surrounded by the people that you love and who love you back.....We have been lucky enough to have that.....along with a small brave boy who is feeling better every day :)

Santa managed to bring a few more white cells and neutrophills.....the all important neutrophills are up to 0.4 today!!! :)

Slowly but surely does it......thankfully, Alex has not shown any signs of major Graft Vs Host Disease or picked up any bugs...incredible really.....he is just slowly cruising through with no major dramas...

If we continue like this....we may just be home within the first couple of weeks of Jan.....:))

Alex got loads and loads of presents from Santa @ GOSH this morning....we had lots of fun opening them all.....

Alex had turkey for lunch....at least I think it was.....we couldn't be too sure....safe to say he didn't eat a terrific amount of it...

We got a lovely buffet in the kids playroom....kindly provided by Waitrose I do believe....it was fab....first christmassy food we've had this year!!! :))

I hope you like Alex's review of his year and his Christmas Message...my apologies for the view of my giant backside running around....I couldn't figure out how to edit out!!!! Sorry :)) LOL

he had lots of fun and wanted to show you all how well he is feeling.

We have had a lovely day, despite the circumstances...... quite normal really.....

Dave and Alex arguing whilst building Lego...me and Aunty Lou drinking too much ( although today it was Tea and not champagne...:((.... too many Wii games....too many sausage rolls and now we could all do with a lie down!!!! LOL
Alex had fun having a wander up and down the ward and saying hello to everyone.....I totally forgot that I was wearing Elf ears and wondered why everyone was looking at me in the lift and canteen!!!! LOL

We are really hoping that this is the worst Christmas that we will ever have....and that is not bad at all!!!

Missed you all lots....can't wait to come home.

I wish you all a VERY Merry Christmas and as always, send all my love and thanks for being damned MARVELLOUS friends....

XXXXX

P.S.  Ussher.....your video was fantastic and made me cry!!!!! BOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!! LOL