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

Day Plus 21...exciting day!

Hello All!!!

Sorry we have been a bit quiet of late....things have been a bit tough...Alex has been very down and has not wanted to talk to us...let alone you!!! :)

Things have been moving quite slowly with his blood counts and progress seemed to have halted.

Alex is really struggling with eating and drinking again...everything tastes awful and can make him quite sick :((  BUT we know that he needs to be eating and drinking again and taking his medicines orally before they will even think about  letting us go....so we are having a bit of an uphill battle at the moment as our poor brave boy has slightly run out of steam and would really rather just stay on line feeds of TPN and not have to go to effort of eating and drinking.....

BUT......

This evening we got VERY good news...his counts have jumped right up....White Cells to 1.32 and Neutrophills to 0.38!!!!!

Hoorah!!!!!

Which also means that Alex has gone from Green Status, which is the strictest during transplant ( total isolation) to Yellow....which is more relaxed and he can go out on to the ward in the evenings when things are quiet and there aren't many people around....he can even go in the playroom for isolated play next week!!!!! :)))

Double Hoorah!!!!!! :)

This has cheered him up no end and will ( I think) spur him on, as he can really see that home is within reach now!! :))

Hope you are all well and ready for Christmas....we will be sending you a Christmas message....hopefully to rival the Queens!!!!! LOL

I sign off tonight on a very happy note.......we're on the slow road OUTTA HERE!!!!!!! :)

Lots and lots of love....as ever....miss you tons XXX

Hi All.....

An unusual blog today...:))

All good here....White Cells and neutrophills on the rise....we had a bit of a down day yesterday...Alex was very sad that he was missing Christmas at home and he was really missing all our lovely friends.....not helped by Morphine withdrawal :(

He is off the background morphine now and hardly using any pushes himself...his mouth and throat are feeling much better.

He has some sore, red patches on his hands....which the doctors think is a little bit of Engraftment GVHD ( Graft Versus Host Disease) which they are pleased to see.... as long as it doesn't get too bad it is a positive sign of the increasing engraftment of the donor cells!!! Hoorah!!

Today, I have had a lovely visit from my brilliant friends...Ali, Emma and Kirsty & Katie.....what a boost!!!!  We grabbed lunch and they gave me this brilliant...brilliant....brilliant little film.......

How amazing are our friends....!!!!!!??????? :)

Just the lift we needed...it made us laugh a lot ( and maybe I cried a little bit.........LMAO)
You are all truly amazing and we can't thank you enough for being the best friends that anyone could EVER wish for.....We love you all dearly :))

I hope you all enjoy seeing our gorgeous, crazy, utterly fabulous friends.....and love them as much as we do!!!

Miss you all heaps....love you all muchly..... XXXX

Superstar returns on Day +16

Evening All!! :)

Sorry there haven't been many blogs this week... Alex has had a rough time since Sunday and we seem to have been much busier than we have been before......
Probably due to the amount of drugs that Alex is now on...all the usual suspects...plus Morphine/ketamine mix, extra antibiotics x3 because of temperature spikes, blood, platelets, anti sickness, drugs for high blood pressure, drugs for his liver because of raised something or other...magnesium, potassium, drugs to make him wee and of course his TPN so that he is at least getting some nutrition to keep him going.
He has lost quite an amount of weight this week.... can't wait for his mucositis to heal so that he may be able to start eating and drinking again....he is shrinking before my very eyes!!!! :)

His hair dropped out, very much like pine needles dropping off a Xmas tree!!!!! All at once!!!!!  We had to scrub the last few annoying clumps out, as every time Alex moved he got showered in little bits of itchy hair.... poor boy!! :((

He has been really poorly this week...the Docs are amazed at his stoic nature and the Pain Team...( yes I am still giggling)  commented today on how little extra morphine he was using for the severity of the Mucositis.....I'm so very proud of him...even though he has been feeling rubbish, he has been lovely and polite to everyone and is STILL remembering to say thank you to all the nurses and doctors...

Our Nurse today said that she has rarely seen a child with Mucositis this bad stay so upbeat and outwardly well and happy....she is amazed by him...as are we, every day!!!

He is feeling a bit fed up at the moment....he has just kind of realised properly that there is NO WAY he will be at home for Christmas....  So.....understandably he is a little teeny bit down.....I'm sure that come next weekend he will be fine..... ( I hope it's not too depressing here....although apparently, last year, the kids got Heinz Soup for Xmas Dinner from the kitchen!!!!!!!!)

His White Cells are recovering quite well...they are at 0.4, and have been creeping up very slowly every day...we have had a slight drop in Neutrophills....gone down to 0.1 from 0.12......quite normal by all accounts.....just hoping they don't stay down for long..........fingers and everything else crossed.......we need them to keep going and not start to fail....PLLEEEEEEEEAAAAAASSSSSSSEEEEEEEEEEE!!!!!!???????

He is a bit croaky today, as you can hear on his diary, but they think it is just due to healing of the mucositis....if it carries on they will have to check him out for other viruses.....

All in all...as we have all ALWAYS know........ Alex is an ABSOLUTE superstar and is taking it all in his stride and staying very positive and happy...(the PS3 and the Wii are helping tremendously with that!!!!LOL)

It is taking its toll on us all a little...we are all tired and miss home terribly........ Can't wait to see you all again and live a slightly more normal life (unlike here...... where random people can just walk in whenever they feel like it and you have triple hepa filtered air conditioning that makes you feel like you are on a long haul flight all the time...... YUCK)

Here's hoping for more positives this week.

Lots of love, as always.......miss you all lots XXX

Keeping the Nurses on their toes!!

Morning All!!!

Thought I would take a moment to keep you up to date with poorly boy....

He thought that he would have a bit of a drama day yesterday so I didn't get the chance to update..... :)

Alex had a rubbish day yesterday..lots of pain..his mouth and throat were VERY swollen and sore, so he spent most of the day in a morphine induced sleep....  His Platelets had pretty much disappeared and he had NO white blood cells at all....so.....all in all, feeling rather rubbish.

Our lovely Doc came on twice weekly ward rounds yesterday and said that he is happy with where we are and although the mucositis is tough for Alex, it is a sign that everything is working as it should be....
I fessed up that I was probably a REALLY bad parent, as I was feeling quite relieved that Alex has developed symptoms....  He said that I definitely wasn't because they were also quite relieved.....and they had started to worry that the Busulphan hadn't been enough and he was too well!!!!

I KNEW IT!!!!!! :)....so....all back on track.

Even to the point where Robert ( the Doc) said that he would expect Alex to spike a temp and need antibiotics over the next week.....

So he promptly did!!!! :)  Good Boy!!! LOL
They started him on a couple of broad spectrum antibiotics and ordered up some platelets....but then Alex decided to have reaction to Morphine..... he got REALLY itchy skin, all over...
which in itself was bad enough...but coupled with no platelets, meant that every time he scratched he caused terrible bruising and bleeding :(

Hence...I was NOT winning any popularity contests with my child yesterday, as I HAD to stop him scratching :(

Just for fun...at about the same time.......all his hair started to fall out...all at once......adding to the itchy misery.....poor, poor boy.....I just had to brush him down every few minutes...his body, face and pillows were covered in hair...he looked like Teen Wolf at one point!!! LOL

Anyhoo......they have switched his morphine to a morphine/ketamine mix, which has finally stopped the itching and seems to be working...he has had his platelets which has stopped him coming up in amazing bruises and lumps/bumps.

Then....Just for fun and to scare Aunty Lou, he decided that breathing properly was over rated!!!!!

I had commented a couple of times over the day that I thought his heart rate was a bit high and his SATS were a bit low....think they felt I was obsessing over the monitor being on all the time because of the Morphine......WRONG!!!!!! who knew!!!!!????????
He ended up needing a bit of help and Oxygen by about 9pm...his SATS dropped right down to 89 and heart rate shot up...Not Good :(
I reminded them at this point that he has had complete respiratory failure before and his left lung has collapsed several times.....

They listened! Hooray!!!....
to cut a long story ( and night) short....Doc came listened to his chest... all fine, all decided that it was being caused by mucositis and swelling and NOT respiratory disease or Alex going a bit Septic....PHEW!!
They have taken blood cultures to see if they can grow anything and are keeping up with the antibiotics just in case :)

He actually seems much better this morning...he has been on Oxygen all night and doesn't seem to need it now...he is sitting quite happily at about 96 SATS....which will do for now :)

He is still sleeping....covered in hair :) but not looking anyway near as scarily sick.....Hurrah!

He needs another Blood transfusion today as his HB has dropped a lot...he may feel a bit more with it after that :)

Good news is that his white cells are actually showing up on the blood test now!!!!! :) No sign of neutrophills yet....

BUT

shouldn't be long before we get a little glimpse of some!!! :)

It's all VERY exciting....I can almost see him getting better in front of my eyes :)  ( as long as you look past the pale, bald, bruised little body)

He is definitely feeling better...he is grumpy and tells me off every time I ask him how he is!!!!! LMAO

Hopefully will not have any more excitement today and the rest of the day will pass nice and quietly :)

Will keep you posted

as always.....lots of love XXXXX

Day Plus 10...

Sorry...... definitely no video diary from the star today....... here we are, day plus 10 already.....and this is what they have been warning us would happen!!
Poor Alex has been very poorly since last night  - he had his rash and temp which disappeared but then his mouth and throat erupted with mucositis, which is when the lining and membranes of the mouth and throat break down ....essentially he has the worst ulcers and swelling that you can imagine :(
He was finding it hard to swallow and the first thing he did when he opened his eyes this morning was cry...he was in so much pain..poor babe :(
So.....the nurses today were great ( unlike last nights crowd who didn't do anything to help him grrrrrrr) and gave him oral morphine and bleeped "The Pain Team"
( I must say at this point that I almost laughed out loud when they told me this....all I could imagine was people in black leather and capes with a big P on their chest, like baddies from a superhero movie!!!!! LMAO....I'm clearly becoming hysterical!!!!)
Alex slept almost as soon as he had the oral morphine and carried on sleeping....and sleeping......
So...."The Pain Team" (I'm still sniggering)....arrived early afternoon ( disappointingly, just a lovely regular nurse in a regular uniform)  and sorted him out with a Morphine pump, which he can administer himself...so he just has to push the button when he is in pain...:)

He slept some more.....then some more....... then finally properly woke up at about 4..feeling much brighter...
He is on TPN too now ( complete nutrition through his Hickman line, straight into his bloodstream)...there is no way that he can eat or drink anything...he can't swallow properly...they have switched almost all of his meds to IV now..The IV's and pumps by his bed are multiplying at a rate of knots!!!

I managed to give him a bed bath, which he quite liked..
.....said it was like being in a spa!!!
and then clean 'jamas....
even managed to get him sat in the chair for a little while so that I could change his bed :)
he then promptly fell asleep again after a few pumps of his morphine :)


He is much better on the Morphine and coping really well again...Hoorah!!!..
Hoorah for strong drugs!!!! :) LOL

Helen ( our CGD Nurse) came back to work today and came to see us...we chatted about his mystery rash and temp yesterday and she said that it didn't sound like GVHD ( Graft versus Host Disease) which I was a little worried about, but that it sounded more like the initial stage of engraftment!!!!!!!! Although it is a little early..........
I'm hoping that Alex is actually going to break the record that he is aiming for and have the fastest recovery from transplant EVER!!!!

How exciting!!!!!  I will keep a close eye on the blood results and keep you up to date :)

So...here's hoping for a good night and good day tomorrow....tonight might be a bit hectic.. because he is on the morphine and TPN he has to have hourly obs and stay hooked up to the heart rate monitor...which in theory is fine....BUT he seems to be having lots of dreams whilst on Morphine and is twitching and fidgeting around like crazy....which sets of the alarm on the heart rate monitor!!!

Good....... lots of sleep for me tonight then!!! LOL :)  And Daddy is at home....trying to rescue the ASBO cat!!! so no rest for me!

For those of you at home.....if you see The Ginger Ninja...please take him home.....he is far too naughty to be let out again!!! LOL........... (suffice to say he has even chewed through the lead of someone's outdoor Christmas lights!!!!)  he is behaving like a troubled teenager and is causing trouble just for attention!!!! :) Dave will be home until Wednesday lunchtime so feel free to drag Henry home by the collar and hand him over!!! :)

So....I'm off to make a cup of tea.... ( I'm watching Alex having a full on conversation with someone in his dream at the moment!!! there is quite energetic pointing going on...he is really making a statement!!!)  I can hear that the rain has now arrived....

Try to update you tomorrow.

Miss you ...lots of love

XXXX

Day Plus 9 !!

Hello All!! :)

No blog for a few days I know..... Alex has been feeling a bit rubbish and very tired..poor boy.
I escaped for a couple of nights and Daddy did his first weekend here in the goldfish bowl!!  I stayed at Aunty Lou's and we had a wander up to Oxford Street to grab a few nice things for the boy :)  He definitely needed a bit of a pick me up so a new dressing gown, some Lego Star-wars and a new PS3 game later.....a slightly cheered up boy!!! :)
I am vastly cheered up by having a real dinner WITH WINE 2 nights on the run!!!!! Lovely.... and much needed!!! LOL

As you can see from Alex's video diary, he is not really himself at the moment :(  He is exhausted and feeling quite shabby ( but he won't really admit it!!!) I noticed him struggling to swallow this afternoon but it took a good half hour of interrogation for him to admit that it was really sore...so after taking a look and finding quite a few nasty ulcers and a very swollen mouth we have got him some codeine and he has perked up a bit now.  he is a bit blotchy and puffy too.....there are some small patches of hair missing....he actually looks poorly now...poor thing...although I have to say...he is still doing REMARKABLY well !!! :)

 The Doc, during ward rounds on Friday, said he is still very pleased and we are where we need to be.......this is the risky time where he has no immune system at all and we have to watch very carefully for any signs of infection and act quickly.  That I can do!!!!!!! Nothing will get past my eagle eye!!!!! LOL :-)
He needed a blood transfusion on Friday night, as his platelets and HB were too low....seems to have done the trick...bloods are looking much better...just can't seem to get on top of his magnesium, so he is still having transfusions of that :)

Alex has just had his observations done and is running a bit of a temp..he is getting a bit rashy (I thought he was looking a wee bit blotchy when I got back).....not sure what is going on...could be an infection of some sort..... I'm not entirely sure that his Hickman line site isn't a bit red......have pointed out to the nurses and they have gone to chat with docs...... we shall see!  :)  He likes to keep us on our toes!!!!

Alex and I saved you all this evening too!!!!!!!  Aunty Lou suggested that it might liven up the video diary somewhat if she were to Streak......she said every good broadcast needs a streaker!!!!!!  Alex and I did point out that the video is watched by Year 5 at school.......and that we didn't think it was wise to traumatise such young minds as it may cause permanent damage!!!!! LMAO!!!!

Hope you are all well and having fun on our behalf!!??

Miss you all lots....lots of love XXXX

I will update on Alex's misbehaving immune system as soon as I know any more XXX

Day Plus 6 !

Hello lovelies :)

No video from Alex today...he is looking really tired today and is having a lie down watching TV..... I think the effects of the chemo are starting to show a little..his neutrophills are very low again and his blood count in general is a bit low so it looks like the battle is starting!!  They have added in some magnesium supplements now, as despite having a few infusions of Magnesium over the last few days it is not coming back up... they said that the Ciclosporin causes that....so nothing unusual! :)

He is still really well though and has been playing all day, I got him a couple of PS3 games that he's had his eye on so that has kept him quiet for hours!! :)
The teacher has been every day this week and Alex is doing some work on  The Universe to try and tie in with what Year 5 are doing..he has also made a Christmas card by following instructions from a girl in Australia :)  Tomorrow is games day....Rumicub I think?????? :) School here is fun!!
He also gets a visit from the music lady on a Wednesday...they were belting out some Christmas carols on keyboard and drums....entertaining the whole ward ( despite the soundproofing!!!!) for a good while yesterday!! :) LOL

A lovely volunteer lady ( there is a different one every day...some scarier than others!!! :))  popped in and introduced herself today...She (Margaret) is a big board game and cards fan and has asked if she can come and play with Alex for an hour on a Thursday!!  Great.. :)  Starbucks for me !!!! :)

It's just really waiting now.....there are still lots of IV drugs going on...2 hours at a time 3 time a day minimum, so Alex gets a bit bored with being tied to the bed for so long...

The Food is getting better..we have learned that we can write on the menu and ask for plain chicken breast....and we actually get it!!!! they just don't advertise it...they only advertise nasty chicken nuggets :((  Alex is keeping up really well with his eating and drinking so could well go the distance without an NG tube again!! YEY!! :)

Pretty much all of his CGD symptoms have gone away!!!!! the Chemo takes away al the CGD stuff and inflammation....so..... Alex says that he feels better than he normally does ( apart from being tired)  You honestly wouldn't know that he has had various toxins fed into his body for 2 weeks!!! It really is very clever stuff!

Things from my perspective don't get any easier...but....it is just a case of gritting my teeth, biting my tongue and getting on with it.  The staff are vastly under-trained, any question that you ask will be answered differently by any given nurse.  The unprofessional nature of the ward management ( Sister and Matron) is truly shocking...they breed a culture where the parents are seen as a bit of a nuisance and are treated as such....Nobody is particularly helpful or polite...there aren't many smiles from the staff here...an awful lot of standing around and chatting at the Nurses Station! I watched 2 students today stand for 40 minutes chatting about their weekend next to 4 other Nurses who were surfing the net and chatting!!!  These are student nurses who 3 months into their training are allowed to put in a NG tube BUT do not know how to make a bed (SERIOUSLY) and are not allowed to weigh a child!!!
The staff are generally quite rude and snappy..it is getting quite hard to stay pleasant and smiley when you get nothing back.  It does get quite difficult to put on your happy face when you live in a goldfish bowl where everyone who feels like can have access and come in and be miserable! As most of you know me very well....you can imagine how much strain it is putting on my poor head to smile and not tell them to BOG OFF and straighten their faces!!!!! LOL.  It is especially hard when we do most of their job....If I cold be trained up to do IV drugs there would be absolutely no need for Nurses on this ward at all!  Isn't that a sad state of affairs....so NOT like the lovely JR hospital in Oxford :)  We miss the JR!!!


So after my mammoth moan and update on the gorgeous boy.... Aunty Lou has just arrived to cheer us up!!! YAY!!!

Hopefully more good news tomorrow :)

Lots of love...miss you and want to come home XXXXX

Hello All!!!!

Apologies for the lack of blog yesterday...Alex and I were a bit fed up and suffering from can't be bothereditis yesterday..I definitely had a bit of cabin fever and we were both very tired after such an intense couple of weeks.

Well....today has been a really good day :)  I was getting a bit concerned about Alex's daily blood results as his Neutrophills had jumped up again to hover around 1.6 on average...we were under the impression that he had to drop his white cells almost completely for the engraftment of new cells to take place...when I queried the bloods with a couple of the nurses over the last few days they looked surprised and didn't know why that would happen.......hence the worry on my part....

Lovely Paul ( the consultant who talked us into this in the first place) was on rounds today and totally reassured me that everything is going really well....he said that with CGD patients, they look to keep a level of white cells, as...... if they drop too low, it increases the risk of rejection!!! ( wish he'd told us that before!!!!!!)  So....he feels like Alex is totally on track and is really pleased with his progress so far.  He did say that it takes at least a week for the effects of the Busulphan to reach peak, so he will get a lot more tired and his own cells will reduce but not until the end of the week.  He would look for Alex's cells to reduce over the next few days and then a short gap with very little neutrophills  before the donor cells start to rise and eventually take over :)  They need as short a gap as poss for CGD kids!  So.......there we are then!!! :)

Alex has had a real boost today from Nickelodeon!!! Through a very old and very lovely friend.( thanks Aunty Deb!!!!).....Nickelodeon got to hear about Alex and sent him a package over by courier today :)
Inside said package was a PlayStation 3 and several games and accessories!!!!!
Needless to say...Alex was THRILLED!!!!...luckily, Daddy had brought a TV from home too........
 (as the hospital can't provide adapters for games consoles for their TV's...they had 3 but they have all been stolen!!!!)

So....as you may have gathered, Daddy has got over his man-flu and is back today...so......I am off out to have some hot food for the first time in 6 days and sleep in a real bed, leaving Daddy as duty grown up!!!!!
(although they are setting up the PS3 as I type so I suspect they will have a real boys night on the games consoles!!!! LOL)

Lovely day today with a boy full of beans and thoroughly cheered up by the random kindness of strangers!!!....It makes such a difference to his little life in the goldfish bowl :)  I'm so grateful!!...it really gave us a much needed boost.....( I don't think I could have played cards any more!!!!) LMAO

So........ hopefully more lovely things to say tomorrow...

Lots of love, night night XXXX

Hello to all our bloggy buddies :)

Well...Day plus 2 now!! As you can see from Alex's video diary...He is really well!!

It is quite bizarre...I'm waiting for that to change...they keep saying it will -  and that he will start to feel more poorly..his hair should start to go over the next week and he may well get more sick as his body goes into battle...BUT...... It certainly doesn't feel like that is about to happen.

A really tiny part of me is worried that it's not working....that the small amount of donor cells that we got won't be enough and that they will just disappear before they get a fighting chance...... a tiny part of me that is totally irrational I know....these guys MUST know what they're doing......I hope :)

Alex has done REALLY well over the weekend, I think the thought of having another NG tube has spurred him on...so even though he doesn't necessarily feel like eating much he is having a good go!!

Happily, I don't have too much to tell today... the weekend has been gloriously uneventful (Apart from our man down with Man Flu!!!)
We have just played and watched TV and judged the Joke Comp...( which I thought was very funny this week....the staff are starting to get a bit competitive now :)...there was a last minute rush for entries and there are now shouts of favouritism as lovely Nurse Ellie has won two weeks in a row...but.....as Alex has said to the people who have cried FIX.....they will just have to come up with a better joke that is FUNNY for next week!!!! LOL

Now we are off to shout at the TV and catch up on Strictly and X Factor.....brightens up the weekend, having a good old rant at the TV!! :)
As you can see...Alex is quite a Marcus Fan!!! :) He was singing along last night ( and was almost as good!!!!) LMAO

Hope to be able to post more good news tomorrow :)

Lots of love
Lou XXX

P.S. thanks so much for all my lovely Birthday messages XXX :) made my day!!  X

Day Zero....The Big T !!

Well....It's done...it's in his body :)...so far so good!
He didn't have much of a reaction to the Donor Cells...just a bit of an itchy rash, which came up after about 10 minutes and seems to have retreated with Piriton..... So far so good......

The Cells came up about 4.30...unfortunately ( for whatever reason) they only managed to harvest less than half of their target, Olga ( one of our Docs) came to explain, just as it was going in, that this sometimes happen and it can mean that it takes longer for the graft to take.... :(
BUT then she said that it doesn't always and it can be a bit random...but to expect longer.....I'm guessing that may mean we aren't making it home for new year..... maybe a few weeks longer.

You can just see on the video the TINY little bag that the marrow came in...there was hardly any!!! It seems incredible that a small amount of orangey liquid ( not dissimilar in size to a Capri-sun) can change his whole genetic make up... his DNA, and his blood type!!!

But..hey ho...if it works, bloody marvellous!!! :)

Now..............................

We Wait........................................................ :)

They just keep checking his bloods to see if their is a return of white cells and then they test to see whether they are his or the donors....
They don't expect any sign of any white cells for about 14 days.

This is going to be the toughest bit for Alex I think, his body is going to try and fight off the new cells and we have to hope that the new cells are stronger and win the battle....unfortunately that battle will likely take its toll on Alex's body.  We'll see......so far he is invincible.....let's hope that continues :)  Why not...he is so unique...gotta be true here too right???!!!

He is avoiding an NG tube for the weekend!!!! Hoorah!!!  Ham rolls all round!!! :) He skilfully negotiated with the Docs this morning and solemnly promised to eat and drink :) We'll see how much nagging I have to do!

We all felt a little elated this afternoon..it's strange because we have such a long way to go, but it feels like a real milestone.

Now we are at Day Zero...not minus anything...
Now we move into plus 1, plus 2, plus 3...etc....

I guess it helps to set small goals..we reached the first one today :) Yey us!!!!! Hoorah!!!  We can finally see an end in sight...after 5 long years.....we are nearly there!!! :)  Just another year of hospitals and Doctors and then FREEEEEEEEEEEEEEEE!! Inshallah!

I may have a cup of tea in a real cup instead of polystyrene to celebrate!!!! LOL!
Dave is making his way back from Apple Covent Garden with the new I Pad...good old house insurance did cover us for our accident prone ways!! :)..just the excess..better than the whole thing eh!!???
Thanks so much for all your calls and texts to wish Alex well..you are all bloomin marvellous and we can't thank you enough for keeping our spirits up and never failing to lift us when we need it the most!!

Our Friends ROCK!...much love to all :)

Wish you could all be here to see such a fantastic thing happening....

lots of love, night night XXXXX

Friday 1st December..Day Minus 1

Evenin' All :)

So..this afternoon it was a bit touch and go whether you would have your superstar video diary..it's been a rough day for Alex!! But....after a couple of hours of extra fluids he has perked up no end and wanted to say Hi :)

As you have been expertly informed by Alex, he had a few spectacular vomits today....and after losing a Kg in 12 hours, they decided to put in an NG tube....very unpleasant procedure which was horrid for Alex..they stuck a small tube up his nose and pushed it to go up and round and then down his throat into his tummy....he was VERY good and drank big gulps of lemonade to help the tube go down..... don't think it went so well though because after complaining for a while that it didn't feel right and hurt his throat........threw up again and the NG came with!!! :( Poor boy!!!
They wanted to put another one in but we didn't want to upset him any more so they are holding off until tomorrow.....we'll see how that goes !!

We have been told that the Donor Cells will be arriving tomorrow afternoon!!!!! We will let them get it all hooked up and flowing and then we will give you a inside view of an actual Bone Marrow Transplant as it happens....your roving ( well not roving....stuck in a bed) reporter will talk you through it no doubt!!!

We are all fine...a bit tired today, feel like we have been here an age already!!! It is very bizarre to leave the hospital and go to a shop or a cafe for coffee......It is surreal that real life is still going on and that people have normal every day things to do!!! I just sit for a while and watch them going about their daily business and wonder if they realise how lucky they are to have such an ordinary day :)  You feel like an invisible observer....like The Watcher in Fringe!!! :) (Ali...you will know who I mean after your Fringe marathons!!! LOL)

All the Christmas decs are going up downstairs in the hospital and out on the streets...it made me a bit sad when I saw them...sad that Alex won't see them  and that he has to be here, having not very nice things done to him and feeling sick.......when he should be having a lovely time  getting excited about Christmas....

.....STILL........ that is why we are here...so that he CAN have a normal Christmas EVERY year and there will be no more hospitals and no restrictions on his life.... :)  Happy days!!!!

More from your very special correspondent,Mr Alex Hannard, tomorrow....with the BIG story :)

Miss you all..lots of love, night night

Lou XX

Chemo Day 7 !! :(

Evening all :)
Well..... as you have probably gathered from the title...Alex needed another day of Chemo today...the levels of Busulphan in his body weren't high enough so he's having mega dose today to top him up!! Those darn Neutrophils are hanging on for grim death!! LOL Another 6 hours of that as well as 4 hours of anti virals..poor wee man.

He has been struggling a little bit today ( hence no video today )  Sicky day today with a few spectacular vomits!!!..no temp or rashes though so not too bad..he has a sore tummy and is starting to look shabby..bloodshot eyes and pale as his sheets...
I finally managed to convince him to have a lie down this afternoon so he has slept for a couple of hours and feels a wee bit better now.

Eating and drinking has dropped right off today so he will definitely need fluids tonight and they are discussing TPN now..( nutrition through his Hickman straight to his bloodstream)  Perhaps, as they initially suspected, his colitis is going to be an issue and they may need to rest his tummy for a while to help prevent rejection....we shall see. They are deciding tonight or tomorrow...

As for us...we have turned poor Aunty Lou into Widow Twanky with all our washing...she is doing a fabulous job of keeping us supplied with clean clothes!!  We have a lovely little room at a house just around the corner from the hospital which is owned by The Sick Children's Trust....FABULOUS!!!!  It means Dave doesn't have to go and beg for a room at the accommodation office every day at 2pm....they only issue rooms for 1 night at a time!!!!!  It makes me sigh....:(  It's almost like GOSH devised ways to make parents lives the most difficult and stressful that they could and devised their policies accordingly!
Dave is not going back to work until after Christmas now as it is proving to be quite a hard job for 1 person to care for Alex 24/7.... we carry out ALL his care from bathing to changing beds to administering oral meds to cooking for, supplying with fluids...everything except IV drugs... Please don't misunderstand me..it is a pleasure to do it ourselves, however it is a hard slog when you are not at home and in a glass fronted 12 x 12 room :)

I feel human again today after sleeping in our little room with a real bed and a duvet...and a shower that is designed with adults in mind and not 3 foot high children!!!! hahahahaha...I had pasta and a lovely glass of red wine with Aunty Lou last night and even managed a couple of hours with the gorgeous lovely Emma and Kate today who fought through London traffic and the strikers to take me out for lunch and let me rant at them!! Bless them..they deserve a medal :) Thank you Ladies XXX

It always feel awful to leave Alex for any amount of time, but experience has taught me that I am much more use if I get out every now and then to eat a hot meal and not be in the hospital... Otherwise everything gets HUGE and everything gets really upsetting...My job is to smile when he isn't and be tough when he wobbles...Today I'm up to the job again!! :)

Hoping ( perhaps foolishly) that he won't get too much worse over next few days.... T day on Friday!!!!!  We have decided that 2nd December shall henceforth be his Bone Marrow Birthday and suitable celebrations shall ensue :)....any excuse for a party!!!

Hoping Alex is well enough to talk to you tomorrow, he is always so disappointed when he doesn't feel well enough to record...if he isn't I've been told to give you a tour of our little palace so that he can just wave feebly from the bed like Bette Davies :)  Drama Queen much ????
Still....... who can blame him!! LMAO

Hope you are all keeping well and happy.

Lots of love, night night XXXX

Chemo Day 6 ( and hopefully the last!!)

Good Evening to you all :)
Well...as you can see from the video diary...exciting day today, experiments, explosions, game playing.....it's exhausting being in hospital!! :)

It has a been a bit of a funny day really.... He has had fun, but is also starting to show real signs of the effects...very sad and upset this afternoon ( all of a sudden), missing home and all of his friends...a few tears and a few sobs of " I want to go home"........me too :(

His mood varies wildly...he's like a very drunk person or a woman with severe PMT!!!! hahahahahaha :)

Hopefully this will be the last full day of Chemo...they need to get the results back from his bloods tomorrow morning and hopefully the levels of the drugs are such that he doesn't need any more...the docs did their twice weekly ward rounds today and said they were happy so far...still talking about a feeding tube as weight still going down....The food here is TERRIBLE!!!! I mean REALLY TERRIBLE..... cheap chicken nuggets, soggy chips....last night we ordered sausages and they were really nasty cheap sausages that had been deep fried!!!!! YUM..... so we had a chat with the dietician and she has agreed to some different things that we bring in...so today had ham rolls...as long as it is freshly opened and then he doesn't have any more from the pack...it's gonna be expensive!!! :)
They said that his neutrophils are still holding on and that it may take 4 or 5 days for them to disappear.....that is when his hair will go and he will start to feel really poorly :( poor little soul....by that time I'm sure he will totally have had enough!!!

Hard day for me too today...fed up with wildly variable nursing care, sharing a kitchen with what feels like every nationality bar British and chavs  who don't clean or have any respect for others... :(  The sister on the ward made a half apology for all the issues with cleanliness and broken things we have had....I say half because it was followed with a " but as you are military, you have very high standards which obviously we are not used to" !!!!!!!!!!!!!!!!!!!!

What can you say to that??????????????????????



It is hard enough to get through the days here but it is really disappointing that the systems and the staff, make it 10 times harder than it needs to be.  The NHS is broken...I mean REALLY broken....Nobody has responsibility for any large area...there are cleaners, domestics, repair men, infection control managers, nursing sisters who work 9 -5 and don't do any clinical work, matrons who just do paper work and cover 3 wards...young inexperienced nurses who don't receive proper training...the list goes on...... the problem is, EVERYONE thinks that it is someone else's responsibility.....the buck stops with nobody :(  

Sorry...... had to get some of that of my chest :)....I'm sure you all expected a rant at some stage...otherwise you would all think that I am getting unwell too!!!!! LMAO :)


Anyhoo......I'm early to post tonight as I am RUNNING AWAAAAYYYYY...I'm going to sleep in a a real bed tonight and have some cooked food :)
I think I have to or I may start to get very grumpy indeed ( may even slip in a small glass of wine !!!
So...Daddy on duty tonight!!!  I'm sure they will have lots of fun ( but not sure that Alex will let it happen again if Daddy snores all night!!!! hahahahaha)

Definitely miss you all lots today....miss home..miss lovely people :)

Lots of love, night night XXXX

Chemo Day 5

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Hello my lovelies....sorry there was no blog yesterday, it was a bit of a funny day..Alex was fine, very tired...Lou and I had to fight with him to get him to lie down and close his eyes but, of course, when he did...he slept for several hours!!!!  He is like Grandpa Simpson...protesting that he isn't tired and nattering away then midway through a sentence...Zzzzzzzzzzzzzzzzzzzzzz!!
I was quite fed up yesterday...Sunday is a rubbish day in hospital..Not many staff...nothing happening...went to get clean sheets for beds and clean towels - cupboard was empty - the answer when I asked was...Oh Yes, it's Sunday!!!! Grrrrrrrrrr...there are LOTS of very frustrating things here...which I could rant about for YEARS....but I will refrain and save it all for my letters to David Cameron and the Chief Exec of this crappy, dirty hospital!
Anyway....frustrations aside...... Was expecting today to be tough...but....... for the minute, Alex is doing really well..he started the last bit of chemo today...the one which will get rid of all his neutrophills...he is in total isolation now...aprons on in the room and gloves for close contact, think that keeps up until a couple of weeks after transplant when they see a return of his neutrophills.
He is still full of energy ( as you can see from the blog video)  I can't help but feel that it is going to crash...aaaaaaannnnnyyyyy minute now, he is getting quite teary and ranging from highs to lows in a millisecond.  I have been warned that he may start to feel really unwell soon.  He is already off his food massively...he has lost quite a bit of weight so they talked to him today about putting a feeding tube in for a while... he seems ok about it :)
The Nurses really like him, he has already built a reputation as being really cheerful and lovely...he takes all his meds with no complaints and always says thank you...even for nasty, cold IV pushes at 4am in the morning :)
He is very glad to have Daddy back...armed with games and more importantly...Walkie Talkies!!!!! They have had much fun tonight...Dave has had to go and walk around the hospital and test the signal...Dave, Call sign: Titan.  Alex, Call sign: Armageddon.  Me, Call sign: yep...you guessed it...SHE HULK!!!!...that is going to be great fun when I'm making a coffee and he calls me!! :)

Anyway...I ramble....It is now about 10.30 and he is getting hooked up to second round of Chemo at 11pm for a 3 hour session...best I go and attempt to make him lie down and try to get some sleep...wish me luck!!!! :)

Miss you all lots..lots of love....night night XXXX

Chemo Day 3

Day 3..nothing much to report really (GREAT!!)  had a nice quiet day, same chemo regime which he seems to be coping with really well.

This afternoon he has been a little bit restless and hasn't quite known where to put himself...He MUST feel like absolute rubbish as he has had 3 days of toxic drugs pumped through him but...he is being very....Alex.... stoic and hardy as ever...he is still smiling, denying that he is tired and determined to keep going :)

I can see slight effects now...darker circles around his eyes, getting a bit paler and quieter...his tummy is a little bit upset but nothing major.

He has a bit of a rest day tomorrow...he is very pleased that he is not going to be hooked up to an IV for the whole day :)

As for me...settling into Alex's hospital routines now, making beds, cleaning teeth 4 times a day, bathing and applying all the cream to stop his skin from getting too bad, constant Ribena runs and all the hourly Observations and what seems like hourly meds...pain relief, steroids, anti sickness, anti fitting, drugs to protect his liver and his kidneys, drugs to protect his tummy, anti virals, anti biotics ( several kinds) there are more drugs but can't remember....the list seems endless.....Alex of course, knows what they are all called and knows which and when.... I may sign him up to Med School after this...he could be like Doogie Howser!!! LMAO.

I'm just glad to be busy....stops you being too scared :)

Well.... as usual, time for tea and the lovely mince Pie that Aunty Lou brought me today!!!! Thanks LouLou XX

Lots of love, night night XXXX

Chemo Day 2

Well....MUCH better day today, he breezed through the chemo today!!!!  They stacked him up with a loooaaaaaddd of pre med drugs this morning from first thing and then started his chemo at about 11.00  He fought sleep for a few hours ( Who knew?????) but then finally gave in and slept really well for a couple of hours..woke up with an hour left to go and feeling fine!!
The play specialist brought him in a brand new Stitch toy this afternoon (donated by Disney I do believe)  He is absolutely thrilled with it :) Bless him....  He has even felt up to having a little wander up and down the ward, to the nurses station and back (flirt much???!!) hahahahaha...

I have caused great amusement this afternoon by managing to pull the curtain rail down with one pull!!!!!! I am now to be known as She Hulk by my charming family!!!! Alex even told the workman who came to fix it my new name!!! :)

All round...not a bad day at all :).  One more day of same drugs and then a new (nasty) one starts on Sunday...I've been told to expect bad things from that, so we'll see.  Was chatting to a couple of other Mums today and they said that the worst is about 2 weeks after chemo when everything starts to fall apart....I'm preparing myself now!!! (where is that wine??????)

So...all is good in the GOSH hood...missing you all lots...

lots of love XXXXX

Day One of Chemo....

So....Day one of Chemo almost done..just one more drug to go which will be a short one at about 10pm.

Hard day today....Alex coped really well for the first 4 hours and then really not so well.... very high temp and vomiting...poor little thing was shivering a shaking...I've never seen him so pale...and that is saying something!!!!!  They have got him on the big hitter anti sickness drugs now..the others weren't working so they had to up the game :)  Scary moment when they gave him the strong stuff and said " it will either work or make him worse....we have no way of knowing without trying....."
(gulp)....but....Hoorah!!! It worked fairly quickly and the vomiting slowed to a complete stop.  Well...it was either the magic medicine, or the fact that he had no more Ribena left in his body!!!! :)

He slept for a few hours and then woke up as good as new!!!! He is bloody marvellous...:) woke up just as Aunty Lou arrived and scoffed biscuits and drank MORE Ribena..... he has just about finished the first drug now and his body seems to have sorted it out (for now at least)

I'm hoping that tomorrow will be a bit easier for him now that they have anti sickness drugs upped...same chemo tomorrow, no new drugs until Sunday.

He is making friends with the Nurses and has announced his Joke of the Week competition...he has all the nurses giving him jokes which he will judge every Sunday and announce the winner.... The funniest moment for me today was the competitive streak in our very lovely Russian Doctor who said " Yes...I know lots of Jokes...I am VERY funny!!!!" ( that sentence said in a very strong Russian accent is hilarious!!!)

Anyhoo...off to make our beds and perhaps fit in a wee cup of tea before our night of meds and observations at 2am, 3am, 4am, 5am,6am etc.... Thank God for Clarins Beauty Flash Balm!!!! LMAO

Lots of Love, night night XXX

Day 2 in the Big GOSH House!!

Right...things have finally slowed down enough for me to sit and have a nice cup of tea and get you all caught up!!! Well........ a cup of tea in a styrafoam cup at least....LOL :)
Arrived yesterday and had a bit of a bad start..our room was in a bit of a state....apparently it had received a "level 3" clean which is supposed to be super duper....It wasn't!!! So......after 2 hours of scrubbing, disinfecting and removing other people's vomit and blood from the bed frame by me and Dave, the room was finally ready to go and somewhere that I am ok with Alex being in..just ok... it will have to do...we are here now!
Today we have started the regime of monitoring all input and output for Alex....pints of Ribena!! The nurses have been quite surprised how much wee one little boy can produce!!! LOL
Alex went to theatre today and had his Hickman Line put in...only in theatre for about an hour...it is sore and bruised but now that he can see the benefits after blood being taken and medicine being put in via the line he is feeling much better!
He is so very, very brave....he amazes us all the time...he didn't bat an eyelid today and has put up with everything with a smile on his face.  He really does ROCK!...I can't think of anyone who deserves a cure more!!
Chemo starts tomorrow morning at 10...I really hope it isn't too hard on him, lets hope he is one of the kids who doesn't suffer too many horrid reactions or side effects..
He is hoping to feel up to posting a video blog tomorrow to introduce you all to his Hickman lines...Oh yes...they have names !!!! :)

All being well, I will crank up the video camera tomorrow and let him get you up to speed!!

Thanks again for all your lovely thoughts and prayers...it really helps to know we have so much support.

Lots of love...night night XXXX

Alex the day before admission

Thought you all might like to see a very recent photo of the gorgeous boy which we took on our day trip to The Tower of London....hence the Raven!! :)

This is where it all begins!

Well....I've started the blog.....so it must be happening...right!!!???

A week to go, we've got bloods this Wednesday to make all the final checks and then the serious stuff starts next Tuesday - 22nd November 2011!

Let's hope it all goes to plan this time.....watch this space...

I will endeavour to keep you updated with our adventures... and most importantly, Alex's progress.... We will look forward to hearing your thoughts :)

Here we go..............................