Christmas Eve Update

Splashed out on some T mobile minutes as usual internet haunt closed until January, I ask you anyone would think it was a holiday season?! Keller is a bit better and moving up to Fox soon which is great news. William still a bit under the weather but we are all looking forward to seeing the Battams later, our microwave christmas lunch (no really, we are having veggie haggis and all the trimmings!) and to seeing if the jolly chap in the red outfit finds us! The nurses are decked in tinsel cos it is the season to be jolly! Anyway must dash round to Waitrose before they sell out of sprouts and stock up on Christmas cheer! Happy Christmas all.

A Christmas message from the Curtis family, well if this isn't the time for sentimental nonsense then I don't know when is!?!?

We would like to take this opportunity (with our captive audience!) to thank you all for all your support this year. You each play such an important part in our lives. Our lives are more wonderful because you are part of them. We have been so touched by all your support and concern for us and for our baby boy during this difficult time. Give each other a hug and tell those people who you love, that you love them this Christmas. Hold your loved ones close and treasure the times that you spend together whatever you are doing. Spare a prayer for anyone suffering in the world and pray for a brighter future. And remember, when God gives you lemons make lemonade (or mulled wine!) Merry Christmas and a Happy New Year.

Saturday +86 and Sunday +87

William has a hickman line infection which is causing him some very high temperatures (40!!!). They have identified the bacteria and are targeting it with antibiotics but he is a bit poorly with it. So fingers crossed he gets on top of it soon. Poppa, Auntie Nicky and Uncle Andy saw William for the first time since his transplant which was brilliant although when Nicky and Andy came in he fell asleep! Granma spent the afternoon playing with him and Daddy whilst Poppa took the rest of us out for Pizza. It was lovely to see them all especially Ella whom I haven’t seen since we came to London. Hannah and Ella are such fun. It was a lovely time.

Thursday +84 and Friday +85

Grandma rejoined us on Thursday which was great. The consultant gave William the once over and as so often it is just a case of wait and see how he goes. They have doubled the dose of the Ocreotide and it is having an effect on the diorrhea although there is still some. His blood gases have been much better of late because his fluid loses are less. He is drinking like a student (although fortunately only dioralyte!) Today family services called to offer us a room in The Sick Children’s Trust accommodation which is fantastic. It means that Mum and Rob will be able to alternate in the room and we have a bolt hole if we need it. There is a lovely sitting room, kitchen and laundry facilities and it is only just around the corner (www.sickchildrenstrust.org). William was rather puffy this morning so they gave him a diuretic to make him wee and it seems to have helped. He was the heaviest this morning that he has ever been! They laid on a mince pie and cup of tea for the parents today which was nice and festive. Sadly, Keller, one of the boys from Fox is back in the hospital and in intensive care. He is really very poorly after getting a chest infection so please say a prayer for him and his family.

Can reindeer really fly?

Sorry about the sound but here a little film from Williams room using the air lock light.

Big catch up....

Friday +78 Saturday +79 Sunday +80 Monday +81 Tuesday +82 and Wednesday +83

We got as far as putting the anaesthetic cream on his leg before they realised that they really didn’t have enough staff to monitor William overnight with the new medicine and that it would be better done in the day when there are more doctors around anyway so we finally started the infusion on Saturday lunchtime. He was ECG monitored until Sunday night when they decided it was fine. His heart rate did drop a bit low when he was in a deep sleep on Saturday evening which gave Rob and a I a rather startled moment but he ‘self resolved’ as they call it! Anyway they infusions have continued unproblematically. The early effects were miraculous and we had virtually a poo free Sunday but more returned and today (weds) they have doubled the dose. The consultant yesterday did stress how pleased she was that there was any effect at all on the ‘test’ dose and was happy that he is tolerating it so well. Unfortunately we have had a series of minor problems with Williams care since we moved round culminating in a double dose (both IV and oral) of his immunosuppressant (they assure me it is not a significant problem) along with other frustrations some due to not enough IV nurses and others due to busy nurses, new staff members and miscommunication. This has been quite cross making at times. I hope that things will improve on that score. Rob and I had a super long weekend together and saw B on Saturday and I had a coffee and chat with Karen and Stuart, in town for dinner with friends too. The highlight for Rob and William was watching Mist through the snow (the TV reception is terrible!) on channel 5 in the morning (8.40 (that’s am not pm if you are reading this Mr Pepper) if you get a chance it is funny too)). I have been holding the fort today and had a health care assistant sit in with William for ½ an hour so that I could walk around the block. William didn’t cry and played and watched Postman Pat. There was a brass quartet (is there such a thing? Well there is cos I saw one) playing Christmas Carols in the entrance hall today which was so festive it brought a tear to my eye! William’s blood counts are a bit on the low side, he has had neutrophils under 1 for a few days, lower than most times white cells and lower than usual platelets but no one is concerned at this stage, so we won’t be either!? Father Christmas came to Robin Ward this week with an entourage that included a Storm trooper (although Rob assures me it was a biker scout as seen in Return of the Jedi but you know what I mean) an elf, batman and a fairy! He left William a wash mit penguin, a 3 CD set of Christmas songs (the kind that make you think you are in a shop!) and an exciting Postman Pat boating set!? No really he loves it, the little boats stick together in a chain with magnets, can run along the table or wind up to sail in the bath and the figures of Pat Ajay and Ted are removable, he does insist that Pat sits in the blue boat (which is Ted’s) because it matches Pat’s outfit! That Father Christmas is a clever chap. Also excitingly Sir Paul McCartney visited the ward and was by all accounts absolutely delightful with Alice (who has been here ages) and the staff were pretty star struck too. He didn’t venture quite this far down the ward but I did stand only 4 metres from him! Apparently Orlando Bloom was here not that long ago~! Well enough celebrity news, oh no I must tell you there was a quite good looking, young man loitering around with the press people about the same time as Sir Paul was here who came to the window and waved, I assumed he was another celebrity that we didn’t recognise so we waved in a jolly way and speculated about who he might have been. Later in the day he donned a pinnie and came into the room, Rob and I were a bit embarrassed wondering how we could find out who he was without asking and started on a very general conversation and frantically racking my brains for young, northern European males when finally he told us that he is one of the play assistants!!!!!!! That will teach me to get star struck! Ooh and I did see Gok Whan (excuse the spelling say it and you will know who I mean) of How to Look Good Naked fame in Knightsbridge!

Chirpings from the old bird!

Friday +71 Saturday +72 Sunday +73 and Monday +74 (and twelve, yes TWELVE weeks here aaaaagggghhhhhh) (I think Rob's posting covered most of this already but as I wrote it, you can read it, or not!)
It is Monday evening and we are relocated to Robin as of this afternoon. The room is a bit bigger and we have, not two but 3 chairs (but no socialising in the corridor). One of the aforemention chairs is a rather charming wipe clean supersized armchair affair that turns into my bed (albeit much narrower than the chair) so I just can’t wait to find out how comfy it is tonight! Otherwise we have rehung our decorations and moved a few things around and we will be fine here. The consultant even came by this afternoon to go over the plan and say hi which was great because Rob hadn’t met him before. We also have exciting (?!) double doors with flashing red lights and you have to wait in the middle where you can also wash hands and don aprons until the light stops flashing before you go out. William has been fine for the past few days, it’s mostly been about fluid balancing because of the continuing diarrhoea. They are tapering off his steroids to release the T cells to fight the virus and (if this process doesn’t also land us with GVH) then they will reduce the Cyclosporin (the other immunosuppressant) which will release more virus fighting forces. This may take a little while, they can’t just stop everything or he would run into problems but at least there is a clear plan.
I went over to Tasha and Jim’s flat in Wimbledon on Saturday for lunch which was very exciting but even more so because it was the first time that I had been in anyone’s home for almost 12 weeks! It was a very nice afternoon and was most revitalising! I had been/was/am (?) getting a bit stressed and cross with the whole you are moving rooms, you are not moving, oh, yes you are, the doctors saying that they would come back and then not and that kind of stuff. Maybe this change of scene will help. I know that in the big scale of things we are doing SO well and we are incredibly lucky to have had this transplant. We do have a way to go yet but a few weeks more are really such a small price to pay.

Tuesday +75 Wednesday +76 and Thursday +77
We had a lovely visit from Granma on Tuesday afternoon, Poppa was banished for hours to the coffee shop due to a nasty cough but later was allowed to sit on the same table as me in the restaurant as long as he didn’t cough on me! On Wednesday William caught up with Uncle Nick and Grandpa and I went out to lunch with them and Phyllis too which was super. William had a top up of blood last night. Today the consultant have been around and they have a plan! It is almost 4 weeks since William has had anything to eat again or any milk and really we are no further forward. They are going to start him on a medicine which will reduce the secretions (that are the content of the diarrhoea (why can I still not spell that without the spellchecker? It has been a recurrent feature of our time here!)) in an attempt to stop the flow! They don’t usually use this medicine and seem quite serious about it all. They have taken an x ray of his tummy before we start as it can cause swelling. Also it can affect the blood sugars so they will be monitoring them too. It will be a continuous subcutaneous infusion and they start with a super tiny dose to check that he can tolerate it and then move on to a more hefty dose. After a week or so, if it works they can give him a different version if he needs it that would be more long lasting or see if his insides have repaired themselves sufficiently to start some milk again or to see if the virus has been annihilated! It is good to be trying something different rather than just sitting around waiting for lymphocytes!! William has been very jolly this week and charging around (lines permitting) so is still in good spirits.

Room 4, Robin Ward, Level 5, GOSH. London

As Father Christmas was brief I will be too. Well we moved this afternoon to room 4 on Robin (Direct Tel 02077626262) the room is larger than William’s old room and we have decorated it to make as homely as possible. We now have our very own air lock, which takes 15 seconds to clean the air before you can go into the room so unless you are going to the kitchen or leaving the ward you don’t see anyone else. So I think Cath is going to miss the Blitz spirit she shared with those who we use to see in the corridor taking it in turns to sit on our one chair. This move does not have anything to do with William’s health it was purely so he is on the same ward as his doctors and to free up a BMT bed for someone else. At present William is getting no worst but also not getting any better. He has not eaten for over three weeks now; his gut cannot handle small amounts of liquid (100ml and we are changing his nappy with in half an hour). The test results came back negative last week for GVHD so the doctors are reducing the steroids and William will be off them by early next week this will allow his immune system to start to develop again and hopefully start to fight the virus which is stopping him from doing one of the basic survival functions i.e. eating. The draw back is by coming off the steroids the chances are increased that the immune system will start to attack William’s liver again (GVHD).
Never play poker with doctors because they must be trained at medical school how to hold a poker face and to keep their cards close to their chest and yours even closer. We know they can’t predicted the future but sometimes if you ask the right question while they are doing something else their guard slips and you learn something (as a rule not good news). This happen to me on Saturday as the doc was looking at Williams tummy I asked how long would it be before William could get rid of the virus his reply was well he needs his lymphocytes to tackle the virus ideally. It can take up to six months for the lymphocytes to appear hopefully they will turn up sooner than that.
To end on a positive note the move to Robin William took in his stride and was smiling when I left him and Cath, as one of his new nurses put his meds down his N G tube.

Message from Father Christmas

This will be short as I’m rather busy. I’ve had a word with William’s doctors and they seem to think that his chances of being at home for Christmas are slim. So this year I will be doing two trips from the North Pole one when I tend to everyone (tin star service) on the 24th and another when William gets home. Why you ask well, I’ve been doing this gold star service since the time of one F Nightingale who was a stickler for keeping her hospitals clean. Basically the more stuff in the room the harder it is to clean the more chance of infection the longer the stay. So if you don’t get a thank you letter by the 26th December it is probably because the present you sent is sitting in the gold star service office ( only the best presents go here) ready for me to deliver once William is home. And remember be good because I will be checking my list at leased twice and there is still time for you to all get coal.
Happy Christmas to all, and to all a good night.

Last post from the Fox! (probably)

Monday pm +67 (although it feels like forever sometimes!)
Had a delightful lunch with Di, I ate my body weight in spaghetti! William is still much the same, although no replacement fluids cos of the puffiness so a bit more time off his lines which he seemed to enjoy (a whole 4 hours!). He has been drinking a lot again so they are testing urine for some stuff. Our exciting advent calender is growing, we are sticking a (wipe clean or washable!!!!) bauble a day to the window (that is the wall to the corridor to share our festive cheer) with clever suction pads in the shape of a Christmas tree (well actually more of a triangle at the moment) but if we need to stick up all 25 it will look nice, although nicer on our patio doors at home me thinks. There are now baubles hanging from the ceiling in the corridor which look really nice, I think the infection control team may also be the decoration taste police and have banned some of the more gaudy tinsel and garlands that I spied in the box!!!! Rob has headed off now and left me with a can of gin and tonic which has boosted my flagging spirits (pardon the pun)…maybe this is the way to get through this?!!

Tuesday +68 Wednesday +69 and Thursday +70Most of Tuesday was spent waiting for the Consultant who pitched up late afternoon with not much exciting to report. I went out for a superb burger in the evening with Ruth and Phillip who came laden with laundry and Christmas baubles which was lovely. Wednesday Dad and Nick joined me for lunch with was also scrummy. I can’t believe how much I have eaten out of late, fancy myself as a bit of a restaurant critic now! We found out today (Thursday) that there were no signs of GVH from William’s biopsy results from his endoscopy and colonoscopy. That’s good news and means that the virus is the major factor in the diarrhoea. They have reduced his steroids a bit (and will reduce them a bit more) as a result to help his new marrow release some T cells which should fight the virus (and hopefully not the rest of him). They will also give him a higher dose of weekly, rather than 3 weekly, antibodies to help reinforce the troops. They have sent off lots of lovely samples to find out more about his poo! Yesterday he drank gallons of dioralyte (his new favourite drink (glad I don’t have to drink it, it’s yukky) even flavoured with blackcurrant) and puffed up a bit and they also had to give him extra fluids to correct a wonky blood gas, today he is self correcting and has hardly drunk anything but I have changed more nappies today than any day that I can remember (whilst my memory is not that good, I’m sure that the increase in nappies is not a good sign, they have also turned a funny shade of green, hmm). He has had a very jolly couple of days though, the music lady came back and he enjoyed playing the cymbal. His spirits have been higher than for a while too and he is being a bit naughty too (I have discussed his burgeoning ‘behavioural issues’ with professionals!!!). As Rob has already published we are moving to Robin ward at the weekend with the pluses and minuses that this change brings. At least it means I have excellent reason not to attend upcoming Fox parent’s meeting to discuss virus issues and cleaning and stuff, hoorah! We have had a couple of disturbed nights (just the usual comings and goings really but sometimes they make more impact than at other times) hence ramblings are bundled together due to necessity of sleep in the earlier evenings.

On the Move

Pickfords have been ordered, as of sunday William will be on Robin Ward so that we can be closer to the team that are in charge of his care and so that someone else can have a BMT for Christmas. Happy St Nicholas Day to Lucy hope all is going well at home.

21 shopping days left top of list one way ticket West

Saturday +65 (1st December)
I met Tasha in Camden Town which was very busy indeed and we had a delicious late lunch and much fun and wine! Otherwise things are pretty much the same, a slightly quieter nappy day due to previous clear out but normal service has since resumed! William is still looking a bit puffy so they are keeping a close eye on his fluids.

Sunday +66
They are still a bit concerned about William’s fluid retention and thought about giving him a diuretic and some other stuff to stop the fluid going into the tissue rather than staying in the blood stream which is where it needs to be to relive his kidneys. His blood results are improved though so it’s really a case of just wait and see what happens. He has drunk A LOT of water today (600mls) without being sick (which is good) but unusual (so may be bad!?) I went down Oxford Street and bought a few essential extra items of clothing (actually one cardi wasn’t essential but is lovely and a girls got to cheer herself up somehow!) Rob went shopping for mince pies and came back with some the size of saucers…yumm! William got a bit overtired this evening (a short daytime nap and then too much going on with the nurses at sleep o’clock) and would not go to sleep and was naughty pulling at his lines and throwing cuddlies from the cot. Eventually he gave in about 9.30 which was a relief to everyone.

Monday +67
I have had a lovely surprise this morning and am off to lunch with Di so am just getting a spot of laundry done (we make rather a lot we still have to have all clean clothes every day) and writing this and a few Christmas cards (feeling a bit organised (don’t worry it won’t last!)) We are not sure what the timescale for leaving might be, will try and broach the subject with the consultant tomorrow in broad terms but think we will be, at best, cutting it pretty fine for Christmas. William as continued to drink for England today so we have asked about this and the doctors say they will keep an eye on it. Rounds where at three this afternoon so William was forgotten again today so we are interested to see how much of an eye they keep on it from the other ward. We have started an advent window each day a new decoration goes up by Christmas we will not be able to see into the ward. Photos of window will appear in a couple of days. William is getting quite good at opening his advent calendars lucky they are both traditional no chocolate. Hope everyones prep for Christmas is going well and remember not to get sucked into the comercialization of it all. And to finish with the words of Tiny Tim "God bless us, Everyone!".

Friday +64 and Saturday (am) +65

William had tummy ache last night and although he slept well it returned this morning. They gave him some meds which seemed to help but he was pretty uncomfy in the meanwhile. This morning he woke up with a blotchy rash too and the doctor came and said, yes it was a blotchy rash which might be due to any number of factors, so thanks for clarifying that! He had some Piriton and it faded in it’s own time. We and the nurse had a hectic time this morning trying to get his pre meds ready, change one of the TPN machines (it wouldn’t hold a charge) and get a doctor to put a canula in by 10.30! (we got the earlier slot). They needed a canula because they don’t like to use the Hickman lines for a ‘dirty’ procedure, the nurse slathered him in anaesthetic cream but of course the doctor found (on his third attempt) a vein on the only bit of him that was cream free! Anyway eventually we were sorted and the porter took us on a trip around the hospital, in two lifts up to the suite, William was already a bit drowsy by then so not too bothered by his ride on a bed with his IV pole following closely behind. We got there and they gave him some more meds and he went a bit woosy then laid down. Rob and I beat a hasty retreat when they started to put a tube down his throat. We went for a coffee and then waited outside. They reverse the sedation and he cried for a bit (which they usually do) so we went in and he fell asleep in my arms. He then slept for another 4 hours without moving but snoring quite loudly! He woke for a couple of hours and then went back to bed and slept all night (more or less). He doesn’t seem to have suffered any ill effects from the procedure. They couldn’t see any visible damage to his insides (which is good) but they have taken tissue for biopsy and the microbiology will tell them more. We should get the results towards the end of next week. They must have cleared out all his tubing because it is very quiet on the nappy front. He has retained quite a lot of fluid over the last 48 hours so has put on quite a lot of weight and looks a bit puffy but they are adjusting his fluids so I’m sure that it will resolve quite quickly.

Exciting developments from the window, they are taking the crane down opposite, using another crane. There are men in yellow balancing very high above the street!

Also Happy Advent everyone!