Thursday +63

Well a bit of paracetamol put pay to the tummy gripes and we both had a good night.
Today has been mostly spent waiting for things to happen and then, of course, they all happen within ½ hour of each other. We met one of the endoscopy/colonoscopy nurses who will be with William tomorrow who seemed very nice and explained the procedure. It looks like we will be in there about 10.30 and it takes about an hour to do both ends! We can see him immediately before and after and even during (although I don’t think we will) he will be heavily sedated and the medicine that they give makes you not remember so he won’t know whether we were there or not and I think it would be distressing to see (think that might be an understatement!). He has had to have a laxative (cos we really need more poo!) and we didn’t quite understand why because he is not eating or having any milk, so they rang to explain it to me (which I thought was excellent). Apparently they really need to be sure (extra sure) that he is empty so that they can see the walls of the pipes and get the best picture. They will also take tissue samples for biopsy because the microbiology will confirm which damage is GVH and which is the virus and any other exciting things that they find (they may find a sequin as we think he ate one earlier and I haven’t seen it again yet!) The laxative has not had TOO drastic an effect (yet!?), there can’t be anything in there extra to come out! Although he does keep opening his bowels as I am changing him with dramatic effect! The new (2nd consultant from immuno and we only joined them last week!?) consultant came by today and didn’t say much really, he did look in Williams ears (which are fine) because he is very unsteady on his feet, walks like a drunk (and I should know) and needs to hold onto something to bend down (both of which he demonstrated very well whilst the doctor was here. They will review his medicines and see if any of those might be causing dizziness or something. Williams kidney function test (the Urea) is a bit high again today although his Liver is much improved. If it’s not one thing it is another! They will keep him hydrated and stop one of the meds for a couple of days (Aciclovir) that is particularly hard for the kidneys to process and hope that things improve. The play assistant also came by today and much fun was had with aforementioned sequins and glue. I finally got out for a breath of fresh air after 4pm. The last couple of hours have been hectic (we let Mum off early for good behaviour because Rob is coming tomorrow morning because of the procedure) so she went to catch her train having helped clear up the pre bath nappy explosion situation (nice!) then we had bath, mouth care, exciting new tractor stories, obs, tpn fitting, the bin lady and now sleep, phew. He will be having a drop of blood later as his haemoglobin is a bit low so they need to crack on and get the other IV meds in first so that it doesn’t take all night!

Wednesday +62

No sign of a removal van yet so we are staying put on this ward for the moment. A quiet night on the nappy front but catch up explosions whilst changing him this morning meant that Grandma arrived to find me standing in a puddle of poo, now that’s a great start to any day!!!! They have had a cancellation to the endoscopy and colonscopy will now be on Friday late morning. The specialist nurse is coming by tomorrow to explain the nitty gritty and discuss and preparations that we need to make so we will know more then. I had a lovely lunch with Phyllis in Covent Garden (courtesy of Helene and George, so thanks!!) and we did a spot of shopping in the market which was fun. The music lady visited William briefly today with her keyboard and drums, unfortunately I missed it but I have seen the pictures and he was having a blast! I hope that she can come again but only does one day a week and covers 4 wards, it’s such a shame there are not more ‘music people’ it gives the children such a boost and must be so therapeutic. William has had bizarrely red feet at about 5.30 for the past 2 evenings, we can’t seem to figure out why, but red feet and palms are a sign of GVH so it may be that. Tonight the Doctor managed to get here before they faded again (they are red for about an hour) and said that yes there was no denying that they were red feet!! He is joined up to an astonishing 5 machines this evening, so much fluid I don’t know where it all goes (that’s not strictly true, we see a lot of it again in nappies!). I must go because he has a bit of tummy ache and needs soothing.

Happy Birthday Lisa!!!!

Tuesday +61

Grandma rejoined us today. The Consultants did their rounds this afternoon and are booking an endoscopy and colonoscopy for William for next week. This will help them see the damage to his insides and work out how to proceed. Until then we continue pretty much as we are. They will cancel it if he makes significant improvements in the meanwhile. His liver function tests are improving with the steroids so that’s good. He has been struggling to communicate what he wants today, partly because he couldn’t really work out what he wanted. He has thrown a few short but very dramatic tantrums which is most out of character for him, I am hoping that it is not due to the mood swings that the steroids bring (already?) and just down to a bit of overtiredness. His blood gasses have been better too with the oral Sodium bicarbonate but now his urea is a bit up which is a sign of dehydration so he will be having extra, extra fluids tonight! His nappies overnight are much improved but not during the day. I think we could consider that to be progress, of sorts. I gave our letter regarding the new restrictions on Fox to Camilla today who read it and said that I raised some good points and that they were having meetings and then some more meetings so they would bear it in mind. There is to be another parents meeting later this week. Jack is moving to Robin, the ward next door (despite the virus?!?!?) and I wouldn’t be at all surprised if we follow shortly. It wouldn’t be too bad, a seasonal change of scenery and you can eat in the rooms on Robin!!!!!! It is the Immunology and infectious diseases (!) ward where our new team of doctors are based anyway and is only a double set of doors away although I don’t relish getting to know a whole new team of nurses, although W might like a few new faces. The parent’s room and kitchen are shared between the wards anyway and there is generally a higher turnover of patients.

Monday +60

What an exciting day with the surprise arrival of Hannah, Nicky and Andy to the big smoke (teacher training day, not skiving!). We went for Pizza then took the tube to Buckingham Palace so that Hannah could see where the Queen lives (!). We walked over to Harrods and paid a fortune for cakes, tea and milkshakes. Andy saw Fulham’s manager (sorry Andy I forgot his name almost immediately such is my knowledge of Football) and Big Brother winner Brian and we bought Christmas baubles and toys. Hannah was an absolute delight and I enjoyed myself so much.
William has started on oral sodium bicarbonate as his blood gas levels remain a bit wonky. He is losing too much fluid to keep his own balance. He is getting ½ replacement fluids (replacing the volume lost in his nappies) to top him up too (an increase from ¼). Unfortunately it will just take time for his body to be ready to try ‘food’ again. He is drinking up to 200mls water a day so that’s a start. The steroids are having some effect at reducing the high score that his liver function/dysfunction results show but that too will take a bit of time. Otherwise his blood counts are all fine. Rob has gone now and I am tired after such a fun day, so will say goodnight.

Madness from Fox

Tuesday + 54
W and I had a shocking nights sleep. We had IV medicines a plenty plus his 3 weekly Immunoglobulins (which run for over 3 hours). He had a tummy ache too so I got him some codeine about 1am which has a similar effect to caffeine on him. Just before 3 he stopped bouncing around and went back to sleep. After disruptions to numerous to list and lots of beeping machines I had my best (and longest) sleep between 7 and 9am. We are having an ECHO ultrasound tomorrow (they thought it would be today but after waiting around they decided about 4 to tell us that it would be tomorrow) to rule out other possible causes of his faster breathing. They are fairly sure that it is because he is losing too much Sodium Bicarbonate through his stools (ooh get me and my medical terminology) and that this is affecting his blood gas. They have adjusted his TPN to include extra so that he should manage without the extra doses that he has been having from tomorrow. Hopefully when (!?) his fluid losses fall the balance will be re-established. Otherwise Mum has joined me until Friday with her invaluable pair of extra hands.

Wednesday and Thursday +55 & +56
William had an ECHO in the morning and they brought the fancy machine to us. With the help of Grandma, Thomas (the tank engine), Hamish (the highland cow) and Lamby (yes, you’ve guessed it, the Lamb) William managed to lie reasonably still for just over half and hour whilst they took lots of images of grey and black swirly stuff and some blue and orange bits (apparently there were shots of his liver and heart but it could have been anything!) Anyway the conclusion is that his heart is fine, phew! (and double phew!). I had a lovely lunch with Granma and Poppa who came up to visit me and we wandered over to Covent Garden too. On our way back we bumped into Claire, Adrian and Lucy (our former neighbours) I was delighted to see them all looking more relaxed and well and hear that they are getting on ok (thanks so much for getting in touch, if you are finding time to read this, which I doubt!). In the afternoon one of our new Immunology doctors came by and had a look at William and proclaimed him lovely! He slept for an incredible 3 hours on Weds afternoon, which was weird but we both also slept much better last night too. He has been quite perky today although briefly managed a temperature of 38. We were summoned to a parent/carers meeting this afternoon regarding infection about which I got a bit stressed and did lots of pacing but as they only gave us an hours notice, the meeting clashed with the new consultant doing her rounds so I got let off the hook and sent Mum instead! (The play assistant also put in an appearance during this very busy hour) Anyway the consultant says that his skin is GVHy and his liver function test is a bit skiwhiff for the last couple of days so they may give him a dose of steroids tomorrow if the ALT’s (whatever they are) are not improved. Also they would have anticipated more of an improvement in the diarrhoea with the cessation of all eating and think that it may be partly GVH too. Good oh! The nappy situation seems a bit better today so I hope that it will continue to improve. He did have some more Sodium Bicarbonate yesterday and they explained that they are only helping to top up the levels and not achieving normal levels which his why despite the Sodium his breathing is still so fast. He is expelling the unwanted stuff by breathing it out. Hope that’s all clear (if it is, can someone pop round and explain it to me!?) Grandma coped admirably as the Curtis advocate at the meeting which turned out not to be the gripe fest that I had anticipated and there was the opportunity to offer constructive criticism. Everyone whose child does not have the Novo (sp?) virus is obviously very concerned (as I would be). It lives on surfaces for 72 hours and is everywhere (!) (not just on Fox ward!) Mum did tell the other parents at the meeting that William had the virus since 8th Oct but fortunately everyone is still talking to us! We were questioning why it had taken 6 ½ weeks for them to spring into action; Jack has also had the virus for at least 3 weeks. William and Jack’s cases may be unrelated and equally the more recent cases amongst the staff may not be linked to either Jack or William. Our fab ‘in the week’ cleaner didn’t do the floor yesterday and we thought he had forgotten but it turned out that he didn’t do any of the floors because they had run out of mops (they have changed to chlorine bleach and disposable mops). How can they not get the floors cleaned on a ward that is ‘closed’ due to a virus?????? They are cleaning the corridor tomorrow (probably) so we need to clear out our lockers and they have turned the nurses room upside down cleaning it. On the grapevine I hear that 13 members of staff have been sick, yet none of the carers/parents!?!?!?!?!? Anyway the new woman next door is fuming, they are private patients (although there is a private BMT ward so I’m not sure why they are here, but I digress) and have paid about ½ million Euros for the treatment here and are shocked to find themselves on a virus infected ward (also griping about having to change her son’s cot sheets, which us common NHS patients do anyway! I hope they get extra nursing hours to cater for their extra ‘needs’ otherwise the nurses will just have to do more or make sacrifices elsewhere). Justina next door was fuming big time just now, she had waited all day for them to change a Hickman line dressing (which only takes about 5-10 minutes) because it had come loose and it is dangerous like that. They were short staffed today but nobody bothered to explain that to her and I wouldn’t like to be on the receiving end of her fury and she had waited an hour for them to answer her buzzer. The TPN has only just gone up and it is almost 9pm. The night staff are now trying to smooth ruffled feathers. Well a rather stressful day all around but William is breathing peacefully now and we have finished with the 3am meds for the moment so we look forward to a more restful night and day tomorrow.

Friday +57
This week has been so tense making, we have lurched from wonky blood gasses to suspected fungal infection and possible CT scan to an ECHO to rule out Pulmonary Hypertension to starting steroids for GVHD I can’t bear to think what they might throw at us next week. William’s liver function tests came back high again so they have started him on Methypredisolone which is a steroid that will suppress his immune system to stop the fight that is causing his liver the problems. Unfortunately it will also hinder his fight against the virus and has a number of side effects including bloating of the face and tummy, high blood pressure and increased appetite (not sure how that last one will manifest itself at the mo). Not sure how long before we will see some of these things but it will be a few weeks of treatment. William’s Cyclosporin has a rather bizarre side effect and is currently boosting his eyebrow growth and he is now sporting a darker, more bushy look that is very fashionable on Fox ward this season (and most other seasons too). I think that this is a fairly usual occurence to need steroids at some point post transplant so we are trying not to be too concerned just yet. His diarrhoea has not improved as much as I had hoped after an almost nappy free changing night and his blood gas is all over the shop this evening so they are topping him up with some more IV fluids and he may have some more Sodium Bicarbonate. Well the corridor clean has gone ahead so is all sparkly and germ reduced. I cried, actually sobbed would be more like it earlier when I found out that they had confiscated my ‘spare’ chair, apparently we are only allowed the one allocated per room (not the additional one that I acquired several weeks ago). Justina next door and I had found it very useful cos there are often two of them too and it means there is, well I’m sorry this is really dull and a lot more complicated to explain than I had first envisaged so I shan’t go on and I am sure we will manage fine but it was the straw that broke the camels back. I was quite worried that a nurse would come in an think that I had taken leave of my senses crying over a chair but I can laugh, well raise a small smile about my ludicrous behaviour now!

Saturday +58 and Sunday +59

Saturday +58 and Sunday +59
Well things got progressively worse last night (not with William), I can’t believe that I was worried about a chair!!!! The ‘acting’ plain clothed sister came round with a letter saying that we are no longer allowed to eat or drink in the corridor amongst other things. They suggest that you ask the nurses to listen out for your child (there are speaker phone type things) and that they will come and get you if you are on a pre arranged break. I simply don’t believe that this is feasible especially as the busiest time on the ward is between 6 and 8pm and that’s when most people want to eat. I am not happy to be away from William when his has lines running to his Hickman line which has a repair on each side. Only the other day a nurse told me about how they had found a child covered in blood where he had twisted himself in his lines so much in his sleep that he had damaged his hickman line. That is SO dangerous and happened within the last few weeks to a child not much older than William who was being supervised by the nurses overnight. The older children can be more easily left because they can ring the bells for assistance and can learn and understand why they are not to pull at their lines but you still can’t guarantee how long it will take to a nurse to turn up to see if they are alright. The situation is highly unsatisfactory and now means that we have to eat in shifts away from the ward in a grotty room with 2 small dirty, soggy sofas and no windows. There could be up to 40 people eating in that space if each room just had 2 of their 3 carers on the ward. Anyway in the wee small hours of Saturday night I woke up and wrote down our concerns regarding this and some other issues in a letter which I am getting Mum to print off at home and will give it to them on Tuesday. I felt a bit better and constructive after writing it having felt utterly miserable and powerless. I appreciate that they are trying to protect the children from infection and some of the changes around the place are really positive and overdue but it is so hard to relax and maintain relationships here that it just feels that they are taking even more away from us and I want them to at least appreciate what the changes will mean to families. Rob and I did had a nice Saturday evening watching a film on the laptop and William slept soundly through most of it. I was a sad and grumpy bear on Sunday, not cheered by eating alone and spending a not inconsiderable time sat next to a tumble dryer doing the laundry (the change in Rob’s visiting patterns means that I can no longer take advantage of Granma Curtis’ superb laundry service, boo). We cheered ourselves considerably in the evening with secret consumption of chocolate in the room (!!) and watching my extravagantly purchased box set of Cold Feet. It made Rob laugh so hard that he woke William up!!!

Breathless in London

Friday 16th +50
Today we had our first excursion out of the room for 57 days! We were expecting a repeat x ray but were most surprised when our nurse turned up and said ‘lets go, they are waiting for us in x-ray’. Once Mum and I had recovered ourselves, she did explain that they get a better picture and that it had been checked with Infection control so off we went with time to grab a jacket for William. He was a bit overwhelmed by the short trip down the corridor, into the lift, then a hundred yards or so on the other floor and back. He was wide-eyed and clinging on to me. Those 57 days have obviously had an effect, we will need to introduce him gradually to the outside world again and I’m sure it won’t take him long to readjust. William was sick again today but just after they had dumped 100ml of water in his tummy so it wasn’t that surprising really but unfortunately most of it went over Grandma who rushed back in as we were stood watching him through the window with the consultant at the time (She had to have a shower later to wash those germs right out of her hair!). He does have a nasty cough but the x ray showed that his lungs are no worse. They are going to rationalize his antibiotics to see if that helps with the diarrhoea because contrary to my earlier optimism things have not improved. It seems likely that it will take a couple of weeks (possibly at least, but hopefully not at least) to get back on track and homeward bound if we don’t have any other set backs.
I feel, for the first time that his care has been mismanaged today which is disappointing. The nurse gave him his antibiotic (the purple face inducing one) without the Piriton first and at twice the rate he has been having it. I did notice the rate difference but not until mid way through because he had been asleep and he was a bit red when he woke up. Fortunately the reaction was milder anyway but it does make you worry, although she did apologise for her mistake. Also the Doctors instructions about his fluids have been ‘misunderstood’ and she has just been in to explain that he is a ‘bit’ (! Quite a lot I should think if she felt the need to come and mention it) negative with his balance and they have just chucked some more IV fluids up. His hands and feet are cold and are slow to recolour when squeezed (and have been for a while now and his breathing is quite fast) these are signs that often accompany a temperature and indicate infection (because all the white cells are gathering at the infection site and miss out the extremities) but also can be a sign of dehydration so in W’s case it may be a bit of both. Fortunately nothing serious but it knocks the ‘blind faith’ that you need to have in those making the decisions and interpreting them.
Rob is arriving later bringing my favourite cheese and tomato topped circular bread based product and is staying (in a dad’s dorm of 3!) so it will be great to have him around.

Saturday 17th +51 Sunday +52
Last night they tested Williams blood gas and things were a bit skiwhiff so they gave him some Sodium Bicarbonate. He has since had 3 more doses which will help him balance his pH. His breathing has been fast again, he had those cold fingers and toes and he had a temp of 38.2 on Saturday afternoon so Rob had a visit from the weekend consultant (now that’s alarming) and they decided to continue with all his antibiotics and have added an IV anti fungal just to be sure they have all aspects covered. The first dose required an even smaller test dose which, of course ran up to midnight and then the dose for an hour or so after that. Why do we always end up starting these new things at night!? Since then his temperature has been more stable but a bit higher than average. His nappy situation has not improved and he is having ¼ replacement fluids. He has been perkier today (Sunday). The weekend Doctor has been very thorough and popped back to see all the children before she left which was very impressive, although we prefer to not see the Dr’s more than once a day cos usually it’s not a good sign! I met Tasha at the V&A for a wander around and a chat, we did more chat than looking (which is the way it should be) and it provided a nice backdrop. Rob and I have been eating expensive (but delicious) takeaways all weekend because of the kitchen closure. It will have to be pot noodles for the rest of the week as we have blown the food budget. The nights have been quite disturbed with the late anti fungals and the 3am antibiotics continuing and we still have the 6 ish IV’s as well as the 4 hourly obs and he has been a bit restless and needing extra nappy changes.

Monday + 53Rounds today and I’ve changed my day during the week to come up to see William and Cath and it’s a chance to meet the consultant, only he didn’t come! The news from the rounds is William may well be here for about another four weeks until he is able to tolerate a level of milk feeds and get off the TPN without getting dehydrated. They are giving the graft the best chance to fight the virus by reducing another of the immunosuppressants. Unfortunately there is not much else that they can do. At least we are only fighting the virus, his blood results indicate that the transplant remains a success and the virus is the cause of the diarrhoea rather than GVHD. William has come off one of the antibiotics and will come off the anti fungal in the next couple of days as the doctors now believe that W’s fast breathing is due to the acidity of his blood caused by the diarrhoea. The day has been spent hooked up to try and get more fluid into him but this has not stopped him playing when he felt like it. We will probably be transferred to the care of the Immunology Team rather than the BMT team but we won’t be moving rooms because of the virus. I don’t think that this will really make much difference. We are obviously disappointed by this lenghthening of our stay but as you hear so often on Grand Designs, we really hope to be home for Christmas.
We do not normally like to list what people have given William during his stay at GOSH as everyone has been so kind but a big thank you must go to B for the lovely suprise of a get well card from William's favourite sheep dogs down in Devon. When I got home there was also a large package containing a Photograph of all the dogs from Borough Farm. So I'm off to buy a frame so it is hung ready for the master return.

Reporting live from Holburn

well it's day 50. lots of beeping machines last night but nothing else too eventful to report. expecting new neighbours later today. sorry not to have posted all this 'stuff' sooner suprisingly busy. thanks for your lovely comments folks. bfn C xx

Thursday +49 (day 50 tomorrow?!)

Today has been busy actually. I had some training on a milk pump that we will be discharged with, fairly straight forward and we get helpline numbers anyway. ‘They’ whoever they are will coordinate deliveries of milk feed, ‘sets’ (the line that the milk flows through) and containers etc and the actual pump in due course. Bit tricky at the mo cos we don’t know what we will need but time will tell, as it so often does. Mum and I had lovely toasted paninis for lunch from Starbucks (due to kitchen closure) and have had a lovely posh picnic tea with sarnies, crisps, wine and choccy puds! William was rather unsettled this afternoon but slept for an extra bit after some codeine. He was very brave when they took some blood from his toe to check the antibiotic levels (they can’t use the hickman line because sometimes there is some residue in the line which gives a false reading). He does have a chest infection but already is taking sufficient antibiotics to cover it but they may repeat the chest x ray in a couple of days if he doesn’t seem any better. Sadly they have stopped his milk entirely now to give his tummy a complete rest. His TPN has increased further (and will be 16 hours tomorrow rather than 12) and he is having continuous IV fluids. He is also having no food now again, just sips of water. This feels like a huge step backwards (which it is) but it will hopefully allow us to make huge leaps forward in a few days! The nappy situation has improved as a result!

Wednesday +48

I had steak and wine for lunch with Dad today YUM! We had a lovely time although sadly he wasn’t able to come onto the ward. They are shutting the parents kitchen for 48 hours too for a deep clean which will be a bit inconvenient but better than us ALL getting the virus. Lucy went home today HOORAH. I was so happy to see her heading out with her coat on in her buggy and her parents laden with bags but also a teensy bit sad (well actually I confess to having bitten my quivering lip rather hard and then having to reach for the tissues as they disappeared from view). Claire has been a great support, always a wise word or two and I shall miss such friendly, cheery neighbours but wish them a happy new beginning (should I get a job at Hallmark?) Actually the other day, Rob and I were only discussing a gap in the card market we were wondering about a ‘Thank you very much for being my bone marrow donor’ card! No reaction to the antibiotic that ran between 3.15 and 6am although William did think that he would bounce around the cot for the first hour or so just to be sure. I confess to having fallen asleep when the flush was running but did catch forty winks mid morning and had our morning consultation with our doctor (who is lovely and doesn’t look at me as though I am odd and W likes him too) with the blanket still wrapped around my shoulders and my hair standing on end (maybe that’s why the others think I am odd? Or am I just paranoid? (rhetorical question, they really are talking about me behind my back (ha ha) no really, they are)) (having re read that I would like to prevent misunderstanding and point out that I was fully clothed). Otherwise we have taken some backwards steps the nappies situation is not improved (and by the sounds of it there will be another for the pile in a mo, but that’s probably more info than you really need) the milk feed is running at 5, he had to have water down his NG tube, he was sick twice (but they did stop one of his anti sickness meds! which is now available ‘as required’ which btw I can’t quite figure out, what wait until he’s sick and then give him a dose and then wait until he is sick again?!?!) his TPN is up again and for the first time he is getting the ‘fat’ element with extra calories (it seems to be a bag of which stuff containing ‘fat’) yummy but hopefully all this will help, one step back and two forward or something?!?!?!?!!? By the way my reflexology was most interesting and relaxing and only a teensy bit tickly on two occasions, I am glad I took the opportunity. Must go now, sleep to catch up on and meds to look forward to at 3 yikes! (just felt like using the word yikes, have gone a bit Scooby Doo!) defo time for bed.

Tuesday +47

Rob was with us bright and early this morning with only a 4 minute delay on the trains! I had a lovely trip to the Science Museum today to meet (Aunty) Karen who was on a King Alfreds trip with just the 180 students! It was great to catch up. This afternoon William had a bit of a reaction to one of his newer antibiotics, his whole head went a bit (well quite a lot, actually) purple. It’s a common side effect that they call Red Man for obvious reasons. Normal colour has resumed but lucky for us, the next dose is due at 3am (!) so will make sure that I keep a close eye on him then. The milk feed has come down in volume today so the TPN is up again (boo!) but the nappies are a bit improved (hoorah!) He has been a tired bunny today again so hopefully that is just his body taking the time to repair itself and muster troops to attack the virus.

Monday +46

The beginning of week 9 and NOT going home this week (unless there’s drastic turnaround with the fluid intake output situation) so rather depressing situation battling this virus but on the up side am having my first ever (complementary) reflexology session on Wednesday and am quite excited although nervous about having tickly feet (not sure that’s really the up side at all but am desperately looking for silver linings!). The ward is closed to visitors for another 72 hours as another member of staff has bug. Saw rather scary suited Infection Control lady this morning with clipboard and tweeds so if the virus saw her I expect that it legged it. We had surprise chest xray this morning. Out of the blue the radiology girl and her portable machine arrived. I was quite frankly a bit annoyed that nobody had thought to mention it to me but anyway it’s good that they are ruling out any bacterial infections. Neutrophils are back up a bit, no one else concerned, must stop worrying unnecessarily! Consultant handled me with kid gloves this morning when discussing the not going home situation and the other doctors looked at their shoes a lot! I think they thought that I might have got a bit emotional but really I had realised that we can’t look after William at home as things currently stand. The moving hospital thing is really off the cards at the moment too, no one wants us….well not with this virus. I had a very tasty slice of Jack’s 1st Birthday Cake made by the hospital green kitchen. We got the new Shaun the Sheep DVD today which made William laugh out loud. He ate Jelly Tots and maize crunchy crisps and slept quite a lot and it only felt like Grandma had just arrived when it was time for her to leave. I walked up to see the new St Pancras station, there’s a fair bit to do before it goes international in a couple of days time! The shops are mainly opening in December and next Spring but it is an amazing building/space, I do like a nice train station!

Saturday and Sunday +44 & +45

William and I have had a good weekend with Rob. It made the weekend feel much longer having him arrive on Friday. William’s temperature has been grumbling up to 38.4 and then down again and then up again. His neutrophils are under 1 again today. His nappies have been frequent and his poor little botty is so sore with the Thrush, he had codeine earlier to take the edge off the pain at nappy changing time. He is a bit bored but we spent a bit of time with glue and felt tip pens today so he has some interesting glittery bits and some unusual tattoos! The ward is currently closed to visitors to try and keep a lid on the virus that William and Jack have, they think that Unfortunately Grandpa was going to come up tomorrow for the day to see me and William, he has rescheduled for Wednesday in the hope that he will be allowed on the ward by then. William slept well yesterday evening and Rob and I watched Harry Potter and the Goblet on the laptop without disturbing him which was fun. The ward round will be in the morning when I hope they will be able to say when we can go, although with the temperatures I am not sure they may well defer the decision for a couple more days but who knows? He is still on the TPN and they haven’t switched the Cyclosporin to oral yet but I know that they are desperate for rooms from Monday week! Also need to get milk pump training sorted and on top of feeding a bit. He did eat quite a lot today, some more crunchy maize snacks, wafer biscuits, half a fruit pot and a bit of Daddy and Mummy’s muffins (that last thing didn’t fall quite within the dairy free guidelines (he is supposed to be on wheat again by now but hasn’t fancied the toast or anything else wheaty offered) but he liked it and we think that is important too (and so does the dietician)!

Live from Tuttis (my internet cafe!)

It's all storms in tea cups. William's temp is still up and down but not a real cause for doctorial concern (just parental!) No oxygen required although his breathing today is still quite shallow and fast but I digress. Lucy is OK, her Mum says that she has a leaky valve in her heart due to all the chemo but that they can treat it with drugs and keep an eye on it but at least it explains why she has been needing a bit of oxygen. Clare (her Mum) is SO brave and seems to take pretty much anything in her stride, I am sure that I, like many others would be freaked out by developments of that sort. I really admire her. She has said that at times during her illness they have cried for days but I have never seen her less than together (but not in a cold uncaring way) she always finds time to wave at William through the window and find out how we are. She thinks that they are still on track to leave at the end of next week. Rob arrived safely last night and W woke up to say hello shortly afterwards and they had a ball! He had some blood overnight to boost his haemoglobin but otherwise nothing much else to report yet. Back to watch Babe later on, even W has tired somewhat of Tractor Ted!!!!

Friday +43

Am tense today. This morning I left W for ½ hour with a rather glamorous volunteer (she works for the charity side of GOS attracting corporate and personal donations they are aiming for 50 million this year and have got 10 million from those lovely people at Morgan Stanley, there are some children here who have never been home because they are so poorly and the current facilities do not allow a parent to stay in the room with them) whilst I went to accommodation services to get Rob a room for tonight and tomorrow, which I did.. hoorah. W didn’t think much of being left with her and apparently ‘took a while to settle’ but was happily sitting on her lap reading a book when I returned. He also smelt of expensive perfume after she had left which was kinda weird! The consultant is still pleased with W and hopes we can leave here next thurs/fri and GO HOME!! Must not count chickens until we are in the car but it’s a promising indication. Anyway I am waiting for Rob to arrive now and can’t wait (not just because he is bringing Pizza!) I think that Lucy next door isn’t doing so well and I am so scared for her and her lovely parents. She (and they) have been through so much (she has had 6 rounds of chemo in 7 months prior to her transplant) and were at one stage likely to leave next week. Now W has a temp of almost 38 again and his oxygen levels are a bit low and the nurse is getting another probey bit just to be sure. Aargh, also being here on your own is really no fun, am such a wimp. Tried to be creative yummy mummy this afternoon but only had water colours which are a bit sophisticated to use with a 21 month old and a spare mouth swab sponge! We have played with most things quite a lot (but this is NOT a plea for more toys) what we really need is not to be stuck in this room (bloody virus!) (and to get safely home!) W wouldn’t eat any of the delicious morsels offered to him today except for 4 organix crunchy thingmy bobs which is also frustrating (although at least it is not my home made delicacies that I am chucking in the bin yet!) I have drawn up W’s medicines today and given them. He needs and will continue to need for a while medicines 6 times a day and all in all today I will have given him medicines 26 times (not all different things) today!

Thursday +42

Robs train was very delayed this morning due to a fatality on the line but he got to us in the end at around 11. William went to sleep 45 minutes later with a temperature of just over 38 and Grandma arrived shortly after. Rob and I went off for a delicious meal and a short walk (mostly around Waitrose)! It was great to take a break together. William has been given some antibiotics as a precautionary measure although they have taken a nasal swab and blood cultures they like to get a pre-emptive antibiotic strike in rather than wait for results. His temperature has come down a bit now. Rob and I had our going home talk today. The going home guidelines are pretty comprehensive. Apart from all the medicines, community nurse visits, milk feeds and hospital follow ups there is quite a lot that we need to be careful of for the first 6 months post transplant until the magic day when those lymphocytes get going. The talk took almost 2 hours and we didn’t cover the medicines or milk feed aspects! There are quite a few restrictions about food and contact with ‘strange’ people in public places. The good news is that we can welcome healthy visitors to our house! Interestingly the different transplant centres in the UK offer different guidance. GOS say that all fresh fruit and veg is fine but apparently Bristol say only tinned or frozen for 6 months!? The team here have spoken to both Bath and Bristol so we will be in safe hands if we ever need local help and we can call here 24 hours a day for advice too. Coincidently Lizzie (immuno nurse specialist) called during the talk and we will be with Prof Adam Finn (as seen on the news this morning by my Mum talking about chicken pox vaccines!) who we know has worked with WAS transplant children in a previous role (his role now specialises in Immunology) and we have seen him and his team previously in clinics so that’s good. There’s lots to organise with the local community and hospital nurses but Nikki was very impressed with how helpful and positive all the people that she needs to liase with in the west country have been. I put William’s evening medicines down his NG tube for the first time! The scary bit is drawing them all up which I have to do tomorrow..ahhh..hope we get one of my more favourite nurses! We also made a landmark move to oral Aciclovir today! Only one IV medicine to go (not counting the antibiotics that he started today!). I have just spoken to Jill, Jack’s Mum who says that it’s his first birthday on Monday. It’s such a shame, they were so close to going home before he got the virus and now I think they will be at least another week or so. I stood there thinking that I was sure he was only 10 months old but then realised that of course he was when I first met them!! Time in here feels like it has stood still a bit, but that ‘other’ world keeps on turning. I believe it is now definitely Autumn and that we are hurtling towards Winter and Christmas!!

Wednesday + 41

Today I had a lovely lunch and catch up with Nicki and Ruth. Granma Ruth was able to come and spend some time with William to everyone’s delight. William has been a bit on the toasty side today and reached 38 degrees at one point so time to go to Bath! (previously we had to take him to the childrens ward at Bath hospital if his temp reached 38!) I’m fervently hoping that he doesn’t have an infection in his Hickman Line, the ends had a bit of a dunking in poo during a nappy overflow situation last night (not for the first, nor I expect the last time) anyway they all got cleaned up and the ends changed this morning and they have sent off cultures. His nappies have been a bit worse in frequency over the last 24 hours so rather than replace fluids IV as they did last night they have turned the milk down a bit. The extra nappies also mean that they have delayed the change of the Aciclovir to oral from IV until Friday if things are improved by then. They have also not reduced the TPN so we are a bit behind schedule for leaving next week but there is still hope... It’s a big day tomorrow, Rob and I are going out to lunch, together! It will be the first time that we have done anything together outside fox ward since W went into isolation (that’s about 48 days ago). Also its our ‘going home talk’ and Grandma is doing overtime so that we can relax and concentrate in the knowledge that W will be happy with her rather than random nurses. Not much sleep last night and have just got W back to sleep so will sign off and make the most of the moment of quiet (a noisy nurse is due to do some obs in a few minutes) and am typing in the dark and realising that it would help considerably if I could see the letters, my tiuch tyoing isn’t quite up to scritch!

Tuesday +40

Today we had a visit from an excitable dietician who assures us that she will get us home! We are to introduce a bit of wheat (and she means a bit, a ¼ of a slice of toast) in an attempt to make William’s food more exciting and enticing. After all because of the gallons of milk that he is having put straight into his tummy he is not that hungry anyway but they don’t want to stop his feeds and wait for him to get hungry cos he (even W!) is too little for that and they need to stay big and strong to make lots of white cells and stuff (that’s a technical term btw). They do it that way around with older children although not necessarily those whose guts have taken a chemo hammering. By Friday he may be allowed a teaspoon of fromage frais (although sometimes they need to wait another month for Dairy). William is asleep now. His nappies have not been too bad today until this evening when he chalked up an impressive three nasties in an hour! The volume of the TPN is back up a bit to give his kidneys an extra flush today, a couple of his levels were a bit wonky (don’t ask me which!) but we are still hoping that he will be off it by the weekend. The folks on Fox need all this extra fluid to counteract all the dodgy chemicals (sorry, medicines) that they are still getting chucked into them. The docs have changed their minds about the Cyclosporin swapping to oral until Friday, instead they are going to swap the Aciclovir over from tomorrow (if they remembered to change the prescription). It’s all quite exciting, it will mean less time on IV lines and a happier Mummy because they won’t need to be in and out so much in the evenings and will therefore have less opportunities to wake W up! (the Aciclovir usually doesn’t finish until after 11pm and the next dose starts anytime from 4.30am depending how annoying/organised the night staff are feeling!). The hospital clowns (no, not the doctors, the ones with red noses and big shoes) came down the corridor today and William looked horrified, cried out and legged it back across the room to me and Grandma. Not much therapeutic value for him there. What is it that is so creepy about clowns? Congratulations to Carolyn, Kev and Harvey on today’s arrival Aeryn Faith, love and happiness to you all.

Arctic Fox

Got those Crocs...yeah!!!

The weekend

Saturday +37 and Sunday +38 and Happy Birthday Rob!!!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!

The Fox Report

Monday +39
The consultant saw W this morning and isn’t too concerned about the rash, still it is quite hard not to worry. Otherwise it looks like Bristol is really full so we will have to go straight home instead…hoorah! They are sorting out getting us a pump and training for the milk, so that we can do feeds through the NG tube at home. Rob and I are having our ‘going home’ talk on Thursday which takes an rather comprehensive 2 hours. It doesn’t mean that we are actually going just yet but at least we will be ready. I am hopeful for next week if we keep on as we are. We will also start doing William’s many medicines ourselves under the supervision of the nurses so that they are confident that we are up to speed with flushing the tube and measuring quantities etc. William was a jumping bean again last night and didn’t want to go to sleep but was obviously feeling a bit icky as he was sick 3 times in 2 hours. Not too much each time but lots of cuddles and clean sheets! He crashed out at about 11. They are going to change one of his medicines (Cyclosporin) from IV to oral this week which will be interesting. They can measure the levels in his blood to check that his is absorbing enough and that it isn’t coming straight out of one end or the other. William has a new book with Thomas the Tank Engine that has several buttons that make a noise, Grandma had him in hysterics last night by jumping up to salute each time he pressed the fanfare button. It was hilarious, it was great to see him having such fun. He has drunk some water today and eaten a couple of wafers and slice of wheat free honey cake! I am still trying to see the dietician for advice, I think that they are happy for them to eat just about anything at this stage, just as long as they eat, there are baskets of chocolate and all sorts of goodies lurking in the fridge for some of the other children. Took my mouldy jaffa cakes back to H&B and did get my money back but am not sure that the assistant really grasped the concern that I had about taking mould onto a reverse isolation ward! However he did assure me that he would check the rest of the stock.

I think that for once in my life (no, not the thinking bit, wait for it) that I have said nothing when I should have said something. I didn’t know what to say and wasn’t sure, anyway I want to say how sorry we were to hear of Roy’s death and would like to send love and condolences to Mary and everyone who loved Roy.

Congratulations

Congratulations to Richard and Fran on your engagement, I am really pleased for you both, Catherine x

Update

Wednesday +34 and Thursday +35 (5 weeks!)
Well its all go as usual here. William ate some carrot (and only threw a bit of it up again!) and I had a Square Pie lunch with Dad and Phyllis (which, apart from me knocking over and breaking (the fortunately, empty) wine glasses)) went very well. (ooh the bracket count is quite high already this evening). Jack has the same virus as William and that’s a bit of a concern as they have never been in contact with each other, but it is quite a common and the nursing staff are meticulous with their hand washing and apron wearing. There’s lots of talk this end of the ward about transferring to local hospitals (or hopefully going home) so that’s encouraging. William took his own nappy off this evening whilst he was in his cot, supposedly trying to get to sleep!!! Fortunately I spotted his bare buttocks before and leakages occurred. I was suitably straight faced as I explained that taking nappies off is not a fun new game! William ate a few teaspoons of chocolate soya pudding today but was also sick (quite a lot, but not the NG tube (phew!)). His milk is up to a massive 33 mls/hour which everyone is very pleased with. Certainly one vomit a day would not prevent us from leaving, neither will a few sizeable runny nappies apparently, but will mean that our washing machine has to earn it’s keep! I will miss the hospital and Granma Curtis laundry service very much!!!! William has a nasty dose of oral thrush which we spotted today and this may well be another reason why he is so off his food. He is on an antifungal medicine which should help and they may give him some other stuff too in due course (he is asleep now and the doctor has been otherwise tied up for the last 3 hours apparently and unable to inspect his wide awake mouth, well perhaps I should just be glad that they don’t want me to wake him up to have a look!!!!) I went on a trek to the nearest argos today and came back laden with storage boxes (Rob is planning our great escape and storage boxes play a key role in the packing and loading/unloading section of the plan) and digital bathroom scales (so that we can keep track of William’s weight when we get home) which were pretty cumbersome (ooh, like that word, must use it tomorrow) (the boxes, not the scales, obviously) to carry miles (a tiny exaggeration) around the streets of London with my beloved laptop on my back and I did get an odd look as I burst (literally) through the door of the internet café. Anyway this evening I was quizzing our poor nurse about the capacity of the tubing and working out how much the flush needed to be depending how long the tubing was, as it does seem to vary in both length and external and internal diameters for each thing and then I realised I really have been here to long and need a new hobby! Which reminds me. this morning our lovely night shift nurse, who is still having her IV training, had the (slightly scary, although not the scariest by a mile) senior nurse go through with her what she needed to do and then left her to it and the poor girl was mortified shortly afterwards when she realised she had taken the blood for his morning counts from the wrong line (they get odd readings if they use the one that has had a certain thing going through it) and hooked up the IV drugs to the other one incorrectly (although not started them, it wouldn’t have done anything bad, they just routinely us certain lines for certain things) (cos by default, if there are only two choices and you choose wrong once, you will choose wrongly again, assuming that the second time the first choice has been eliminated, leaving you effectively without a choice, confused? Me too but I have a feeling the more pedantic amongst you (and yes I do mean you, Nick might find (and still might) find a flaw in my reasoning (and if that’s not laying down the gauntlet I don’t know what is)). Anyway as I was saying before I was interrupted by one of my many alter egos (yes alright, Harriet (it’s a HPPC thing!)). The other nurse came back with fresh drugs, flushes and all that marlarky and it wasn’t a problem. I popped to the desk a bit later to hear her telling all the other nurses how awful she felt but really she handled a genuine mistake very well and I did reassure her that W didn’t mind giving her a tiny bit of blood for nothing.
Well I really must stop rambling now, no, Harriet you can’t have a turn, before they send for the men/women in white coats or wake up my son.

Friday +36
We waited most of the morning for the consultants round. They finally pitched up about 2. We can’t go to Bath, they couldn’t manage his level of care as it stands now but Bristol may be a possibility although they are not actively recruiting new patients, the consultant is going to call them himself and use his west country links to see if they can find us a room (we would need to be isolated because of the virus). It is a possibility for the week after next…but who knows by then Master Curtis may be feeling much more like eating and drinking?! He ate about 8cm of banana (he was only offered that much, portion sizes are necessarily small) today hoorah, but nothing else (actually he did eat about 20 rice crispies this morning but was immediately sick!) Williams blood counts are a bit on the low side again but with a bit of luck he will be busy making some more ready for tomorrows recount. I had a terrible nights sleep, just one of the nights and he had his Immunoglobulins which didn’t start until after midnight and necessitate extra coming and goings but he slept pretty well. He (and I!) had a late nap this afternoon and as a result he is bouncing around his cot (literally) shouting “uh oh” and “baa” at top volume trying to attract attention, oh it turned out that 2 of his cuddly sheep had jumped overboard and he wanted them retrieved, silly mummy for being so slow on the uptake! Not sure if I have mentioned it but William is getting pretty good at waving and even says bye now, it’s all the extra practice from all the comings and goings. Still trying to establish please and thank you with no success yet.

PS

Best wishes to Great Uncle George, I hope you are not too sore, I am sure Helene is taking good care of you. C, R and W xxx

News from fox....

Monday +32 and Tuesday +33 (and Happy Birthday, (Great!) Uncle Stuart!)

William was sick on Sunday and Monday evenings, boo. He has been nibbling on rice cakes but not much else. He refuses his chocolate milk now too. Today (Tuesday) he has refused his generously portions half slices of wheat free toast with Marmite too and has hardly drunk anything so they have just dumped (well, over an hour) 100mls of water down his NG tube so we will see if I get to see that again later, he is sleeping at the moment so who knows? Sadly, Jack didn’t get to go home today as he was sick a few times and they need to be sure that there is nothing sinister brewing before they let you out. William seems to be holding his neutrophils levels just less than 1 at the moment (they like them to be more than 1 (maybe they are sociable things!)). As of Monday, they are reducing one of his immune suppressant meds. This will release the T cells from his new donor immune system so hopefully they will start fighting the virus, boost his neutrophils and white cell levels and generally make themselves more at home! There is a POSSIBILITY that we will be transferred to a local hospital in a week or so. If we can get off the TPN (which would mean W was able to eat, drink and digest enough nutrients etc) we could even go home!!!!!!!! If we can’t get off the TPN that soon (and to be honest it doesn’t seem like a real prospect at the moment) then we may go to Bristol Children’s Hospital (they are a BMT transplant centre and we do know the Immunology Consultant and his team there, who does have previous experience of WAS transplant children). I am assured that they would work closely with GOS and it might save us outpatient trips to London, if we can go to Bristol instead. Lucy next door may do the same to her local hospital. I think they want to clear a few beds. There must be a lot of poorly children waiting for a space on the unit and if our needs are more post transplant and nutritional then it’s right that we move on. I will keep you posted, we did mention to one of the more senior nurses today, looking for some confirmation/clarification who said, and I quote ‘sometimes the doctors do get some funny ideas in their heads’. It is generally advisable to hear the same version from at least three sources before getting too excited about anything (even the availability of straws, which incidently there isn’t any availability of (again! (did any of that make sense))) The exciting news of the evening is that the buzzers are working!!! Buzz buzz…although having pressed mine over 10 minutes ago am now not quite so sure! It is a very busy time and the evening shift take over in 20 minutes or so. Earlier there was a rather scary moment on the corridor when Eldaras’ mum pressed the emergency buzzer and the doctors and nurses really did appear from nowhere within seconds (which was v impressive and quite reassuring). He is fine (well fine ish) he has a v high temperature, chest infection and had his marrow yesterday his monitor was showing quite low oxygen levels, hence the panic but the levels are back up now.Apart from all the medical stuff W remains very much ‘himself’. He had a lovely time with Grandma on Monday whilst I had a scrummy lunch with Bryher. He enjoyed watching University Challenge last night (it was, post being sick recuperation time for the two of us)! He had lots of fun with Daddy today whilst Mummy went on a shopping mission for birthday presents, treats for herself and a lovely fleece for W for Christmas, or as a going outside again present! Today he made an Excavator out of mega blocks and pointed at the one on the TV then to the one in his hand! Who knows what tomorrow holds.