William and the BMT

Day +365

2008-09-28T12:49:00.003+01:00

It is now 365 days since William received his stem cells and his new immune system. He continues to amaze and delight us. We have all come so far in the last year and it means so much to have had you share our WAS journey.

This will be our last entry on this blog. I pray we will never have cause to start another but we have found it quite therapeutic chatting to our computers and sharing our experiences with you all.

If you ever wonder how we are and think of looking at the blog, give us a call or send an e mail instead.

If you have stumbled across our blog and find yourself in need of someone to chat to about bone marrow transplant or Wiskott-Aldrich Syndrome then do send us an e mail.

with love
Catherine, Robert and William xx

We walked (and cycled) to the beach....

2008-09-21T13:22:00.003+01:00

Wow! Together we have raised over £10,000. Jeans for Genes and The Sick Children's Trust both want to pass on their thanks to you all for your efforts and to your generous supporters. You are an amazing bunch!
Lots of pics at www.justawalktothebeach.org

News

2008-09-05T18:45:00.003+01:00

As they say, no news is good news and William has continued to do remarkably well. We are not back up to GOS until February and the one year BMT anniversary is looming but before that it's Just a walk to the beach.
Just in case, dear readers you don't know to what I refer, this is our fundraising event for Jeans for Genes and The Sick Children's Trust. Many of our amazing families and friends (or as I think of them extended family) are travelling over 2,200 miles and getting sponsored to walk and pedal their way, carrying a surfcraft to Saunton Sands in North Devon for the big finish on Sunday 14th September. How mad are they? We are thrilled by their involvement and bowled over by their support. So thank you all, for everything and good luck and safe travels to you all. For more details see www.justawalktothebeach.org
We will post piccies here and on the Just a walk website so keep your eyes peeled.....

Update

2008-06-30T12:42:00.003+01:00

Happy 65th Birthday Dad and Happy Birthday Nick!
We are all doing great! William is well. Recently he had a high temperature which resolved without antibiotics, that immune system is really doing it's stuff. We also thought that he might have been getting chicken pox after a close encounter but we gave him a precautionary extra dose of immunoglobulins and he didn't, phew! Mum has had her last dose of chemo (fingers crossed) and is recovering from that, she has been amazing through it all. We are just trying to do 'normal' things and make the most of everything. We went camping the other weekend in, yes you've guessed it north Devon and even managed to fit in another 'Just a walk' press interview!
Thanks for checking in on us.
Love to you all.

3rd June

2008-06-03T19:57:00.002+01:00

This brave and inspiring man has only just come to my attention, where have I been? This is a very honest and massively moving account by Adrian Sudbury about his battle with leukemias and through bone marrow transplant. He is using the time that he has left to raise awareness about bone marrow transplant http://baldyblog.freshblogs.co.uk/

Just a launch on the beach

2008-06-01T18:34:00.002+01:00

We had a fantastic day on the beach at the launch party. To see some pictures go here....www.justawalktothebeach.org/pages/morepages/gallery.htm

We had a digital camera treasure hunt, won by Andy and co (some very impressive sprinting to the carpark to get the camper van shot clinched the deal). Special mentions must also go to Ben and Sophia for moving the least and getting all the shots, zooming in on a camper van on the road was certainly a clever move, Nick and Bryony also showed exceptional dedication when they went to the beach shop and asked if they had a turtle that they could photograph (and after some rummaging in the store room found that they did!)

The sandcastle competition was certainly sandy. An impressive number of castles were built, beautiful flags displayed and a mermaid crafted. However the winners were Nick and Bryony with their inspired coffee and cake castle.
Thanks to Grandma Sue and Granma Ruth for their exemplary judging.

The leaky bucket relay was hilarious. The sea was so far away that we dug a well to race to but water supplies were limited so buckets of sand made their was back rather than water. After some questionable but highly effective tactics by Nicki the girls team were victorious.

Nicki made our delicious 'just a walk cake' with caster sugar sand, soon mixed with real sand but was much enjoyed by everyone.

Can we have a big cheer... 'HOORAH' for Tasha and Jim who cycled for 8 hours and covered about 50 miles over Exmoor to be with us on their Tandem. Sadly they didn't make it in time to get to the beach party but their achievement was amazing. To their enormous credit they also cycled back (another 5+ hours) to the station battling gale force winds, rain and thundering traffic on the Monday as many campers fled a stormy Devon.

We had a great weekend, barbeques, a pub lunch, noisy student neighbours, lots of flapping canvas, soggy stuff, catching some waves and a lot of splashing about, fabulous cooked breakfasts (cheers Ben!), walks on the beach and a few beers and most importantly amazing company. Thank you all for coming and supporting us and being the fabulous people that you all are!

Monday 12th May

2008-05-12T18:36:00.001+01:00

It’s been a while, but as they say no news is good news. William is progressing really well. We went up to GOS last week and can now visit Granma and Poppa (and their exotic birds) and go to shops and toddler groups! We have stopped all his meds (not counting the penicillin which he gets forever!) now (probably including the sub cut immunos just waiting on the latest results) so now his new immune system really gets put to the test so fingers crossed. Back to GOS in 3 months all being well. We have updated our car and now have a big blue surf bus ((as Rob likes to call it) in reality it’s an 7 seater Fiat) lots of space for camping equipment and dog! We have been enjoying the sunshine and being a family and working hard on Just a walk to the Beach. We’re getting excited about the Big Launch Picnic, the weekend after next and have an impressive hand crafted 3 metre high flag! Will post again after the launch picnic……

Training for Just a walk to the beach...

2008-04-28T14:00:00.004+01:00

I've started my training for Just a walk to the beach, have you?

www.justawalktothebeach.org

Friday 11th April

2008-04-11T08:33:00.001+01:00

We went up to GOS on Wednesday, which went well. William’s immune recovery continues..hoorah! Another tiring day but cheered to see Kellar much improved. We have restarted started sub cut Immunoglobulins at home until he makes enough of his own. We will be back up to GOS in a month. We are starting to see a few more (well) children in small numbers. William spent a lovely afternoon last week in a den with Eleanor and last weekend had a fabulous time with Sophia and Luca in the park.

We've come a long way, baby.

2008-03-27T19:40:00.001Z

We’ve come a long way in the last 6 months. We are so grateful to everyone who has supported us during this time. Because of the generosity of a stranger William has a brighter future and we have so much more to look forward to.

HAPPY EASTER EVERYONE!

2008-03-23T17:12:00.002Z

We wanted to wish everyone a very happy easter. We are enjoying an overnight stay at Grandma and Grandpa's with Uncle Nick too. We all had a lovely turkey lunch and william did some paddling in his wellies in a hailstorm. Lots of chocolate still to be eaten so I had better get back to it!

Good Friday

2008-03-21T19:36:00.003Z

More antibiotics today through his canula. Great service at Bath today, no traffic, an Easter egg for William and very prompt administration of the antibiotics. We had Andy, Nicky, Hannah, Ella, Great Grandad, Granma and Poppa for lunch toady which was lovely. Grandma and Poppa brought a fantastic colour coded Easter egg hunt. We had great fun finding them and now have bags stuffed with chocolate and coins! (William managed very well one handed due to the splint and bandage on one hand, he is very adaptable) We had a nice call from Alex our Lifetime nurse to check that William was alright after yesterday which was really thoughtful. Yesterday went pretty well despite the long wait. We were on the oncology (cancer) ward in a room with 4 other children (it's alright because they were all infection free and some of them had less of an immune system than William) which was weird as we are used to being isolated. They had fabulous facilities there, a great playroom and even internet access for parents. The nursing staff were also really friendly and just before we left William got an Easter egg from the Radio Lollipop, I wonder if his GOS egg is in the post?!

Line Out!

2008-03-20T21:51:00.001Z

Arrived Bristol 8am, Line Removed 4.34pm, Discharged 9pm, Arrived home 9.47pm. W well and full of chocolate! Too tired to type more.

No News Today

2008-03-19T20:11:00.003Z

Hi just keeping you up to date, as Cath said I would. Well William still has a Hickman line Bristol could not find surgery space for him today. So Cath and William went to the RUH for immunoglobulins and antibiotics and got home at five past seven. We have to ring Bristol at six tomorrow morning to see if there is a bed free (which there wasn't at 5pm this evening!) and William will go on the emergency list again. Not sure how he is going to cope with no Jaffa cakes and Weatabix for six hours or how we are going to cope with William not having Jaffa cakes or Weatabix for six hours. A small price to be line free I’m sure, and how hard can it be reasoning with a two year old? The School visit went well; the picture is of a bird feeder made from recycled materials. When you make yours just remember to tie the string tight otherwise all the seed falls out.

Tuesday 18th

2008-03-18T19:22:00.001Z

Got more IV antibiotics today which was fine. Got a phone call from Bristol at 5.30pm tonight to say that they want to take his line out tomorrow (ok, we don’t need any notice~~! Rob is hosting a school visit in the morning which he has been preparing for for weeks (I know cos I have had to eat a lot of yoghurt cos he wants the pots to make bird feeders) They will ring us in the morning to confirm when they want us!! He will go in for his Immunoglobulins to make use of the hickman line for the last time (next time he needs them, we will do sub cutaneous like we used to) He is on the emergency list so will be fitted in as and when, probably late evening so we will stay in or early morning on Thursday and then we will come home. I am sure that Rob will keep you posted. Bit nervous, truth be told but we will be in safe hands and it will be amazing to have a line free William.

Monday 17th (ooh just realised it's six months today since we were admitted to GOS)

2008-03-17T20:07:00.001Z

Went to Bath today and got our IV meds no problems. ‘They’ have decided that they want to take the Hickman line out. It was due out soon anyway but it’s easier to remove than disinfect it. We were offered to have it done in Bath but we would much prefer a specialist Children’s Hospital so either Bristol or GOS if you please! (also they have about 6 wards closed with the dreaded Noro virus in Bath at the moment)! So we are hoping that they will sort something out soon between them. In the meanwhile we will continue with the IV antibiotics. His blood results aren’t quite as good as they have been but I think that that is only to be expected after all despite all outward signs to the contrary he is fighting an infection.

Sunday 16th March

2008-03-16T19:38:00.000Z

We’re home! Phew, we are home with a bit of a rash but no more high temperatures and promises to go back tomorrow for blood cultures and IV antibiotics and the day after and the day after and for a probably for a few days more. I am still hoping that once he gets a negative culture that I will be able to learn to do the IV antibiotics at home. It’s great to be back although we had to detour into South Gloucestershire on the way home to avoid the Bath half marathon. We made it back by late afternoon and went for a walk. We saw several of Rob’s colleagues on our walk who all commented how well William seems, we didn’t disillusion them by telling them that we had only been out of the hospital for 2 hours!!!! I took his NG tube out on Friday too so we can see what he really looks like. Although the funny thing is that I never really noticed it and now it’s gone I don’t notice that it’s not there either if you know what I mean. Have rushed around catching up on the laundry and unpacking just in case we get tied up again at the hospital, we try and work on the theory that if we are all packed and ready to go and the house looks reasonable, then we won’t have to be away but if the place is a mess and we have no clean socks we are bound to have to stay!!! It doesn’t always work!!!

Posh tomato and cheese baguette

2008-03-15T21:09:00.002Z

Well we have slipped into old Saturday routines, bar the fancy coffee. William continues to do a good impression of someone who is not ill by charging around the room. Cath went into town on the bus during William’s mid day nap because the tube doesn' t run out this far and they don't take oyster cards either. As I was remind in an email I have just read, we were somewhat spoilt being in central London for William’s BMT, although Cath did return with sandwiches from Pret (my fav Posh Tomato and Cheese). This afternoon a walk to the park, no sheep but a muddy Gillie and finishing it all off with a bath in a baby bath flooding the room with splashing.
William’s temperature has been good today although we did finally have a high reading from under his arm this evening. The Doctor came in this morning and forgot to examine William as he appeared to be taken back on how much he has grow since the last time he saw him (William has a bit of a rep for stressing out RUH Doctors who need to take blood using a needle). He then told us that all three lines where infected which is a worry as we were under the impression that a double Hickman had only two lines (it's all in the name!). We think he was talking about culture samples as there were mean't to have been four samples but the nurse could not get a sample from the yellow wiggly during the night so there were only three. So both lines are now infected and they have changed the antibiotic. Normally what happens is the drug is put down the line then the line is flushed and finally hep locked (hep lock keeps the line free flowing and clear). The new antibiotic is just put down the line and left so it sits at the site of the infection no flush no hep lock seems quite clever. They do one line at a time every 12 hours for the first 24 hours and then one a day. So we are hoping to leave tomorrow after lunch and then Cath will take William in everyday for the antibiotic and to have cultures taken until there is a negative result and then she will take over giving the antibiotic at home.
Cath sent me home at half seven saying Gillie had been trapped in the car long enough and that she wanted to read her book. I think the truth is, we beginning to depress each other as we looked around the room, and if you half closed your eyes you were back on Fox or Robin. We were not worrying about us but those we had met up there who have so much more to deal with. BMT is great when it works but it is a last resort for all that go down that path. This short stay is a blip for William and over all he is doing really well. So when you talk to your maker next ask him her or it to look over those kids you don’t know but are having a last shot at life.

Different Hospital, same Microwave meal.

2008-03-14T22:54:00.004Z

Day two in the RUH and William has a line infection similar bacteria to at Christmas. Luckily that was three months ago and his immune system is much stronger now and so far his temperature has not drifted over 38 too much unlike at Christmas when it was off the scale. Although there is some dispute about what is his temperature as, there are two readings his under arm readings are near normal whereas his ear readings are just over or just under 38. The infection is in only one line, which is good and the antibiotics that were started last night are the right ones to deal with this bacteria (until the cultures came back the doctors didn’t know what they where dealing with). It is very strange sitting in a hospital room eating Waitrose microwave maccy cheese again with nurses hooking William up to syringe drivers. Hopefully it will not be for long as once we get a negative culture reading on William’s blood samples we can go home. William will be on a 10 day course of IV antibiotics once at home, which we will be trained to give him over the weekend. A little scary as the lines go straight into his heart. William is quite happy in himself apart from doing a good impression of a two bar heater every now and then. Cath is doing ok but is missing tea, as there is a no hot drinks rule on the ward, which also means no fancy coffee from Starbucks in the morning either.

Home Alone again

2008-03-13T22:12:00.004Z

I just got back from the RUH in Bath where William and Catherine have taken up residence. This afternoon after a visit from the vicar (in which Cath forgot to offer tea and the house was looking lived in) William was feeling warm so we took his temperature and it was high again. A quick call to GOSH and a word with one of William’s doctors and the High Temperature protocol was inacted. We packed the bags and phone the RUH to tell them we were on our way. It is probably a line infection but hopefully it will not be as bad as the one at Christmas. It was very impressive when we got onto the ward and although they where snowed under, within half an hour, cultures had been taken, two doctors had looked W over and antibiotics were running. Now we have to wait to see what grows in the jars so the right antibiotic can be used. So a trip to Waitrose after work for me tomorrow to get Cath a microwave surprise, all very familiar but at least it only takes 25 minutes to get there.

Thursday 13th March (2 weeks off 6 months!)

2008-03-13T14:56:00.000Z

We went to GOS yesterday. We had a good trip up although it takes a good 3 hours, even with a pretty early start. They are very pleased with William’s progress and we are stopping the extra fluids so can get rid of the NG tube, Hoorah! We are going back in another month all being well and after that it will be longer before they need to see us. We saw a lot of people that we know from Fox. All in all, most of them are doing pretty well. Keller is at home, although still needing a lot of care and we caught up with Jack who is getting on well. I lightened the mood in the waiting area when I got up momentarily to help William with something and sat straight back down again only to find that my seat had returned to the upright position and that I was on the floor, it’s a good job that I have a well cushioned derriere! I always find that it is a bit of an emotional day going back to GOS. The home trip took a lot longer (no, we didn’t get lost this time) but there was a nasty crash on the motorway so it took about 4 ½ hours, not including our stop in Basingstoke to collect Gillie from Auntie Nicky’s, have a piece of cake and help Ella and Hannah build (or knock over) the world’s biggest duplo tower! William woke up with a temperature of 38.2 at 2am but we waited a while and it went back down on it’s own so we are all a bit tired today and hoping that we won’t have any more excitement of that kind.

Tuesday 11th March

2008-03-13T14:53:00.001Z

WHAT is she trying to feed me today?

Grandma and Grandpa brought Phyllis to play with us today which we enjoyed very much.

Tuesday 11th March

2008-03-11T21:05:00.000Z

Robert looked after William yesterday so that I was able to go to Lucy’s funeral. Nick went to the service with me. It was a truly, moving service. The loss of Lucy has left me deeply saddened and made me question what I believe. I am angry that anyone should lose a child and that life is so unfair. I admire the great courage that both Claire and Adrian showed at such a devastating time. I left knowing that so many people loved Lucy. That despite her tragically short life she will always be remembered and that she has left us all with many happy memories.

More pics

2008-03-06T18:44:00.002Z

Thursday 6th March

2008-03-06T18:43:00.000Z

We have been getting on very well at home. We have stopped William’s overnight milk (well non milk really but I digress) feed which at least means that I only have to get up when he hollers rather than setting the alarm for 3 or 4 am to change the bottles over. He is sleeping much better (touch wood because whenever I say that he has a bad night). We had a lovely family outing to the beach this weekend, no prizes for guessing which one! It was well worth the journey for a run around on the sand and chance to get water in our wellies. William’s Hickman line sprung a hole this week. So we traipsed over to Bristol via Bath (not sure why we bothered going to Bath first but at the time it seemed like the right thing to do) They cut off the faulty bit and glued a new bit back on so all ok now, we were anxious about an infection but seems that we have escaped this time. The location of this repair also means that the other repairs have been replaced, if that makes sense so fingers crossed we won’t have any more problems with it. It shouldn’t be too long now before he can have it removed.
We are obviously deeply saddened and touched by Lucy’s death and can hardly bear to imagine how Claire and Adrian must feel.

A Brave Little Girl

2008-03-06T07:23:00.002Z

Lucy died on Monday our thoughts are with her family

News

2008-03-04T19:37:00.001Z

With heavy hearts we write this entry. William continues to do well and Catherine will post his adventures later this week. Catherine has told you of the amazing family who had the room next to her and William on Fox when he first went in and how Claire kept Cath buoyant in those first weeks. On Saturday we had a sad email from Claire and Adrian. Lucy who is a couple of weeks older than William has reached the end of the road with her treatment and there is nothing left to try. They are going to a hospice this week for a few days to spend time together as a family. There is nothing else to say other than that our thoughts and prayers are with them every minute of the day.

Monday +137 – Thursday +147

2008-02-21T13:09:00.004Z

It has been a while since the last entry, things have been so busy for me. Lots of William care and supervision and settling back into the ‘normal’. We went up to GOS last week and he had his Immunoglobulins and check up. He has now stopped his immune suppressant and is doing very well so far without it. It was another very long and tiring day but we don’t have to go back until mid March, phew! I am also another year older, and perhaps this time a little wiser. Mum started her chemo on Friday and is being very brave, I admire her courage. On Saturday Bryher came to stay which was lots of fun and David, Nicky and the adorable Otto joined us on Sunday for a lovely lunch (if I do say so myself! thanks in most part to Sir Jamie!). Rob started his ‘Just a walk’ training on Sunday morning and set off before dawn with Gillie in tow. A few hours later, after some complications we were able to successfully retrieve them (Rob has a new mantra, I must always charge my mobile phone and also learn my home phone number!) and they had travelled an impressive 20 miles or so. Auntie Nicky, Granma Ruth, Hannah and Ella came for tea on Monday and William played remarkably well considering his time away. It was lovely to see them playing together and William made me laugh when he tried to take Ella’s blood pressure by putting the toy cuff on her leg much to her bemusement. Grandma and Grandpa came for a visit on Wednesday and assisted whilst poor William had to have his NG tube changed and his Hickman Line dressing done. This morning Vikkie, Luke and Tamsin have been over for a cup of tea. It really was very nice to see them, William was pleased to find a fellow Jaffa cake lover although a bit perplexed that Tamsin didn’t want one (at 6 months old!).

Sunday +136

2008-02-10T19:05:00.000Z

Another week has flown by with all the excitement that a second birthday brings! Things are jogging along quite well. We had to go to the RUH in Bath on Friday for a GFR test, which checks his kidney function by injecting some lovely radioactive stuff (only a bit!) and checking his bloods over several hours to see how quickly his kidneys pass it through. He ended up having a canula put in unnecessarily because the doctor didn’t listen to me which was rather distressing for William and myself but no long term damage done. It was quite nerve wracking though I was imagining superbugs all over the place and held tightly to my antibacterial wipes! William is getting fitter by the day and has done lots of walking this weekend. We went along the canal yesterday, holding him securely by the reigns to stop him chasing the ducks! Today we went along part of the East Mendip way which was beautiful it followed the banks of a river past ruined lime kilns through a deep narrow valley.

Just A Walk To The Beach Update

2008-02-10T18:51:00.000Z

Cath is home and things are beginning to move. We are slowly filling a notebook with ideas. We hope you have seen the Website which Dave has started Cath is slowly putting pages together which I think she is going to run past Dave’s expert eye before they go live as he has done such a great job so far. We have sent out profile forms to go on the website to be filled in by the Long Distance Travellers and the Support Team. The first is back from B, for those worrying about the identity of her inflatable friend it turns out it is going to be a croc. She has found a website which does cheap OS maps http://www.dash4it.co.uk/ but before you all rush out to buy maps please talk to us about other LDTs who maybe travelling in a similar direction that you may be able to share resources with. We are going to set up a bank account soon and Doug has agreed to be Treasurer with Cath as co signature. We spent yesterday evening designing stickers to give away and there is much more in the pipeline. We have an email address now as well and it is info@justawalktothebeach.org Our congratulations to Tasha and Jim on the purchase of their TANDEM!!!!

William's 2nd Birthday

2008-02-07T19:34:00.000Z

We are so lucky to be celebrating William’s second birthday at home. We sat in a meeting with William’s care team in GOSH at the start of the year and said that we would like to be home for his birthday, they said that would not be possible. The good thing was that no one told William and he improved so much that we made it with weeks to spare! On such a special happy day you can’t help think of those you have left behind and what they have to carry on going through.
After an early start, more to do with mummy wanting to open presents than William, we brought William down stairs to a heavily decorated living room. Not quite sure how Cath found the time after making cakes yesterday she had managed to make paper chains out of wrapping paper and a banner as well, not to mention the balloons and fairy lights.
It was not all presents and cake, Alex came to take bloods and change William’s central line dressing. After a pit stop at the chemist for Granma Sue and Grandpa Doug to pick up some strips that didn’t come in the dressings box the change was completed and Alex rushed off to teach some nurses in Trowbridge.After William had recharged his battery and we had eaten a lovely lunch, Pappa and Granma Ruth came bearing many gifts and after a fog of flying wrapping paper he emerged with what can best be described as a misshapen washing up bowl which he sits in and we spin him around the floor. Great fun! It has been a lovely day, thank you everyone for thinking of us.

Monday +123 – Friday +127

2008-02-01T19:28:00.000Z

We have made it through a whole week at home! (touch wood quickly, William has a teeny bit of a temperature!) It has been very tiring and I am still adjusting. William has still been unsettled at night although we have reduced the milk further. He has been in good spirits all week and lots of fun. Grandma and Grandpa came up on Tuesday and the day flew by. We went up to GOS on Wednesday. The journey went as well as could be expected although we arrived a little later than we had planned. Clinic was rather stressful. On arrival William spied a big ride on racing car and made a bee line for it, unfortunately we had to hold him back (physically) with his very noisy protests until we found out if he was noro virus negative and ok to mix with the other children. Fortunately he is, so we were able to let him play with everyone and all the toys and he was able to get on the car, much to everyone’s relief. We saw an immunology doctor who we had never met before, which is always useful!!! However, William is doing very well and they have reduced his immunosuppressive drugs further and we are in the process of reducing and removing his diuretics and anti sickness meds, so all good. We caught up with a few families who we know and some are doing well, others not so well. I went to see Claire, Adrian and Lucy who had just been admitted to Lion ward for the next stage of their fight to get Lucy well. I was SO impressed with Lucy who can not only correctly identify and say diamond but can also pick out colours in both English and French (I am sure it is just the age difference, she is almost 2 weeks older than William!! No pressure William but I am expecting great things from you in the next few days!!!) After about 3 hours in London we headed happily west again. Thursday and today have passed relatively uneventfully (which is the way we like it).

Update from home!

2008-01-27T20:07:00.000Z

Friday +120 Saturday +121 and Sunday +122
We had a good night, despite me remembering at about 1am that I had forgotten William’s 10pm meds and leaping out of bed! Some of the milk giving equipment arrived but not all so we are making do for the moment and they are sending more bottles and piping (that’s not the technical term, funnily enough!) to arrive Saturday morning. William is a bit tired and breathing a bit heavily. His blood sample from Friday showed a low haemoglobin but was probably just a bit dilute, we had it repeated in Bath on Saturday morning when it was fine. He has been enjoying being at home and playing with all sorts of things (some that he shouldn’t!!) although has been tired. Granma and Poppa came to visit this morning and we all took Gillie for a walk and opened the last of our Christmas gifts! It was so lovely to see Gillie again, he is staying away for a few more days until we get ourselves more sorted and Wednesday’s trip to GOS out of the way. William has had two very unsettled nights with tummy ache. We have lowered the milk levels a bit now and are hoping for more than one hour of uninterrupted sleep at a time tonight!!

Yes,our stay in GOS is finally over!!!!

2008-01-24T19:16:00.000Z

We left GOS this morning at about 10.30 (before they could change their minds!!) after 18 weeks, 3 days and 10 1/2 hours (or thereabouts!!). His kidney function tests are a bit wonky still and his neutrophils are only .52 (like to see them over 1, usually get some boosting GCSF if they are under .50!!) but anyway with Philip acting as DADNAV (cheaper and more companiable than TomTom) Rob arrived before William awoke and after numerous trips to the car and congestion charge paying and the like we escaped! Made Rob laugh when reading out our number plate over the phone I said W for Wilbur, it was the first W word that came to mind!!!!! Very exciting to see the countryside and we had a good journey despite the temporary closing of some roads which necessitated a trip around Trafalgar Square! William seemed to know where we were when we got home and slept for some of the journey which worked out well. We went for a little stroll around the block and played. We have rigged his overnight milk up on an easel (the proper stuff is being delivered tomorrow!) and he is peacefully asleep and has had his meds, as prescribed. Alex, our lovely community nurse (I would have said that even if I didn't know that she reads the blog!) is coming out in the morning to do bloods and on Monday as well so we will see what those results bring. Whatever happens we shall try and make the most of every moment together.

Could this really be our last night here?

2008-01-24T19:13:00.000Z

Saturday +114 and Sunday +115 and Monday +116
I met Nicky, Andy, Hannah and Ella at the Science Museum for lots of educational fun. After a pizza (just for a change) we met Rob and William. It was so lovely to see William back with his cousins after so long. There was a, who can get the wettest feet competition which, as a result of Nicky’s swift intervention (or sabotage depending on your perspective) on Ella’s behalf William won!! Planning our exit strategy continues and I am cautiously optimistic that I will be posting this not from Tuttis but from home!!!!! The metaphorical (although am secretly hoping, actual) champagne is on ice. No TPN tonight hoorah and milk up to 44mls/hour. This evening William is refusing to sleep and is rather overtired. I am off to get his meds in the feverent (and somewhat optimistic) hope that he will be asleep on my return (he wasn’t, he had managed to pull the IV pole towards him and zero the milk rate!) During my stoic, I am ignoring you stance he had already managed to unscrew a crucial part of his milk dispensing system resulting in a minor flood!!!!! I received some worrying news this morning from Claire that it looks like Lucy’s leukaemia is returning for the second time, please pray extra hard for Lucy and her whole family as they face this unimaginable horror.

Tuesday +117
Well it’s been all go here. I had an interesting meeting with the dietician discussing milk feeds and dishing out the formula at home and nutrition generally so lots to think about, a fluid target of 1.2 litres (to help flush his kidneys) including 800 mls of milk to start with. All aspects subject to much change as we progress. We also had a lovely meeting with our CNS Rachel who is overseeing our discharge and a bit of a what to do and not to do when you get home recap (as it is a wee (!) while since our first going home talk!!!!!!!!) She is fab. Lots of things are getting organised now and I have bags of medicines to take home (he only has to have meds about 16 times a day now!) Rounds came and went, no much to report there. Kidney function a bit wonky but otherwise doing ok. He is having his Immunoglobulins tonight to keep him going for the next 3 weeks. Had a lovely day with Mum culminating in (another) bottle of wine and making up words to fit the crossword when we got stuck.

Wednesday +118
Another super hectic day. Lots going on and even a phone call from Dr Peter Rudd in Bath welcoming back to the county (only a little prematurely, we hope) and assuring us of our open access to the childrens ward and their availability if we have any probs. Had a Hickman line safety talk which was v informative and useful. Collecting together some more bits and bobs just to ensure that the car is packed to the rafters. There is still a bit of concern regarding William’s creatanin levels which they will double check tomorrow and unless they are WAY up I think that they will let us go, with repeat blood tests on Friday and Monday and then back to clinic on Wedneday. There is so much going on in my head, I wouldn’t be surprised if it explodes! Phyllis and Dad joined Mum and I today, and I was able to enjoy a lovely meal with P and D whilst Mum held the fort here. We all went to the park to visit the sheep and ducks and play on the swings. It was lovely. I saw Keller’s Dad today and he is really doing very well now and they hope to be back on Fox in few days and generally not much longer in the hospital so hoorah. Claire popped around today and it was lovely to see her although would prefer if we could meet in coffee shops not wards (with our children and husbands safely in tow!) We will be thinking of and praying for you and your darling girl over the weeks ahead.

By the time you read this

2008-01-23T19:46:00.000Z

I will be on the first leg of my journey to collect my family from GOSH. I'm driving down to my parents tonight and leaving early for London tomorrow. As long as William does not have a temperature between now and late tomorrow morning, he is coming home after 129 days. The next time Cath posts a blog it will be from home. Thank you everyone, we can now see the edge of the woods.

Week 17

2008-01-19T15:05:00.000Z

Saturday +107 Sunday +108 Monday +109
Met up with B, fun Dave and Tasha for a birthday lunch for B. Lovely dutch pancakes and then a rendez vous with Rob and William in the park to chase a few squirrels and try and get wet in the fountain. Otherwise the weekend went smoothly. We took our red virus alert poster down today and stopped wearing aprons. Milk feeds are continuing to increase.

Tuesday +110
Unfortunately they have detected noro virus in Williams’s poo again. It doesn’t mean that he has been re-infected more that it was hiding or that the levels were lower and just not detected. This is a bit of a setback but at least explains the continuing diarrhoea. William had a lovely day with Grandma and me and lots of fun painting with the play assistant. Grandma and I had a nice meal and a tipple in the evening. A silly student nurse used the intercom and woke William up for a couple of hours though and then he accidentally pulled his NG tube out (great!).

Wednesday +111
William had blood overnight (to boost his haemoglobin) so was a bit heftier again this morning. Otherwise all is ok except for a few funny eczema types spots that seem to be spreading but we have a new cream! His Kidney function is still a bit wonky though but nothing particular they want to do at the moment. William ate some mashed potato and pureed chicken…HOOOORAHHHH. I think that makes 60 days since the last solids (but if anyone thinks different then you are probably right!) He couldn’t wait to get in his high chair and get stuck in, although he only ate about a desert spoonful (which was quite enough for a first attempt). We are VERY excited. The TPN volume is also being further reduced as the milk increases.
Sadly it was Mum’s last day today and Dad came up too. As many of you will know Mum was (shockingly/scarily) recently (Christmas eve, nice timing) diagnosed with Non Hodgkins Lymphoma of the pereipheral T cell variety (a lot more exotic). She starts her Chemo this Friday so cross all your fingers and toes. Honestly, if she wanted to talk about something other than William she only had to say!!!!! Now it’s a whose got the most immuno suppressed neutrophils competition! The doctors are confident that they can treat her. Seriously though, William and I are going to miss her being here terribly but we will be chatting even more on the phone and before long, we will be visiting her!

Thursday +112
Granma and Poppa came to visit today and William had BAGS of fun with them, lots of sticking and charging around. We did spend a bit more time inside than we would have liked waiting for the doctors rounds and when they hadn’t come at 4 (and it was getting darker and rainier) I went in search of them only to discover that they had forgotten to tell me that they weren’t coming! Anyway when we finally got out William ran first around and then through the fountain in Russell Square! More chicken and mash and rice crispies (the new favourite)!

Friday +113
Noro virus negative again and talk of going home sometime soon…..here’s hoping! Lots of fun today with Uncle Nick, William rediscovered the joy of swings. Mums chemo has been delayed by a couple of weeks (bit complicated, due to drug trial that she is taking part in) so we are eagerly anticipating her return next week for a couple of days!

Blog Hijacking

2008-01-15T21:09:00.000Z

Not really a Hijacking just until we have the "Just a Walk to the Beach" website up and running (which Dave and Cath are working on) I thought I would bring you all up to date with what is happening. The number of Long Distance Travellers has grown to 11 and they are coming from all directions (I will list them later). As you know we plan for the LDTs to meet on 14th September at Saunton sands to end their journeys in the surf. As we are all starting from different places and at different times we plan to have a launch party on the 24th May hopefully in North Devon this does depend on William’s health so it maybe a little closer to home. This is when we will be issuing sponsorship forms and T-shirts to the LDTs. As well as having a good time we will be taking photos to go on the website and to give to the press.
Now some of you are going to be left holding babies and small children while the rest of us are off having fun. So you don’t feel left out there will be a 10km walk along the Southwest Coastal path and back along the beach on the 14th. If all goes to plan as you get to the middle the LDTs will arrive so we can all do the last leg together.

Now the list it only seems fair to list in order of distance.
Steve will becoming from High Peak that’s somewhere up North.
Swimming to Devon in a pool Lisa (but never leaving Poynton, not sure if the pool will be full of water or wine).
To make sure Steve keeps to the speed limits he will be teaming up with Rob W in Stoke.
From London Tash and Jim, the rumour is on a tandem so that Jim does not have to wait at the top of every hill.
The Doctor on the team Dr Battam will be coming from Abingdon with his calculator to add up the money and miles but no plasters wrong kind of Doctor.
Coming from Basingstoke Andy with support car and plan to stay in 4 star hotels along the way. For others travelling in the same direction there will be room for luggage in the support car.
Once the website is finished and as long as his bike does not go missing Dave will be pedalling from Winchester.
Walking not cycling Rob C carrying an eight-foot surfboard, if only I was a body boarder.
From Church hill (Bristol) Ben carrying an egg or fish or maybe just a body board or even a kneeboard who knows.
From Plymouth B doing a bit of both walking and biking carrying a blow up toy (please remember there will be children on the beach). Note to other LDTs B has bagged the comedy surf transport only one blow up toy allowed and I want to see her standing up on it as she catches that wave.

Week 16

2008-01-12T10:30:00.000Z

Monday +102 (January 7th)
Rob is wending his way back to Holt as I write this and I am holding the fort here, although I so wish that we were with him. William is still doing well, they are dropping the TPN to 16 hours a day which is progress and his milk is up to 21mls an hour for 20 hours. He is not drinking very much and is putting on some weight so the reduced TPN and a lower fluid target will help that. His neutrophils are back under 1 again, hopefully they will settle a bit higher in time. The new student nurses have been annoying me today (with their giggling, inexperience and lack of common sense, I know they have to start somewhere but must it be with William!? At least they don’t get to handle any drugs!!) Otherwise we’re doing OK (I think!).

Tuesday +103
A lovely day with Grandma and William. A lovely walk in the park and a visit to the sheep. Rounds came and went, we are still in ‘wait and see’ land. Unfortunately William was sick at 10pm and brought up his NG tube. That was replaced relatively untraumatically and peace restored once more. TPN down to 12 hours so more line free time.

Wednesday +104
William was sick again at 6am but (touch wood) not since. This time the NG tube stayed down, phew! Granma Curtis joined us this afternoon and we had a lovely time playing and seeing the animals. William has needed IV fluids today to replace losses and help his kidneys which are struggling a bit. This will undoubtedly make him even puffier/heavier but this is the lesser of two evils. They have consulted the renal team and William is having an ultrasound on his kidneys tomorrow just to check them out. They think that it is probably the Cyclosporin (the immunosuppressant) that is causing the issues as it effect different people differently so they are going to start reducing the levels. They would reduce the levels soonish anyway as we are so far from the transplant date. We will have to be on the lookout for GVH as the levels reduce so time will tell (as it usually does!). Rob is joining me later (hoorah) we have a meeting with the ‘team’ tomorrow which is a new thing that they are introducing for their most loyal customers! Will tell you all about it tomorrow…. Grandma will also be with us tomorrow, so a full house and a chance for Mum and I to escape for a nice lunch together. Ooh news flash have just seen trailer for ER on More 4 so not long until it will be on ‘real’ TV (cos I really need more hospital drama!!! If only the docs here were that dishy!)
Happy Birthday B!!!

Thursday +105
Well we didn’t get off to a great start with Mum’s arrival delayed by a cancelled train but we went off to the meeting leaving William in the capable (!?) hands of a student nurse (knowing that mum was only minutes away!!) and he was fine and not crying when she arrived! The meeting was with the consultant Cathy, our doctor at the moment Zoe, our going home nurse Rachel (Clinical Nurse Specialist who is fab!), our favourite Robin nurse Hayley and the physical therapist Annabel. It was a very constructive meeting, Cathy summarised where we are now and Zoe nodded a lot. We talked of William’s progress and kind of jokingly said that we would like to have William home for his Birthday but it looks likely that it will take a lot longer than we had hoped/thought of late. We talked about the support we have received or not as the case may be and are now getting more frequent play assistant visits. We are also getting a poster to go on the door with William’s schedule on it and our names as we know the nurses names (generally without looking at their badges!) and they still call us Mum and Dad!?!?!? Apparently they found our feedback very useful and probably got more from the meeting than we did. Lets hope we see a bit more of Rachel soon!!!!
Mum and I scooted off for lunch (which was lovely particularly the Tiramisu!) and a tipple or two. Meanwhile Rob was summoned to Ultrasound for a peak at W’s kidneys which are fine to look at. We had a nice afternoon and another trip to see the sheep and lots of slides on the slide despite the rain. Rob headed off, Mum and I had dinner after William finally went to sleep and I tried (rather unsuccessfully for an early night) and Mum went to her lovely Sick Children’s Trust accommodation.

Friday +106
What a busy day. They are a bit concerned about his increasing weight and high levels of certain stuff in his kidneys so more investigations are being lined up. I was in the shower when the Doctor arrived so hastily dressed for our morning consultation. I was having my first cup of tea when we were summoned to x ray for a chest x ray. On our return the play assistant, Becky came bearing bubbles and stickers which went down a storm. After a sleep and lunch for the ‘grown ups’ we went down for another ECHO (ultrasound on his heart). William was very, very good and lay very still. We saw the other end of his Hickman line on the screen right in his heart!?!?!?!? They saw some fluid on his chest but the heart stuff seems fine. They have given him some oral diuretics to help shift the excess fluid/weight but are monitoring him at the moment and will see how he goes. His heart rate is quite high. Mum headed off and William and I went for a little wander in Russell Square. Rob came nice and early and William went to sleep eventually.

Just a walk to the beach up date

2008-01-07T23:30:00.000Z

Just returned home to find a stack of emails from you mad people who have signed up to take part in this dash to the surf and sand. As I'm doing the walking Cath is doing the running of the back office. At present she is writing long lists of things to do but one thing we have decided is that the journey will end on Sunday 14th September. So start breaking in hiking boots, oiling bikes and waxing down surfboards. More news soon from Team Curtis.

Just a walk to the beach

Saturday +100 and Sunday +101

2008-01-07T11:34:00.000Z

100 days since transplant and all is well on that score so that is something to celebrate. Lets hope it won’t be long before we can head on home. We have spent a nice weekend all together and enjoyed our trips to the parks. The bare walls left by the removal of the Christmas cards and decorations have been more than filled by the enormous tractor posters and our exciting sticking collages! We had a nasty NG tube replacement incident on Saturday morning but we have all recovered now.

More ramblings..

2008-01-05T11:09:00.000Z

Wednesday +97
Mum was able to join me for the day. We went and saw the 2 sheep in Coram Fields who were looking a bit chilly, as were we! William has been in good form today. The milk is up to 11 mls and hour and his weight and fluid balances are more stable. His anti diorrhea secretion medicine has been reduced in strength with a view to stopping it all together by the end of the week. He did have Immunoglobulins last night but otherwise was very peaceful and I was able to watch Sense and Sensibility more or less uninterrupted. Unfortunately his sub cutaneous infusion decided that it wasn’t going to run through anymore at 5.45am this morning and we had to put another needle in which wasn’t a popular decision (with anyone). We did all get some more sleep though. Jack went home today which is marvellous. He had his transplant the day before William so they have been here all the while that we have. It will be weird not to see his parents around but we will keep our fingers firmly crossed for the future for them all. I also saw Justina and Eldoras our next door neighbours from Fox, they went home the Sunday before Christmas and are also doing well. It’s harder to get to know people on Robin because there is no sitting around in the corridor and we are all tucked behind double air lock doors but occasionally the kitchen provides a chatting opportunity. I have just worked out that William had been 40 days without milk or food so feel that we should celebrate the reintroduction of the milk a bit more…so HOORAH!

Thursday +98
A relaxing morning with my boy and then Granma and Poppa joined us for another expedition. Dressed for the Arctic conditions (although without the snow) we ventured back to see the sheep. William was reluctant to leave the park but much cheered by some sticking and drawing back in the room and lots of fun with Granma and Poppa and his new amazing collection of really large tractor posters (so thanks to all at New Holland, Claas and Massey Ferguson for brightening our walls and potentially those of the entire ward such are the size and number of posters). William has had a third virus free poo so Hoorah for that! His engraftment is still 100% so double hoorah! The platelets may have fallen because there is still comparatively little marrow producing the cells and they were putting all their efforts into helping William get through the line infection. He has had his last dose of antibiotics for that today. I had a lovely meal with Ruth and Phillip in the semi darkness of the room this evening mmm I love mango chicken! Must get back to my boys now (that is Ewan and Charley and their Long Way Down book)!

Friday +99
Moan, moan, moan, moan, and those nurses! and a lovely lunch in the room with Di! No, all is fine really, just a bit fed up of never having control of anything and always fitting around a schedule which changes at a moments notice and no one tells you about until it is actually happening! Surely I should be used to that by now though (says Rob, thanks for that! (who it transpires was referring to our life outside the hospital (can I remember what that was like?)) Confused? me too but a welcome return of the brackets!J William is fine and a happy chappy today even though our walk was rescheduled to after dark when the parks are all closed anyway and it was raining! Anyway Rob is back here today so must......aarggh go and stop that syringe driver beeping!!

Do You have anything better to do in September

2008-01-03T19:35:00.000Z

Just a walk to the beach……
…to support Jeans for Genes and
The Sick Children’s Trust.

The Challenge
To get from your doorstep to Saunton Sands in North Devon by any means possible WITHOUT using an engine. You must take with you something to catch a wave with.

What do we need from you?
The commitment and resources to make your way from your home, camping as necessary en route to Saunton Sands to arrive on a specified day to catch that wave.
An enthusiasm for raising sponsorship and willingness to take part in any publicity surrounding the event to promote both of the charities and raise awareness.

Happy Holidays

2008-01-01T23:17:00.000Z

Christmas Eve +88
Well we have a room full today as Grandma, Grandpa and Uncle Nick have landed to try and bring some sort of normality to Christmas. William continues to have high temperatures and is shaking a bit, the paracetamol does not seem to be doing much to control the temperture and William is off the scale on the thermometers. It was rounds today as tomorrow the consultant will be tucking into turkey at home and the ward will have weekend staffing levels. William is going to start milk feeds later on in the week but his fluid balance is a problem as he is holding onto too much liquid from his TPN so they are going to give him diuretics. This has made him very heavy and puffy and put his blood pressure up too. William has spent most of the day in his cot only to sit on mummy’s lap for a little while. This is the poorliest that he has been.

Christmas day +89
Merry Christmas
Well it’s raining and William rose late so we were not ready for the arrival of the Battam troop at just gone nine. He has been more chipper this morning but his temperature keeps breaking through the paracetamol. Father Christmas filled William’s stocking and a hospital pillowcase as well and then returned during the morning with dancing reindeer and another present. Grandma, Grandpa and Uncle Nick left for Christmas lunch at one of the local hostelries. William fell asleep and Cath and I had a quiet lunch. For all of you still getting over the stress of cooking Turkey and all the trimming here’s our menu: Veggie haggis, potato gratin, honey roasted carrots and parsnips served with port and cranberry sauce and not forgetting the bread sauce total cooking time eight minutes. No room for pud, which was good as Waitrose had run out! The best present we had was a norovirus negative stool sample only another two and the virus will be gone. Fingers crossed the next test is Thursday followed by Monday (New Year’s Eve).

Boxing Day +90
William continues to improve and the antibiotics seem to be doing the job. Grandma and Grandpa took Cath and Uncle Nick out for a nice lunch and a few drinks so William and I had the place to ourselves. Grandma brought back some cute min jam jar sized Heinz ketchups for Rob that were acquired (Lisa style!!) from the hotel and I think that they were his best present! We had lots of fun in the afternoon balloon modelling (that’s shaping them, not wearing them!)

Thursday +91
Milk feeds have started at one ml an hour for those of you still using old money that’s a teaspoon every five hours. This means we had the addition of another pump on the IV stand, bringing the number of machines to eight, putting the pouches of TPN almost out of reach of the nurses. We are also running out of electrical sockets as a number don’t work anyway. It was my turn to go out for lunch today as Grandma and Poppa came up and took Cath and I out for a burger. We stopped at the DVD store and spent some of William’s Christmas money for him on Curious George, which seemed to go down well. William awoke from his lunchtime nap and was delighted to find both sets of Grandparents in the room as Sue and Doug had baby sat while we were out.

Friday +92
Well we are not quite pacing the room but I sure the nurse was getting a little annoyed with us constantly asking whether the results were back yet. We have been waiting all day for the results from the stool sample taken yesterday and for engraftment test as well. Cath and I went down to Fat Face to spend vouchers and Christmas money and to make uses of the Battam Baby sitting Service or BBSS, before they pack up and head off back to the seaside. William’s temperature is around 37.5 for the last two days which is much better than 40 but not 36.5 which is normal but you find yourself being quite happy with any reading below 39 and it quickly becomes the norm. The milk feed continues to go well and is being increased at a ml an hour.

Saturday +93
We went outside!!!!!!!
Second stool sample norovirus negative!

Sunday +94
We went outside again!!!! With Granma and Poppa.

Monday +95 New Years Eve
We went outside again and saw Tasha!!!!
We are allowed out as long as we avoid strange people who might have lurgies and busy places. Fortunately there are a few small squares (with grass in!) around here that are not too busy, there are even wooden tractors in one of them! William was not at all fazed by his first trip outside but pointed excitedly at the cars, trees and lights. He even walked a little bit. It was amazing to all go out together as a family. His antibiotics are down to one and his platelet levels are recovering nicely after dipping down to a scary pre transplant 30. His neutrophils have been boosted a couple of times with a bit of GCSF so they are quite numerous at the moment. Rob and I saw the new year in with a little bottle of champagne.

Tuesday +96 New Year’s Day
HAPPY NEW YEAR!

Christmas Eve Update

2007-12-24T11:17:00.000Z

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!?!?

2007-12-24T11:15:00.000Z

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

2007-12-24T11:11:00.000Z

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

2007-12-24T11:10:00.000Z

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?

2007-12-20T17:37:00.000Z

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

Big catch up....

2007-12-20T15:28:00.000Z

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!

2007-12-14T10:05:00.000Z

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

2007-12-11T00:44:00.000Z

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

2007-12-10T23:54:00.000Z

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)

2007-12-07T10:51:00.000Z

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

2007-12-06T06:39:00.000Z

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

2007-12-03T23:41:00.000Z

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

2007-12-01T10:59:00.000Z

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!

Thursday +63

2007-11-29T10:57:00.000Z

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

2007-11-28T10:54:00.000Z

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

2007-11-27T10:53:00.000Z

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

2007-11-26T10:49:00.000Z

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

2007-11-26T09:55:00.000Z

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

2007-11-25T10:46:00.000Z

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

2007-11-19T23:16:00.000Z

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

2007-11-16T09:57:00.000Z

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?!)

2007-11-15T09:56:00.000Z

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

2007-11-14T09:54:00.000Z

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

2007-11-13T09:53:00.000Z

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

2007-11-12T09:52:00.000Z

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

2007-11-11T09:50:00.000Z

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!)

2007-11-10T11:03:00.000Z

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

2007-11-09T11:00:00.000Z

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

2007-11-08T10:58:00.000Z

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

2007-11-07T10:56:00.001Z

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

2007-11-06T10:56:00.000Z

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

2007-11-05T14:56:00.000Z

Got those Crocs...yeah!!!

The weekend

2007-11-05T14:55:00.000Z

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

2007-11-05T10:54:00.000Z

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

2007-11-03T12:46:00.000Z

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

Update

2007-11-03T12:45:00.000Z

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

2007-11-01T11:46:00.000Z

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....

2007-11-01T11:42:00.000Z

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.

The wrong Toast

2007-10-28T23:29:00.000Z

Friday +29
William ate a piece of polystyrene, I mean rice cake the size of a 50 pence piece!!!!! The first food for 3 weeks!!! He then didn’t drink his 3rd 50 mls of rice milk but I suppose you can’t have everything. He is a bit restless now and very thirsty so if he is not sick I will eat a rice cake or my hat (which might be tastier)!!! The TPN is late tonight, it’s 8.30 already and sometimes it goes up at 7, there is lots of rustling involved because it comes in a bag with a light protective bag over the top of it (it doesn’t like the light) so W and I might settle down for a spot of TV this evening for a Friday treat. He had his splint removed from his Hickman line repair but otherwise we are medically quite uneventful so far at least today (which is after all the way we like it). Jack (the lucky little chap) has received his get out of jail free card and goes home on Tuesday all being well which is great news. Keller went back home again so that’s good. Alarmingly I just heard a woman in the kitchen who was discharged from here, went home for 2, yes that’s right 2 days, has promptly spent 6 months in Sheffield (hospital) (I know it is a great city but there are better ways to see the country than being based in hospitals) with her son and is now back here for review? It’s a long way round (ooh must get R to tape Long Way Down (love Ewan and Charlie)) journey this BMT malarkey.

Saturday +30 and Sunday +31
Well my hat was very tasty, W wasn’t sick hoorah! He has eaten a whole large rice cake for lunch and 3 fingers of toast for tea on Saturday. I also gave him half a slice of toast and marmite for breakfast on Sunday before remembering that he is supposed to be wheat free…duh. However we are now armed with wheat free bread which weighs a ton but W is tucking in for his Sunday tea. For lunch he ate half a rice cake and his milk is up to 9 mls an hour. It feels like we are making progress. He is a still a bit snotty, they are going to take a swab tomorrow. I had a lovely lunch with Nick yesterday a mooch round the British Museum and a trip to Covent Garden. Today I have been back to Covent Garden to return William’s too small Mammoth Crocs only to find they don’t have his size and won’t until the end of November. Boo. I went for a bit of a wander, got a bit lost but found myself amongst the lions of Trafalgar Square, so went up past Picadilly Circus, Regent Street, into Oxford Street and back through to Holburn so am quite tired now. W has had fun playing with Daddy. He slept well last night and he did give Rob and I a bit of evening time together which was nice. We were able to wave to Rob across the road this morning which was fun. This post is a bit jumbled up, just like us at the moment.

News from fox

2007-10-26T13:53:00.000+01:00

Wednesday +27
Happy 6th Birthday Hannah!!!
We have had a reasonable day today, got some straws!! W has a bit of a rash today, well he is a bit blotchy but not itchy or anything they think it may well be Graft versus Host. I am assured that a little is a good thing but not too much, I know of 5 children here because of it, 4 of whom have been readmitted (the other hasn’t made it home yet). We want just enough to make the system strong or something. Believe it or not it is quite hard to get hold of any/accurate information here. The nurses aren’t able to advise and the doctors are a bit vague and hedge their bets and then change their minds and the consultants tell you quite a lot in 2 minutes then I can’t remember exactly what they said!!! (note to self, maybe I should record him?!) One of the mums here is a nurse and has a comprehensive knowledge of the immune system but I feel hugely inadequate when talking to her and sure that she would be shocked by the naivety of some of my questions so I might have to do some (more) internet research!!!! Our last few consultant visits have taken place in the corridor because W has been asleep and the corridor is not exactly conducive to a full, frank and confidential discussion (but it saves them washing their hands for the 10th time and donning pinnies (and quite frankly sometimes there are up to 6 of them and that’s a lot of soap, hand towels and pinnies!)) Daniela stopped by the ward today (Wednesday is BMT/Immuno clinic up in Elephant Day Care) I popped out to see George and Ivanlyo in the family room. Ivanlyo looks great, he is charging around and has no NG tube. They have to come back every couple of weeks and they are going to start reducing some of his meds now. They have had a few problems but are SO positive and are very encouraging to talk to. They know a number of the current readmissions from their time here. William neutrophils and white cells have recovered a bit on their own which is good news and his haemoglobin is up a bit thanks to the blood from last night. Excitingly we received a get well card from the donor, which I was not expecting, addressed to ‘? And Family’. I have been studying his writing, sniffing the card (I am weird aren’t I? (rhetorical question)) in an attempt to reveal more about him than I know which is his sex (obviously) age and weight! He says that he hopes to hear that ? is feeling better soon, so we shall write again.

Thursday +28 (can’t quite believe it has been four weeks!)
W woke up this morning in a puddle of poo which wasn’t a great start for so many reasons but went back to sleep once cleaned up so he must have been really tired. He had a nice play this morning with the play assistant who loaned us a road mat so the cars have been ‘brooming’ around. I met Jo at Harrods and was treated to a fabulous lunch in their Lebanese restaurant, we had a short wander around but managed to hang on to our money (this time!) A hectic dash down to the tube when we realised that Jo was cutting a bit fine for her train back, and she was, it inconsiderately left without her but it did mean that we met up again for a drink. It was extra great to see her twice in one day!!! Williams blood counts were down again this morning so he had some GCSF this afternoon so that will help. The consultant will be round in the morning and I think they will be tweaking some of his drugs so I am writing a (short) list of questions (I have written them on hand towel, as the nurses do so that they don’t have to carry notebooks from room to room, clever huh!) and will be in the room (not the corridor) when they get here!
Friday Update,
the Consultant came by and did some nodding, so that's ok then. Late last night W was sick and brought up his NG tube so we had to have that replaced at midnight, which wasn't great at all. He is a bit tired today but sleeping now (I hope) and has had fun with Play Doh and the play assistant and occupational therapist (who cam routinely to check him out!) and will be watching more of Tractor Ted later, no doubt.

ANOTHER week begins...

2007-10-24T14:56:00.000+01:00

Monday +25
William had his Hickman Line fixed (again) this morning which he didn’t think much of, but they did rule out teeth damage and think it was weakened plastic tubing anyway lets hope we have no more problems with it. The play specialist did turn up this morning bringing with her paint, glue and glitter which was the most fun. W was hilarious, pouring the glue out from the tub and putting his hand in it to get it out rather than use a brush. He produced four masterpieces, two in mixed media (bits of shiny and fluffy stuff stuck to paper) and two paintings (rather abstract)!!! The consultant came round too with much the same story, it is matter of time really waiting for W’s insides to sort themselves out and is much what they would expect at this stage. His GCSF gave his white cells a boost to a reasonable 5.something and chivvied up the neutrophils a bit too so we will wait and see what happens to them now. We had a fun afternoon playing with Grandma and mega blocks. All quiet for ¾ hour until W was awoken by the nurses so now he is bouncing around the cot getting very tangled in his lines (uh oh) (at least he was asleep long enough for me to grab some tea). He did give me cause for (minor) alarm earlier when he spat out his chocolate milk but did concede to drink it later on. Still no more milk feed or food. He is losing a bit of weight now so they are keeping a close eye on him so that he gets enough calories from the TPN which always seem to be too much, too little, too much fluid, not enough blah de blah and rather over complicated and it takes at least 2 days to get any revisions through from pharmacy and more if it’s the weekend. The ward is running very low on size 5 nappies (all the cool tots are wearing them this season on Fox), and have run out of mouthcare packs (we use 4 a day) and sterile, wrapped straws (W does like a nice straw) which believe me is a frustrating state of affairs (it’s just that nothing is in my control at the moment).

Tuesday +26
W broke free from his TPN late yesterday evening and it can’t be reconnected so he had fluids overnight instead. This morning he broke free from his newly repaired Hickman line. A sharp tug broke the new ‘fix’ and the was some leakage of the red stuff but a flurry of staff soon had him clamped and the IV team came and repaired it AGAIN with a few harsh words from the senior nurse. Have you ever tried to wrestle a toddler attached to a tall pole with up to 4 (varying) lengths of clear tubing? Well I don’t recommend it!!!! However a few mouth packs and a couple of packs of nappies (to share) have appeared and I haven’t checked for straws!!! Otherwise medically it’s business as usual. William’s white cells are a bit depleted again at 1 point something and his neutophils are back under 1 which is still a bit disappointing but he will most likely have a top up of GCSF tomorrow. He will be having some red blood cells later on as his haemoglobin is a bit low. He has seemed a bit tired today but that may be the shorter nights sleep that he is having as well. I sloped off to London Bridge and met Tasha for lunch today which was divine!!! (ha ha) I had a lovely time and my chocolate stocks have now reached an all time high, hoorah! Rob and William had lots of fun drawing and watching Tractor Ted and Spot. I’m all alone now (ahh) but I’m sure a nurse or two will pop in numerous times this evening so I shall enjoy a moment of peace and listen to W snoring. Our buzzers are broken (and are likely to remain so for a couple of days) so every time we need anything we have to pop out of our rooms to find someone, taking off our aprons and on our return put another one on and wash our hands. This evening as a minimum I will need a flush (the first dose of medicine is already running)(the flush gets the remaining medicine out of the tubes and into William), another dose of medicine, a flush, a heplock (this clears the Hickman line and stops the blood clotting in it) and some fiddling around when the blood transfusion finishes. By 7.30am he will have also had his bloods taken (they do that every morning from his line) and his first medicine started, a flush and another medicine started and his TPN taken down so that’s quite a lot of routine stuff plus they check him every 4 hours and the machines hourly but at least I don’t have to call them to do that! Enough ramblings or my quiet time will be over…….(hope you are not all too bored or think that I’m moaning again either, I want to give you an idea just how much goes on!)

Drip Drip is that the the Kitchen Tap?

2007-10-22T00:09:00.000+01:00

Sunday +24
No, it is the drip of information. It takes along time to find things out in hospital and you need to hear it at least from three different people to know it’s true. Interesting facts this week William will be going home in a week or two, this was quashed by a Doctor on Saturday who said it looks more like three weeks at the earliest as we are so far from GOSH. We got very excited about being allowed out on day 28 because all BMT children are allowed out then, false. It turns out that there are conditions which were not aired at first like that blood counts have to be a little higher than William's and that it’s a bad time of year because all the viruses and bugs are just waking up for the winter. So we will just bide our time and get there in the end.

Today’s magic numbers
WCC 0.68
Neutrophils 0.28
Lymphocytes 0.02

Not such great news with the blood counts today but they have given him a half dose of GCSF (as the last dose was stupendously effective) so that will give them a boost again. It is not unusual for the counts to rise and fall in this way and it might be that the community team monitor his blood counts and that we have GCSF locally when we are discharged. His body can make the cells when given a nudge in the right direction (the GCSF) so he will make them spontaneously in due course. His platelet levels are riding high at over 350.

The other Hickman line developed a hole this morning (I think it maybe mice) so the super nurse fixing team where called. I just got off the phone with Cath at 11.30pm and they have finally arrived and had a look at the line and will be back in the morning. Turns out the Super IV nurse team have just moved office and they don’t know were it is, so have no fixing materials or map. They return in the morning hopefully after locating their office and super glue. This means William has gone to bed with two large sets of plastic clamps on his line, comfort first!

William has drunk 150ml of Choc rice milk today but as soon as it’s in, it’s on it’s way out the nappies are no better (well maybe a bit!). His nappy failed at 2.30am this morning and in the half well maybe quarter light the fact that he had soiled over his line was missed. So this morning with autumn sunlight coming through the window along with the holes we discovered the dirt and samples have be sent for cultures.

We managed to watch three different DVDs other than Tractor Ted and had the radio on as well so hopefully Cath will fall asleep tonight without the theme tune bouncing around her head. Cath manage a trip to the shops to find out they don’t open til 12 in London on a Sunday so took back the jumper she brought yesterday and return with nothing, she is a rubbish shopper when it comes to things for herself.

Undercover exnurse Sue may of blown her cover last week by using blood pressure machine one handed, the nurses are still talking about it remember the red fox flies at midnight.

Well it’s bedtime and as I have a lovely day at work to look forward to in the morning I will sign off to sleep, so good night (morning) from the kitchen.

William plans escape

2007-10-21T23:19:00.001+01:00

Saintly hickman line well holely

2007-10-21T23:16:00.000+01:00

Thursday +21
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!

Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))

Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.

This is what we can see from our room....

2007-10-18T11:11:00.000+01:00

Also there is a floor in the patient hotel, donated by those generous folk of Jersey. The walls are decorated with the loveliest pictures of the island, cows, castles and lighthouses drawn by children of Jersey. The most loveliest is of a child drawing in the sand and the message reads Get Well Soon. I will take a picture before we leave.

News from the chilly big smoke.

2007-10-18T11:08:00.000+01:00

Tuesday +19
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).

Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).

Phone Home

2007-10-16T23:01:00.000+01:00

Comments

2007-10-16T10:37:00.000+01:00

Thanks for all your support and encouragement folks, it is SO much appreciated. Thanks for the offer Caroline but I'm not sure if we want William to grow roots here! TPN is Total Parental (think that this word is right, but not in the sense of parents as I previously imagined! it's as opposed to Enteral which is into the tummy) Nutrition and is the intra veneous 'food' that he is having. Alex, hope you are good with NG tubes as we seem to be getting through a few!
Lots of love everyone
Catherine x

More from the Fox!

2007-10-16T10:36:00.000+01:00

Friday +15 and a bit more of Thursday.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…

Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.

Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.

Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.

News Flash!

2007-10-15T13:07:00.000+01:00

Graft hundred percent

View from the Kitchen

2007-10-14T23:46:00.000+01:00

Well the view from the kitchen is not great but that is because it’s dark outside. I’m back in the kitchen at the computer after returning from London five minutes ago this will be quick as Cath is going to post Friday and Saturday’s news on Tuesday along with Monday’s, so that means I ‘m going to tell you about Sunday I think that’s clear. Well I managed to get a room in the parent’s hotel so I was able to stay up in town Saturday night and it was nice to sleep with Cath again even though there were two brick walls a gap of some ten metres and a drop of 25 between us, we were able to wave good night across the street though.
William decided that everything is going to well and although his platelets are above four hundred which means he has the same number as you dear reader. The rest of is blood count is dropping off fasted as he fights the virus, this afternoon his temperature was up a little but started to come back normally without potions. We where on the seventh Tractor Ted DVD thinking how well William’s insides were performing when in the space of half an hour he went through three nappies (note the way I managed not to have to spell Diarrhoea) but he as not been sick today which is good and only went green when he tried some rice milk (Cath has tried it too and she went green as well). As always his mood is good and never better than when cleaning his teeth, four times a day is just not enough! This virus is just to remind us that we are only on day 16 and it is along way to the 100 day mile stone and when you get lemons make lemonade, Cath is learning a lot about farming and should never be stuck for something to talk to her father in law about again.
Congratulations to Dave and Nicky on their new son (the best kind of baby) born on Thursday and also congratulations to Grandma and Grandpa Pepper as I know you are following Williams progress as well. And keeping Dave informed of what is happening as he is getting use to Fatherhood and more importantly not having the Internet fixed up in the new house yet.

2007-10-11T14:08:00.000+01:00

More from Tuesday +12
Wow as previously mentioned those cells are certainly getting a shift on. William does have a virus that is contributing to the diarrhoea (is there anyone who can spell that without a spellchecker? Apparently Mum can so maybe it’s just me!) There is nothing that they can do for it, just make sure that the fluid he loses is replaced. Hopefully he will be able to fight it off pretty quickly.

Wednesday +13
WCC 10.93
Neutro 8.46
Lymph 0.41
Platelets 290
More great numbers today. I sloped off to the British Museum for an hour today, its only a 10 minute walk away which was most culturally enlightening! I bought a guide book so am now authority on ancient civilisations~!~!! A wakeful evening for William again, he didn’t sleep (after his initial nap) until midnight. He was happy enough in himself although a little disappointed not to be allowed to watch Tractor Ted or play with his new Duplo after hours. I think his routine is just so disrupted with those blood pressure, temperature, pulse, pump checks and lots of noisy bins. He is MUCH better having his BP taken now. He likes to help and put the cream on the sensor. They have to do it manually with the Doppler machine because then the cuff doesn’t squeeze quite so tight. Otherwise more of the same stuff. He was a tiny bit sick but there really wasn’t anything in his stomach except some toothpaste!!!

Thursday +14
Platelets 330
WCC 8.51, Neutro 5.84
We have come a long way in two weeks. Some of his counts are a bit down on yesterday but look at those platelets go! They are lower because he didn’t have the GCSF yesterday which boosts them up, so I guess these are all without artificial help. Billy, next door and Keller are both on their way home today which is exciting and scary for them and their parents. The TPN that William is on costs £1000 a day!! So I hope its yummy (although it obviously isn’t cos it goes in his veins not in his tummy)! They are going to put a bit of a milk feed later to see if his tummy is up to it so will report back in due course. The sun is shining so as soon as W is awake and happy playing with Grandma I will be off to the internet café. Jack is much better by all accounts and there is talk of Lucy going home next week.
Happy Anniversary Lisa and Nuri, lots of love to you both, card on the way postal strikes permitting!

Stop Press!

2007-10-09T11:51:00.000+01:00

Williams white cell count today is 5.54 hoorah! his platelets are 268!!! which is amazing. Those stem cells really are magic!! His neutrophils are 3.54 (over 1 is fab!!!) His lymphocytes are also there but I can't remember the number. I think it might be time to be more than cautiously optomistic!!!!!! Hoorah!!!
I have just been on a tube ride to Marble Arch for a spot of retail therapy (to prevent reoccurence of yesterday's fashion horror) and W is currently snoozing. It is pouring with rain in case anyone was wondering and have observed that people on the tube mainly wear black and don't smile!
Anyway enough idle chit chat
bfn C xx

The Fox Report

2007-10-09T11:49:00.000+01:00

Saturday +9
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old

White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03

We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.

Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.

Feeling Brighter

2007-10-06T11:01:00.000+01:00

William really is doing so well so far. So many of the other children are suffering much more and their parents too. Thanks for all you support, everyone. Good luck to David and Nicky as baby time approaches and our prayers are also with Roy and Mary.
love
Catherine xxx

More from Fox Ward

2007-10-06T11:00:00.000+01:00

Wednesday +6
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.

Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.