Weekend Break

We had a break from tests and meetings over the weekend. It was a very welcome interlude from the intensity of transplant assessment but I met it with a mixed response as I would have liked to get on with things. William enjoyed his break. We went to the Sealife Centre yesterday and then onto the art gallery. It was very busy in the Sealife Centre, due to the typical British summer weather. I think Wills was actually a bit overwhelmed and was much more relaxed in the quieter art gallery. It is lovely there, free and very interactive. I think I will spend a lot of time there if we are here for transplant. William will be isolated for 6 months to a year post transplant so we need to get in as much as possible now. You need to take double doses of anti-rejection drugs following a bowel transplant so infection risk is much greater. That is the bit I am least looking forward to if we are listed following this assessment. William will have to remain at home for this initial period - no shops, church, school, outings apart from a park if it is very quiet. Thank goodness for internet shopping!

Today, Paul came up for the day. We wondered around the shops and played for a while in the sand at the Bullring Beach. William chose a cooking book from the book shop. Perhaps we will be able to talk about eating the food as well as making it after we have got through this coming week. After a brief pop back to the hospital for his IV antibiotics, we all went back to my hotel room and enjoyed hanging out together there. We are all now bracing ourselves for this week. Lots was postponed last week and we now have 5 information sessions with the liason nurse, meetings with the dietician, gastroeneterologist, transplant co-ordinator, anaethnetist (I can never spell that word!), surgeon, stoma nurse.... , numerous tests including biopsies, endoscopy, vein CT scan, kidney function test, ultrasounds... and then, the final meeting to receive the recommendation (or news that further tests are needed and we have to come back again!) It is going to be quite a week! It is dawning on me now how big this is. You get so used to the idea of a transplant when it has been forecasted for over 2 years. You think about it, talk about it and meet lots of people who have been through it and it all becomes a lot more normalised and seems like just another operation or treatment option. It isn't though. It is a pretty big thing really. The information sessions this week will tell us just how big that is. At the end of the week, if we are not asked to return for further tests or wait for outstanding results, we will be told either William is not yet at the stage where a transplant is immediately essential or that they recommend a small bowel transplant or a liver and small bowel transplant. I wish I could fastforward to Friday now.

Day 5 - Feeling much better about things

I feel SO much better today. We had a fab nurse last night, just what I needed when I got back to the ward feeling ready to bundle William up and go home. Our nurse today gave me loads of time and talked things through. There have been some big issues among the liason team and this week, especially today, has been impacted by some very difficult circumstances. We just had communication break down yesterday and it coincided with me feeling at my most knackered and home sick.

We met with Dr Gupte today, the consultant in charge of Willaim here. Our nurse listened in as there was no liason nurse available. We still have to be really sure William's underlining neuro genetic condition is not degenerative but no one really thinks so. It may mean that we don't get a definate answer at the end of next week but Dr Gupte hopes to be able to give us a clear recommendation. We are lucky as he was meant to be away next week but is no longer going to be. He explained the issues. William's veins are all blocked on the right and patent on the left. He has clots and they have to make sure they are not travelling, hence the CT scan. This is to make sure he is safe for transplant. Dr Gupte acknowledged his frequency of line infections and said that is the main reason why we are here. He said, so far, they have not found any reason not to transplant William but the neuro and venous issues still demand further tests and discussions. The other main issue concerns what William actually needs. He was referred for isolated bowel but they have witnessed the blood he gets in his stoma and the many pronounced veins and collaterals on his tummy. He may also have a bit of fluid in his abdomen. Due to all this, they are querying portal hypertension (although some things don't indicate this) and are now planning a much more detailed liver work up next week. His endoscope and biopsies will be critical and are scheduled for Monday or Wednesday - I hope Monday. The nurse interpreted his message as saying William needs a bowel but there are a couple of potential contra indications to rule out, or at least treat prior to listing, and there is a chance he needs a liver and bowel. I feel much better for knowing where we are at and why the neck ultrasound was insufficient as they only got the neck and they have to make sure his veins are not clotted further down, especially given the collaterals on his tummy. The nurse explained that these are not normal and either due to rubbish venous flow through his body - something that could cause a problem for transplant, or portal hypertension - meaning he would need a liver. We have also been warned that, if his liver tests are inconclusive, we will have to return for a special test for portal hypertension.

Today, our session with the dietician was cancelled again because of the things going on within the team. William finished his cognitive assessment with the psychologist. This took two sessions instead of the normal one because William kept on chatting through all the tests and turning them into stories. He also had his EEG, as did Thomas. I have some pictures but keep forgetting to bring the camera cable over the the hotel. I will post them tomorrow!

Bad news for us today was that William's line is still culturing positive for the same enterococcus bug as it has had for over 2 weeks now We are doubling antibiotic doses and hoping for the best as Dr Gupte doesn't want to pull the line. I guess it is good they can see for themselves the trouble we are having getting and keeping lines clear from bugs translocated from the gut. This also means we will probably have to go back to Chelsea and Westminster from here, rather than home.

Very good news today was that the little baby who had the transplant on when we arrived here on Sunday.

The weekend is free time (apart from IV antibiotics). I am looking forward to the break but it is a shame we 2 empty days with no more movement towards the outcome of the assessment. Tomorrow, we plan to go to the Sealife Centre and Paul will be with us for the day on Sunday.

Day 4 - Wishing we were back in our Chelsea Pad

William had a barium test today. The solution should have taken several hours to leave his stomach and travel through his small intestine. It began OK and looked normal....until he suddenly dumped the whole lot out in a gaseous explosion, just as we were told to go and come back in 40 mins unless the barium appeared. We had literally only just left the department and were about to go into the lift up to the ward. We went back to find he had dumped almost the whole lot and there was none left to coat the intestines for the final picture. It took him just over an hour. No wonder he has chronically high stoma losses!

I am struggling to settle here at the moment and really missing our own team and our own hospital. It is like moving schools in the middle of the year when everyone knows each other and you are the new kid on the block, not knowing who anyone is or how anything works.

Day 3 - Back on Ward 8

We are all back on ward 8 - the liver ward, following the deep clean. We are on a bay with 3 babies who don't sleep through the night. The nurses seem to like to talk in daytime loud voices too!! Poor William couldn't get to sleep as the main lights were still on at 8.30. He does need his routine. I like the ward at our Chelsea Pad as, even on the twin bays, there are seperate lights for each bed space. I think I am going to opt to sleep at the hotel and get up early, before William wakes.

William got to work learning about his assessment for a new tummy and Thomas' assessment for a new engine today. He went down to see the CT scanner as he will need a CT scan of his neck veins later in the week and they want to avoid doing it under anaesthetic. I met with the transplant nurse specialist today who explained that this is the crunch test for William. If it confirms his veinous access is very limited, he will be listed for transplant. If there are a few places to put lines they will think about whether or not he should be listed with all the line infections he has been getting or if we should stay as we are for a while. She also explained that he will be having an endoscopy to see if he has any varicous veins inside that may indicate liver damage. If he has them, he will need to be listed for a liver as well. If not, he will have a liver biopsy to see what stage his TPN related liver disease is at. If it is stage 1 or 2 he will need only a bowel (if anything) and if it is stage 3 or 4 he will need both liver and bowel. So, he could end up not being recommended for any transplant at all, he could end up being recommended for small bowel or could end up having a liver and bowel. The encouraging news is that she gave an approx 70% chance survival at 2 years for his age and size in either case. If you have survived 2 years you have an excellent prognosis for the future.

William had an ECG and heart echo today to check he is fit for transplant there. He also had a cognitive assessment with the psychologist. She has requested to see him again on Friday as they didn't finish the test - no doubt because William took her off topic several times. His sense of humour is becoming well known here already. He announced to the play specialist, Kerry-Anne that he was going to call her 'Kareoke'. He couldn't answer when she asked him if he knew what that meant but said he was going to call her that anyway.

Settling in - transplant assessment day 2

I am writing this blog from a lovely room in The Thistle Hotel in Birmingham. The Children's Hospital has a contract here to provide parent rooms. It is certainly a lot cosier than hospital parent accomodation. At the moment, I plan to spend the evenings here and sleep on the ward with William. He begged me not to 'leave me all on my own'. However, we visited my room together before he went to bed and he found the biscuits. I am allowed to come here in the evenings if I sleep with William afterwards and bring him a biscuit back to smell in the morning. I reckon I could get away with it if I got up at 6 and got back before he wakes. It would be sods law that would be the one day he woke in the night though!

We are settling in and William is charming everyone. We had a few sessions postponed today, so tomorrow is going to be crazy! We did have a chat about practical issues with the social worker. She felt that William's quality of life and life in general for us all will be a lot better post transplant than it is now. William had a preliminary 'get to know you' session with the play specialists before getting to work on preparation for potential transplant tomorrow. They are making him a special book all about Thomas breaking down and needing a new engine. Tests today were a chest x-ray, wrist x-ray for bone age and ultra sound of his neck veins. This confirmed what we already know. The radiologist was being careful not to say that she was struggling to find veins but I put her out of her misery and told her we already know and that is a key reason why we are here for transplant assessment. He has one good vein on the left and that is it. We have been warned that we may have to come up here for future lines if he is listed. They will do an MRI scan to establishe where they can put lines for a transplant and will write a plan. They will want to take over responsibility of his veins to prevent another surgeon placing one and destroying a vein they have chosen for his transplant access. We also had a neurological review. William was tired and fed up then so not on his best form but the neurologist could see that he is bright. He has clear physically disabilities and she agreed that he has the look of a genetic syndrome. She is going to talk to colleagues but doesn't feel that it is degenerative. She thinks it is either mild cerebral palsy associated with his prematurity or a 'neuro-genetic' condition. This should be enough to satisfy that his neurology should not prevent him from having a transplant and she did say she felt his physical limitations would improve post transplant. We discussed his current possible diagnosis of tricho-hepato-enteric syndrome (THE). Most children have not survived long with this and, with the improvements in home TPN etc, William is doing better. If he has it, it is severe in his gut but mild in his liver. A syndrome is a collection of symptoms and not all children with the same condition are the same. It could be that there is a motor component of the syndrome that previous children have not exibited because they did not survive infancy or because that component was not so pronounced for them. The neurologist felt, as do most doctors, that William does have some kind of very rare syndrome, possibly THE. For the transplant, a definative diagnosis doesn't really matter as his new bowel won't have the genetic condtion - just like new lungs in CF.

It has been lovely to see people from the 'transplant kids' forum. James and his family are lovely (who I referred to a few weeks ago when introducing his fantastic story). They were in for stoma reversal and went home today. I will miss them. I am now getting to know another family from the site who are having a more bumpy post transplant ride. The Mum (whose name I don't actually know so will ask tomorrow) gave me a pile of vests their son had outgrown. I only packed 3 for William to sleep in as we have a washing machine at Chelsea and Westminster. There is one token operated machine for the whole hospital here and all William's are damp and yellow from leaky nights. Tomorrow evening, the hotel room will become a laundry.

Life in the washing machine - William's transplant assessment day 1

William had a great birthday. I never got around to blogging about it but the pictures tell the story of a little boy who woke up determined to have a great day and made sure he enjoyed every second of it. The pictures are all on facebook and here are a few of my favourites. It was a good day but we did miss Hope and Ellie.

Yesterday, we arrived at Birmingham Children's Hospital for our long awaited small bowel transplant assessment. There were major stresses and worries along the way as William had a line infection at the start of the week and we were unsure if he would still be able to come for his assessment. We had an agonising wait for news that he could still come as he was clinically well enough after the first couple of days of antibiotics. However, on Friday we were told that there was no transport available to take us there. An ambulance was arranged for us on Saturday - from the same place as was tried previously to be told there was no crew! All seemed to have finally fallen into place until Sunday morning, just as we were waking up to go. William's TPN pump decided to chose that night to break and fail to charge. We had no battery to get up to Birmingham. With the ambulance crew waiting and me tearing my hair out packing the last bits and pieces, Paul put our back up pump onto a taxi on his way to work and we all prayed there would be enough charge on it to get us there. Luckily there was and we are here at last!

Emily talked about the experience of waiting for a transplant on her blog a week or so ago (www.pinkandsmiley.blogspot.com). She gave the example of a woman waiting with her father for his heart transplant and how she thought it more of an emotional washing machine than an emotional rollercoaster with all the varying emotions coming at you at the same time rather than ups and downs. It certainly feels like that for us right now.

They are deep cleaning the ward we should be on right now so everyone is on another ward, which has been closed specially so 'ward 8' has taken over 'ward 2'. We will be here until Wednesday when we will all make our way back to ward 8. We are in a 4 bed bay all by ourselves. When we arrived yesterday afternoon we were opposite another family. They had flown from Belfast at 4.30 am following their call for a new stomach, small bowel, liver and colon for their little girl. Of course, we got talking to them throughout the day and shared in their excitement and anxiety - they were well and truely in the middle of the washing machine cycle that we were just stepping into the edge of. It was strange seeing it all happening in front of us. The family leaving to take their child to theatre, the anxious waits for news, updates from the transplant coordinator, relief that the operation was over and things had gone to plan... It has made this whole experiencee of assessment seem so much more real. It is also less scary in a way as I have seen a little girl go off to theatre, heard from her parents of all she has gone through and know that she is now in intensive care doing well. There is another family here who have been in to have their son's stoma reversed as he is doing so well 3 years post transplant. I got to know the Mum though the transplant kids forum and it was so lovely to have someone to look out for and say hello up here. Paul was here yesterday and today but can't be here now until next Wednesday and then only for the day. I did feel very lonely and daunted when he left.

On arrival yesterday, we were given a schedule for all our sessions and tests this week. Today, we started the day with a dental check for William. This is to make sure there is no infection in his mouth that could cause problems while on anti-rejection drugs. All was well there but we need to be seen here every few months if William is listed- all the way to Birmingham to see the dentist! Next, William had a developmental assessment, the Bayley's assessment, with the physiotherapist. He passed the cognitive section with flying colours but dis not do so well physically. This was just what we would expect and she was happy that he is fine for transplant from her perspective. We had time to grab a very quick sandwich and change William's stoma bag before Paul and I left him having his IV antibiotics and went for a pre-transplant assessment with the clinical psychologist. This was to see how we are coping and how all the family are coping and will cope with a transplant. We have had so much time in hospital lately that we have worked through most of the practical issues and I think we impressed the psychologist with how many contingency plans we already have in place. Life has been very unpredictable for a long time with a constant possibility that William will be rushed to hospital at any time and stay there for several months. A transplant won't bring anything new in this respect. We returned to the ward and met the play specialist who explained what she will be doing with William this week and with the girls in the future. We then escaped to look round the shops. Apparently, we were called for a chest and wrist x-ray as soon as we left the ward and the neuro team came to see him when we were out. They are coming back tomorrow, one of our 5 scheduled sessions of the day! I was told this process was intensive!

As ever, William is taking it in his stride. He woke this morning and told us straight away that the little girl had her new tummy and now we are going to see if he can have one so he can have a picnic. Later on, while on his way for a bath, he spoke to the boy in for his stoma closure. He had just two questions to ask

"Have you got a new tummy"

"Yes"

"And do you eat"

"Yes (his Mum adds he is eating pizza)

"Uh" (William grunts with satisfaction, a big smile on his face as he toddles off for his bath, apparently with all the information he needs)

Quick blog while packing for hospital again

This is a quick post as I am busy packing for Wills and I to have 3 weeks in hospital (including the transplant assessment) and for the girls to go off to their Dad's. I am also wrapping Ellie's birthday presents for her to have tomorrow morning before we all go, together with birthday pan au chocolat complete with candles. William's presents will have to be wrapped and taken to the hospital. William is going back in hospital in the morning to have IV antibiotics to treat a presumed infection because of his gall stones. This is to prevent him from becoming sick in the week before his transplant. If he were to become unwell the assessment would be cancelled. We are all very disappointed that William will be in hospital for his and Ellie's birthday yet again. I will blog more tomorrow (thanks to my mobile internet dongle) and finally get those photos of the girls and I in Brighton posted.

Urgent Petition

The girls and I had a great time in Brighton today and I was planning to blog about that. However, I found out about the following petition and want to use my blog space tonight to ask that anyone reading this before midnight tonight could seriously consider signing.

I have known of 2 children who died waiting for a small bowel/liver transplant. I have also heard of countless young adults dying whilst waiting for new lungs. We coudl find ourselves on the transplant list within a few weeks and, if so, I will do all I can to use our story to promote organ donation. This petition is mainly about bone marrow donation but will also include blood and organ donation.


I have just received this from a friend, having been out all day. It concerns a petition that is being delivered to Downing Street tomorrow as part of a campaign to include education on organ, bone marrow and blood donation in schools. Currently, only 20% of the population are on the organ donor register but over 80% think it is a good idea and would hope to get an organ if they needed one. There are over 7500 people waiting for organ transplants. Last year, 450 people died because an organ did not come their way in time. Obviously, 1000s more receive blood transfusions. A petition is being delivered to 10 Downing Street tomorrow. It's part of a campaign to get the government to make it an obligation of colleges to provide education on organ, bone and blood donation to students up to 18 years old: http:/petitions.pm.gov.uk/bone-marrow/ If they can get a few more signatures before midnight tonight (Wednesday 23rd July) it will register as the 6th best supported petition to the government. It's been started by a guy called Adrian Sudbury who you may have seen in the media a lot lately. Adrian has just had his 27th Birthday but has only weeks left to live because he has leukaemia. He has decided to spend what time he has left ensuring that he leaves behind a lasting legacy of education on bood, bone and organ donation for everyone before they leave school. He has met with the Prime Minister and key government officials and they are starting to look at ways to implement the scheme, You can follow Adrian's blog here: http://baldyblog.freshblogs.co.uk/ He's an amazing guy and it will make a huge difference to have every extra signature on the petition. Thanks!


For more info on transplants and joining the organ donor registry please see http://www.livelifethengivelife.co.uk/

Special Cuddly Friends

Yesterday, I took the children to the 'Build a Bear' workshop to make some special bears with messages for each other for when we are apart in hospital. Hope and Ellie have wanted to go for ages and the one time we did go they were only allowed a very megre budget. We had some Christmas money to spend on a special treat for them so I suddenly had the idea to make special bears. It went down very well with all of them. They had such a good time and it was lovely to be able to let them choose exactly what they wanted (within reason!). They recorded 'I love you' with Hope and Ellie saying it for Wills and he and I for them onto the sound buttons. We put them into the bears so they can be heard when cuddled. Ellie chose to put red sparkly shoes, a bit like the ruby slippers in The Wizard of Oz so she can imagine them taking her home in her mind. William chose to make his bear into a surgeon. 'Monty the Operation' as he calls him has already performed a number of procedures on Manny the Duck.

It was very strange timing as I had a call on the mobile from William's consultant just as we were making the bears to say that Birmingham were bringing William's transplant assessment forward a week. We never had confirmation of his original date but are assuming that it will now be a week on Sunday on August 3rd. It is a strange feeling as it all becomes more real. We don't yet know if William will be accepted but, if he does, it could all begin very soon. We have clinic on Friday so, if we don't know sooner, we should find out then.

Hope, Ellie and I are off to Brighton tomorrow to have a girly day. William has a nurse so we are going to do all the things we can't do with him like paddle in the sea and go on a couple of rides. If William and I are going to Birmingham a week on Sunday, they will have to go to their Dad's early a week on Saturday and won't be home until the end of August - another Summer holiday apart. We have a lot of fun to fit in next week and will also have to do school shoes and uniform as there won't be much time when they get back from their Dad's.

We also don't know what the Birmingham team will want to do about William's gall stones. His liver numbers are up a bit again this week and he isn't quite himself. If he is accepted for transplant, they may not want to operate on him and may just want to monitor it and take it out when he has his transplant. Or, they may want to operate before he goes on the list. All will soon become clearer.

Manny (previously Thomas) the Duck

Yes, you heard right. Thomas the Duck, not the engine. That is what William chose to call his new duck. He has been playing with it with Hope and Ellie all day. Thomas has had TPN and drugs with William and has been everywhere with him today. The surgery to form an illeostomy and insert a gastrostomy went very well, thanks to red felt and Velcro, and Thomas was well enough to join William in bed before morning. We popped to the Build a Bear factory this afternoon as Ellie wanted to spend some pocket money on bits and bobs for her bear. There we found a ruck sack so Thomas can have his TPN in a ruck sack just like William's and a little bag of medical things, including the dreaded blood pressure cuff. William really hates this and calls it 'arm of squidge'. We even found a Thomas sized wheelchair so Thomas can sling his TPN ruck sack over the chair like William does.

*Update to this blog - As he was playing with his duck at bedtime, William decided that Thomas was not a good name for a duck afterall and renamed him 'Manny'. Manny does go better with the names of his other favourite cuddly toy - Nester. Manny is currently sitting watching William play with Thomas the tank engine.

So far, it is a 'nothing right day' and Wills is in a very funny mood. His stoma output is pouring. We are just a week and a day from Ellie's birthday and a week and two days from William's and hoping every hour that Wills stays well enough to be home for them. It looked certain he would be in recovering from his gall bladder removal but Birmingham want to assess him for transplant first. This means, we will be home until mid August as long as William stays well!!! *

Manny the duck is going to be a very special friend for William. Huge thanks to Post Pals and even bigger thanks to the family and friends of a special little boy called Nathan. Nathan sadly died of cancer and the Chemo Ducks were donated to Post Pals in his memory. There is more about Post Pals in yesterday's blog.

Posting Smiles on Children's Faces

We have just got back from a very special 5th birthday party. It wasn't for just one person, but for many people.

The party was to celebrate 5 years of 'Post Pals'.
Post Pals is a fantastic organisation existing to help put smiles on the faces of children whose lives are dominated by treatments in hospital and in the home and for their siblings. All the children are called 'pals' and their stories are featured on the Postpals website http://www.postpals.co.uk/. People can then read about them and send them 'smiles' through the post through letters, cards and gifts to help cheer them up when they are going through the mill. It is a lovely idea. We have only just got involved with Postpals. William is not yet a 'pal' but will be soon. The site is full of children whose difficult lives are brightened up by receiving their smiles. I know that William, Hope and Ellie will feel the same.

As you can see, Postpals have already put big smiles on their faces (Hope and Ellie were also smiling and laughing but not captured on the camera - William hardly stopped smiling!). We were invited to the party a couple of weeks ago but I only told William yesterday in case he wasn't well enough. He was so excited and kept talking about it. He loved every minute, especially the ventriloquist/puppetier. The puppets were performing bursery rhymes and often got them wrong - MUCH to William's amusement. I have never seen him so involved in an enertainer. His giggles were very infectious. He also shouted down the microphone to help a koala who had forgotten the words to his nursery rhymes. We had a fantastic barbeque and William enjoyed smelling sausage rolls, cheese straws and sweets. Thank-you so much to everyone involved in such a fab afternoon.

The children were given balloons and a party bag and William was given a 'chemo duck'. This is a lovely cuddly duck in pyjamas and with a Hickman Line and IV splint. They are designed for children with cancer but William uses the same lines. He has already called his duck 'Thomas' - which goes to show how important it is to him as NOTHING has ever been named after his precious engine before. Thomas had IV drugs and TPN with William at bedtime and I have been instructed to make an illeostomy and put a stoma bag on. Thomas is about to undergo surgery when I have finished this blog. I will post a photo of him when he has recovered tomorrow.

There was a display of photos of all the Postpals at the party. I am fast learning how small the world is becoming in the internet age. I recognised many faces from other sites and message boards. It is so fantastic to be able to keep in touch with people who are in similar situations. It makes life a lot less lonely. It is great to hear from new people commenting on my blog. I love reading comments on here. It helps keep me going and I am going to spend some time over the weekend reading blogs of people who have got in touch with me here. This network is so special to people who are stuck in at home a lot of the time through their own poor health or because they are looking after others. I am so glad to have found the transplant kids forum as well. Although there are some very sad stories, on the whole, it seems a very positive place to hang out and I am looking forward to getting to know people on there. A few words of encouragement now and then are so important. It is so important to give and receive support. I am going to look out for opportunities to send some smiles to other Postpal families when they are going through tricky times. Please have a look at the site - maybe you could help spread some smiles too.

Post pals - http://www.postpals.co.uk/

Proud Mum

I am a very proud Mum today. Both Hope and Ellie have bought home excellent school reports. Hope has earned a Certificate of Achievement, Head of Year and Head Master's commendation for her first year at secondary school. She came way above average in all but one exam (which was maths afterall!). All this in a year where she had to adjust to secondary school with so much uncertainty at home. The girls missed 20% of the school year when they were in Stoke-on-Trent while William was in hospital and had a further 3 months with Mum and Dad staying in our home while we were in hospital. In the last school year, William and I have only been home two whole months. We have had 6 whole months in hospital and the rest were a mixture of hospital and home. It has been quite a year and yet both girls have done so so well at school! I am so proud of them. They will be having big treats to celebrate. (Ellie has requested another trip to Joseph - well several actually, one for this celebration, one for her birthday and again for Christmas!!) It won't be another trip to Joseph just yet but we will certainly do something.

From now on, they will always be in Stoke-on-Trent while we are in hospital. Ellie has dual school registration. We are still working out what is best for Hope as being thrown into a large comprehensive school while your brother is sick and everyone is worried would be the last thing she needs. With the transplant assessment in August, next term is unlikely to be anything like settled. I worry about the impact things have on their education. I am lucky that they are such bright girls and work hard when to keep up when they do have to be out of school. At least we will have a more structured se of contingency plans next year. If William goes on the transplant list we will all have to be ready to drop everything and uproot for 3 months. Hope has a fantastic group of friends who have stuck by her and supported her throughout the year. Ellie just makes friends wherever she goes. We are very very lucky.

Encouraging Stories

Ellie is STILL on a huge high from Friday (blog below). Long may it last - it is so lovely to see her full of happiness and how an 8 year old should be. William is getting into the spirit of things too and now knows most of the Joseph songs. His favourite is definately 'Jacob and Sons'. He was also singing the beginning of the prologue earlier today. That was a bit of a difficult one - the sound of his little voice singing 'Some folk dream of the wonders they'll do, before their time on this planet is through'. He is currently very much into his lullabies at bedtime, one of his favourite's being 'You Are My Sunshine'. I have had to leave the room a couple of times and pretend to take longer than usual to find his pyjamas.

Things are very raw at the moment with the transplant assessment getting ever closer and following Friday's clinic. The weekend excitement has not passed enough for me to think about what was said and what, unfortunately, Ellie overheard. William's doctor explained that she thinks we will eventually 'loose the fight' with things the way they are as William has very limited venous access for the Hickman Line that delivers his TPN. He also has infections far too often and is now getting liver problems, such as his gall stones, an enlarged spleen and some evidence of damage to the blood vessels around the liver. The liver aspects (apart from the gall stones) are all very minor and totally reversible at the moment but shows his body is struggling with TPN. This is why we have reached the time where an urgent transplant assessment is necessary. William was referred to the transplant team in May and we were all expecting his assessment to take place within weeks. We had thought that the Birmingham team did not agree he was quite so urgent but have since learned that, sadly, all the children referred for transplant over the last few months have been urgent cases. Everyone is disappointed that they can't all be assessed as quickly as usual. However, we are expecting William to be assessed in the middle of August and he is unlikely to be bumped down now as he has some acute problems that need addressing after his assessment. We have been warned that the small bowel transplants are not as successful as 'solid organs' such as heart, lungs, kidneys, liver etc. This is very difficult because you feel stuck between a rock and a hardplate. If we go for transplant we could loose him and his life expectancy is not that encouraging. If we don't we could loose him and his life expectancy is even less encouraging. Either way, if the outcomes are not good we will feel we made the wrong choice. We both know the transplant offers the best hope and, by far, the best expected quality of life and are hoping more than anything that William will be accepted and listed.

Earlier today, I managed to prize Ellie off the various Lee Mead appreciation websites and You-tube vidoes of 'Any Dream Will Do' long enough to look at some stories of other children who have had bowel (and liver in these cases) transplants. I am so glad I did. Many people reading this blog are family and close friends so you will all be as encouraged as we are. Have a look at this http://www.transplantkids.co.uk/stories.html - Aaron and James are the bowel/liver children. Aaron had his transplant at 3 years old and is now an 11 year old snow boarder, mountain biker and footballer, as well as transplant games medalist. James also had the transplant at 3 years old, was eating 2 weeks later and went home 5 weeks after the transplant. Of course, it isn't easy all the time and both boys have had their ups and downs. I so want to be able to post pictures of William eating on here. Both of these boys had their transplants around 3 to 4 months after being listed. Wouldn't it be something to have a picture of William nibbling at Christmas dinner. We have heard other stories and, Jo, if you still read the blog, my thoughts are with you and the family tonight. However, myself, Paul and the girls have all read these stories today and feel so positive about them. William is amazing. He is such a little star and everyone who meets him is touched by them. When he sings that Joseph prologue, I know that he has already made more of an impact than many people do in a lot more years on this planet. Since having William, that song always brings tears to my eyes and, although I never give up hope, I never let myself dream too far into his future. Seeing Aaron at 11 years old is incredible. I hope we will be posting pictures of William at that age. It almost feels safe enough to wonder for a while what he may be into when he is that age. Mind you, having only experienced girls growing up I actually don't have much of an idea. Perhaps, for now, it is just as well.

Meanwhile, back in the real world...

Ellie is still floating on the ceiling - she really is!!! (See blog entry on Friday 11th July for the full story) She is so happy. Meanwhile, in the real world below, it has been a very busy day. William's new school teachers came to visit this morning. Getting William to school in September is proving to be a mammouth project. He is going to the special needs school for physically disabled children but even they are very worried about the level, complexity and fragility of his medical condition. It was decided at the 11th hour, right at the end of this term, that he needs a one to one health care assistant to make sure he is well and safe. Luckily, it looks like the wonderful lady who comes to play with him two mornings a week will take on the role. She loves Wills to bits and it is very much reciprocated so everyone will be happy. We just hope all the practicalities and training can take place in time. While the medical team are fretting, his teacher is more than happy. William is very interested in learning and already reading.

Shortly after the teachers left, we had a very special delivery - William's long awaited electric wheelchair. He has been in hospital every time we were due to collect it and, when we finally managed to get there, one of the functions was not working. Thankfully, it can be driven from the back so I can keep control while he is learning. This didn't stop him managing to switch it off while we were half-way into getting off a tram to pick Ellie up from school. It took 6 people lifting and pulling frantically to get him into safety before someone noticed what he had done! He hasn't found the horn button yet but I'm sure it won't be long! I can see we are going to have fun and games getting to grips with it. I think we will stick to the buggy whenever we need to rush anywhere. It will be great in the classroom though as it will give him independence while he is stuck on his TPN. For now, we are sticking to safe places, like Ellies school playground, before letting him take control of the joystick.

William also had bloods today. Thanksfully his liver tests have stabilised and even improved a tiny bit. This is good news as the transplant team in Birmingham want to assess him before making plans to remove the gall bladder. It still needs to come out but they want to decide how to do things in the context of decisions made about transplant. The more surgery a child has prior to the transplant, the more complicated things can be so it may be that the gall bladder and liver situation is assessed as part of the whole of his condition and incorporated into the speed at which he needs the transplant and where he is placed if listed. If it is likely that he will get a transplant relatively quickly, we may be able to wait until then before the gall bladder is removed. If they do feel the gall bladder operation needs doing more quickly, they may well do it themselves. Everything now rests on the assessment, set to take place in a few weeks time. We have been told that we need to bring him into Chelsea and Westminster if he seems to be in a lot of pain or gets fevers. Apparently, he could get a sudden and serious infection due in the gall bladder or the blockage in his bile duct could suddenly worsen. As ever, we have the risk of sudden line infections and another risk of him becoming suddenly and severely unwell along side it. It is so hard to get the balance right at the moment. Hospital bags are packed and contingency plans in place. He is having his ups and downs at the moment but is OK. I just hope we can hang on in at home for another couple of weeks so Ellie and William get their birthdays at home and all together. Hope is worrying about us going into hospital. Ellie is blissfully protected in her bubble of lovely memories and lingering excitement from Friday. I just it doesn't pop too suddenly. She would go down with a bump.

Still on Cloud Nine

Ellie hasn't come back to earth yet! She is still very excited and really happy. If you didn't read yesterday's blog about our fantastic evening at 'Joseph' then do scroll down. You will see why Ellie has been floating about in space all weekend. It has been a lovely weekend and so nice to be posting such happy photos of the children.







I wanted to start the blog today with the three of them together. You can really see how much they have enjoyed the past few days. Ellie was so upset on Friday to hear what is coming up for William, and for all of us, over the summer. She is like a different child this evening, all three of them are. For Ellie, it was her wonderful evening that pulled her up. All three of them have benefitted from a weekend at CHASE at Christopher's Hospice. Ellie wrote about CHASE in the card she wrote to Lee Mead when we went to Joseph. It was interesting because she gave a great insight into what she gets from being there. She said in it 'You can do whatever you want to there'. Hope agreed that being able to do what you want is something really great about being at the hospice. They feel relaxed and free there because there is so much to do, a lot of space, a relaxed environment and someone else is taking responsibility for William's care. This weekend was the first time I have not been there with them all the time. William went on his own and was met there by Granny who stayed with him there for the weekend. Hope and went on after the sibling day on Saturday. I went this morning to join them for lunch and take them home. It was really interesting to see what they were up to as they were 'doing what ever you want to'. Ellie, as ever, had made new friends. She makes friends wherever she goes. They were raiding the fancy dress cupboard and playing 'let's pretend' games with dolls. Hope was playing with the keyboard. The keys light up to guide you as you play pieces. Hope loves it and always makes a beeline for it. That and the computer room and 'den' for older children. William, of course, had every Thomas the Tank Engine toy and book all around him. I was assured that he had been in the soft play and sensory rooms and had not spent all weekend watching Thomas DVDs. I was given some fantastic photos of him on a fire engine with the fire brigade who dropped in to see them on Friday evening. He has had a great time. It was so lovely to see them all having the time and space to be children and play, away from all the responsibilities and worries we are all living with at the moment. CHASE provide respite for families like ours. We often think of that word in terms of doing all the practical things for William and cooking us lovely meals so we can just relax. It is so much more than that.

Both girls enjoyed the sibling day. Ellie was reunited with one of her best friends at CHASE and someone she hasn't seen in a while as William has been in hospital for the last 3 sibling days. Hope also made some friends with whom she has agreed to keep in touch and keep each other updated on what is going on in their lives so they can support each other. I only spent a few hours at the hospice this time but that even that was enough to feel relaxed and to have the opportunity to chat about what has been happening with Wills lately and chew over some of the huge decisions that have to be made over the next few weeks. CHASE really are our lifeline.

Our other lifeline, of course, is Chelsea and Westminster Hospital who have kept Wills alive for the past 2 and half years. Regular readers of my blog will know that we affectionally call the hospital our 'Chelsea Pad'. We spend more than half our life there so need to think of it as a second home. Yesterday evening, Paul and I went to a ball to support the surgical team in raising 1.5 million pounds to refurbish a brand new state of the art paediatric operating theatre. The Trust have promised to fund the building and the staffing but fundraising is underway for the equipment. They are hoping to raise enought for a surgeon controlled robotic instrument. This will make our Chelsea Pad only the second hospital to provide this for children, confirming its status as the leading centre for children's surgery in the South of England. Chelsea and Westminster are a key centre of excellence for 'intestinal failure' and intestinal surgery, among other surgical specialities. There were some videos of surgical success stories and about the robotic machinery too. I felt really proud of our team. Everyone was there too. Most of the paediatric staff and nearly all the gastro and surgical teams. It was a somewhat surreal situation to be in - at a ball with all our team in their glad rags. It was a bit like stepping into one of those 'Holby City' episodes when they are holding a charity event, but with our own, real life team. I will do all I can to support them. Please do have a look at the site at http://www.surgery4children.co.uk/
William is featured on the site 'about us' page (with Mummy too looking at her hospital best) He has had several trips to the operating theatre and, of course, another one is coming up very soon to remove his gall bladder. Although, transplant aside, his condition can not be cured by surgery, many of these procedures have been life saving.



The main reason Paul and I were at the ball is because Paul was singing with some of his opera friends. He was actually really nervous. Everyone on the ward knows that Paul is an opera singer and always say 'go on, give us a tune' etc. Other than a few carols with some other friends at Christmas, no-one has heard him really go for it in a big aria - until yesterday!! He went down really well and everyone was really impressed.

John Hannah was also there. He has a child who has been in the hospital a few times. I have seen him before, in the playroom. I didn't talk to him yesterday as everyone knew him and it seemed most uncool to go up to him and say hello. Hugh Grant was meant to be there too but tied up. I won't repeat here John Hannah's after dinner jokes about what that might be. OK magazine were there taking snaps. I certainly did not look glamorous enough to be featured but Paul should get in with a performance shot. It will be funny to see all the docs and nurses in there. They all looked really great. It was really nice to be there and support them but I am still not sure how I feel about watching people get drunk on the dance floor who, the next time you see them will be operating on your child or having to deliver those heavy 'we are reaching the end of the road, it is time to consider transplant' type conversations. It's just all a bit surreal. Perhaps it is a good thing we left not too long after the dancing was really getting going.

The picture at the start of the blog was taken at the Croydon Summer Festival. This is a great two day free music festival. We love to get there if we are home. We popped up for an hour or so this evening, between getting home from CHASE and getting Wills up on his TPN drip. Today was the Mela. We had a great time soaking up the atmosphere and watching some acts on the main stage, bollywood stage and the classical tent. It really has been a full weekend. Ellie said she felt like it had been a lot longer than a weekend and more like a holiday. I agree with that. It has been a very welcome break and an important one too given all that is coming up.

'The Happiest And Very Best Day Of My Life!'

I often use the term 'emotional roller coaster' on this blog. It is a term that often sounds a bit corny but it is how our life seems so so often. Today, Ellie was certainly on an emotional roller coaster. A ride that started up with the excitement of the day ahead then plummeted down when she heard that Wills is probably going to be in hospital on her birthday yet again, and then went up, up, up so that, in the end, she declared today 'the happiest and very best day of my life!" The pictures tell the story!!

We waved William off to CHASE with his nurse, waited for Hope to get home from school and set off to the theatre. We got there a lot earlier than I had planned but I am so glad we hung around! We picked up the tickets first and got our first lovely surprise. With the tickets were three programmes, personally signed by Lee for Hope, Ellie and William. The girls were so happy and, as ever, very pleased to see one for William too.

Ellie so wanted to catch a glimpse of Lee and give him the card and letter she had made for him. It was very early but we decided to go to the Stage Door where I was hoping to have a quick chat with someone and ask if they could ask him to say hello to her as he entered or make sure he got her letter. I explained the situation to a girl on the door who said she would try and talk to someone when they arrived but that it would be a while everyone would turn up. Just as she was saying that she said 'Oh, speak of the devil' and there was Lee!

Ellie got her moment, gave him her card personally and we took some lovely pictures. I gave Lee a very brief version of Ellie's story and why she loves his music and asked him to read her letter. Ellie was beside herself and kept on hugging me and giggling all night. I haven't seen her so happy in such a long time. Hope was very happy for Ellie but she is not so 'star struck'. Over tea, she told me that she thinks everyone is the same, just some people choose to be actors or pop singers - 'People like Lee are very talented and I really love to watch them do what they do but it doesn't mean they are anything special when they are just shopping or out with their mates really does it!' An unusual opinion in someone her age and very healthy too I think. Hope's highlight came later when she got to see backstage. She asked loads of questions about how things work and how practical challenges are met. She was fascinated by the how the back drop and curtain changes work, how actors deal with fast costume changes, the revolving stage and what measures are taken to make sure Joseph is safe when he is elevated.


We were invited backstage by one of the guys we were talking when Lee turned up. After Lee went in, he carried on talking to us and wanted to help make our evening special. Having met Lee so early, we were able to have a long and relaxing meal at TGI Fridays. Hope and I waved at Ellie up on the ceiling and threw her up the odd forkful of food and spoon of ice-cream! Ellie kept on grabbing us and hugging us with excitement.

The show was fantastic. The seats we had were perfect, near the front of the stalls and right in the middle. The whole cast are amazing. Both girls were really happy and excited throughout. I sat between them and it was so nice to be able to cuddle up together and enjoy an evening away from all the stress. None the less, I was relieved to get a text from the hospice to say that all was well with William. Ellie kept on saying over and over again 'I met Lee Mead!' 'I can't believe I met Lee Mead!!' We danced, sung and clapped our way through the 'mega mix' and had loads of fun together. There were a couple next to Ellie who were celebrating their 10th wedding anniversary and had left their own children at home. The poor things had an over excited Ellie chatting to them throughout the interval so they didn't quite get the child-free break they had hoped for. They did say they enjoyed Ellie's company - I hope so!

We then waited in our seats for the guy who had promised to take us back stage. It was fascinating to see everything. We saw how everthing worked, sat on the golden chariot and saw all the props and the animals. We were shown all Lee's costumes and all tried on THE coat. It is really hot and heavy. I am so impressed with how he bounds around the stage so energetically in it. On the way home, Hope and Ellie sung '

"We wore the coat, with golden lining, bright colours shining..."

and

"So Hope, Ellie and Mummy went backstage

No longer feeling cold

And Chris said we could sit in Joseph's chariot of Gold - Of Gold!

We wore your coloured coat, your amazing coloured coat!"

Ellie declared that her dress will never be washed again because Lee hugged her in it and she wore his coat in it.

It was a fantastic evening and we are all so grateful for CHASE for arranging it, the 'Really Useful Company' for donating our fantastic tickets, Lee for giving Ellie a few moments of his precious time and to Chris for showing us around the stage. Yesterday, I said I wanted to give the girls a really special evening to remember forever. All of these people made that happen. I know there are going to be more blogs about surgery and hospitals over the next few weeks. We will all be looking back at this one to cheer us up and I know the girls have a fantastic memory of a very special 'Mummy Day'. That is what was the most important thing about today for all of us. A special time together away from the stress and upset and a time where Hope and Ellie had Mummy all to themselves. This is why Ellie loves Joseph and Lee Mead's music so much. From the moment we decided that watching 'Any Dream Will Do' was our girly time with a rule of no non-urgent medical stuff, Ellie had those special memories of Mummy time. Her CD give her the same feeling when she is away and when William is ill. She now has a very special memory to think of to go with all that. Unfortunately, things have become more unsettled and complicated with William over the last year and the 'ring fenced' girly time got somewhat more ad hoc. We all agreed we need to find it again and have more special days out together too. They enjoyed and appreciated even little things, like going on a tube - impossible with William unless you know in advance there are lifts at all stations. For now though, there are two very tired and very very happy little girls tucked up in bed right now and that makes for a happy Mummy too.

Quick clinic report

We have just been to clinic. Poor Ellie had to come too as she has an inset day. I think she heard a bit too much and is somewhat subdued. William does need a relatively urgent operation to remove his gall bladder as he has 'obstructive jaundice' caused by his gall stones blocking the biliary tract. The good news is that that is why he has jaundice - in general, his liver is OK (ish - for someone on TPN!). Our consultant now has to contact Birmingham to see if they want to bring his transplant assessment forward before he has the operation or want the team here to go ahead. He may go to Kings as they had a specialist liver unit. William often takes a while to stabilise his stoma output after surgery so it could mess up the assessment. Oh well, we are set for another summer holiday in hospitel any which way... Must get Wills packed for CHASE now...

Has William thrown a spanner in the works???

Well, we are all set for a lovely weekend. Ellie is sooooo excited about Joseph tommorow and quite beside herself with any idea that she could possibly bump into Lee Mead at the stage door or the 'scrum' as we have come to know as the autograph signing frenzy after the show. She has made him a card and is busy writing a letter to stick in it - I have never seen her write so neatly! I am ready for the ball, I have my dress, my bling, shoes and even my VPL free undies. I will be able to do my own star spotting as there are rumours of some celeb attendance, and even stronger rumours of others - watch this space!

William is packed and ready to go to the hospice with his lovely CHASE nurse tomorrow. Granny is staying there with him so the girls and I can enjoy tomorrow and the girls are going on after the sibling day on Saturday so Paul and I can enjoy the ball. It is the first time we have had him there so we can all do our own thing a bit and I'm sure it will do us all good. I will miss him heaps on Saturday but will be there Sunday morning.

The only question is - will it all happen???

We had a liver ultrasound today and it showed that William has gall stones, caused by the huge amounts of bile he produces crystallising. William's intestines don't move properly so it can sit around a while. That would be bad enough and perhaps something to sort out in the near future. However, William's bilirubin levels are increasing in each weekly set of bloods. He is now a little yellow and doesn't seem all that well (although not in the way that makes us rush to hospital in fear of a life threatening line infection). He is having intermittent pain and his urine has been very dark for a few weeks. This suggests that one of the stones has blocked a bile duct, a much more urgent situation.

We have clinic tomorrow and I wonder if we will be coming home or staying in! I hope we can go home and come back in next week. If the worse comes to the worse though we will still see Joseph and go to the ball as both are in London and pretty close by the hospital. One thing is for certain, with this and the transplant assessment coming up, we are going to have another hospital dominated summer! All the more reason to do my very best to make sure the girls have a really fab evening tomorrow - even if it means a fruitless wait outside a stage door in the rain!!! Remember a similar situation Mum? Nik Kershaw on a dark, wet and foggy evening!!! I wasn't lucky enough to get a glimpse or an autograph at that stage door vigil but did get a personal one, thanks to a next door neighbour, a few weeks later. I will remember that if we are unlucky tomorrow and tell Ellie that she may get lucky another time.

Yellow (and red and green and brown and scarlet and black...) Oh and a ball!

We had William's blood results today - his bilirubin levels have doubled in the last week He is noticably yellow now, especially in his eyes. I knew this would happen but I didn't want him to go yellow Come on Birmingham!! We have a liver ultrasound on Thursday and clinic on Friday so I will know a bit more about what is going on. He is relatively well and happy - just yellow! The pictures show some of the fun the children have had over the last few weeks, in the sunshine - especially in our lovely new garden.

I have a great weekend coming up so hope to put all this behind me. Via the hospice, The Really Company' have donated tickets for Hope, Ellie and me to see Joseph on Friday. We have stall tickets so will be close to the action. The hospice were hoping to get us in to meet Lee Mead but his management are saying he is too overwhelmed with requests. I am a bit disapointed for them. Ellie loves Lee. We watched 'Any Dream Will Do' together and made sure William's treatment was over in time for us to sit down and have some girlie time together. When William was in hospital, we would phone each other afterwards and discuss how everyone was doing. Ellie associates this with me and listens to Joseph and Lee's album when we are apart when Wills is in hospital. She has them on to sleep and whenever she is missing me. It would have made her little life so far to meet him He does come out of the theatre at the end of the show but there are crowds there then. However, being the determined little thing I am, I have emailed his agent to ask if he could say a special hello to them when he comes out. I have also emailed Denise Van Outen, via Capital Radio. Of course, she will probably not even get the mail as I am sure her producer gets mail addressed to her but you never know, if she gets it, perhaps she can use her girlfriend charm to ask Lee to say hello to Hope and Ellie when he pops his head out of the theatre at the end of the show. Just a simple 'Ah, you must be Hope and Ellie. I heard you were coming, did you enjoy the show' would be enough to make them very very happy! The girl from the hospice said it is easier to arrange 'meet and greets' for the sick children themselves but siblings need and deserve these special treats just as much - if not more! In any case, we will have a special night.

Wills is at the hospice for the weekend with Granny. Hope and Ellie have a sibling day on Saturday and then will be off the hospice too leaving me free to go to a ball It is a Paul for Chelsea and Westminster paediatric surgery. We need an extra theatre. Paul is singing at it. We haven't been out together since I had Wills - nearly 4 years ago!! I am looking forward to that very very much.

Clinic report

Took Wills to clinic this afternoon. It really was one of those afternoons...clinic ran 2 hours late and then we arrived at Fulham Broadway to find the District Line suspended between Putney Bridge and Wimbledon due to fire - that was exactly where we needed to go!! We had to get a bus to Victoria and then I had to pay out for a train ticket. Don't you just hate that!! You just want to get home. I wanted to cry, I really did!!!

Clinic was OKish - nothing more or less that I was expecting. William's liver blood results have gone up a fair bit. They increased the number of days he has fat in his TPN from 3 to 4 as he wasn't growing very well. He has grown back up to his centile which is great but his liver doesn't seem to be coping with the extra. He is having another liver ultrasound in a couple of weeks and we will keep monitoring his liver blood tests. We are currently going to clinic every 2 weeks and will continue to do so for the time being - I have requested that we go back to Friday mornings as at least I can drop the girls to school, rush to clinic and be home to pick them up. I was expecting to be home by 4.30 ish and was home at 6.30! You can't push your luck (not that delayed clinics and travel chaos are my fault) when you rely so heavily on favours from people.

Apparently, our consultant had an email from Birmingham to say we have a slot for William's transplant assessment 'very soon'. She didn't tell me when but said we should be getting a letter very soon. She is still going to tell them about William's liver issues so it may be hurried up even more. Somehow, I don't think we are going to get a huge amount of notice.

A new journey about to begin

am sitting down with a luverly glass of red and listening to the Coldplay gig on radio 1 - What bliss!! Paul has had a rare day off so Wills has been glued to him all day so I have got heaps of work done and now I can enjoy the gig without feeling guilty for what I should be doing. The children are in bed and Paul is watching the footie - ah, luverly (sips wine and enjoys the excitement of 'Life in Technicolour' live...becoming 'Violet Hill')

I wonder if they will play 'Yellow' I always joked with myself that this would be our theme song if Wills got jaundiced. You have to find humour sometimes! Well, William's liver function tests are up a bit at the moment. Compared with some of the children who have severe liver disease, this really is nothing, but for Wills they are up and we are hoping this is just a blip due to all the infections he has had, and not the beginning of a downward spiral. We have clinic tomorrow so I'm sure we will discuss it all. We still haven't heard anything from Birmingham so I am hoping they can chase it up and see if William has a pencilled in slot yet! (Ah, 'In my Place' - one of my total fave songs ever!!!! I think Coldplay are my fave band these days – although The Cure and The Smiths will always be up there)

I am really feeling nostalgic and reflective now. Appropriate for this blog really. Regular followers of my ramblings will know that I have been thinking a lot about all that life has thrown us and how I put all the pieces together. Followers may also know that I am a committed Christian and truly believe that God wants me to use our experiences. Sadly, so many people go through some of the things we are going through. I have been privileged to have the opportunity to share their world and understand, really understand and empathise what they are going through. Chaplains come to the wards and talk to us all and everyone appreciates that (nearly everyone) and draws a lot of strength from what they say. However, they don’t know what it feels like to be standing there in the shoes of that parent who has just been told that their child has to undergo lifesaving surgery that may kill them or that there is a real chance that their child will die before they reach their teenage years. I can give them the hope and comfort that their visitors give but, more than that, when I can say, in all honesty, that I know how it feels for them because I am there with them going through the same. This is central to the Christian Faith as God put Jesus in the same place as the people he was reaching out to so that He could relate to them and empathise with them. I am getting dangerously close to being far to heavy and religious here so I will just take a step back to enjoy ‘Viva La Vida’ – wow, I love that song, I’ve been listening to it over and over the last few days.

Anyway, I have enrolled on a HE Certificate in Theology and Vocation. William starts school in September so I will have a little time, along side my job, to take on a new challenge. I feel I really have to develop some kind of ministry based on what is going on in our lives. I know I could reach out and help people cope with what they are going through and my faith is my rock and what enable me to wake up in the morning with a smile on my face, ready to tackle what the day has in store for us. It is what enables me to go to sleep each night thanking God for something that has happened, even in the most worrying days. So, for me to be able to help others it has to be within a Christian context. For now, I will focus on writing for Christian publications and hope to give some talks as well (so if anyone knows of a group or occasion who use speakers let me know) At the same time, I will carry on talking to parents I meet in hospitals. I will weave more theology into my writing and talking as I learn and develop and who knows where it will lead…

The week ahead

As ever, thanks for your lovely messages of support. It means soooo much! Wills didn't have his notox yesterday. They needed to plan a bit more as he can't have oral sedation so will need IV sedation in a staffed operating theatre. This is planned for Tuesday. At least he can enjoy being on his feet for a few more days. Libra - he is not having walking plasters and is not allowed on his feet during the process, not at first at least anyway. After a while, he will move onto 'barred boots' A pair of boots on a board with a bar between them. He will wear these for a set amount of hours a day, while resting and sleeping so will be able to be on his feet inbetween. There is still a chance he will need surgery after the initial 4 week trial of serial casts following the botox. I am not too chuffed about that but they have explained that he will be unable to walk much longer if we don't fix his feet a bit now.

On Monday, we will discuss mre details about the transplant assessment and we hope to have an idea of when we may go by the end of the week. This has become very urgent as William has virtually run out of veins to but his hickman line in for his feed. He has had 12 lines and most of his main veins are now thrombosed (scarred). This line is really precious and we are no longer allowed to use it to take bloods, so the poor thing will have to be a bit of a pin cushion for a while. The next line will have to go into the hepatic vein that flows into the liver. This is very tricky to use for TPN and the insertion is not straight forward. They have now established that William is completely 'unfeedable'. This, together with tricky line access and recurrent life threatening line infections has made the assessment all the more urgent. Everyone here is expecting Wills to go straight onto the active list following the 2 week assessment at Birmingham. Apart from these discussions, and the botox, next week will be spent stabalising his TPN (intravenous feed) so we can go home on Friday :-) :-) Once again, 'a few days' in hospital has turned into a month!!!

Botox on a Friday (or Tuesday) afternoon

Not for me, although I couldn really do some with the ever deepening worry lines. William was finally seen by an orthopedic doctor about his 'deformed' feet. You can wait ages for such referrals but, all of a sudden, physios appeared and the next day bought along an orthopedic doctor or an 'orthopod'. His verdict -lots of long latin words to describe the abnormalities in William's bones and tendon. The solution - botox injections into the back of his ankes. followed by 'serial castings'. This will be a long process where plaster casts are put on his feet and up to his knees. The first one will be put on immediately after the botox and each week he will go to orthopedic clinic to have his progress reviewed and the angle of his casts gradually altered to correct his feet. This will happen today or Tuesday. After 4 weeks, we will assess if this is working and, if so, continue...for several months If it is not, he will need surgery to lengthen the tendons at the back of his legs.

I didn't really want to do all this before his transplant assessment but have been told it is necessary ASAP or it will be too late to correct. We always knew this was progressing and he may not walk for ever. However, it was thought to be part of a degenerative condition. It seems now that he has a rare, genetic gut problem called 'tricho hepatic enteric syndome', THE for short and, along side this, mild cerebral palsey. Separating these out has made his treatment plans clearer - intestinal failure = TPN and transplant assessment and cerebral palsy has its own tried and tested ways of addressing various problems, such as correcting foot deformities caused by tight tendons or 'spasticity'.

It is all progress but painfully slow and unpleasant for William. He is 3 years old and stuck to a 2 foot drip line 20 hours a day. Now he will have both his legs in plaster and won't be allowed to walk and run around with his walker for as long as it take A toddler confined to a chair for many weeks, perhaps months. I think I will write a toddler entertainment book.

'I think William now meets the criteria for transplant'

We are back in hospital as Wills is still not right following his line infection.

Today, a slightly arrogant (although I often think this when I meet a new doctor for the first time and change my mind when I get used the them) young locum registrar told me William's platelets are up and it doesn't look like his low grade temperature spikes are any concern so we can go home tomorrow. Naturally, I believed him and was very pleased. When I asked his gastro nurse about transport home with the TPN we had with us, he was a tad confused so spoke to William’s consultant. She came in for one of ‘those chats’ and, boy, was it one of those! William can’t go home until Monday at the earliest. Sad though I am, that is sensible. He is not completely right, not too bad, but not right and is now spiking high end of low grade temperatures when we go into his one of the lumens on his line which is a bit ominous. She said we may loose the line but we hope not. She also said that William now meets criteria for small bowel transplant. This has always been something for consideration in the future and, last month, the idea of going for assessment was to see if it was the future the team and we, his parents, thought was best for him. Now, it is felt that this future may have arrived. He has had/has got yet another line infection. He can, and has, become critically ill with such infections and the combination of another failed gut challenge, his increasingly enlarged liver and spleen, uncontrollable ‘massive’ (medical term!) stoma output and the fact that the illeostomy, although making him more comfortable, has not stopped the bugs from his gut translocating into his line, has led to the conclusion the time has come when a transplant can be seen as a life saving procedure and the complications of TPN are an immediate threat to his life. If we loose this line, we will go into his 12th!!! We are running out of venous access. Of course, I was somewhat shell shocked. We will probably be at Birmingham for assessment within weeks, a couple of months at most, and could be on the list at the end of the two week assessment. Of course, they may decide that he is not suitable or that he does not yet need to be on the list but, for the first time, doctors are saying that they think the time has come. They have spoken to the transplant team about him recently so this is not just the Chelsea team thinking this in isolation. A large part of the assessment is for the parents to decide if it is what we want for him so I am trying really hard not to make my mind up before I have all the facts. Paul is certainly more open minded than me (right now, I want it for him because, even though it is a risk, it is a chance!!!). Paul is a bit more stuck on the risk element but I think my little fighter could come through it. Being in and out of hospital so much and with so much uncertainty in life is tough on the whole family and I have to think of the girls as well.

Challenges set and failed

This is another catch-up blog. I really will try harder to keep this up to date. It has been another hectic few weeks with, yet another, stay in hospital. William has been very well since coming home from hospital after his illeosomy and we had all been enjoying time together as a family and doing every day, normal things. Of course, life still revolved around TPN and William's other medical and physical needs but we were home and together.

We needed to try and see if William could cope with the octreotide, the drug that could reduce the huge abount of fluid he loses through his bowel. We also needed to challenge his bowel again to tolerate something going in. Hope and Ellie were staying at their Dad's for a week in the Spring break so I requested that William went to hospital to do all that while they were away so we didn't have to worry about where they would go. So, on the second Monday of the school holidays, William and I went into out Chelsea Pad with strict instructions to the doctors that they could experiment all they liked but we were to be home by Thursday afternoon. We tried a tiny test dose of the octreotide. The first dose gave him a localised skin reaction but the second made him red and mottled all over. So, that option went out ot the window! As we had a couple more days, the doctors decided to challenge his gut with 5 mls per hour of diorylyte. This was swiftly stopped as it increased the output of fluid through his bowel and was making him dehydrated. With this, the doctors realised that we were not going to be able to increase this into a substantial amount of feed to reduce TPN and have him fed, in part, through the gut This feeding pattern would have best helped protect his liver from the TPN but even a tiny bit of something offers some protection for the liver so the next plan was to try 5 mls of neocate (special baby milk with all constitutes in their elemental form, i.e. as if already broken down by the gut) four times a day. This would offer better protection than diorylyte. William's response to this was described by the doctor as 'spectacular!' He lost 3.2 litres from his gut and ended the day we were due to go home dehydrated, unresponsive and with 3 gut bugs living in his line as a result of everything becoming stirred up by the response of the gut to the feed. Far from going home, William instead spent the night keeping the on call doctors busy checking on his responsiveness and prescribing antibiotics and fluids. By the next day, Williams red cell count, neutrophil (a white cell) and platelet counts had dropped and he needed a blood transfusion. We stayed over the weekend and came home to continue IV antibiotics. The girls missed stayed on at their Dad's a few days longer than planned and missed the start of term. So, all in all, a bit of a disaster really!!! We have clinic on May 20th and will discuss where we go next. William's consultant is keen for him to go to Birmingham sooner rather than later for transplant assessment. Although he is not sick enough to go on the list as yet she hopes this will enable us all to see if this is where he is heading and if it is what we want for him. His liver and spleen are now enlarged and, although his liver is still functioning well, his spleen is not doing all it should in fighting infections and producing/regulating blood cells.

We were in the 'Mail on Sunday' 'You' magazine today in an article about 'Wellchild' the charity that organised our garden makeover. I didn't know the article was in today so couldn't tell anyone but it is a good article so check if anyone has it before recycling day.

Referral for transplant assessment

We were at clinic this afternoon. Soon after coming into the hospital, I bumped into one of the play specialists and learned that another of the gastro children died on Easter Sunday He was 18 months old. This child had so many problems it was amazing he lived as long as he did. A real fighter. That is 8 gastro kids that have died since we have been in this world. It is so sad and scary. My thoughts and prayers are with the family. We shared a room with them for several weeks during William's last admission.

I also learned some good news in that one of the other children who was not expected to come off TPN is doing so well that she has weaned right down to IV fluids only and may well be free of lines in the near future.

William had an ultrasound today. The report was not ready in time for clinic and the radiographer was not saying much except that his spleen is enlarged enough to be obviously so by eyeballing the scans. He actually has a bulge from it. All this will be fed back to Birmingham. William's consultant is keen that he goes for his transplant assessment in the near future. He is not sick enough to go on the list yet but it would tell us all if he is suitable and, if so, what the parameters to go live on the list would be for him. It will also tell us if we want to put him through it. The current prognosis is 50% chance of survival. That has actually gone down since Paul and I went to Birmingham for an initial chat about transplant. They have not done many small bowel transplants in children and the stats change according to outcome. The assessment will involve 2 weeks at Birmingham Children's Hospital where Wills will have loads of tests and we will have lots of counselling sessions and discussions so we can make our decision as well. It will be very intense.

Wills is OK but still losing too much fluid through his bowel. So, we are going back to our chelsea pad next week to try a new drug that will be given via a subcutaneous line. He tried this last time but had a reaction to it. However, it was given IV through his central line so we are going to see how it goes subcut. Of course, having had a potentially allergic reaction previously, this has to be done in hospital. If the drug works, we will try to challenge his gut again with a little diarolyte. We will only be in Monday - Thursday so it won't be too bad. The girls are away at their Dad's so it is a perfect time