Day +57 and New House Day!

We bought a new house today, I am going to see it tomorrow. It is a bit of a wreck so we have to get a plan of action together. I am going back to Brighton tomorrow to have a look at it, it will be strange to be more that 100m away from GOSH! Ater today I am sure Red Ruth will be fine with Jesse. We had a strange day, another ward round without a senior consultant. Jesse's dose of cyclosporin (immunosupressant) has been reduced, but he has has more cidofovir(anti adenovirus-it depletes the blood counts and is toxic to the kidneys) and rituximab (he has had a flare up of EBV-Epstein Barr Virus-a virus that lives in a lot of us and is only dangerous if you have no immune system, it can attach itself to the B-cells and deposit in the lymph glands and then cause lymphomas).

I have to stop now. I am looking forward to being in Brigton, in the meantime I am falliny asleep[;/.lo-

Day +56

Yes, it has been eight long weeks since transplant and we have had yet more to deal with today. I was taken into a room for an hour and a half to have a meeting with Nick Goulden (cosultant) and Kanchen Rau (nearly consultant). They said the one thing I have been dreading all along, they want Jesse to go back to nil by mouth. I knew it was coming but am very pissed off because on Monday I asked Kanchen if I could increase fluids and food intake incase things might improve, having checked that doing so wouldn't cause any damage to the gut. She said that would be fine. But two days after his diarrhea went sky high they are now wanting to take it all away. Yesterday I had withdrawn cranberry juice as I think that was the culprit and his output went from 2.7 litres to 2 litres and is down again today. None of this washes with them, they say it should be no more than 0.5 litres. I won't go into the ins and outs of the meeting as there was a lot covered. I managed to put off the day till Monday (at the latest as the consultant said), as I am planning to go to Brighton for the day on Saturday and Sunday is a bad time to do anything in this hospital, it is so deserted it feels like a ghost town. I'm hoping his output may have reduced by then and so they'll think again. I know its a long shot but its worth a try. I am weaning him off some foods and restricting his input on the basis that it might help and if it doesn't at least it will have been a more gradual process and so not such a shock. I have told him about the possibility already and he isn't happy but at the same time he isn't as unhappy as I thought he would be. I'm not sure if I've mentioned this but we are buying a new house tomorrow. The old lady who we are buying off has lived there for 48 years so it needs a lot of care inside and out! Albie is going to help and we may have found builders but it is going to be very difficult while I am here. So I need to go back to Brighton to look at the new house and get a plan of action in place. Wonderful Tim was all set to look after Jesse on Saturday but he has a coldy thing that Zara and Eva have too so I don't think we should risk It. Lovley Red Ruth is prepared to have a go; it is very kind of her and I think Jesse will have a whale of a time!

That's all folks...bed time for me!
C
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Day +53, +54 and +55

Photo of the Day




Jesse finally had a dough ball!!!!!!!!!!!!!!!!!












Sorry I haven't written for a bit, Jesse is up early every morning and doesn't stop all day so it is very hard to find time. He won't watch TV (except for Raven), or DVDs and he won't play on the computer anymore so he needs attention all day. I'll try and write this entry all day so by the end it should be up to date!

Ok so that plan didn't work, here I am gone midnight three days behind. It's like anything, if you leave it that long there is too much to say and you can't face it. But I'll give it a go or you'll all get cross with me. Basically things are pretty much the same if not a bit worse, sorry, the happy pictures are rather misleading. On Monday Jesse was on good form. The beautiful Red Ruth came by at lunchtime and we took advantage of line free time and escaped to Starbucks for a drink in the sunshine, Jesse had just had his first dough ball, was very happy and enjoyed every last taste of it...(the hassle I had getting it up for lunch was unbelievable, the cook refused to do it as it hadn't been authorized by the dietitian, she said it was down for tea and couldn't be cooked four hours earlier).

I knew it was ward round and was keen to see the doctors as I had a number of concerns to raise so I asked our nurse, Tara, to ring when they started, which she did. I told her we would be back in 20 mins, which we were. We sat outside our room and watched the doctors making their way up the ward, over an hour later I realized they had gone...without seeing us. I was livid and eventually they returned, three hours later. So we had wasted our line free time and the glorious weather, very frustrating. I managed to grill the consultant and got some answers and some apolgies. I won't go into it all as it is very convoluted, but in a nutshell I found out that they are sure Jesse doesn't have GVHD of the bowel and that the only thing to do it wait for his T cells to develop and kill the adenovirus. I established that eating won't damage his gut, so they agreed that we could increase his quantity of food and add juice to his diet. They also told me they had checked his blood on March 15 and found he still had 100% engraftment, I was shocked they hadn't bothered to tell me. I have been so worried over the past two weeks as Jesse's counts have been going lower and lower. No-one mentioned that cidofovir, the treatment for adneovirus, depleates counts. I have been worrying that the transplant might have failed. I managed to get an apology, which is something I suppose.

So I threw caution to the wind and let Jesse eat and drink a lot more, with disastrous consequences. Yesterday Jesse pooed 2.7litres (equivalent to 2.7kg) in 24 hours, an amazing figure considering he only weighed 16.1kg, heading for a fifth of his body weight. They nurses weren't too concerned as he was drinking so much, but this morning the doctors were very grave. I did protest as the doctors had OKed it on Monday. My reasoning was that if it doesn't harm hin then it can't hurt, it may flush the virus out and eventually it would start to get better. I got scared that the doctors might put him on nil by mouth again, so today he has only had water. Amazing as I write Jesse's poo is 0.6 litres down on the same time yesterday.

Over the past few days Jesse has been having wee problems, cloudy urine, pinkish urine and last night he started passing blood clots and complaining that it feels like he had got a lot more to go just as he finishes. I kicked up a big stink about this yesterday, as they were doing nothing, just sending samples for for testing. They booked an ultrasound, which showed a large blood "clot" or lump in and a thickened wall of the bladder. It is called Hemorrhagic cystitis, and is another serious consequence of BMT, luckily the clots in the wee don't hurt, although they if he has to pass a large one...So yet another reason to keep us in.

I'm falling asleep, so will finish,
lots of love
Claudia
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This was a great puzzle, lots of things going on at once! We are quite far on with another, a cricket scene. It is very difficult, there is loads of grass and sky, but we are determined to do it!

Day +52

Photo of the Day






My beautiful littlest boy whom I've missed so much!









Derek, Bernie and Chloe visited today. Chloe, Bernie and I were going to visit a baby clothes wholesaler in the East End today leaving Derek in charge, but they were only open till 2pm today so I had left it too late. I made an order by phone which they will send so it wasn't a dissaster! We had a fun day. I played with Bernie and gave him lunch then Chloe took him out for a walk and a sleep. It was good for Derek and Jesse to spend time together, we all worked on our latest 1000 piece puzzle entitled "The Great British Seaside". It is a very busy scene. We finished it this evening and are set to do some more...

I feel so much happier having seen Bernie two days in a row. Yesterday and the first part of today he got very upset every time I left the room but by tonight I think he felt more confident that he would see me again and so when he left to go home he did't cry, he solemnly waved. At the end of last week it felt like my heart was breaking, now I feel so much better! After next week Derek and I are going to share caring for Jesse and so I don't think we'll get into a situation where I don't see him for so long. I am very tired so I'll finish now. Thank you for the bum poems, Jesse thinks they are very funny, I think we should know the authors though! More tomorrow probably,
lol
C
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Day +50 and +51

Writing the title to this blog gives me a shock and probably explains the heavy feeling I have had over the past few days. It is now 50 long days since Jesse had his new marrow and there is no prospect of leaving here in the short term. At ward round yesterday the consultant, Nick Goulden, said that we would be here for quite a time yet, something I have been becoming more and more certain of. I asked him if he meant weeks or months and he wasn't able to answer. The best he could do was to say that it would be weeks but could be longer, and that only time would sort Jesse out. You see the doctors don't have all the answers, many of us on this ward are very aware of this, and it isn't a good feeling. They don't know how to stop Jesse pooing for England, there is no real treatment except waiting for it to go away and of course they don't know how long that will be. The adenovirus is back (on Tuesday they told me he was pretty much negative). I was happy to hear this because I fear GVHD and the damage it does. Adenovirus Jesse can beat himself in time, GVHD he can't. And at least it gives explains why he has been pooing so much again. Recently I have obsessively keeping a record of everything in and out through the day, mainly so I can track how much is coming out of him. On good days I find myself elated, thinking this may be a breakthrough, on bad days my heart sinks every time he says "I need a wee" because it is rare that he only does a wee, and as the totals mount I start to despair. The volumes that Jesse is losing on a daily basis mean that coming home simply isn't an option. He needs so much replacing that he has to be here, every other day he has to have a 4 hour IV drip of albumen (a protein he keeps losing), plus potassium, phosphorus and magnesium, all of which is added to his TPN (his IV nutrition). They also replace his stools loss with fluids IV and through his PEG.

At least the doctors have agreed to allow Jesse to continue eating, they say that they have to consider the psychological effect on his well being and can see how important it is for him to eat. They told me that if he were a baby they would put him on nil by mouth as he wouldn't be able to complain...poor babies. The nurses, however, are supportive of him eating, they have seen that it can turn things around. I think if he wants to eat then he should, at least if his bum dries up then his tum will be used to food. We have had no vomiting since Monday, in itself a massive breakthrough.

I wrote the above this morning and haven't had a chance to finish it...the rest of our day on Friday was OK. We got in a taxi again and went to Buckingham Palace and Westminster Abbey. We got out and looked around the Abbey for a bit and Jesse was a loquacious as before. This time the clock ran to almost £25 again , so I started to get money out, gave the driver £20 and immediately he handed me back £5 and said "Put it in the box for me".

Jesse had three horrible nosebleeds and a platelet transfusion as a result, it was very distressing for both of us and so on Saturday morning he was feeling very low. He had a horrible blood clot in his nose that he couldn't pick and his spirits really sank. Luckily through the day they rose again, Tim visited, we made microwavable popcorn, Derek and Bernie visited and Tim and Jess made headway with our new puzzle (we'll put a photo up when its finished). I fell 100% better for seeing Bernie tonight, what a perfect bundle of humanity he is! He is boisterous, funny and confident, and best of all he remembers who I am! He is coming again tomorrow, I can't wait to see him.

I will write more tomorrow, it is now 3.25am new time and I have to go to the East End to buy white stuff to dye tomorrow. I was up late having a glorious supper with Tim and then chatting with Emma (Liam's Mum) and Caroline (Stefan's Mum)...both of whom are real characters and very funny...when I got back to the room, Jesse was awake saying he was hungry. I said he had to wait till morning as he was having an overnight milk feed, but he pointed out the liquid was clear. That boy is really on the ball, he never misses a trick. It transpired our nurse had put up dioralite instead of milk, so Jesse had missed 8 hours of feeding. She was mortified, I was pissed off, Jesse was vindicated! So he has just had some pitta bread and the milk is on at a higher rate till 10am. I'll tell you about the nose bleed fiasco that happened last night another day...night, night, sleep tight,
love
Claudia
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Day +48 and +49

Photos of the Day



Thanks Dymphna for these brilliant photos, Jesse thought they were both hysterical. Cory and his cousin celebrating St Patrick's Day and Niamh and her cousin in the jacuzzi!













Sorry I missed a post yesterday, Jesse really needs one to one full on attention all the time he is awake (7am to 8pm) and so if I have a visitor in the evening it is difficult to find time. Yesterday was a good day, nearly half the amount of poo from the day before. It is amazing how pooing just under a litre can make so many people so happy! Jesse had a great lesson, he giggled his way through it. He had enjoyed his 7 chips for lunch and tolerated a milk feed through his peg all night (only at 7ml per hour, but that is a lot for him). We went for a walk round the block in the afternoon and kept going with J & V's impossible puzzle! In the evening Red Ruth came to visit and we got quietly tipsy in the parents' interview room, it was really good to see her. Our night was relatively peaceful.

Jesse was awake and thinking about breakfast well before 7am. He started the day on good form but had a couple of funny moments, later he told me he had had some quiet mild stomach pains. He also did a lot of poo, in 12 hours he did almost as much as he did in 24 yesterday. Of course I then start worrying, or maybe I should say, panicking that it is GVHD again and that we will be here forever...Because the volumes keep changing (and he is on antibiotics so they muddy the water...no pun intended) the doctors don't seem too worried. The dietitian says Jesse can have liquid aminos on his wheat free pasta (like soy sauce but nicer), white bread, popcorn and even dough balls on Monday! Of course Jesse was thrilled. He has just woken and is so excited at the prospect of a little bit of salt on his chips tomorrow, which she also OKed.

Derek was able to pop in for a bit before his lesson as he was working in London for the day, I know he was pleased to see a real improvement in Jesse. I really hope Bernie is well enough so they can visit on Sunday. I miss that (not so) little baby so much. By the way Helen, thank you for the photo, it was lovely to see Bernie eating with a spoon!

This afternoon we had a line free couple of hours but it was cold and overcast and there was nowhere to go, so we decided to jump in a taxi and go for a ride. We were lucky; our taxi driver was great. I suggested Hyde park or the river, he thought the river would be better traffic wise. Jesse sat in the fold down seat so he could see out better and our driver took us on an inspired route! We went over Waterloo Bridge, past the London Eye, back over Westminster Bridge and past the Houses of Parliament and Big Ben, then round St James's Park, past Buckingham Palace, then back to Westminster Abbey, past Downing Street and round Trafalgar Square and back via Bush House to GOSH. It only took 40mins and on the clock we were nearly up to £25 but when we got out the driver said he would accept no more than £15, he was very insistent so I had to give in! The moment Jesse saw the Houses of Parliament, he remembered that he had lived there in a past life, as he had in three houses we saw in and around St James's Palace, and in Westminster Abbey. It was wonderful as I haven't heard that kind of Jesse talk since we came in here. He said he had organized all the gold on Westminster Abbey and on the lamp posts, and every military statue we saw was of him in one of his past lives. He had been King of America and England many times and told me all about his crown, made of silver and gold and covered in diamonds. He even told me that Nelson had been one of his friends but he had never been a Lord, and he had known him up to the day he died. He didn't stop talking once, it was such a treat after all this time!

I must go as it is nearly 1am and I am very tired. I had been feeling very low this evening thinking that we will never get out of here (there is a little girl the same age as Jesse, now on Robin ward, who has been in for 6 months post transplant, I think with very similar problems). Having written about our day though, I feel much more positive as there clearly are improvements and Jesse is as the doctors keep saying "clinically very well". Jesse and I were talking about it yesterday and he said to me "You know Mum, it is really like a battle". I agreed with him and we decided that it was a long and hard battle, but that we had won lots of it aready; he had had a successful BMT, almost beaten GVHD of his skin, fought the vomiting, defeated adenovirus and now we just had sort his bottom out. To his great amusement I suggested it was the battle for Jesse's bum that we needed to win, henceforth to be known as "The Battle of the Bum!" And on that note I have to share our other excitement of the day...we have got a commode! It doesn't sound like much but to us it means a lot. As you may have gathered everything that goes in or comes out of Jesse needs to be measured. So he has to sit on a bedpan on the floor but as Jesse's legs are very weak I have take his weight from under his arms and lower him. Over the past few days my knees have become quite painful and I am terrified of dropping him, especially in the night if I am sleepy, also crouching on the floor is undignified and uncomfortable for him. It only transpired we could have one when I commented to our nurse, Lucy, that it would be good if such a thing existed! And hey presto-it did! Just like the cord with a button on it so that Jesse can call a nurse if he needs to without getting out of bed!

Anyway, enough of this rambling. Thank you for the comments, jokes (esp Charlotte) and the alliteration (Jesse thought it was funny at first, but got annoyed with me when I kept doing it!)

Love
C
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Day +47

I stayed up late with Lily last night so decided to go straight to bed without doing the blog. I'll do a quick resume now. Despite a temp of 39.7 at lunchtime, Jesse was on good form, eating and being himself. The poo rate went up rapidly though, back to almost 1.5 litres. I don't know what the doctors will say, but I think we should brave it out and see how it goes. They may want to stop him eating. I know the antibiotics make him poo more so I will argue against it...

Lily visited on her way back to Brighton from Glasgow, it was so lovely to see her, I got lots of hugs! She was pleased with Jesse, although physically he has changed a lot, she felt he was back to being himself. Four weeks ago when she last saw him he was a very different person, withdrawn and fragile. Last night he was cheeky and bright, they worked on the train puzzle and together we finished it! Tim came by too, he and Jesse worked on their menus. When Jesse went to sleep I made everyone one of my delicious hospital tapas meals and we had a good evening.
Love
C
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Day +46

Hi Guys, I'll be brief. It is one o'clock in the morning and I am very tired. Jesse is awake but quiet. We had a hard day...it all started quite normally...Jesse calling "Wake up Mum, it's seven o'clock!" and "When can I have some rice krispies?". We did breakfast, had baths, got dressed and were easily ready for ward round and lesson, when Jesse threw up (or up-chucked as they say in Canada) his rice cake and then some bile. I was very disappointed as I had already talked to the doctor about his weight loss how I felt that he was ready for more food. Ten minutes later Jesse's teacher Louise arrived and Jesse fell asleep!

Am so tired I'll do a synopsis of the rest of the day and fill in tomorrow...

Ran round to Weston House (100yds over the road and up 3 flights) to do washing...machine full, other broken...saw red, complained to PALS that there is only one machine for the whole of GOSH and the patients hotel...let off steam...he said he agreed it was appalling (pathetic was his word) and would get back to me tomorrow,

then meeting with dietitian who was v pleased with the slightly less poo over the weekend, not worried about vomiting, said he could have chips and pitta and larger portions and start a milk feed overnight through his gastrostomy at 5ml/hr. v pleased as beginning of weaning him off IV feeding and so a little closer to home,

J woke 2 hrs later very hot, temp 38.8, with very red hands,

IV anti-biotics started, blood cultures taken,

temp goes down steadily as do hands.

I wonder if the GCSF yesterday overstimulated the new marrow (it makes it produce extra white cells) and because Jesse is on a half dose of steroids since Friday it may have kicked off GVHD, if not could be an infection due to low neutrophis...anti-biotics give Jesse diarrhea...it feels like we are going round in circles,
then good afternoon, no temp, no vomit, not too much poo, chips and pitta,

worked on tricky train puzzle Venetia and John brought to us last week (thank you again!)

then bed for J
and now bed for me too,
C

Day +45 Happy Mothers Day!

We had a very quiet day. Sadly Bernie came down with another cough, cold and runny bum yesterday so he and Derek weren't able to visit. Derek and I feel so torn at the moment. I know Derek is really missing us and says the house is strange without us and I am desperate to see everyone at home, especially Bernie. He is growing up without me and I can't think about him without crying. He started nursery on Thursday and was fine and is now feeding himself entire meals with a fork or spoon! In three weeks I have only seen my baby for two afternoons, it is so sad. And of course Derek has only seen Jesse twice too. And in eight weeks I have seen Albie and Lily once and Stan twice, so it wasn't really a happy mothers day for me. I hope some of you managed a good day!

Jesse is fine except that he keeps pooing (I tease him that his poo quantity is the same a 13 elephants output!) and he is really hungry but not allowed to eat. Tonight he is down to 15.8kg with his clothes on (he came in at 19.3kg). I can hardly bear to look at him in the bath. I will try to tackle this with the dietitians and the doctors on ward round tomorrow.

To add to what was already a depressing day, Jesse's neutrophils were so low today that they couldn't be read. Of course I went into a panic about it (they have been dropping steadily since last Sunday), but the doctor reassured me it was totally normal as his new marrow is immature. In fact she was surprised that he hadn't needed GCSF treatment before. So that is what he had today, but because his white cell count was so low he wasn't allowed out, not even in the hallway or the playroom. And just after we had this news I went into the playroom to get some dragon pieces I had sorted from the virtually impossible 1000 piece jigsaw puzzle we had started yesterday...only to find all our hard work of the past couple of days cleared away in to the box! Jesse was pretty upset and so was I. It turned out a "new admission" (a girl of around 5) had been left unsupervised in the playroom and had decided to tidy up!

I managed to persuade the nurses it would be OK to bring a table into our room (the play specialist wants to get rid of it) so we now have somewhere to do puzzles undisturbed. We finished a 250 piece maze puzzle that Maggie brought (thank you) and I think we'll tackle the big one again tomorrow. Wish us luck!

Hello to all those occasional voices out there, Robb, Nicola, Niamh, Cory, Annie, Finn, Annie, Zara and to the regular commenters too. Jesse loves hearing what you have to say...thank you!
Love
C
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Day +44 Happy St Patrick's Day!

Photo of the Day
Jesse loved sitting outside Starbucks chatting with Granny and Maggie in the sunshine.



We had a much better night last night and a great day. Jesse is hungry all the time and hasn't been sick since Wednesday. He is allowed to eat small amounts every two hours so that is what we will do all day. Saturdays are always lazy as we don't have to rush to bath, tidy up, change linen etc in time for Jesse's lesson at 11am. So we were in pyjamas till 1pm, busy with a very difficult 1000 piece maze puzzle.


We made it out into the sunshine and met up with Maggie and Granny. Jesse had a brilliant time making plans for Granny to visit Greatham and join in the feast he and Tim are organizing!

TO BE CONTINUED...AM GOING OUT WITH RED RUTH NOW...C X
Ruth and I opted for the Vegetarians Paradise Bhelpoori House, we started with two different chaats (crunchy, tamarindy, yoghurty things) which were very delicious...but just as they were serving our curries the hospital rang...Jesse needed the loo. So, curries packed as a takeaway, we rushed back. I settled him and then Ruth and I had a great evening tucking in and chatting in the playroom.

Jesse had a transfusion through the evening, his hb had dropped to 8, this is normal as they are constantly taking vast quantities of blood for testing. Later our night was quite disturbed with lots more pooing, I don't really understand why he waits for the night, it is very strange?



Annie as a possum!

Day +42 and +43

Photo of the day




THE BROWN TEAM!
Tim and Jesse happily watching Raven...





Hello everyone! OK, OK, OK...here is the latest blog entry. Sorry it is late, I was very tired last night. Yesterday was a good day. Jesse wasn't sick at all! He ate all day, very small quantities and was in a good mood. He had a fantastic lesson! His teacher, the lovely Louise, brought up an interactive web cam that meant he could see the GOSH schoolroom (which of course he can't go to). They had some top chefs visiting and they were doing ready, steady, cook with the kids. They all gave Jesse a wave, and he waved back. Then one of the chefs brought up a beautiful box of fruit sushi they had made which I had for lunch! In the afternoon we went out and met Maggie. We walked round Russell Square, saw the fountain and then we sat outside Starbucks, but the sun went in. We were hoping to see Granny too but she couldn't get away, I know Jesse would really like to see her soon. We did four puzzles yesterday, two Jesse did all by himself and most of the other two. We had a nasty moment when we thought we wouldn't be allowed in the playroom because Jesse has adenovirus in his wee, but actually infection control says he just has to wash his hands...Phew!

In the evening I escaped for a delicious Italian meal with Venetia and John. We went to an Italian restaurant on Southampton Row that hasn't changed since the 70s. They even have a sweet trolley! It is very funny and strangely comforting...It was great to get out and I was feeling very positive, as ever they were very good company!

Within half an hour of coming back, Jesse was awake, it was the start of a very exhausting night. It felt like we were awake every hour for a wee or a poo or a drink or observations. In six hours he pooed nearly a litre (having done hardly anything all day). It was very disappointing. Jesse woke at eight this morning and was sick immediately. The nurse had given him fizzing phosphate and penicillin syrup (when he has been having a crushed tablet up to now). So he threw up the medicine and didn't feel great. He wanted breakfast but I persuaded him to wait. So we went for a walk...this time 12 trips to Hedgehog ward and back. I was exhausted! But then Jesse became very weepy, I'm not sure whether it was hunger or exhaustion, but he just started crying non stop and there was nothing I could do to console him. So I just left him and eventually I moved him onto his bed where he fell asleep. He missed his lesson. He woke at 11.15, sat up, and said he wanted to go for a walk. from then on he has been in much better spirits. He hasn't been sick yet and has eaten a little. Red Ruth came by at 2pm and we were able to go for a walk and a sit outside Starbucks. But even though we were in the sun, the wind was bitter so we couldn't stay out long. Nick Goulden, out current consultant, and the team of doctors are very pleased with him. They have halved his steroids today, and will keep him on this for at least another week. I pushed them to give me an idea of when we might be able to come home. They best they could do was at least three weeks, I was expecting longer so was quite pleased, but this is dependant on all going well, which of course it may not. Tim has arrived to see Jesse so I will stop now and possibly update later.
Love
Claudia
PS Thank you for the jokes Charlotte, Gaby, Lily and anyone I have forgotten, Jesse is in much better spirits and so he was roaring at them last night!

Day +41

It was a peculiar day today. I was woken at 7am precisely by Jesse saying "Wake up Mum! Can I have a bowl of rice krispies?" Later his nurse, Sam, told me he had been sitting up watching the clock since 5am waiting for that moment. As a result he was tired and a bit grumpy by mid morning. He was a bit sick after his second bowl of cereal but asking for more food within 5 minutes. He asked to get into bed for his lesson, then he perked up and ate some more, but his lunch came straight back too. I insisted on a nap early afternoon and afterwards he was a lot better.

We went out for a walk in the wheelchair and then sat outside Starbucks. It is really hard to know where to go around here...we have to avoid building works because of the risk of fungal lung infections (aspergillus lives in brickwork) which makes almost everywhere out of bounds and we aren't allowed in the park round the corner (where we went last month). After I got back from that first trip the senior nurse told us we shouldn't go there because of the animals! So we never went there again.

This evening he was sick a third time, so we both felt very disheartened. When I was putting him to bed I went into the bathroom and found his sickness bands on the shelf. I realised he had spent the whole day without them. In case you don't know what they are...the bands are quite thick and very elasticated with a plastic bump which protrudes. They are worn worn on the wrist with the bump facing inwards so pressure is applied to the acupressure point which controls nausea and vomiting. Jess has worn them every day for the past few weeks and his vomiting decreased and then stopped, so maybe that had something to do with it. We'll start all over again tomorrow and see how we go.

Must go as I am falling asleep. I had a visit from our number one commentator tonight! It was lovely to see Gaby looking tanned and gorgeous after her month long trip to Tobago. I saw the holiday snaps and it looks idyllic, I was very jealous. We had a really good evening catching up.

I am a little worried tonight as Jesse has had a temperature of 37.9 all eveing although it has just gone down to 37.4. I'll keep you posted,
All my love,
A very tired Claudia
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Day +40

Photos of the Day

We finished it! Here is the 1000 piece jigsaw puzzle we've been working on (detail top, whole puzzle bottom), it took us 5 days! Actually we only did 995 pieces as 5 were missing. Jesse is brilliant at finding the right pieces...a new found skill! We hope you are impressed...

Hello bloggers...
This'll be a shorty. Jesse is still on form. He has been eating lots and holding it down. He had 6 bowls of rice kripsies with rice milk (only one little box in total but loads for him), plus half a rice cake, mashed potato, rice noodles and a jam tart made with rice and corn flour...but his diarrhea is still bad (over 1kg yesterday) and he now has adenovirus in his urine. So it's not all rosy, I have no idea when we can get out of here. We have both had enough, and want to go home desperately. But until Jesse is eating properly and the diarrhea is better they won't let us out. We got out in the afternoon, I wheeled Jesse up the Gray's Inn Road to Argos to get a catalogue (I think we need a new puzzle to do, and they have run out here), and then back to Starbucks to sit in the sunshine and watch the world go by.

Tim visited yesterday much to Jesse's delight, they are continuing their plans (food based) for the summer hols (as Jesse calls them) at Greatham. In the evening Hilary came over and as Jesse was sleeping soundly, we managed to get out. We went to a local restaurant and had tapas, it was refreshing to get out and lovely to see Hilary. It was my first escape in a couple of weeks and it felt good!

Thank you for your jokes and comments, Jesse is really enjoying them, and it is good to know that you are out there! Take care, more soon,
love
C
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Day +38 and +39

Photos of the Day






I'm not quite sure why but yesterday I was so shattered that at 11.50pm I thought, hey, maybe I should go to bed at midnight for the first time in 7 weeks...so I did. And that's why there was no blog!

Sunday was a busy day. Derek, Stanley, Bernie and Chloe visited. Jesse was determined to visit the river so at 2pm, when they took him off his lines, he got in his wheelchair and we jumped in a taxi to the South Bank. The others followed in the car. It was such a beautiful, sunny day, it was packed and we had to work hard to find places where there weren't too many people. Jesse was rather grumpy a lot of the time, I think he was totally overwhelmed, but as you can see he really enjoyed it. We spent the evening working on our jigsaw (Derek and he got really stuck in) and by 8.30 Jesse was shattered and ready for bed. His eating went OK, he had two lots of mash but was sick after the second, his poo output is decreasing steadily...It was lovely to see Bernie (who hadn't forgotten me), Stan and Derek, and Chloe of course, who is our total star!

Jesse had me up at 7am as usual today and by 7.30 we were on our first walk of the day. We had ward round today and the doctors are much happier with him. They haven't found any evidence of GVHD in his bowel, so the only answer is to allow his immune system to strengthen, which will fight the adenovirus. We had a meeting with the dietitian this morning, Jesse and I had got 11 questions ready for her...things like "when can Jesse eat watermelon? dough balls? turkish delight? pringles? wotsits? quails eggs? tomato ketchup? can he have a diet plan? what can he eat today? when can he have a take away? when can he eat in a restaurant (outside)?etc" Luckily lots of the replies were "Yes, or soon". We were very satisfied with the answers and she came up with some really useful ideas and suggestions. So today Jesse skipped mash for lunch and had a few rice krispies with rice milk...he was in heaven.

This afternoon we went out again briefly to the Brunswick centre, then to Bloomsbury Square and finally we sat in the sun outside Starbucks on the corner of Great Ormond St and watched the world go by. We came back and worked on the 1000 piece puzzle (I think we'll do it tomorrow), and Jesse had rice noodles for tea. He loved them and the crisps he had been allowed too (only 3), but a bit later he was a bit sick. His stomach is so sensitive after weeks of not eating that we will have to be very careful.

Hello to all of you...
lots of love
Claudia
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Day +37

This’ll be a shorty… I was all set to write a very positive entry but late this evening Jesse has gone downhill, maybe it is just a blip, but he has been sick twice and has just done 660ml of poo. Up until now he was at 16ml from 7am!

Jesse was full of beans this morning, awake at six, although I persuaded him to let me sleep till 7am. We did more puzzles, two walks plus baths etc and in the afternoon Tim visited. He and Jesse drew up four days of seven courses of his favourite foods. Since they halved his steroids the food cravings have lessened but haven’t totally gone away. The nurses have engineered it so he has 4 hours off his lines as of today, so were able to go out to the Brunswick centre today (there and back by wheelchair but walking in between)...sorry falling asleep...will continue tomorrow, keep in touch, love
c
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UPDATE ON SUNDAY 11 MARCH (11am)
Don't panic, he seems OK. He had a good night, more poo this morning but not so much. Awake bright and early and currently having the longest bath ever (so far 45 mins...usually 29 seconds!)
We are planning a trip to the river, will update later,
C

Day +36

Sorry yesterdays blog was so rubbish. I had had a long day and was exhausted physically and emotionally. Yesterday Jesse was full of beans: he had his one hour lesson, we had six trips to the lifts or shop and did three 100 piece jigsaw puzzles, and he still wasn't tired when it came to bedtime! He stuck to virtually total gut rest (he had 90ml water only), although he found it torture. In the evening Tim came and we had a lovely supper and long chat. We were preparing for a diagnosis of steroid resistant GVHD of the lower gut and trying to assess the pros and cons of the antibody treatment they were suggesting. Neither of us felt too positive.

This morning Jesse woke at 6.30, adamant that it was 7.30. He kept telling me to wake up, I had to when he insisted he needed a wee. I managed to stretch a lie in till 7.30, but from then he was on the go till 9pm this evening. Today he had a lesson, we had seven trips to the lift or shop, played three games of junior scrabble (2:1 to Jesse), had a lovely long visit from Venetia and John, food searched on the computer, watched telly and got well stuck into a 1000 piece jigsaw! He is like a human dynamo!

I was very sceptical that the biopsy results would be in any way helpful, but when it came to ward round the consultant announced that the results had been very interesting and helpful. Firsts results reveal that Jesse has adenovirus present in his gut. It is likely that this has been causing his recent diarrhea. The doctors were shocked, so was I. Of course the steroids have damped down his immune response so they have made it worse. He probably did have GVHD of the gut but it looks like it was treated by the steroids and then replaced by the adenovirus (a common virus with over 50 varieties that cause colds and gastro bugs and lives in 95% of us all the time). It can be very serious, just search on "adenovirus bmt" though a worldwide google search and you'll get an idea. But for us it was good news. GVHD that doesn't respond to steroid treatment is very bad news (try searching for "steroid refractory GVHD" ). So the doctors have halved Jesse's steroid dose and have started him on a weekly anti adenovirus treatment. Already the diarrhea seems better but this evening some GVHD was evident on his ears and feet. My worst fear is that the GVHD comes back and we also have to deal with the adenovirus. Apparently eradicating adenovirus can take weeks and months and the best treatment is to allow Jesse's immune system to grow strong so it can deal with it. The good news is that if it improves so that he can take food and medicines orally then it can be treated out of hospital. Jesse has continued on our own program of nil by mouth but at least it will be a bit easier if he isn't driven by steroid induced hunger...Wish us luck, the longer we are here the more I realise how little they know and how much is guesswork and pot luck, not terribly confidence inspiring!

This evening Carolyn came for supper, it was so good to catch up after so long. Jesse slept all evening, a first for several days. I hope it means he is finally relaxing, not that he is brewing something. Love to you all and more tomorrow...
Claudia

day +35

Sorry you lot...I'm too tired to blog, will update asap
love
C
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Day +34

SORRY...CHILD IN A MILLION IS AT 8PM ON FIVE TONIGHT (not 9pm as I wrote yesterday). It is 2pm on Wednesday and Jesse hasn't been for his biopsy yet. He was supposed to be second on the morning list. They now say mid afternoon. I'll update later,
C

Later on...the biopsy went fine, he was asleep by 4.45 and awake 45 mins later. He walked down to theatre all by himself. Had not a moments fear, handed the anaesthetist his line and was asleep in seconds. Within an hour of returning to our room we were off on a walk again. Food is still the main topic of conversation, below you will see his top five foods he would love to eat. I am hoping to persuade him to go nil my mouth for a few days, I want to give him every chance of getting better. Maggie visited tonight. When Jesse heard she was in the parents room he was off his bed like a shot. We decided to surprise her by turning up together unannounced, we gave her quite a shock! Jesse settled well and so I was able to watch the end of the GOSH documentary and then have a good chat! It was a lovely evening. Again I am exhausted so I'll sign off,
lol
C
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Jesse's top food list
At number one...DOUGH BALLS!













AT NUMBER TWO...peach buns

















At number three...WATERMELON








AT NUMBER FOUR...lychees








At number five...HOLEY CHEESE!

AND FINALLY AT NUMBER SIX...pista rolls!

Day +33

Thank you for all your messages...I knew you were there really...I was just feeling a little lonely. I am aware we aren't being much fun at the moment. Jesse isn't really himself. His only topic of conversation is food. The foods on the wish list today are pista rolls (mini backlava) and lychees, as well as the ever present dough balls, pitta bread, peach buns and watermelon. He was also waxing lyrical about the delicious smell of dough...

All this said, we got through the day well. Jesse woke me at 6.30am (he went to sleep finally at 2am) saying "Wake up Mum, its 7.30!" He is very keen to learn the time at the moment and is doing pretty well, but still not perfect as you can see. I managed to renegotiate wake up time to 7am, half an hour later we were on our first walk to the lifts of the day! We manged five trips in all, the final one in the lift to the shop this evening.

Jesse is having his biopsy tomorrow. He will have a general. The plan is to do a gastroscopy and an colonoscopy. First they put a camera through his mouth and look and take 3 small biopsies into his stomach and a bit beyond. Then they do the same through the other end, this time going all around the bowel, taking 7 more bits for biopsy. Apparently the biopsies are painless and heal quickly, he may have a sore throat and feel bloated as they will fill him with air in order to make more space. Jesse isn't the slightest bit worried, except for the possibility he will have to have a canula. They have given him two massive doses of laxatives as bowel prep, nevertheless he just below 1 litre of poo so far, this makes me feel the underlying problem is settling. Please keep fingers crossed...

I am going to finish now as it has been a long day. Jesse has hardly slept and has been rather demanding. I just wanted you to know that on Wednesday 7 March at 9pm on Channel Five there will be "A child in a million". It is about a bone marrow transplant at GOSH, bizarrely I found out today that is filmed in our room, cubicle 1, on Fox Ward. It is about a boy about the same age as Jess, sadly the BMT doesn't work. His lungs are so bad they have to give him very light chemo and the bone marrow doesn't take. I don't know all the details. Rachel, our nurse today, said I shouldn't watch it (even though she told me about it) but I think I'll have to. I have no idea what the full circumstances are although she told me that he is still alive...

Sleep beckons, good night y'all,
Claudia
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Day +32

Hello there,
We've been here so long I'm not sure if there is anyone out there still???

Jesse has been much better today. He pooed 1.3litres (that's 1.3kg, over one 20th of his total body weight) yesterday, but today it is midnight and I think he is up to 0.5 of a litre (it is measured from 7am to 7am so we only have 7 hours to go). That is significantly better. I don't think the jelly on Saturday agreed with him. Today he had a teaspoon of mash, he loved it. We have yet another consultant today (the third in 6 weeks). He was very pleasant and knowledgeable. Nick Goulden has spent a long time at the Bristol BMT centre, the only other place in the country on the scale of GOSH. He is very concerned about Jesse's GVHD. He should have responded to the steroids by now, if he doesn't then he has "steroid refractory GVHD", this means it is resistant to treatment by steroids. What they want is for it to respond and then to wean him off them. The longer he is on this higher dose the worse it is for him. At the moment what they are doing is switching off his immune system as it tries to grow, sooner or later he will get an infection, which will be very serious.

So today they told me they are back on to the emergency biopsy route. They want to be certain it is GVHD and to know exactly how bad it is so they can plan treatment accordingly. They will also look with a camera so they can see what is going on. He is booked in for Wednesday morning, and in advance of it they will give him Senna and Picolax to completely clear him out. It seems unnecessary as he is as empty as possible already but apparently that's the protocol. So it will be poo city here tomorrow. Poor lamb has been desperate to eat all day, dough balls, pitta bread, watermelon and peach buns are still top of the list! But he is happyish with the mash. I have taken him off squash and put him on water, it is better as he has hardly had any because it doesn't taste as nice. But of course we will be on nil by mouth tomorrow. I am really hoping that by the time we get the biopsy results (probably next Monday/Tuesday) he will have significantly improved so we don't have to go the Mabs antibody route. I will expand on that further when it is more likely...

Bernie is a lot better from his cold, but his nose is runny and he is coughing a bit. So I won't see him until the weekend at the earliest. He had a lovely time at the childminders today, he even waved goodbye to Derek so that is a breakthrough and a relief. Jesse was in fantastic spirits today. He had me awake before 7am, insisting that I open the curtains and wake up. At 8am he was so restless that we went on a walk almost all the way to the lifts in the main corridor. He loved saying hello to the nurses and all the attention. We had another walk to the lifts before his lesson (which he enjoyed), a couple of 10 minute naps and then a third walk to the lifts this afternoon! It may not sound like a lot but bear in mind he is very thin, his muscles are wasting because of the steroids and he has a medicine stand with 5 pumps attached, at least three bags of fluids and a couple of syringes that are permanently connected to both his Hickman lines. which has to go wherever he goes. So it is in fact a major achievement! Jesse is finding it very hard to relax and to sleep so I am going heavy with the lavender oil and doing my best to tire him out. We had a final walk this evening at about 10pm. We made it to the lifts and then in a moment of recklessness decided to get in one and go downstairs to look at the shop (that was closed). We had great fun! OK, that's all folks! I'm off to bed, wish us luck for tomorrow and Wednesday, and by the way, thank you all for the cards you sent, we have them stuck all around the room...
Lots of love,
Claudia
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Day +30 and +31

Sorry to be so lazy yesterday. Saturday was a busy day, Jesse enjoyed eating half a jelly in the morning, but it didn't agree with him too well. He had some bellyache in the day and lots of diarrhea. Tim came over in the afternoon, it was lovely to see him. Jesse was being quite grumpy generally and very soppy about me. He hadn't slept very well the night before and was up early. He has been very restless all weekend, tetchy, fidgety and unable to settle. I think he feels a lot better but not well enough to feel well or to have enough energy to do anything in particular.

So I had the afternoon off. I walked to Covent Garden. I didn't get anything except a couple of cheeses from Neals Yard Dairy, but it was lovely to feel all the life around me, to stretch my legs and get some fresh air. I had to hurry back as Jesse was bursting and refusing to do a wee for Tim or any of the nurses. He is a stubborn so and so...I had to walk quickly. Tim told me later Jesse had remembered and cited the fact that as I had left I had said that I could get in a taxi if I was needed back quickly!

In the evening Jesse did sleep fitfully and Andrea (Jami's mum not Andrea from the shop) came by so she and Tim and I had a little party in Robin Ward's playroom We had delicious cheese, bread and nibbles washed down with some wine. It was a very jolly affair indeed! Oops you can tell I've been reading rather a lot of the Famous Five! So that was yesterday...

Today I was hoping to make it back to Brighton for a couple of days but Bernie has a cold and a cough and so we decided it just wasn't worth the risk. We have been here for 6 weeks and I haven't been home once so I was looking forward to it, but Jesse is so vulnerable we have to do everything to keep him away from any illness and to make sure we keep ourselves well too. So I had a quiet day and did the washing. Jesse has had two teaspoons of mash today, but his diarrhea has been much worse. I think they will put him back onto nil by mouth tomorrow, I have warned him and he's not very happy about it. He has been a little more settled this afternoon. Must go as I am falling asleep,
love
Claudia
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Day +30

Too tired again, will update tomorrow...all ok.
love
c

Day +29

It has been a strange day, a real roller coaster. We started off very low, Jesse was awake every hour through the night. He was so hungry he couldn't sleep, he kept talking about dough balls and watermelon. I found it so distressing, it was heartbreaking to hear his softly spoken pleas. We had our lovely nurse Sally on last night. She could see what a state we were both in. So she asked a more experienced nurse to come and talk to me about the antibody therapy. There was no record of this as a possibility in Jesse's notes so she was surprised but reassuring about it. I mentioned to Sally how intimidating the ward rounds were, she knew exactly what I meant! We talked to Jesse and suggested that he should talk to Paul Veys in the morning. Jesse agreed it was scary when they all come in so I asked him if he would prefer it if only Paul came. Jesse was enthusiastic about this and agreed to tell him how hard it was to be so hungry and not allowed to eat. So we concocted a plan. Sally wrote this down in the notes and emphasised how distressed Jesse was. She handed on to the day staff that we wanted a one to one meeting.

Later on in the morning Paul came by on his own, and was unable to say no to Jesse's request for food, it was so heartfelt! When Jesse said "Thanks" to him he melted and I fought back tears. If the diarrhea gets worse it will have to stop, and Jesse can only have small amounts of very specific foods (no wheat, dairy or soya). Paul was a lot more positive about Jesse and the GVHD too. They have booked a biopsy of his gut for 16 March, as the theatre slots are hard to come by. This gives us two weeks to get Jesse a lot better. If he is clearly on the mend they will cancel it. Then they will use the antibody therapy only if the GVHD isn't responding to the steroids. I have a promise of full discussion of the pros and cons in advance including a paper one of the consultants Dr Rau has presented all over the world about this. So I feel a lot more in control and so does Jesse.

All he has eaten is a few bites of Energen bread toasted and a teaspoon of mashed potato, but he enjoyed every tiny mouthful and he has been much happier. He is restless this evening and is finding it hard to settle. He hardly slept today so maybe he is overtired or his gut is feeling a bit strange...

A couple of messages...Leo, Jesse isn't impressed with Skippy's antics one little bit. He agrees that Kipper would have thought of a much better hiding place, and no way will Kipper be joining the Penaut Butter Liberators, he has better things to do! Gaby, welcome home! Yes, we do love mulberries a lot...maybe we could have a tree in our new house? Looking forward to seeing you next week.
Love to you all,
Claudia
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Day +28 (1 March 2007)

Hello again,
Today has been much less busy than yesterday. We are facing a very difficult problem, Jesse is desperate to eat but the doctors won't allow him. They are very concerned about his diarrhea, a few days ago he managed to produce 1.4 litres, an enormous quantity when you consider he only weighs 16+kg and that would weigh 1.4kg! Then take into account that he hasn't had anything in his gut for a couple of weeks and you can begin to understand that this is his bowels secretions, not anything it is trying to digest. It has been getting better, it was 1.2 litres two days ago, 1 litre yesterday and a lot less today (I don't have a figure yet as it goes from 7am to 7am). But they doubled his dose of steroids nearly a week ago and they feel it should be responding more quickly.

So they are thinking about doing a biopsy of his bowel next week, this will mean a general anaesthetic and a laperoscopy (they put a camera down) as well as taking samples from different areas. If this confirms their diagnosis of GVHD and it looks severe they are talking about antibody treatment. It is a new therapy, only used since 2003. Everything I read online is probably out of date, but a lot of the poor bastards they treated don't make it, eventually succumbing to some infection or organ failure or other. I will find out more at the ward round tomorrow, I think I will ask to have a session with Paul Veys on a one to one basis. They all swoosh into the room on a ward round, five or six doctors fill the room and somehow all intelligent thought leaves me. I'm sure they don't mean it but it is very intimidating. I know they know what they are doing, they are so clever and very experienced, but it is very frightening and I just want Jesse to get better.

Of course Jesse doesn't understand this, all he know is that he is feeling loads better, he hasn't been sick for four days. He is stronger and starving! The first thing he thought about this morning was dough balls (from pizza express). He has a sniffer dog's nose and can smell the slightest whiff of food out in the corridor, so it is torture for him. We begged the really young SHO today for an inch of pitta bread, two hours later she returned with bad news. Nothing to eat until the diarrhea is less than 500ml a day. It is 11.30pm and I have just found out we are up to 600ml already with over 7 hours to go, so there'll be nothing for him tomorrow. All I can do is make a joke of it and face it head on, so today we spent many hours making an A-Z of food he would love to eat. He typed it all himself too, working out how to spell every word (except x and z by which time he was exhausted) It is an amazing achievement as anyone who has every tried to do any kind of reading and writing with him will testify to...here it is:
a=apples
b=buns
c=crumpets
d=danish pastry and dough balls
e=easter eggs
f=food
g=grapes
h=hula hoops
i=iced buns
j=jelly
k=kit kat
l=loganberry and lychees
m=mulberry and mango
n=nuts
o=olives
p=peach buns and pitta bread and pista rolls
q=quavers and quails eggs
r=raspberries
s=spaghetti and salt sandwiches and seaweed
t=thyme
u=unleavened bread
v=vol-au-vent
w=watermelon and wotsits
x=the ‘x’s from noughts and crosses crisps
y=yakult
z=‘z’ shaped toast

This evening I had a chance to show Jesse the blog, he enjoyed all your comments enormously. He laughed at the thought of Cory being Peter Perfect and would love to see a photo of Niamh. He couldn't remember the fox, but I could. He loved Joolz's Mexican fireman joke (I didn't think he'd get it but he roared), and enjoyed remembering his bucket on a rope, thank you Katie. All these little things do help. They help him keep in touch with who he is and that is so important! Thank you all and take care,
lol
C
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Day +27 (part 2)

Hi Guys,
I wasn't in the mood to do the blog last night so I'll do a catch up now and promise to do today later. Day +27 was busy, Jesse is now having his lesson in the morning as he so tired by lunchtime that he sleeps for hours (so he missed Monday and Tuesday's lessons). So it is a rush in the morning to do both our baths plus the doctors visit in time for 11am. Sadly Jesse has been banned from eating anything at all, I'll expand more in the next post. Very hard if you are desperate for something to eat!

While he was having his lesson I caught up on washing and as he had fallen asleep I manged to finish in time to meet up with Derek, Bernie and Chloe who had travelled from Brighton and Oxford respectively. We had a lovely afternoon, Bernie was pleased to see me. Chloe took him off for a walk so Derek and I could have some time with Jesse together, then Bernie visited Jesse and the playroom. Jesse went to sleep early, so I saw Derek and Bernie off.

At 8pm I met up with Sue at Carluccio's, just round the corner at the Brunswick centre. It was very busy, just as our starter arrived the phone rang. Our lovely nurse Sally was very apologetic, Jesse was awake and he wanted me! She suggested sitting with him so we finished our starter and then asked to have our next course as a take away. We came back to the hospital and I settled Jesse easily, so we were able to finish our meal, plates balanced on our knees, in the interview room. It was so lovely to see Sue, she has been so supportive! And we managed to salvage a pleasant evening.

Jesse was still awake when I got back and he needed sorting out, so by the time I had finished I was too tired to write the blog. Thanks as ever for all your comments. The days go so fast here and Jesse is sleeping so much that I haven't read any of your recent comments to him. I'll have a go soon and let you know what he says...how long did Cory stay perfect?...and we'd love a picture of Niamh if possible, sound wonderful...more very soon,
love
C
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Day +27 (part 1)

Hello everybody,
I am really tired so I will fill in tomorrow, all is well,
love
C
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