Day +26

Photo of the Day
Jesse had his first solid food (two thirds of a coco pops straw) for 15 days this morning. He kept it down and enjoyed it thoroughly. Sadly the consultant this afternoon has asked for no food or drink if possible till the end of the week at least. He was concerned that Jesse managed to produce a staggering 1.4 litres of diarrhea yesterday (from an empty stomach). He feels the steroids have settled the upper gut but that the lower gut needs a total rest.

Jesse had another good day. Three sessions in the play room on the game cube (I'm getting better at MarioKart, I can now beat Jesse sometimes) wore him out. He had a four hour sleep this afternoon, woke at 6pm and was in bed for the night at 8.30. He has been so happy and full of good spirit, it has been wonderful to be round him. It does feel like we have turned a corner. I know there are lots of things that can go wrong, but at the moment he is progressing well. He was very happy for me to take his photo and very proud to be able to eat. He keeps doing things a little too fast, forgetting how weak he is. This evening he got off his bed so fast he fell over. I keep saying him "keep your hair on...oops, I forgot you can't...because you haven't got any hair!" He roars with laughter every time!

It was a good thing Jesse slept again this evening. Hilary came over and we went to a local Chinese, we had a lovely evening. It was so refreshing to get out. In fact I had a very sociable day altogether, Maggie was in the area this morning so she popped by for a cuppa and a chat. So I feel pretty human today, thank you both! Gaby, sorry about the spam. I have asked Derek to check it out but he can't find a problem. Thursday 8 March would be good for me, give me a ring on 020 7762 6249 and we can firm it up! I'd love to meet up. Must go as I am starting to fall asleep. Thank you for every body's comments, Jesse hasn't been up to looking at them recently but I'll have a catch up session soon and I'm sure he'll be delighted,
lol
C
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Day +25

We had a great day today! Jesse is talking again, and laughing and being cheeky and rude! And best of all he is getting excited about things, like making elderflower cordial this June and eating crumpets and watching Raven! He even had a tiny bit of milk and held it down.

Jesse hasn't been sick for nearly 24 hours and his tummy cramps seems lighter. He hasn't had any morphine or codeine because he doesn't want it. He still has the GVHD rash and his left ear has been very red and swollen (more GVHD), but it doesn't seem to bother him. He does still have quite bad diarrhea although it is less frequent.

We made it to to the playroom this evening and had a go on the game cube and we started a new Famous Five story. He only slept a few hours this afternoon (not all day) and he is still putting on weight. Lets hope it continues to improve. It is ward round tomorrow so we'll see what the great man says...

I am going to bed as I am exhausted, Jesse has worn me out. Sending lots of love to you all, keep in touch,
lots of love,
Claudia
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Day +24

Hello,
This will be a shorty. I am really tired and there isn't much to say. Jesse spent most of the day asleep. He had a transfusion last night (very normal as they are constantly taking loads of blood to check all kinds of levels), so he is much pinker. He has been really quite uncomfortable due to tummy pains, but he is still refusing to use his morphine push. He has been sick a few times but is drinking and still has very bad diarrhoea. On a more positive note, he has put on a little weight. Two days ago he was down to 16.3kg, his lowest ever. Yesterday he was 16.4kg and today he had gone up t0 16.6kg! It is only a little bit but at least it is in the right direction...

Jesse was awake a couple of times in the night for quite long periods (around midnight and five this morning) and during one of these sessions I explained to him how upsetting his brothers had found it that he wasn't talking. I pointed out that it would be no good going home with perfectly good marrow only to find he had forgotten how to talk. So he did talk to me. I was able to ask him lots of questions, one of which was why he wasn't using the morphine push. He explained that he didn't want to because he knew the pain was going to end soon. He was adamant that he didn't need it.

Today he has stopped talking again. He did a little this morning but by the afternoon I could get nothing but hand signals, shoulder shrugs, nods and shakes of the head. He is still quite communicative, for example this evening while he was moaning with pain I asked if he had belly ache? He nodded. Did he want the morphine push? He shook his head. Did he think the pain would go soon? He nodded. Was there anything I could do? He shook his head. Was he finding me annoying? He nodded. Did he want me to get off the bed? He nodded. Did he know I loved him? He nodded.

Derek and Bernie went home this evening. It is a strange feeling knowing they are there and we are here! Bernie was very excited to be home. He rediscovered all his favourite cupboards, and the telly and gave a deep "aaah" of recognition when he saw the big push along sheepdog that Santa brought. More tomorrow,

Love
C
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Day +23

Photo of the Day
Chloe came and helped out with Bernie for the third time this week, it meant Derek was able to pack up ready for his return to Brighton tomorrow. And that Albie and Stan were able to have a good long time visiting Jesse. As you can see they are very relaxed together!

The ward reopened this afternoon. Albie and Stan visited today. It was the first time we had seen them for almost five weeks. It was so lovely. They were so calm, sensitive and caring as well as relaxed and very much themselves. I think they were shocked at the state of Jesse. I suppose I have watched it happen day be day so it has been more gradual. He is so thin, his face has changed drastically. And I hadn't really noticed how little he talks now. He uses sign language a lot, I suppose because it is less effort and I usually understand. I know Albie found that hard, when he left Jesse talked so much sometimes you had to get out of the room in order to escape his endless chatter. Now you are lucky to get a thumbs up or down, a shrug of the shoulder or a nod of the head. I hope that when he feels better he will stop this. We all went out to supper while Jesse slept this evening at a strange Italian restaurant which was in a time warp. It was just like walking back to the 70's. The food was good and it bizarrely felt like we were on holiday!

Lily got back to Glasgow today safely and on time. She was booked on a train going a different route. It must have been a harrowing experience for those poor people. We will miss her a lot but she'll be back in three to four weeks, probably before Jesse is.

Jesse had an OK day. He wasn't sick (until quite a lot just now). They have given him a morphine push (so he can regulate his pain) but so for he has refused to use it. He still has bad diarrhea and some belly cramps. I am going to stop now as I am exhausted. I may continue later,

love

C

Derek was missing from this photo, but I guess someone had to take the photo. It was a little like Picadilly Circus in Jesse's room this evening.

Day +22 & 100% engraftment day!

We had great news today, Jesse's bone marrow has engrafted 100%! This means that there is none of his old marrow left, there is only the new marrow. This should mean that the transplant has been a success, so long as the old marrow doesn't come back (unlikely now). Of course he still has to battle with GVHD and not succumb to any infections, but basically we have got what we came here to do.

Today has been so much better on so many levels. We had the great engraftment news. Bernie, Derek and my blood counts came back as super healthy (we still are waiting for the blood films but so far so good). And to top it all Jesse has been on significantly improved form (until just now...) He was happier when he woke, had very bad belly ache followed bye a short sleep, laughed and smiled at Basil Brush at lunchtime (something I haven't seen for a long time), and then at 2.30 this afternoon got off the bed. I, almost as a reflex, pulled a bedpan out. He said scornfully "No, not that. I want to get out of here!" I suggested the play room but he wasn't impressed, when I explained it was that or nothing (he was hooked up to 3 IV lines at the time) he shrugged his shoulders and went meekly. We played on the game cube for nearly 2 hours. To see him yesterday you wouldn't have thought that possible for a few weeks at least. He came back for a bath and by 5.30m he was tucked up safely in bed and fast asleep.

The consultant, Paul Veys, is going to double Jesse's steroids (although he was only on a half dose before) and is fairly confident that they will be able to get the GVHD under control. I really hope he can...

Derek and I managed a night out thanks to Maggie's kind offer to babysit. We had a very tasty, if expensive, Thai meal in Lambs Conduit Street. We got back to the house early (10.30pm) but as I was taking my coat off the phone rang. Fox Ward asking me to come back, Jesse had been sick but was telling all the nurses to leave the room with hand signals! I sorted him out but then he had very, very bad belly ache, it was very hard to watch, he was in a great deal of pain. He wasn't due any more IV anti spasmodic medicine for a couple of hours and it was the codeine that he'd thrown up, he didn't keep a second dose down either. So there wasn't much that could be done to help him.

It was a shame this happened, after been such a relatively good day. This is how Chloe put it in a email today (in response to the engraftment news)
"Derek has just told me the fantastic news And that Jesse is in the playroom today - almost unbelievable. Yesterday, while I was with him, he had his head in his hands! I could have wept for him. It seems so unfair but this good news makes it worthwhile."

Albie and Stan are coming to visit tomorrow. I can't wait, I haven't seen them for almost five weeks. And sadly Lily is going back to Glasgow. I will miss her, even though I only saw her once. She has been an enormous rock. I'm glad she is going back to her studies and I hope she continues to enjoy them. With some luck we will be back from here by the time she is home for Easter...

Must go, it is late and I am tired. Much love to you all,
Claudia
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Day +21

Photo of the Day
Lily took this picture of Ragor, apparently letting off a very big one! When Lily visited Ragor was being quite windy, so I wasn't surprised! Jesse was unimpressed, he took control of the computer, blew the photo up and then announced it is in fact a very big firework going off somewhere quite far behind him. The jury is out on this one, what do you think?

Sorry yesterday's post was so brief, I was so tired I kept falling asleep at the computer. The only way to write anything was to be as concise as possible. It was a long day yesterday, I went round to see Derek in the evening but got called back by the hospital as Jesse had been sick and wanted me. It took me till 2am to get him settled, what with sheet changing etc.

Jesse still is pretty poorly. He has now lost 2.9kg. I hope the TPN will stop this dramatic weight loss, it is only his second day so we'll see. The good thing the diarrhea and vomiting is definitely better. But he is still suffering from very bad tummy cramps a lot of the time. This morning he was in a very bad state, crying non stop for ages because of the pain. Eventually he slept and was a bit better in the afternoon.

Chloe visited again, and as ever it made a very big difference. I saw Bernie this afternoon which was so lovely, his cold is very slight. I heard him cough once and his nose wasn't running, so I hope it was OK to take the risk. We had a meeting with the genetics team, who may have come up with a diagnosis but it is very woolly.

They have said it may be WT syndrome, also known as WT limb blood syndrome, but it is so rare there are only three recorded cases I can find online. One in 1977, one in 1987 and one in 1997ish. I don’t think we have it unless it has spontaneously happened in me/Derek or Jesse as there is no family history (but this is a possibility). It is supposed to be a dominant gene which means there is a 50:50 chance of passing it on, in which case you would have been able to track back through our families (blood disorders, anaemia, hand malformations and leukemia) and other than Jesse there is no one, also there is no test so they’ll never really know.

They did my bloods yesterday, the counts are normal but the blood film isn't back yet. They are interested in me because I have asymmetry in my thumbs, although the Professor though it was so slight it probably didn't count. They did Derek and Bernie's bloods this afternoon (B wasn't very happy about it!). Bernie's hands are so fat and squishy that it is very difficult to say if they are normal. Also his fingers are very double jointed, but they felt that maybe the left thumb was a possibly little abnormal and that his right was fine. They want to see him in two years time when it will be easier to tell. They basically said that we will have to wait and see, if everything is fine then good and if it becomes clear that its not then we'll have to deal with it. It is frustrating but there is nothing else we can do. We'll get Bernie's blood results soon, fingers crossed.

It is not even 9pm and I have done the blog! Jesse is fast asleep and I am going to get some food and if Jesse stays sleeping I'll go over and see Derek. Next week I will be here in my own so if anyone fancies a meal/drink out with me very locally to GOSH it would be lovely to meet up. It makes a real difference to have some kind of adult conversation at some point in the day. Thank you for all your encouraging posts, phone calls and emails. It does help us all keep going...

love to you all,

C

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Day +20

Hi Folks,
This'll be short, am exhausted and its late. Difficult day but better than yesterday, less poo, less vomit. Jesse not puffy but very grumpy. Better in evening. Geneticist came in afternoon, possible diagnosis of WT syndrome, very rare and no test. Am sceptical as our family history doesn't tally, ie no previous cases. Could be me who is carrier so had blood film done. Geneticists coming tomorrow pm to do Derek's blood and look at Bernie. Bernie had cold, I didn't see him and Derek couldn't visit Jesse. Thank you all for everything!
Lots of love
Claudia
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Day +19

We had a difficult day today, Jesse is very unwell. He has been on IV fluids for 24 hours so hasn't been interested in a drink at all, but at least it means he hasn't been sick either. But he is low on Albumen so he went really puffy, especially round the eyes (the body can't deal with fluids properly if the Albumen is low). They gave him an IV infusion of that today too and he looks a little better tonight. Jesse has been very floppy and in and out of sleep most of the day. He still has bad diarrhea and horrid tummy cramps, which they give him codeine for. He has had a low grade temperature all day too. His face is red and so are his palms, and rashes come and go.

All these are symptoms of GVHD. The vomiting is a sign of upper gut GVHD, the diarrhea a sign of lower gut GVHD. The consultant Paul Veys came round today and he is pretty convinced that's what it is. The trouble is it is very difficult to tell without doing a biopsy of his gut, which is quite a drastic step. They can up the steroids, which they may do tomorrow, but this will lower his immunity and so if it is a virus of some kind it will put him at serious risk. Unfortunately the symptoms of an infection and GVHD are very similar but the treatment is totally different! It is very worrying because if the GVHD gets out of hand it can be very serious and even fatal. Also Jesse has acute GVHD, which means it has occurred in the first three months after transplant, you can also get chronic GVHD which is different and happens three months after transplant. If you have had acute GVHD then there is 50% chance of getting chronic GVHD too. And that can go on for years. I had a bad afternoon as I felt very gloomy about it all. They sort of know what they are doing but a lot of the time it feels like it is guess work. Karen, our lovely nurse says his poo doesn't look like GVHD poo. She probably know what she is talking about. I hope it is a mild case, that doesn't take hold and spread to the liver because that's when it gets really nasty...

Our near neighbours on the ward are going home tomorrow. They will be on Day +28. Their little girl Emily has just had her second BMT, the one in June didn't work. She is only 20 months old. Last time they went home on Day +28 too! This time the marrow has fully engrafted, I hope all goes well for them as they have been through a lot. I'm sure we won't be going home in 9 days time! Another baby went home today, he is 10 months old but he has been in for 4 months! There is no way of telling how things will go and what problems you will encounter. It is sometimes very hard to stay positive.

Chloe came today, she has been such a star! Bernie adores her and it is so nice to know that they are having a great time. She's coming on Thursday and Saturday this week as she is on "holiday"! I can't tell you how grateful we are to her. Derek will be going back to Brighton this weekend, it is almost unbelievable that 5 weeks are nearly up already. I'm going to stop now, as Jesse is peacefully asleep so I am going to pop over to see Derek for an hour or so...

Just a last quick message to the many of you (I know you're out there, I keep hearing by phone, text, email or hearsay) who check the blog regularly but never leave a comment...HELLO! And Coral, thank you for your text, I'll let you know if there is anything you can do, lovely to hear from you. If anyone wants to send a card or a letter to Jesse in a sealed envelope (no postcards and no things though please as there isn't any space and some stuff isn't allowed) then our address is:
Jesse Richards
Room 1
Fox Ward
Great Ormond St Hospital
Great Ormond St
London
WC1N 3JH
and the phone number in the room is 020 7762 6249, if I can't take the call I'll tell you and ring you back if I can.
Take care you lovely people,
C
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Day +18

Photo of the Day



Lily visited today. Jesse as usual was being camera shy.







Hello again!
Another day another post! Actually today turned out much better than it started! This morning at 7.30am Jesse was vomiting and for four hours it was one end or the other without much of a break. Then he slept and seemed better. He is still drinking lots of coke and water and this afternoon was on fairly good form. He only threw up once but is very tired and weak. He slept again this evening. The doctors have decided against TPN for today, they have put his stomach on total rest so he is on a drip and no milk. I don't know how he keeps going. Today I nearly cried when I put him in the bath, he looked like a concentration camp victim. He really is nothing but skin and bones.

...Jesse has just woken, it is 1.20am and he wants me to read the end of the Famous Five book we are reading. Since every wish is my command I can't refuse, so I will finish this post tomorrow, Cx

It is now 8am on 20 Feb, I will see if I can grab a few minutes to finish this before the hustle and bustle starts in earnest! We've had a peaceful night. We only manged two chapters of "Five Fall into Adventure, still two more to go! Jesse fell asleep. He is sleeping now (after waking for a drink)...in my bed! So I've no where to go. When this has happened before I have considered getting into his very big, comfortable bed but I think it would give the nurses quite a shock!

Jesse is wearing his sickness bands (after a lot of protest initially) and the room smells divine! Derek trekked all the way back to Boots and picked my lost purchases up for me. I did some aromatherapy research yesterday and so now I have got tissues with ginger, lavender and peppermint essential oils dotted round the room. Since I started all this yesterday the sickness has been better, but it is more likely that he hasn't had any milk for 24 hours. We'll have to wait and see what the doctors advise today.

So, back to yesterday (day 18). Lily visited, she was allowed by special dispensation of the powers that be as they have closed the ward again. Another member of staff has gone down with the bug, but they let her come because we had been told otherwise. It was SO lovely to see her! Jesse adored the two new pups she brought, Charlie and Bob, although he was too weak to do or say much. We stayed with Jesse for some of the afternoon and then did a Bernie swap with Derek. Lily witnessed Bernie's walking, which is now very confident (although it doesn't take much to topple him). He is such a show stopper when he walks along the hospital corridors! He goes at a rate of knots, refusing to take my hand. He is very independent. His favourite game is pressing the button for the lift. He would go up and down all day if I let him.

We went out for a bit of a meal and it was clear Bernie was delighted to see her. He gave her loads of hugs when we got back to the house. I am so grateful to Lily, if it wasn't for her, Derek and I wouldn't have been able to devote all our attention to Jesse. She has run the house beautifully and been a consistent presence at the shop. It has given me enormous peace of mind. She is going back to Glasgow on Saturday, she will have stayed for 5 weeks, much longer than I asked for at first. I know she has got to get back and get on with her degree. So Derek will go back to Brighton at the weekend. We've decided to play the rest of our time here by ear. I think I will do another week, maybe with Derek visiting on Wednesday and then in two weeks, if Jesse is not very ill, we'll start taking half a week each. Albie and Stan can visit next weekend as I haven't seen them for weeks and I miss them so much.

Jesse has been too unwell recently so I haven't shown him the latest limericks and jokes, thank you for the photos Sophie, I'll show them to him soon, they are very funny! Sorry to hear about Bella Anne-Marie, I hope she gets better soon and you can get some rest! Please keep anything you think may amuse him coming, laughter is a very good medicine! Thank you all for you support, we really appreciate it!
lol

Claudia

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Day +17

Hi Guys,
Thanks for all the limericks! I'll read the latest ones to Jesse in the morning. Very inventive, I'm impressed!

Today as been much as before, no eating, loads of vomiting, some drinking and lots of diarrhoea. Poor Jesse weighs only 17kg now, so he has lost 2.3kg, we weighed Bernie tonight and he is 12kg! At this rate it won't be long before he is heavier that Jesse. Tonight they have started Jesse on Albumen (IV protein) and tomorrow he will have TPN (a form of IV total nutrition). This is good but can make the stomach "lazy" and puts pressure on Jesse's liver.

I got a bee in my bonnet about Jesse's nausea so I did some investigating. I discovered that the acupressure pads are supposed to be brilliant. So Bernie and I trekked through Oxford St, almost to Bond Street and eventually found a giant Boots that sold the "Sea Bands" for children. And then I LEFT MY BAG WITH ALL MY BOOTS PURCHASES in the shop, but only realised when I got back...so frustrating! Luckily they still have the purchases so Derek will go and collect them tomorrow. After all this walking I am shattered, I'll try to write more tomorrow. Lily is coming to visit & by the way the ward is now open! Must go as I am falling asleep as I write
lol
c
zzz
I mean
xxx

Day +16

Hello everyone,
Thank you for your posts and emails. Sorry I sounded so negative yesterday. I had a long day of vomit and poo and not much else (of course it was worse for Jesse but not fun for me either). Jesse managed to throw up on his favourite dog Toby during the day, which meant he needed a wash and tumble dry. Because Jesse was so ill Derek and I decided not to do our usual afternoon swap in case Jesse had the d & v bug that has closed the ward. Now I'm sure he doesn't but it was unclear yesterday, in the evening Derek and Bernie went round to Tim and Eva's for supper.

So at 8pm when Jesse was going to sleep he asked when Toby would be back, I knew it could be a couple of days as Derek wasn't around so I promised Jesse that I would go and wash and dry him there and then. When I asked the nurses where the GOSH laundry was (very specifically mentioned in the BMT booklet) I was told it had been closed for two months but there was one over the road at the swanky patient hotel (the only way you can stay there is if you have a GOSH patient with you, ie a child waiting for a series of outpatient appointments). But on further investigation it turned out that was only available for residents at the hotel. All GOSH resident parents are supposed to use the public launderette which is a few streets away and only open 7am to 7pm. So I'm afraid I saw red, it was no use though, I got nowhere. I will pursue it on Monday, but in the end I managed to get into the Sick Children's Trust House where Derek and Bernie are staying (there are a really nice couple on Fox ward who are staying there too). So it all ended fairly well, I got back at 11.30pm with a sparkling Toby to find Jesse had just been sick (he had got most of it into a bowl). He was delighted to have Toby back. By the time I can cleaned Jesse up and changed all his sheets I was so shattered I wasn't in the mood for writing!

So having caught up on yesterday, now its today's turn. It all started badly, Jesse wasn't able to hold anything down. He spent a lot of time holding the sick bowl to his face with nothing happening. I think he felt worse this morning than he ever has. But this afternoon he perked right up. He started to drink coca cola and Tim came to visit with two beautiful medals as presents for Jesse, one American Legion of Merit and one French Cross of Valour. We think he has deserved both one hundred percent!

Poor Jesse has now lost 2 kilos, he is just skin and bones, but as Tim remarked, his eyes are bright! It was lovely to see Tim, and to have some space for myself. I didn't see Bernie and Derek didn't see Jesse as Bernie was sick in the car and we have to be so careful about cross infection. It was probably car sickness but we can't be too cautious! Jesse fell asleep quite early and then Tim and I had a rather good supper in the playroom. Afterwards we popped around to see Derek and share a couple of glasses of wine. So all in all it was a better day and it ended very nicely. I hope Jesse has an even better day tomorrow...keep the posts coming, we love to hear from you and we LOVE the limericks!
lol
c
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Day +15

This post will be really short. It has been a difficult day. Jesse has been sick many times, he can't hold anything down. He has slept most of the day and still isn't eating at all. I know it is to be expected but it is very wearing to watch your child suffering like he has today. Paul Veys (our new BMT consultant) feels we are doing really well, so that is positive..

I am so tired I am going to sleep, a fuller post tomorrow,
love
C
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Day +14

Photo of the Day
Jesse made it out today! We walked round to Coram's Fields (a little park round the corner from GOSH). He's got a funny expression because he is shouting at me to put the camera away! I found his cap in Baby Gap (the only kids shop locally), it was the only one that would fit him, as it was reduced to 99p I got it on the off chance. Luckily he loves it! He had just got very cold hence my scarf and coat. We were out for no more that 20 mins but it felt good...


Jesse's neutrophil count was 3.47 today! They halved his dose of GCSF today and tomorrow he has none. This will mean his counts will drop a bit, but should still be good. As you can see he made it out for a bit today. We had a window between 2 and 3pm with no IV and so we were off.

There hasn't been much to report other than Jesse has been quite sick today. I think it was brought on by the potassium supplement. They tried twice and each time he brought it back within a couple of minutes. It is supposed to be really horrible, apparently it fizzes as it goes in (through his PEG), so the third time they gave him a different kind which stayed down. He had one more episode in the evening but managed to drink quite a lot today (still nothing to eat except one fruit winder for breakfast).

He had a CT scan this morning which showed his lungs were clear. With all the activity today its not surprising that he slept twice in the day and was asleep early tonight.

Thank you for your limericks Dom, Annie and Andy. They are brilliant! I hope Dom continues to feel better! Thank you so much for having Stan (and Olly and Fred). They had a great time...you are very kind. We owe you one. And Cory, thank you for the Loch Ness Monster, its great! Love
C
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Day +13 (part two)

Photo of the Day

Jesse had his lesson in the playroom today! Here he is with his teacher.

Thank you for your comments, we are all really pleased with the counts. Jesse is wiped out though he has been asleep for a lot of the day. This afternoon he made it to the playroom for a couple of hours. He thrashed me at air hockey (9-5) and then played Nintendo with Derek and even had his lesson there. We even have a yellow sticker on our door this evening.

Our first visitor was Chloe, what wonderful timing that she was around the first day of yellow. Jesse was delighted to see her. It was especially lucky as this afternoon we were told Fox ward is "closed" as some of the nurses have come down with a vomiting bug. This means only the three named visitors for each patient are allowed until the outbreak has been over for 48 hours. So disappointing on the first day of freedom! But Jesse can still go out, we may take him round to the Sick Children's Trust House tomorrow, as Venetia and John were hoping to visit. It depends how he is in the morning.

Jesse had another x-ray of his chest today which was clear, but they are so thorough the doctors are insisting on a CT scan tomorrow. I'll let you know how we get on...Jesse was sick again last night and early this morning so he has been off his food again, but he is still drinking. Even though the counts are good Jesse is still vulnerable and he'll be on steroids for at least three more weeks in order to keep the GVHD under control.

Thank you for your comments and your Valentines messages! No, we hadn't guessed it was you Cory. I hope you all noticed the love sent from Jesse's littlest cousin in Los Angeles, in case you didn't...here is a beautiful, smiling Baby Fisher for you all to enjoy! Congratulations Melanie and Darius, we can't wait to meet him or her at the end of the summer!

love to you all

C & D

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Day +13 Happy Valentines and Neutrophils day!

NEUTROPHILS ARE 2.2!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I can't believe it; they have never been that high! So he is on yellow, they haven't changed the sticker on the door yet, but I'll make sure they do. Sadly he isn't able to enjoy it yet, he spiked a temperature of 38.9 this morning and although it has come down to 37.4 he is pooped. He has just fallen asleep on my bed with his faithful Ragor on his chest! They think it is just engraftment still, I hope so,
more later
C
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Day +12

This one will be brief...yes, I know I've said that before, but this time I really mean it! Jesse is doing pretty well, although he was grumpy and uncomfortable today. Yesterday I didn't mention his bad reaction to the anti fungal drug Ambizone. I'm not sure why, I think because it was so horrible while it lasted and then when it was over I wanted to forget it. One of the side effects is bone pain and Jesse got it very badly. He was writhing all over his bed in agony, it really reminded me of someone in labour. The nurse gave him codeine and it settled quickly but today he had a similar (although not nearly so bad) pain with the GCSF. I think it felt a little like bad growing pains, at lunch time he was so exhausted by it he fell asleep, but was woken by the mobile ultrasound unit come to check that he had no fungal lesions within his body (they didn't find anything thank goodness!) The doctors took him off the Ambizone for the moment as they are pretty sure Jesse doesn't have a fungal infection, although they are still insisting on another CT scan later in the week.

Our really exciting piece of news is that Jesse's neutrophil count is up to 0.67! Two counts of 0.5+ in a row on a weekday means we are onto yellow! I'm almost certain that will happen tomorrow, Chloe was coming to help out with Bernie tomorrow anyway so it looks like she'll be Jesse's first other visitor! He can't wait to get to the playroom!

Tim came and stayed with Jesse this evening and so I took off to see Derek...we went out for a meal and Bernie came too! He had a whale of a time! It was such a treat to get out...
Must go...

Have just realised I fell asleep before publishing this post. It is now nearly 7am, Jesse woke me at 5am and then went back to sleep, then 6am. He had a carton of Capri Sun, and instantly brought it back up all over his bed. While I was changing his sheets he fell asleep. Not very helpful of him, and to cap it all the connection to his milk feed was leaking so I had to change his pjs too. Result? Jesse fast asleep in a crisp, clean bed...me wide awake finishing off the blog! Ho hum, that's the way it goes I guess. I am so excited about his count though I feel very happy. I'll put another post up at 10am when we get the results. Till then, tara,
love
Claudia

Day +11

Puzzle of the Day




What is this?

Answer at the bottom of the page!







Hello everybody! Jesse woke in a VERY bad mood today. In a way I was quite relieved as I always think grumpiness is a sign of getting better. I think he was STARVING! The doctors had decided to stop the feeds through his PEG so he hadn't had any nutrition for 24 hours. He was desperate for some Turkish Delight so I popped out to Waitrose (luckily its just round the corner) and got a box along with some other goodies like pretzels, iced gems and mini pringles. When I got back he launched into a slow but deliberate eating frenzy. Actually that's quite an exaggeration, he nearly ate one Turkish Delight as well as 6 pretzel sticks, half a packet of mini pringles and 4 iced gems. Considering nothing solid has passed his lips for 7 days it did feel a feeding frenzy at the time!

We had it confirmed today when Persis came round that it is GVHD. Jesse's temperature remained stable, since the steroids and his rash diminished. He had a bit of an appetite and kept all his food down. Jesse said today that he didn't mind having a BMT at all, but he did mind having baths! His counts were up again too, both his neutrophils (o.38) and lymphocytes (0.07). When the neutrophils reach 0.5 on two consecutive week days or 1.00 on one week day then Jesse will come off Green Precautions and go onto Yellow. This means he can leave his room, go to the playroom or anywhere else except where there are a lot of people (even outside) and he can have sibling and grandparent visitors! I can't wait for the counts tomorrow.

Tomorrow they will take blood tomorrow to test for engraftment. Persis said today that he expects that it will be 100%! If it is, it will mean all Jesse's blood will be made by his new marrow and will therefore be all his donors blood! The test can take up to four weeks but may only be a week or two. It is very early for this to be happening but he did get a very large dose of cells! Jesse will have have to stay on steroids for at least two weeks to make sure that they get rid of the GVHD. If it takes hold then it can be really, really nasty. But this does mean that Jesse will probably get the big cheeks associated with steroids and a big appetite...if its not one thing then its another hey? Also it makes his heart rate go very low so I was woken all night by the alarm going off. It looks like I'll have two weeks of this, it is really worrying at the time and very disturbing, I'm not sure what they can do about this.

Thank you for identifying yourself Sam, lovely to hear from you and thanks for the jokes! I'll show your comment to Jesse tomorrow. Sorry to hear about the split between Skippy and Snoopy. I'll get Jesse to adjudicate and let you know what he thinks. And now here is a clue to the Puzzle...


Have you guessed yet?

Yes, its Jesse's hair in a pot!












His hair was so annoying this morning getting all over his pillow, on his shirt, in his eyes, mouth and even on the Turkish Delight that we both had a serious go at it. It came out really easily, leaving a fine bum fluff all over. And the cradle cap wasn't too bad. I got almost all of it off in the bath a bit later. Jesse is very cool about it, he says he doesn't care. Here he is talking to Stan on the phone!

More soon, love to you all,
Claudia
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Day +10

Photo of the Day

"Jesse my lovely, you won't believe what's happened, but Kipper, Kippeur and some of the puppies have been swinging through the air at the circus! I'm not sure how they got there, but do you remember how you let them hang on a rope out of your window one day? I think they must have been learning to do some great circus tricks. I think they must really enjoy being doggy super star acrobats. "

Love you and miss you loads, Lily xxx

Hi Guys...well, Jesse is lots better tonight. He made the turn early afternoon. I had two hours sleep (4am to 6am) last night and then a bit of a doze from 7.30 am. Jesse had a raging temperature all night and well into the morning. He needed oxygen till lunchtime. He vomited again in the early hours (another sheet change) and was delirious. He told me he wanted to move back to London so he could have the lovely sweets he used to love that were red or white, tasted of sugar, were round, square or rectangular, crispy and not sucky and as flat as a pancake. I have to say I was stumped, I usually know what he is talking about but on this occasion I have no idea! It was all brought on by the orangey/red colour of the plastic bag we have to put soiled bedding into!

The on call doctor came at 6am and felt that it could be a fungal infection. The chest x-ray was apparently inconclusive. The doctor in the morning felt the same, but I, by this time, felt it was very likely that it was GVHD. I suggested this to him and having looked at Jesse's rash (which by this point had covered the sole of one of his feet), he agreed. They had thought it unlikely as it is very early for it to be happening, but this morning Jesse's neutrophils and lymphocytes showed a little rise (having been at 0 for 5 days). This all points to early engraftment. He checked with Persis (the consultant) and he agreed too. Just in case, they started him on another anti-fungal drug, ambizone, but they also began a course of steroids, methylprednisolone.

Within 2 hours of the steroids he was a different boy. He watched Looney Tunes DVDs all afternoon and his rash and temperature had subsided. Below is a load of stuff about GVHD, it is only for the most dedicated of you...basically GVHD is caused by the new marrow fighting the rest of the host's body and can be damped down with steroids. On one hand it is a good thing, it means the marrow is taking and engrafting. On the other hand if it gets out of control it can be very nasty and life threatening...

Yesterday I noticed a few stray hairs around Jesse's face and wondered if this was a sign that he was losing his hair. Sadly I was right, today his pillow case is covered. Luckily he doesn't care, I mentioned it to him and he put his hand to his head and plucked out a handful. He seemed totally unfazed! I have two worries, one is his rampant cradle cap that is invisible at the moment...I don't think that will look too apetising when it is in full view! And the second is that he is likely to lose his eyebrows and eyelashes, his are so glorious it seems very cruel. They will all grow back eventually but I imagine he will look very different soon!

Thank you for your comments and emails. A few questions...Serioussamp, who are you? Leo, when are Skippy and Snoopy getting married? Hello Granny, we loved to hear from you, will you write again soon?

And finally here is a beautiful sepia photo of Jesse in all his cricket gear taken by Dominic at Greatham. It must have been August 2005, only a few weeks before we knew how ill Jesse was. Thank you, Dominic!



GVHD-an introduction (click here to read it)

ONLY READ THIS IF YOU ARE VERY KEEN! IT IS VERY LONG AND QUITE TECHNICAL...Ed

Day +9

Photo of the Day

As promised here is Bernie in a bag! I'm not sure Sainburys had this in mind when they came up with "Try something new today"...






What a day! Jesse has been very unwell today and still is. He is stable but has a very high temperature and as yet no one knows what is wrong. It could be a bacterial, viral or fungal infection or it could be Graft Versus Host Disease (GVHD), although they reckon its a bit too early for that. He has been floppy, sleepy at times, vomiting, had the runs and his oxygen levels are low. He has a rash on his thigh and is very flushed, he also said it hurt when he did a wee. They sent a mobile X-ray machine up to check his chest but thankfully it was clear. He is on 4 different IV antibiotics and oxygen. We'll have to wait and see how it develops and if the cultures grow anything. I know this is all to be expected but it has been very worrying as you can imagine. This is what he looks like tonight, he has two IV lines going in, a milk feed running, a monitor on his finger to check oxygen levels and oxygen. As I am writing this (2.30am on Sunday 11 Feb) Jesse has just been very sick. I didn't catch it all so he's just had his fourth change of bedding and his temperature has reached 40.4 (the tempadots don't go higher so it may be more).













Last night Jesse was very funny. He woke up at 2am in the middle of his 4 hour transfusion and was buzzing! At 3.20 I told him I was going to sleep, I've no idea when he fell asleep. At 7am I awoke to hear "Claudia, I need a wee, Claudia!" At 7.30 it was "Claudia, put on the TV, Claudia, there must be something on" and so it went on! Here he is at 2am this morning with his dogs Ragor (the black one, pronounced Ray-gar)and Toby. As you can see the dogs love Jesse very much!

Tim came and spent the afternoon and evening with us, which was lovely. Derek brought Bernie over and he had a great time in the play room. I don't feel like writing too much but I took a load of photos today, I hope you enjoy them! The one of Bernie walking is a bit blurred but at least you can see he really is walking!
love
C
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Day +8

Photo of the Day
A picture of the leader of the dog militia wearing some very tough and strong custom built armour!



The ward round was today. Our consultant, Persis Amrolia, still feels Jesse is doing well although he was concerned that he has been running a slight temperature (37ish) since yesterday. So they have sent off blood to see if it grows anything (but it may take 5 days). He said we should expect to see counts rising from the end of next week and maybe as early as Wednesday. Jesse had GCSF today, so we may see a little rise in his neutrophils in the next few days.

It has turned into a bit of a nerve wracking afternoon/evening. This afternoon Jesse's temperature spiked at 38.4. So he is on IV antibiotics. They have to be really careful as he has no immune system at all..Although the doctors say it could just be the new marrow settling in! At the same time his counts are really dropping, his hb went from 9 to 7.6 in one day, they didn't believe it so they did the count again, but it was right. I thought it probably would be as he was really pale and tired this morning. He slept 12 hours last night and before midday he was asleep again for over 3 hours! But, as ever, when he woke up he was very in good spirits and very funny. Jesse's platelets are really low too, they were at 11 this evening so he has just had a platelet transfusion and as I write they are giving him a red cell transfusion. So it has been a busy and worrying evening, its all to be expected but that doesn't make it any easier...I hope he feels better tomorrow. He still isn't eating anything but this evening he had a bit to drink and he had been holding down all the feeds through his tube.

Chloe came again and took Bernie out this afternoon, as usual they enjoyed each other's company. This meant I could run through some of the daily Jesse "jobs" with Derek, including the dreaded bath! Jesse may be brave when it comes to many things, but the daily bath is a different matter. I went to join Chloe and Bernie, and Derek and Jesse had a lovely afternoon together reading the Secret Seven. Back at the house Bernie and I invented a new game, its called "lets go for a trip in a reusable Sainsburys bag!". He loved it! I'll get a photo if I can. By the way, if anyone wants to send photos (Joey), then you can email them to us at jesse@purple-heart.com

I went through all the recent comments with Jesse today, he loved them, especially from Joey, Katie, Cory (great song) and Niamh, so thank you. And Jenny he was delighted by the story of Derek throwing up tomato soup and soldiers on his Mum's bed! He was in stitches! Rach, he LOVED the baked beans joke (sent by email). If you give me your permission I'll copy and paste it into the blog so everyone can enjoy it! Jesse was enchanted by Poochiella's song (as was Kipper) but sadly Kipper says he doesn't know any songs. I don't think he is a great romantic! Sophie, Jesse thinks Kipper may go to the Eiffel Tower but isn't sure if he'll see Hooper. What does he look like?

Enough now, I must go to bed, good night, more soon,
love
C
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Day +7

Photo of the Day
KippEUR has a strange family, here is his cousin Kippiere sitting in a plate of noodles, the noodle poodle...Lily got a photo!




I can't believe it is seven days since Jesses's transplant! Its amazing how time flies when one have no choice but to enjoy oneself! Really it is very strange here, it is almost three weeks and it really has gone quickly. Soon Lily will be going back to Glasgow and we will have to work out a whole new regime. At the moment it feels quite easy because we are so focused on Jesse. Today was much the same, he really has eaten nothing and drank 20 ml of squash but has held down the feeds through his PEG. He was very sick (both ends) at 5.30am but since then has been fine. As ever he was in good spirits. He enjoyed his lesson (based entirely on dogs) and lots of schools TV, plus vimigo (his vitual pet dog Toby) and we finished another Famous Five.

Derek didn't visit today as he feels a little chesty, I think he is probably fine but as Jesse's counts are so low we didnt want to risk it. I saw Bernie this afternoon while Jesse was having his lesson. Thank you for your comments, I haven't read them to Jesse as he is very "flat" at the moment and has little interest in anything. Keep them coming though as I am saving them up for when he feels a little stronger which I hope will be very soon.

Jesse's counts are still dropping. His platelets are now down to 27, if they go as low as 10 he will have a platelet transfusion as he will be at risk of serious bleeding. Again this is all to be expected, they are aiming to kill all his marrow. On the ward you hear of all sorts of complications; line infections, as well as viral, fungal and bacterial infections. One 8 months old baby girl has been in for 11 weeks, she has CMV (cytomegolovirus). She was CMV positive but her donor was CMV negative so now her new marrow doesn't know how to fight the infection already inside her body. She will have to be in for at least another 2 weeks even though her counts are really good. Her Mum looks very tired. The different possible complications are mind boggling! So please keep those positive thoughts coming, and anything you want to say. Leo, I'll talk to Jess about Pooch asap. I snuk out tonight (with Jesse's blessing) to have a take away curry with Derek at the house. Boy, was it good! Much, much better than any curry in Brighton in nearly three years! I'm very tired so I'll sign off for the night sending you all our love,
C & D
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Day +6

Another short post from me as there isn't much to tell. Apart from the great news that Jesse wasn't sick today! That may be because he's almost stopped eating and drinking (150ml fluid by mouth and three more tiny Green & Blacks chocolates) apart from his milk feed through his PEG. He has spent a lot of today sleeping. All his counts are dropping, still no white cells at all, his hb is 9.2 (pretty good for him but nearly one point lower than yesterday) and his platelets plummeted from 77 yesterday to 47. No wonder he is feeling wiped out! His mouth is still fine. I was talking to our nurse, the lovely Lenka, and she said he is doing really well. They don't expect them to eat or drink at this point. Many of the kids and babies are on a drip for fluid and TPN (an intravenous way of feeding) by now.

Derek and I have both have had very slightly froggy throats so we have been popping vitamins by the hundreds, I think my throat feels fine tonight. It is very easy to get paranoid and confused about one's health when being well is so important! Anyway, that's all folks, I'm shattered so am off to my plastic covered tiny mattress! Sweet dreams to you, keep in touch. I haven't read the latest comments to Jesse as he hasn't been very receptive for the past couple of days (although he adored Basil Brush today), I'll have a session with him tomorrow. Thank you all so much for your care and kind thoughts!
love
C
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Day +5

Photo of the Day

Kipper knows how fond Jesse is of the Famous Five and has heard all about their adventures on Kirrin Island. For a long time he has been on about visiting Kirrin Castle, and a couple of days ago, while Jesse had a sleep, he made it! As usual he sent Stan a postcard, he looks like he is having a lovely time!





Jesse continues to do well. The consultant is very pleased with him. He still isn't eating, but they say that is completely normal. Today all he ate were 3 tiny individually wrapped Green & Black chocolates I spotted in Waitrose and thought he might fancy. He really enjoyed them but didn't want anymore. He has stopped drinking much too. The doctors have upped his anti sickness drugs (he is on 7 doses of 2 different kinds a day) and gave him a patch behind his ear which is supposed to help. They gave him a bolus (a sort of liquid solid feed through his PEG) for the first time today and he is on a special formula milk feed all through the night. This evening he was very sick again. I dread to think what it would be like without the anti sickness medicine!

But as usual he has been in very good spirits and his mouth is still fine and his bum is loads better. Every night I get his blood counts for the day, tonight there was just a line where the neutrophils and lymphocytes (white cells) are recorded. So as of today he has absolutely no immunity whatsoever against anything. He is now very vulnerable to any infection, so we have to keep washing our hands and crossing our fingers. On day +8 he will have GCSF, which boosts white cell production and we should see a little rise, a sign that his new marrow is responding. I'm really looking forward to that moment!

Chloe came from Oxford today and had Bernie for the afternoon. I think they have a very good time together! It was lovely because Derek and I were able to be with Jesse at the same time for a little while. Then I left the boys together for the afternoon and met up with Chloe and Bernie for a hot chocolate and a chat. Thanks again Chloe, you really are a star! So all in all it was a good day. Keep the jokes coming, they keep our spirits up!
love
C
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PS Leo, I'll pass on your comments to Jesse tomorrow and let you know what he thinks.

Day +4

This is going to be a short post (phew I can hear you saying!). I am hungry and going off to see Derek for an hour before bed...Jesse is still doing fairly well. But he really isn't eating at all. The only thing he is taking at the moment is UHT milk, but today was very sick twice and so a lot of what he had drunk came up. But the good news is he hasn’t developed any more mouth sores today and the small one yesterday is almost healed. His bum is still sore but not too bad. Generally he is still in good spirits.

Today was much busier and I feel like a different person, Elaine (a friend I met through our baby group in Brighton) rang last night to say she was coming here today for an appointment for gorgeous Ruby, so she took me out for a coffee. Luckily Jesse was well enough to be playing on his war game so didn’t mind me going. I can't tell you how wonderful it was to have some adult conversation and to get out of the hospital! This afternoon Jesse had a lesson so I got out again and bought myself a dress and a pair of jeans (I keep running out of clothes, 4 skirts just isn’t enough) and then I met up with Derek. I took Bernie out for a brisk walk to Waterstones in Gower St to stock up more Famous Five while Derek spent a couple of happy hours with Jesse (reading the Secret Seven).

I'm going to go now. Keep in touch, we love to hear from you, fingers crossed for tomorrow...
love
Claudia

Day +3

Boy is it quiet here at the weekend! We are in Room 1, the ward is like a long corridor with 10 rooms on one side. The nurses station is opposite room 7, so we are as far away as we can be from them and nobody ever walks past us. In some ways it is good but it is also very isolating. Up until last week we had a little boy next door and he was able to go into the playroom opposite us, so he would smile and wave as he passed. But he has gone home and so now it feels very lonely sometimes. I have been going a bit stir crazy, but this afternoon I swapped with Derek and saw Bernie for the first time since Wednesday, he gave me lots of hugs! It was so lovely to see him, and as a bonus Ruth (yellow) visited so I had some adult company too!

Jesse is OK but not great. He was quite grumpy this morning, but eventually said he really fancied some mango and some Turkish delight. I had the mango so went and peeled some, he took two bites and said how delicious it was, then threw it all up! That was the end of the mango idea. This afternoon he had half a satsuma and then noticed he had mouth sore. He said it wasn't the Melphalan, he had bitten cheek, I'm not so sure...we'll have to wait and see. This evening Derek turned up with some Turkish delight (he had scoured Kilburn and the Edgware Road to find some). Jesse enjoyed one piece, which promptly came straight back up again. So today he has only had half a satsuma and over a litre of milk plus his feed through the night. Poor thing has lost 1kg since we arrived two weeks ago. He has been complaining of a sore bottom today, another Melphalan side effect. I think he'll need codeine tomorrow and then he can have morphine if it gets worse. Keep all your fingers crossed that his mouth doesn't get bad please!

In spite of all this he is still in good spirits most of the time, we are ploughing through the Famous Five at a rate of knots; its the only thing that he always wants to do. Thank you Enid once again! And thank you for you comments too; Jesse's still loving the jokes (he wasn't too sure about your nits joke Cory, but he did think it was funny that you had nits!) so keep them coming. Say hello to Balfour Infants from us Tracy; the blog is probably blocked, sorry about that! And I'll let you know how we get on tomorrow,
love
C
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PS Leo, does Poochiella Puddleduck look anything like the photo? Jesse is thinking about a lady friend for Mr Skippy Walladoggy, I'll let you know what he says soon...

Day +2

Probably the quietest day yet! Jesse was sick at 6am but since then has been fine. They have increased his anti sickness drugs a little. He's continues with the self imposed UHT milk and soft roll diet, but thats not too bad. He's in good spirits still. So not much to report. Bernie is a lot better so I hope I can see him tomorrow and Derek can see Jesse. I can't wait,
love
C
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Day +1

Photo of the Day
Kipper gets about...here he is in China. He popped off while Jesse was napping and sent Stan a postcard. Good old Kipper!

Thank you for all the positive emails and comments. Sorry that last post was very short; I wrote it with Jesse and he needed my attention all evening after that. I was too shattered to add to it last night. We have had yet another OK day. Jesse is hardly eating (one soft roll and 9 lychees today) and not drinking much either (although I did manage to get him to drink 500ml of UHT milk this evening). They are supplementing his intake with an all night milk feed through his gastrostomy, which means I don't have to worry too much, although he has lost weight.

The consultant, Persis Amrolia, saw us on his ward round today, he said Jesse is doing very well so far. The effects of the chemo may kick in strongly the other side of the weekend, so I am preparing myself for that (although the nurses have said they normally start earlier). His blood counts will be dropping daily so he is getting more and more vulnerable; they say it is almost certain that he will get an infection of some kind or other. But he was very pleased at the number of cells Jesse received yesterday, he had so many that they would expect his counts to start rising in around 14 days rather than 21. I don't think they can really predict anything too accurately and in a way it is better to be forewarned. I am trying to take each day as it comes, fully expecting the next to bring nasties and then I can be pleasantly surprised when the all has gone well.

Jesse is tired, he had a couple of hours sleep this afternoon. But he is still in good spirits and loving the jokes (not all...but most). He got very cross with me today because I told him to go to sleep (he couldn't keep his eyes open) and then didn't wake him in time for Basil Brush(thanks for the top tip Niamh, he roars with laughter all the way through) and Raven. He did wake up in time for Bamzooki (any other zook builders out there?) which we have been waiting for since last Friday, so I didn't so all wrong. Today Jesse watched Homeward Bound 2 three times! (thanks Annie) and Homeward Bound 1 once! At least it made the day go quickly.

At the moment Bernie is worse than Jesse, he has nasty d+v, although this seems to be abating. He is also running a temperature and wants to sleep a lot. Derek luckily is fine, but is keeping away from us until he is sure he won't get it and Bernie is well. This means I haven't seen my little baby for 2 days and I miss him so much. I'm sure he is fine as Derek is fantastic with him, but it also means Derek hasn't seen Jesse either. It is so sad as we are just around the corner. Tim's cold is on the mend which is good news, but at the moment I am fine with Jesse. We actually have a very nice time together, it is very precious being able to be with him so much!

I hope you all have a great weekend, keep in touch, and I'll keep bloggin when I can,
love
C
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Red Ruth believes in half dog half ducks and has a photo to prove it. Jesse says he didn't expect them to look quite like this but he thinks Kipper would like Poochiella Puddleduck all the same!

Day Zero (part two)

Jesse had an OK afternoon, he's not eating but he is drinking and is incredibly well considering. We've just been looking at the blog and Jesse has a message for Leo. He does believe in Poochiella Puddleduck and he thinks Kipper might like her. Kipper does have the appropriate footwear and goes bowling sometimes in the night. He may take Poochiella to the Caribbean.

DAY Zero! The day we have been waiting for.

A VERY BIG THANK YOU TO THE VERY KIND MAN IN GERMANY WHO IS PROBABLY FEELING QUITE SORE TODAY!
Jesse received his new marrow at 11.55 am today. It will take 4 hours. I'll let the pictures do the talking.

The nurse connects the line.











She switches the machine on.











It moves along the line.















It gets closer.











This is what it looks like, there is 290ml.















And this is the moment that our precious little boy gets the new bone marrow that we hope will make an enormous difference to his life.













Within 5 minutes he was asleep. He was up early this morning and has been sick a couple of times.








This is what he looks like now, he has been asleep for a couple of hours.













I'll do another short post this evening if I get a moment. Sadly Derek couldn't be here as Bernie chose this morning to start diarrhoea and vomitting, this means that Derek can't visit for 48 hours. I hope I don't get ill as if I do I'll be out too and Tim has a cold. They say they'd look after him well and I'm sure they would, but I really hope it doesn't come to that!
Love
C
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