Day -1

Jesse has chosen these two smiling dogs from the many that Joanne sent the other day to be the Photo of the Day! I hope you like them as much as we do.

This post going to be very short as I am very tired. Tomorrow is the big day, although everyone says it is an anti-climax. I'll let you know how it goes. Today went fine again, officially he "had a rest" as the nurses put it. The Ciclosporin wasn't nasty; no reaction at all and it turns out he has to have it twice a day for the next 8 weeks. His chemo is over and he is doing really well. Our lovely nurse Lenka came in this evening and said she couldn't believe how well he was. She said that most kids would have started being sick and would continue for a week. Jesse has been really ok today, he was a little tired and off his food (although he ate vast quantities of melon and cucumber), but still in good spirits. Lets hope it continues...

Thank you for your jokes and comments, lovely to hear all those new voices! Joey, Jesse loved your joke the best today (I think you and he share the same sense of humour...) thank you and good luck with your assembly! Say hello to everyone in Swans.

And finally here is a photo Jesse took today from his bed. His dog Toby found himself in this undignified position, wedged between a chair and the bed, after an unsuccesful attempt to jump on to the floor! We think he looks very silly. More soon,
loads of love to you all,
Claudia
x











PS Leo, Kipper doesn't have bowling shoes and his birthday is October 20th, but I think you might be making Poochiella Puddleduck up. I haven't talked to Jesse about this as Derek read the blog to Jesse this evening so I don't know what he thinks of your proposal, I'll let you know soon,
love
C
x

Day -2

Cory in his karate kit is the Photo of the Day! We think he looks fab and maybe when Jesse is better he'll come along to the lessons. I've warned him he'll have to do what the teacher tells him, something he's always found difficult! Thanks for the photo and for the great jokes Cory and Niamh!



Today Chloe came from Oxford and stayed with Bernie all afternoon. I think they both had a lovely time! Thank you so much, it was a real treat for Derek and I to be together with Jesse! It was so good to have him here as I was worried about the Melphalan, but it only took 5 minutes and Jesse crunched on a lemon and lime Calippo like trouper! Poor lamb, they told us they would be starting at 2pm so I got him started on his ice just before, then the nurse came and warned us they were runnig 15 minutes late. An hour later they turned up with the drugs, Jesse had been sucking away on and off all that time. By the time they were ready we had to get another Calippo out and he was freezing! I wrapped him up in a dressing gown and his blanket and he kept munching. I hope it will have helped reduce the side effects, maybe it will protect him from damage to his throat and gut too. The nausea is supposed to start in a couple of days but actually he was very sick four times this evening (he was amazing though; cheerful and resilient), then the mucositis (mouth ulcers etc) can develop a few days later, his hair will fall out in a week or so. I really hope he doesn't suffer too much, he has been so brilliant, it just seems very unfair. I can't beleive how quickly the days have gone. Tomorrow we are on Day -1, with his last nasty, some Ciclosporin, which is an immunosupressant...and then on Thursday he gets his new marrow. We have to accept that there is no way of knowing how he will be, but I am sure there will be some very difficult days to come.

I wish you could have seen him this afternoon throwing back his head and screaming with laughter at the comments (he loved your's John), jokes and the pictures Joanne emailed through (I'll get Jesse to choose his favourite as the Photo of the Day tomorrow so you can all get a taste!). I know there are lots of lovely people looking and not commenting for one reason or another, so hello to you too! But don't be shy, we'd love to hear from you.
love to you all
Claudia
x
PS Things really have improved since you were in hospital Dymphna, you poor thing, it sounds really traumatic. Jesse was quite shocked when I read it to him! Here we are with and internet connection, flat screen TV (that doesn't work as it isn't tuned properly), telephone, another TV that does work, parent's bed, play specialists, psychologists and even a special BMT kitchen that cooks each child's meal individually! However there are aspects that leave a lot to be desired, some big and some small but all avoidable. For example, the sour women in the family services department who have been very unhelpful on several occasions (I may expand another day). The mould on sinks everywhere on a BMT ward is another. I think there is going to be an audit; the head of cleaning came round on Monday and I showed him the before and after photos of our bathroom. I pointed out that the sink where everyone washes their hands as they enter the ward was in a similar mould encrusted state. The next morning it had been cleaned and resealed! I think I had better stop rambling and go to bed.
x

Day -3

Hello Guys!
Today went very quickly, full of nothing but busy all day. Jesse had his lesson, his medicines, chemo, lunch and supper and somehow it was bedtime. He was wheezy this morning so he is on a nebuliser 4 times a day. Other than that it has been uneventful!

Jesse LOVES the comments, especially the jokes! Thank you! This evening he was roaring with laughter. He wants more, and has got one for you;

A piece of string went into a bar
"One pint please" he said.
"Sorry, we don't serve string" replied the barman.
So the piece of string went home, tied himself up and combed his hair.
He walked back into the pub and tried again,
"A pint of beer please" he asked.
"Are you a piece of string?" asked the barman.
"No, I'm a frayed knot".

Cory, can we put that great photo of you on our blog please? You look fantastic! Jesse is very impressed and a little bit jealous. He says when he is better he wants to do Karate too.

Daisy, Jesse's next wobbly tooth (at the bottom) has a big tooth behind it too, so he looks like a shark too...you aren't alone!

Shambala, lovely to hear from you. Just to let you know we love you dearly and are thinking of you always but sorry, it hasnt rained much here at all!!! At least I don't think it has, I don't get out much!

One BIG piece of news...its official, Bernie can walk! He is very proud if a little unsteady. He is 13 months old today, so Lily definitely wins the prize! Back in Brighton everything seems to be going smoothly; Lily is doing a fantastic job of keeping everyone fed and clothed and the boys are both helping. I am very proud. The shop is doing well going by the daily takings and is being managed beautifully by everyone! Thank you so much!

Tomorrow we have the Melphalan. Jesse has been practicing eating a lolly. He loved the cola push-up-ice and tomorrow he has chosen a lemon and lime Calippo. He has promised me faithfully he will suck on it while he is having the chemo. I really think he does understand how important it is, and I'm sure that he will do what he can to minimise his chance of mouth ulcers; he's had so many in the past. Fingers crossed, more soon,
lol
Claudia
xxx

Day -4

Jesse's dog Kipper apparently quickly snuk off to the Caribbean last night (he was back in bed with Jesse by this morning)! Thanks, Stan, for the photographic evidence...you should have seen Jesse's face when he saw it! The photo is now on our desk top and very fine it looks too.

We had another easy day, more chemo and millions of other drugs which Jesse seems to be tolerating well. We have a tough week coming with the nastiest chemos on Tuesday and Wednesday and the actual transplant on Thursday. Jesse is now very vulnerable and his counts are dropping rapidly by the day. His platelets are lower than they've ever been, he has no white cell count at all and his hb level is dropping a point a day (it used to be a point a week or two). Consequently he had to have another transfusion this afternoon. He is looking much pinker.

Today passed easily, we filled it with "zook" building (I may explain another time), computer games, Famous Five reading, Knex building (Derek's speciality) and finished it off with Robin Hood, Prince of Thieves. A perfect Sunday almost! Derek spent most of the day with Maggie and family (thank you as ever for your hospitality and generosity) and managed to do loads of washing and shopping for us...

Thank you again for your comments and emails, he really loves to hear from you and so do I. More soon,
love
C
x
PS We are trying to set up a MySpace page so you can send photos but are encountering difficulties as the internet access in the hosptital is provided by the school, so there are blocks on anything that smacks of chat etc. I think there is a way round it...

Day -5

Another fairly uneventful day! On the medical front Jesse was fine with his chemo. His mood was much better too! The tooth fairy left £2 for him, he was very pleased. He has been in good spirits all day.

This morning Derek went to Zara's birthday party with Bernie, they had a great time. Ruth relieved Derek of Bernie duty this afternoon and he came to the hospital where he gave the bathroom a two hour make-over, see below for photos! What is shocking is that every bathroom on the ward is probably on the same state...both nurses I have shown it to were horrified!

Tim came over this afternoon and stayed with Jesse while Derek and I went out for a Bhel Poori with Bernie. The food wasn't great but it was lovely to get out and be with Bernie!

Thank you for the jokes, tales of everyday life, muddy dogs and school etc (Jesse says hello Katie!). Jesse really does appreciate the comments. He laughs and asks to hear them again. We loved the elephant photos Rania and Malu, and all the other animals too. By the way, he says he likes lions and horses!

Here are the bathroom photos (do you think I might be cooped up in a small room with not too much to do by any chance?)
love to you all
C
x

Day -6

Thank you again for all your comments. I was busy all day with Jesse so I didn't even put the computer on, I'll read the latest comments to Jesse in the morning. After I finished yesterday's post Jesse was so peaceful I went round the corner to visit Derek. I had a tour of his "Home from home" (it is good to be able to picture where he and Bernie are living). We had a microwave meal together and shared a bottle of wine. It was really therapeutic to get out. I was back before midnight and Jesse had just woken. He was in a good mood, we looked at the blog together and I read him some comments. He liked your joke Cory (but I think we may have heard it before) and he was in stitches with your one Niamh! He liked the 2.30 joke too! Thank you all!

He had a quiet night, but in the morning the most exciting thing happened! His tooth came out...it is under his pillow as I write. Inspite of this he was in a bad mood. He wouldn't watch TV, he switched the computer of and turned his head to the wall. He wouldn't eat or drink. So I got into bed with him and we snuggled up while I read "Five on Kirrin Island Again". He cheered up no end, but was in a funny mood all day. I think he was feeling rough, he has a very runny tummy. But he enjoyed his lesson again and then ate a good lunch (for him). This afternoon Derek visited and they had great fun building a Knex car (still to be completed). But just after he went Jesse had another bad reaction to the Campath, very high temperature and shakes. They had to give him oxygen again. But after a couple of hours he was a bit better.

While this was going I had to go off and have the Green Precautions talk. This is all about what is and isn't allowed for when he hits "Green" on Monday. He will then be in strict isolation as he will have no natural immunity left. Don't worry, I won't go through it all. It took the nurse 1hr 10 mins to tell me. Sufice it to say there is a lot of hand washing, apron wearing, clothes washing etc to be done and much more. All his water has to boiled and drunk within 4 hours, food is to be eaten within one hour of cooking (by the special kitchen), teeth brushed 4 times a day with a disposable toothbrush etc, etc etc.

It was during this talk that I pointed out that our bathroom has sealant all around the bath that is black with mould. The senior sister was horrified and even more so when I showed it to her. She said that she would try to organise works to look at it on Monday. It struck me that Derek and I could do it more cleanly and quickly ourselves. So I suggested that as a plan and after a few negative thoughts about insurance and pipe damage she quickly agreed that if was miraculously sorted by Monday that would be the best for Jesse all round. So guess what, we're going to being doing some unexpected DIY tomorrow!

The wonderful Red Ruth is going to turn up with the sealant and the fungicide and then babysit Bernie while Derek and I tackle the job. We'll let you know how we get on. Tomorrow Jesse only has Fludarabine (the Campath is all done now) and then on Tuesday he has the real nasty; Melphalan. This will make his hair fall out and maybe give him a very sore mouth and gut, although apparently if he sucks on an ice lolly while it is being administered (it only takes 5 mins) then this side effect can be greatly reduced or even eradicated. So we have until Tuesday to decide which flavour of Calippo to order in! At least there are some ups to all this!
More tomorrow!
Love
C
x

Day -7 (part two)

Its funny, nothing really has happened today but Jesse and I are both exhausted. He has just gone to sleep (hours earlier than usual) and I won't be far behind him. He had a lesson with his new teacher Louise today; she is lovely and they got on very well. This afternoon he had two lots of chemo and no reaction! It was such a relief. I was dreading it. He has already lost half a kilo so they will feed him through his peg tonight while he sleeps, tomorrow there'll be more of the same.


Here are a couple of photos I took today that show our room in all its glory and below is Jesse's first very wobbly tooth which he wiggles all the time! (Don't look if you are squeamish),

love
C
x
PS Cory and Niamh, I'll read him your jokes tomorrow, thank you!

Day -7 (part one)

Jesse is still sleeping, he had a peaceful night. At one point his heart rate dropped to 35 (the alarm is set off at 45), the nurse came quickly and we tickled him. It soon recovered to 50+, she said "You have a very relaxed son!" It was quite frightening, but a known effect of steroids so they'll have to use them sparingly...I'll update this evening, send us all your positive thoughts for the day please.

Some of you may be finding it difficult to write a comment (I have been asked by email how to do it). It is very easy. Go to the bottom of the post you want to comment on and click on comments. On the right there is a box for you to leave your comments. Below the box is a place to sign in, if you don't have a google account below this there is a link saying "No Google account? Sign up here" Simply click there, give your details and you'll be away. We look forward to hearing from or if you prefer just keep emailing; either way it is lovely to hear from you (when Jesse hears about the dolphins and the pelicans I have a nasty feeling Perth is going to be added to the "must do" list Venetia!)

More later
C
x

Day -8 (part two)

What a day! I had a feeling it was all going too smoothly! Jesse started the Campath infusion at 2pm (he finished it about midnight). He was fine until just after 5, Derek visited him this afternoon and I took Bernie out and about for a bit (in fact I met up with Jackie, my accountant!). When I got back and D and I swapped he seemed fine (still playing his war game), but all of a sudden he looked rather woozy and went very floppy. Poor baby had a very high temperature and was feeling very rough. The doctors checked him out and said although it was early to react it was within the grounds of normal. They gave him piriton and calpol but he didnt perk up and his temperature was still going up, and he developed a rash. Then he was horribly sick and the oxygen saturation in his blood went low so they gave him an oxygen mask. It was all very frightening but after 3 hours he did feel a bit better and watched some TV. Red Ruth very kindly offered to come and play with Bernie this evening, so Derek and I had a couple of precious hours together with Jesse, which co-incided with him being not so ill...thank you so much!

This drug breaks down the T cells in the body (lymphocytes) and can often give a bad reaction. Today he has had steriods, calpol, piriton, pethedine, anti-emetic and three different antibiotics several times all in attempt to alleviate or prevent the side effects. He has another dose tomorrow and his first dose of fludarabine (another chemo drug with hardly any immediate side effects), but because he has had such a strong reaction today he will have to have all the above premeds again, which they were hoping to avoid.

Jesse hasn't complained (except once at his lowest moment he said his life wasn't cool) and has been very funny at times. He was having difficulty getting out of the high bed to go for a wee so he told the nurse that the bed should be redesigned with steps to go up and a system involving gravity and transformation to get down. She suggested he should draw a plan and then show it to the boss who may get new beds made to his specifications! We have been working on plans for nice things to do when he is better, although I'm a little worried it may well work out a bit on the expensive side! One of the first things we are planning is a trip to the Carribean, as he says the water is very shallow and he would love to go swimming in it. He would also love to go gathering berries, bay leaves and ants there (we were watching a telly programme tonight where two modern guys went hunting gathering in an olden days way). He wasn't too keen on the hunting bit though. And then we are going on a trip to China, to eat lots of seaweed! I think our list will be quite long and very costly by the end of this!

Thank you again for all the post and emails. He really loves them, I read them out as they come in and they are a great distraction and a lovely way to make him feel connected with the world. I haven't read him Maike's post as he was asleep, I wonder if he is meeting a little German girl in his dreams? I'll ask him tomorrow. I have counted up and we have heard from Austalia, Winnipeg, LA, Boston, Paris, Cannes, Berlin, Birminham, Cheltenham, Chelmsford, Brighton and London. Isn't technology a wonderful thing! And so are all of you,
love
C & D
xxxxxxxxxxxxxx

Day -8 (part one)

Hi Guys,

Thanks for the posts and the emails and the photos and the jokes! All much appreciated by us both. As I write Jesse is about to start Campath, at first he only has 1mg per hour, then 2mg ph then 3mg ph, until after 8 hours he will have had 25mg. His temperature went down and is now normal but overnight, while he was sleeping, his heart rate and blood pressure were very low (so hardily slept for worry). This was probably due to the premed steroids and was better when he woke, but they delayed his second premed until the bmt doctors were on this morning. So we are now 5 hours behind! He may not have any reaction or he may be very ill; wish us luck, I'll do a second installment when I can.
C
x

Day -9

Once again thank you for all your comments and for your many emails too. Jesse loves it when I read them to him. We now have internet access, although Jesse hogs the computer all day playing unsuitable war games, so I hardly get a chance to use it! At least he is happy, so I don't care! The last 24 hours have had many ups and downs, throughout it Jesse has been a star.

We are pretty certain he has a slight infection in his PEG (his feeding tube), but it is difficult to say as they often get sore because they leak some gastric juices which can be irritating to the skin. It looks infected to me and to some doctors, so he has been on antibiotics since yesterday and it looks a bit better. His canula blocked at 3am, the nurses fiddled with it for an hour and then gave up. Jesse eventually woke up and was incredibly good humoured about it. He said he was glad it didn't work!

In the morning he slept late and walked down to theatre in his socks and gown. He climbed up to the bed on his own and held on the gas mask himself. He wasn't worried and didn't have a word of complaint. The nurses gaped in awe! The line went in fine and hasn't hurt him at all today, but he was very sleepy and then he had an allergic reaction to something. His face was swollen, he had blotchy hives and then he was sick. But after some piriton he perked up and played on the computer all afternoon. He managed to eat a bit of supper.

This evening his temperature as been creeping steadily up, peaking at 38.1. It is possible that they will delay starting chemo tomorrow if he doesn't get better. As I write he is having a transfusion, as the first lot chemo (Campath) can bring on a variety of extreme reactions, especially the first dose. It is given through the line for 8 hours and so they want the transfusion done before then. They will decide tomorrow what to do; it depends on how he is through the night. I am worried as I know our donor can't do after 31 January, but I don't want them to do it if it is putting him at risk...I will do a new post as soon as I know.

On the housing front, we have a room! I haven't seen it as I have been with Jesse (apart from a lovely hour with Bernie this afternoon). Derek says it is very small. but it has a nice kitchen and family room, so there is somewhere for Bernie to play. It is in Guilford Street (just around the corner); one of the Sick Children's Trust's houses. He has only met one person, and it turns out her son (7 months) has myelodysplasia too! He is on Robin ward and is due on Fox ward (where we are) for transplant very soon. I think we are the only 2 cases of MDS in GOS at the moment, so how strange is that? I haven't really talked to anyone much except the lady next door. Her son is 5 and they have been in for 8 weeks. He may go home next week, but he isn't eating and he needs to before they discharge him.

I must go now as Jesse is still awake, but quiet. I think it must be hard to sleep while having a tranfusion! I am going to give him a cuddle.

Claudia

Day -10 (10 days before transplant)

Claudia and Jesse settled into the room in Great Ormond Street today. Thank you for all your lovely comments which were read to him. They made him happy and some got him laughing. Jesse should be in theatre quite early tomorrow morning to have his Hickman line inserted. He seems to be on good form tonight. Please keep in touch. We will write more tomorrow. Thanks again.

Derek

A new haircut

Yesterday Albie took the clippers to Jesse's hair! We think he looks great, he thinks he looks like an army guy! It is very likely that he will lose his hair due to the chemo so it probably a very good thing that it's so short.

We aren't looking forward to tomorrow in the slightest, we haven't packed yet (although everything is clean and ready to go). Lily came back from Glasgow so she and I spent the afternoon at the shop getting it ship shape.

We still haven't got anywhere to stay but on Friday we were relieved to find out that we are top of the list, so I will be going to GOS with Jesse tomorrow morning by train and Derek will follow either later or on Tuesday with Bernie. I hope we get good news about the room soon.

Thank you all so much for your many posts and emails wishing us luck. We really do all feel the love! And finally we thought you might like a photo of Bernie on his first birthday (three weeks ago)...and no, he still isn't walking! More as soon as we can.
Claudia
x

A successful trip to GOS!

Jesse is now back at home (we got back on Tuesday evening) after an exhausting three days in GOS. On Monday he had a general so they could do a bone marrow biopsy (no results yet)and fit a PEG (gastrostomy). Jesse was fantastic! He found it hard to go without food and drink all day (they didn't operate till 5pm and he hadn't eaten since the evening before). But he only complained a little and went on a satsuma hunt (all hidden) with a michievious smile on his face. The Famous Five kept us going (thanks Enid) as did Scooby Doo the Movie! I think the laptop is going to be very useful. We had quite a few visitors which helped pass the time, thank you Ruth, Maggie, Granny, Annie and Sarah.

So now Jesse has a feeding tube, he is still a bit sore and is walking gingerly, but in good spirits. I hope the tube will be useful when Jesse is feeling rough, it gives us peace of mind as we know we can easily get nutrition into him if we need to.

We are very aware there are only three days left before we go in, so we have lots to do...Our biggest worry at the moment is that we don't have anywhere to stay yet. Thank you to you all who have offered, but we really want somewhere within walking diatance. GOS only have 16 rooms for the whole of the hospital. One of us will be able to stay with Jesse, but the other will be with Bernie. If we don't have any luck we'll get a hotel...

Schedule

Jesse will be admitted to Great Ormond Street hospital on 14 January 2007 to have his PEG (a valve for feeding) inserted. He comes home on the 16 January for a few days. On 22 January he will be re-admitted, a day later his Hickman line (a central line into his chest) will be fitted and chemo begins on 24 January. A week later on 31 January the donor, a very kind 34 year old German man, will donate his bone marrow. "Day 0" is 1 February when Jesse will receive the infusion of the cells from the donated marrow. He is expected to spend another 5-7 weeks in hospital after this. When he comes home he will have a 6 month recovery period at home.