Day + Goodness Knows What but...Nevertheless a VERY IMPORTANT DAY INDEED!

WRITTEN IN THE EARLY HOURS OF FRIDAY 24 OCTOBER 2008

Dear Lovely and Faithful Bloggers,

I am so sorry I have been so rubbish at updating the Blog…it really isn’t much of an excuse but I really never seem to have a moment and of course the longer I leave it the more there is to say…you get the picture!

I am writing this at Great Ormond Street, bizarrely on Fox, the BMT transplant ward. It is 5.30am and I can’t sleep as I have come out in hives as an allergic reaction to the antibiotics I’m on for a nasty sinus infection (six weeks of cold that just wouldn’t go). I’ve decided to wait till 7am when the shops open rather than trawling through London in the middle of the night looking for an all night chemist or a supermarket that stocks non drowsy antihistamines…so here I am with that moment!

We are here for a very important reason. Yesterday afternoon Jesse had his lines out! He’s had his PEG (stomach access) for nearly two years and his portacath (iv access) a year. It sounds like a very positive thing but Jesse was extremely reluctant. “I like myself the way I am” “My PEG is a really good talking point at school” “I know they have to come out sometime but why now?” are some of his arguments. His teacher told me he swings it around in PE and says “It’s my willy!” We’ve done a lot of talking about it and Charlotte, the wonderful therapist at our local has given us loads of ideas, so Jesse had come round to it a bit more. He is hoping for some good scars; a third belly button (he’s got a dimple above his real one so that makes three) and perhaps, if he’s lucky, a third nipple.

He was an angel all the way here (I was expecting a struggle from the front door). He even carried all 20 of his dogs in by himself (they have doubled in number in a year)…BUT…when there was mention of a nose and throat swab it all changed. My feisty stubborn son flipped into action and it was downhill from there! I had to drag him down to theatre. Despite three people restraining him he managed to pull out the tube from the mask and it took two of us to prise off his fingers, but I asked them to keep going as I knew it had to be done and the longer we left it the worse it would get. He even stood up on the operating table with the mask on! But very quickly the anaesthetic kicked in and he was out. It was very, very, very distressing.

He came round grumpy but before long was sleeping peacefully. When he woke he was in a much better mood and settled down to watching James Bond in Dr No. I had anticipated trouble with regard to taking his medication (orally now without the trusty PEG). We have heard “I will never take any medicine by mouth” many times, so I had asked for a cannula to be left in. He was very cross about this…

So we explained it could come out if he took his medicines by mouth. He still has five doses daily of hydrocortisone and penicillin (both taste foul and bitter) . He flatly refused. I tried cajoling, bribing, mixing them with neat Ribena and even coke with no joy, so then I suggested the swallowing option. He claimed that would be easy as he can swallow two pieces of stuck together pasta in one go but that he would try in the morning as his throat was sore. I suggested trying to swallow his vitamin jelly and in seconds it was gone down his throat…He then proceeded to down a tablet of each of his drugs without even a drink. I was amazed and delighted! What a wonderful child! So, having polished off an enormous plate of spaghetti, a chocolate biscuit, a fruit leather and an apple, we settled down to our treat, the highly inappropriate but very funny “Shaun of the Dead”. “Hot Fuzz” is one of his favourite films, he’s watched it hundreds of times, so I’d guessed he might love it. I was right! He’s sleeping soundly and in the morning we are planning a trip to HMS Belfast and then home…


Here is briefish catch up with photos of the last six months

MAY 2008

Jesse Goes Back to School

It was traumatic process but in the end very successful. We had loads of support from his home tutors Steve and Jan as well as from the school, Balfour Infants. His teacher, Jenny and his “one to one support” Bea were fantastic. They were patient, inventive, caring and firm. He has dropped a year and that seems to work,. He is very comfortable with his class and his friends and as he is small he doesn’t look out of place. He started mornings at first and then after a few weeks he went full time (braving the hurdle of lunchtime, although I did have to make sushi for him every day until almost the end of term). He did get very tired sometimes. One day they had a non uniform day and were allowed to dress up. Jesse, of course insisted on being a Ninja in full black kit. He spent the whole morning dashing around doing his moves in the heat of mid summer and in the afternoon fell asleep on the carpet. Then he refused to walk one step so Derek had to be called to take him home by car…



JUNE 2008

Jesse finally meets Raven

But before I let know you about our amazing trip…

I never managed to get around to telling the story of our failed Raven jaunt in July 2007. In a nutshell what happened was…we were picked up by a stretch limo to be taken to Kent where Raven was doing a guest appearance at a school. The plan was to have a private meeting with him for half an hour or so and then have a picnic lunch of all of Jesse’s favourite foods and then home. Unfortunately Jesse was really quite unwell and brewing a serious episode of GVHD. He had been sick in the night and then sick as the limo drew up. So we left, armed with many sick bowls and tissues. After 15 minutes in the limo he was throwing up again… and again… and again... It soon became very clear that we couldn’t go on so we stopped at a service station in Kent and rang GOS for advice. They said call an ambulance and go to casualty for iv rehydration, so that’s what we did. He did settle after a while but was sick at least 13 times in a few hours. Poor Jesse, it was so sad, he was so ill he didn’t even care about seeing Raven anymore. I was gutted. It seemed so unfair. Raven very kindly even offered to come and visit us at A&E in Dartford but Jesse was too ill to see anyone. We were transferred back to Brighton and spent a night at the Alex…from then on you know the story…he went downhill slowly till he was in intensive care in November.

But that was last year, it is a very different story now and in a way it was good that we didn’t make it last year as in June Jesse had a very special couple of days!

Luckily Rays of Sunshine hadn’t forgotten about us and in May I got a call from Beverly, who had organized the last trip. She had kept in touch with Raven and was planning for Jesse to actually go on the set as they filmed Raven. So in mid June we set off to Gatwick Airport (no limo just a taxi) bound for Inverness. Jesse was kitted out in new clothes and shoes, topped off with a fab haircut, all thanks to Rays of Sunshine. Our flight was fine we were met at the airport by another taxi and were driven through the Highlands to Aviemore. We had a lovely room with tartan blankets and in the evening we were treated to a gourmet meal. We dressed in our best clothes and Jesse ate like a (very polite) horse! He loved the piano that played without a pianist and the whole atmosphere.



We slept well and were up early for a feast of a breakfast, then were taken outside to a red carpet which led...
to a silver stretch limousine...

with a chauffeur!

The windows were smoked so we could see everyone staring at us! Jesse loved it!

Its hard to describe, the rest of the day was so wonderful it had a dreamlike quality. We were driven to the set where the film crew were filming Raven. We were met by the man himself, who was so kind and attentive to Jesse the whole morning. Jesse had a tour of all the challenges, met the Warriors (who were charming), operated the clapperboard and even went into the sound van where he had a whale of a time. At the end Jesse was even allowed to have a go at the Way of the Warrior and (with a little help from Raven) he managed to complete it. He was made to feel special and included for every second! Here are a few photos of our extraordinary day, one we will never forget. I'll let the pictures of the rest of the talking...


Jesse and Raven


Jesse beating the Demons


Jesse with some other Warriors


Raven and the Sound Man

A very big thank you to Rays of Sunshine, Jen Warner, Beverly Cummin, Raven and the BBC...you made a little boy very happy indeed!

JULY 2008

Bad News

So it was back to earth with a bump! Jesse back to school, me back to work. Jesse was booked in for his lines to come out on 24 July, the first day of the summer holidays, but I needed to be sure that his immune system would be strong enough so we could drop some of his daily medicines, particularly his steroids. We had been waiting since March for a test to see if his adrenal gland was still working after 18 months of steroids. Jesse finally had this test in early July and we were devastated to hear that his adrenal gland had "gone to sleep". This means another 6-18 months of steroid (this time hydrocortisone) replacement. He needs three doses a day which have to be doubled or tripled if he is ill. So I had to cancel the line removal as his daily medicines had just gone up to 12! A few days later we heard that his CD4 count had reached 600 (this is a test that measure levels of subsets of lymphocytes and is an indicator of immune reconstitution-it had always been around 120...300 was the level they were aiming for). This meant that he was well over target and almost all drugs could finish, one of his antibiotics, the anti fungal drug, the anti viral one and then we started to wean him off the steroids...I know this all sounds like gobbledy gook but it makes a lot of sense to us and in a nutshell meant that Jesse was almost better! Frustratingly it also meant he could have had his lines out but by this time it was too late as all the theatre dates were booked up over August and I didn't want him to miss any school...


AUGUST 2008

Holidays at Greatham

We spent over two weeks at Greatham in August. The weather for the most part was terrible but Jesse had a great time. Here are some photos...


Jesse learning to swim (it only took him a few days)!


At Greatham Church


Practising Archery


Jesse and Bernie (can you see the family resemblence?)


Jesse with a horse...


Jesse riding!


Jesse working on his entry to the Rackham Fete (he won 3rd Prize)!


Albie and Jesse going down the slide at the Rackham Fete

SEPTEMBER 2008

Starting Junior School

This was another hurdle/milestone for us to cross. In the end it has gone very well. Again the school had been fantastic, his teacher Mrs Middleton has Jesse in stitches with her jokes and Jackie Lothian, Jesse's one to one, is great. She adores Jesse and luckily they get on very well. He gets very tired and we are looking forward to half term but all in all Jesse has a pretty good time!


Jesse's first day as a Junior school boy!


A close up (check out those front teeth)!

OCTOBER 2008

Stonehenge and Lines Out!


We went on a trip to Stonehenge one sunny Sunday this October


I think it is fitting to end with a photo that Jesse took himself!

After over three years we have almost come full circle. The lines are out and Jesse is healthy. We are all so delighted and so relieved. We know we are very, very lucky. We are eternally grateful to our anonymous donor and to all those at GOS who worked so hard to give us out little boy back (the same as before but older, wiser and with a wonderful healthy glow) as we are to all the friends and family who have been such a support.

So that’s it, we’re back to where we were. I think this blog has now served its purpose (I must say it has been a wonderful method of keeping lines of communication open with all if you and great therapy for me). So from all of us in sunny Brighton it is

OVER

and OUT!

(phew) x

Day +443 (phew I think we’ll have to stop counting and maybe just call it Day+a lot!)

To all you faithful blog readers out there a big apology from a very useless blogger! I've been rubbish in keeping things up to date, mainly because everyday life is so busy I never have a moment and there is so much to say I can’t even start as I know I’d never finish. But, guess what, I’m on holiday for 4 days and I’ve found a moment so here goes with the most important things first…

Jesse is 8! His birthday was on Sunday 13 April, we spent it in Greatham with Chloe and had a lovely if dramatic day (there was a lightening strike and the power was off for a couple of hours). He had wanted money, armour, a jelly mould and military surprises. He got some money, no armour (it’s too expensive so that’s what the money is for), three olden days jelly moulds and loads of military surprises, including many camo goodies, an ammunition case and a medal. He wouldn’t let us sing Happy Birthday (he hates singing), blew out all his candles and tucked into an enormous slice of Scooby Doo cake. I wasn’t worrying about his appetite that day! Here are some photos…

Opening a mountain of presents...

Scooby cake with angel candles!

No singing "Happy Birthday"

Jesse nearly ate all of this slice, unbelievable!


Generally Jesse is fine…he has loads of energy, is mostly happy, hasn’t had diarrhoea since the end of January and can eat anything he wants (the only slight problem is that his appetite is erratic and he is a very faddy eater but he’s gaining weight slowly so I try not to worry).


We slowly weaned Jesse off cyclosporine (one of the two immunosuppressants that he was on) in the hope that his immunity would increase but his lymphocyte count still isn’t very good. As a result he needs up to 12 meds a day still and iv immunoglobulins every three weeks. We were hoping that all this could be stopped and he was booked in to have his Peg and Portacath out at GOS on 31 March but his CD4 level came in at 125 (it needs to be 300 to stop everything). It felt like a big disappointment as normality beckoned, but we’re over it now. So the lines stay in for now but with any luck should be out at the end of July. This is because…


Jesse is going back to school! On 21 April Jesse will be joining a wonderful Year 2 class at Balfour Infants School. At first it will only be mornings but we hope to increase it to full time as soon as he is ready. It has been a long and difficult battle getting him used to the idea but over the last few weeks of the spring term Jesse has been going into school with his tutors (who have been fantastic) and acclimatizing to school life. We have had a few tantrums but overall it has been very positive…on the last day of term he was “Star of the Day” and led the class into assembly. We struggled with the idea of keeping him down a year but think we have made the right decision; he feels very comfortable with his new class and says he has lots of friends already! He will have help through the day with a dedicated Teaching Assistant, so I think he’ll be well supported.

I think those are the most important points, everyday we realize how lucky we are to have him with us still. It is wonderful to see him grow in strength daily. Everything else pretty much ticks on too. All the other kids are fine (except Bernie who came down with chickenpox yesterday)…the shop is busy,Derek and I are fine too (if a little exhausted by everything). I will try and write a blog the week Jesse goes back to school with some pics of him in school uniform. In the meantime here are a few recent photos that can probably tell a better story than any words. We are very grateful, especially to that very kind and brave man in Germany who was Jesse’s donor, we can’t thank him enough!
lots of love
Claudia
x

Jesse enjoying the snow!

With a snowball

Throwing it!

Bernie at the window...it's the first time he's seen snow!

Jesse doing archery at Greatham with Derek and Sally.

Jesse the ninja, thank you Ruth for a wicked birthday present!

Jesse on the slide at Greatham in full camo as usual!

Day +342 Belated Happy Christmas and New Year!

Here is Jesse on Boxing Day, wearing his Christmas helmet with face camo too! I will write more soon...

Day +300

All is still fine. Jesse has settled back home and is getting stronger every day. He is very happy, he wears his medals every day and has made a museum of fossils and old coins! He is eating well considering his limited choice and pooing fairly well. He has done some proper ones but we mainly get poos strangely reminiscent of a mild korma! Levels are OK and there's been no blood, so we'll try not to worry too much and keep our fingers crossed. His blood counts are fine again too, although we are still waiting for the lymphocytes to return. School in January is now out, so we'll have to aim for after half term or more likely after Easter.
We went to GOS for clinic yesterday; they were pleased with him. If he stays well we won't have to go back till after Christmas. Talking of which, the shop is very busy, but we are managing. I hope you are all well and getting ready, keep in touch and keep sending us positive thoughts,
lots of love
Claudia

Day +293 We made it home!

We came home on Sunday, it was wonderful if hectic! I have so much to catch up on that I won't write unless anything happens, so please assume all is well unless you hear otherwise...thank you all so much,
love
c
x

Day +289

Yes, we're coming home on Sunday if all goes well. Jesse managed to top the scales at 18kg precisely this morning, this afternoon he had 15 dough balls! So the doctors had to let us go. Meds are all oral and TPN is off so they can check he can maintain his blood sugars and electrolytes. Both he and I have been quite grumpy today, I think that's just because we need to go home. It feels a bit daft staying here, but never mind. I don't feel we can complain, the children on this ward are so ill and at least we are getting out of here. I have been so touched by the beautiful children who have so much to put with, little Ella only 4 months old diagnosed with leukaemia last week, Gus, 4, Bethany, 3, and Kenzie only 4 weeks old, all very ill. The nurses are so lovely here, it has been inspirational to watch their dedication, care and love in action. It must be a tough job but they all say they wouldn't do anything else, although they also admit that it can be very tough and that recently they have had a lot of bad news about the kids they work with. You wouldn't know it though, there is so much laughter and joy all day and night long. I am so glad we ended up here! We can't thank them enough.

I may not write again for a bit, especially as all is well, because I have loads to catch up on at the shop and home. The shop has been very busy over the past couple of weeks; luckily Sara, Joanne, Susannah and Emily are built of tough stuff. They have been brilliant; covering for me as necessary and dealing with loads of stuff every day. I can't thank them enough. I think they are brilliant! And Lily has been in most days this week and has been a great help! Thank you so much to all of them!
Must go now as its late,
love
c
xxxxxxxxxxxxxxxxxxxxxxxxx

Day +287

Sorry not to have updated yesterday...it all got too hectic. Jesse is fine now but had a difficult time. The echo cardiogram showed that the fluid around his heart had almost completely gone and the left ventricle and valve were almost back to normal. So they went ahead with the general anaesthetic and put his new line in. As usual Jesse was a star, he was very relaxed in theatre. He said he didn't mind whether they used his line or a mask to put him to sleep, "you choose!" he said. They said he was the best behaved patient they'd had all week. He happily held the mask and gently went to sleep. I was told it would take 45mins to an hour and a half, but in the end he was gone for two and a half hours. I don't know why it took so long, but I do know that last hour seemed to last ages! We brought him back to the ward asleep, but when he woke soon after he was in terrible pain. Poor little thing cried loudly and solidly for one hour, after 20mins I asked for codeine but it took 40 mins to kick in. He slept for an hour and woke up much better. He didn't talk for a few hours but perked up little by little through the evening. He is ok now, if a bit sore and tender, but it is a relief to have the line in his groin out and the Port-a-cath in.

Today they have moved all Jesse's meds to oral so he has been iv free all day, quite a treat! He'll have TPN each night for the next few days and then I hope we can come home. I am having a bit if a battle at the moment. The dietitian came last night, suggesting that she wanted Jesse to be 18kg before allowing him to be off TPN or his overnight milk feed (which we stopped 7 weeks ago). I argued that I knew he would be fine without the milk feed and that he would be able to gain weight rapidly at home and without TPN. Of course the doctor came this morning with exactly the same story...Jesse last weighed in on Monday at 16.9kg, and I knew he had put on weight because I know him well and could see it, so rather than argue too much I asked the nurse to put Jesse on the scales. When the nurse announced "17.8kg", the doctor stood up to check in disbelief! The nurse gently told him that she could read! So now they haven't got a leg to stand on. After the 13 dough balls Jesse had this afternoon, the two bowls of shreddies, one of rice krispies and the two giant potions of couscous and the two pears he wolfed down today I am pretty certain he will have put on the required 200g to be allowed home... and he still hasn't had supper yet. His poo levels are low and today he had a perfectly formed motion and no blood. We were delighted! Jesse had another abdominal x-ray today to check there is no sign of pneumatosis, frustratingly we have to wait till tomorrow for the results to be checked by a radiographer but I think it will be clear. If its not I'll think again, reduce Jesse's food intake/stop it altogether and go back the Brighton Hospital for TPN. Fingers crossed that doesn't have to happen. I have lots of funny stories to tell you of Jesse and shirts, medals and ties but I'll save that for another day. The wonderful Tim is visiting again, and he'll be here any minute so I'll sign off now. As I write Jesse is preparing his business plan for his mineral and gemstone business. More details later. As ever thank you so much for your support and love and positive thoughts,
lots of love
Claudia and Jesse
xxxxxxxxxxxxx
PS we can't wait to get home, I've only seen Bernie once in over two weeks. Derek has been doing a wonderful job at home with the help of Lily, Albie and Stan, so I know he is happy, but I miss him and everyone else all so much...

Day +285

Hello everyone,
As you have gathered things are improving rapidly, which always makes everything more hectic. I am going to do a brief medical round up as it is late and we have to be up early tomorrow. Yesterday a chest x-ray showed that Jesse's lungs were virtually normal. The fluid had gone and the right lung was much clearer. By listening the doctors can hear that it is now inflating. Jesse is eating loads, his poo levels are fine, there is no blood and now the antibiotics are being stopped the poo is firming!

Tomorrow morning Jesse is on the list for a Port-a-cath, this is another kind of central line to replace the Hickman line that became infected. The advantage of this line is that it doesn't need dressing, can be accessed easily and has less risk of infection. The disadvantage is that there is only single access (ie if he needs more than one iv treatment at a time he'll need a cannula too) as opposed to the double Hickman line. Before he goes to theatre, in order to check he's up to a general anaesthetic, he's having another echo done to check that his heart has recovered as well as his lungs. So we have a busy morning...

If all goes well we may be home on Friday or the latest Monday. The next hurdles are getting him off TPN, getting him eating enough and switching over all his meds to oral rather than IV.

I'll try to write tomorrow, keep all crossed for us,
love
c
x

Day +283

Hello all,

Well I now have Internet access (thank you Derek and thank you Carl Taylor so much), at the same time I have a rather well boy who needs to be kept busy all the time. I'm not complaining...it is wonderful that Jesse is so well so quickly but it does explain why I have been slow in keeping the blog up to date...I wouldn't want it any other way! Red Ruth visited on Saturday and again this morning; it was lovely to see her. She said she was so happy to be visiting again and that it was wonderful to see Jesse so well, so himself and so happy. And I agree...it is wonderful. To think how ill he was a week ago the recovery he has made is virtually miraculous! I used to think Jesse was very fragile but now I'm pretty certain he is tough as old boots!

As of Friday he had fluid round his lungs, a compressed lower right lung, fluid around his stomach, fluid around his heart, an enlarged ventricle in his heart and a leaky heart valve. All this is very alarming until you understand his circulatory system was pumped with over 2.7 litres of water in one evening 10 days ago in order to save his life and stabilise his blood pressure. The good news is that he is breathing fine on his own and the cardiologists did loads of tests on Friday that suggest this is a temporary state. Jesse will have another chest x-ray on Monday and a heart echo when we leave. I am not too worried about any of this...

We are in limbo at the moment, Jesse desperately needs a new central line. We have opted for a portacath rather than a Hickman line as if it isn't used too much there is no dressing. It is the dressing change that Jesse finds the hardest. The downside is that it only gives single access so if he needs lots of IV treatment he will have to have a cannula. I found out on Friday that the waiting list for this is two weeks; he's been put down as an urgent case but we have no date as yet. I will do all I can tomorrow to push it forward asap. He has to be infection free for two days past finishing antibiotics (on Monday) so Wednesday is the earliest...but they may want 48 hours to do cultures. As we are talking into next week I'll push to go back to the Brighton Hospital until they are ready for us here. I'll keep you posted on our progress.

Jesse is now eating, he still has diarrhoea but only small amounts and no blood. We do have a big problem though, I have been trying to keep him wheat free but all the w/f pasta and rice I have given to the kitchen here comes up massacred so Jesse turns his nose up at it. He has eaten a lot of Rice Krispies and recently I have been rather inventive (albeit at the price of the wheat free option) so I have perfected couscous made with a kettle, cooked gnocchi in the microwave, pitta in the toaster and noodles in a cup...all of which have been well received.

Must go as I'm v tired and am falling asleep...love you all loads xxxxxxxxxxxxxxx

Day +282

Just to let everyone know that Jesse is doing really well. Lily is back in Brighton so Claudia can't really leave the hospital to update the blog. Jesse has started to eat small amounts of food now. I am going up to visit with Bernie today and should be able to sort Claudia out with internet access so look out for more updates soon.

Bye for now.

Derek

Day +280

Here is our brave soldier wearing his purple heart medal, which Tim awarded to him for valour. More tomorrow,

love C x

Day +279

I will have to be very quick (I know I always say it but this time I mean it) because I have escaped to Tutti's for a decaf cappuccino and a blog update. Lily is holding the fort and told me not to do the blog as I'll be gone for ages...Thank you thank you thank you for all the wood touching. I think it may have worked but please keep doing it, we're not out of the woods yet (pun intended). But Jesse is great today, he slept all night again and this morning has been off oxygen for well over two hours. He is chatty, funny and full of beans, in fact our lovely Jesse is back with us. He's been out in the wheelchair and even done some walking. He is asleep now as he's worn himself out.

Yesterday we did some card making in the evening. Lily was puzzling out how to use the sticker maker Ruth had given us, Jesse piped up load and clear "Hand it over here Lily, you know I'm very clever so I can work it out!" From that moment we haven't looked back. He made loads of cards, one of them he made with dogs in the shape of a cross and said it was a dogligious card (instead of religious). He then told us all about how the Egyptians used to mummify everyone including the slaves.

Thank you for your posts, I've downloaded them and will take them back to him. He loves hearing from you all as do I.
love
c
x
PS The dogs are behaving themselves, they haven't left his side through all this and have been brilliant and supporting arms, necks, ventilators etc. Jesse has three new dogs who have settled in well; Spot the Dalmatian (he's rather large), Lucky the puppy and of course Baggins the Basset Hound (who unfortunately has spent a lot of time sniffing Jesse's feet)

Day +278

Just a quickie. Things are looking a lot brighter, but before I say anything else, I'm going to touch wood, and maybe you should too! Last time I said you could breathe a sigh of relief I was very wrong, so I am very wary of speaking too soon...

Jesse slept well last night, so I did too. He woke at 8am and surprised the nurse telling her that she couldn’t take him to the loo. She hadn’t heard his voice up till then so was very pleased. This morning he sat up and played Battlefield 1942 for half an hour. Then he slept for ages but woke up feeling better, when I asked what he wanted to go he said he wanted to go to the park! We managed to persuade him that he may have to work up to that! So the physios came and we took him for a wheel around the ward in the wheelchair, which he loved. He was able to manage 5 minutes without oxygen if he concentrated on breathing.

While we were doing this we bumped into Lynne, Dave and Rhianna who were at clinic on Elephant day care (our friends from Brighton)! They didn’t know what had happened, so were surprised to see us. So they came and visited us in our room, it was lovely to see them! When they left Jesse fell into a deep sleep from which he woke about half an hour ago. He was so gone he had a chest X-ray and didn’t wake! As I write he is chatting away with Lily, reading magazines and making cards. He is laughing and making jokes. It is wonderful to have him back, I am delighted! Must go as the cafe with wifi will close soon,
Love
C
X
PS The ultrasound this afternoon showed that the fluid around the right lung is marginally increased, so the plan is that they will repeat the scan in 48hrs if he continues to improve clinically. If he deteriorates then they will but a tap into his chest to drain the fluid. So please keep fingers, toes, arms, legs and even hair crossed!

Day +277

Sorry not have updated earlier, I haven’t been able to leave the room. We are now on Lion Ward. Jesse was a lot better on Saturday, still very sleepy, puffy and weak though. Derek and Bernie (the lift loonie) were around for most of the afternoon and Tim visited. Lily has stayed and has been a wonderful support. We decided it was best that Derek went home to Brighton as Bernie has been such a handful. As ever the Gibbs have been brilliant, putting them up at a moments notice and making them feel welcome but Bernie has been disturbed by all the upheaval and was persona non grata when he decided to go walk about at 3am. He woke up the whole house! Derek found it really hard to leave but he knew it was the only option...

The nurses on this ward are really lovely but I began to get very fed up that Jesse’s notes are clearly wrong. The general impression they give is that he has just had a bone marrow transplant and that he has GVHD, whereas we have been home for five months and he has pneumatosis caused by the steroids that have settled the GVHD!

Jesse’s heart rate was really low and everyone seemed very worried, at first it was in the 40s and then it dropped to the 30s and then started hitting 29. The doctors suggested that it may be caused by the steroids, but they weren’t going to reduce them. There are many reasons I am concerned about steroids; most importantly they reduce immunity to infection and thin the skin (which has caused the pnuematosis). I had been told he was on 34mg of hydrocortisone (steroid) and was concerned this was too high...but distraught when I found that this was being given to him four times a day. I had thought this was his daily dose! I only realised late on Saturday night but I kicked up a stink and they agreed to halve the dose and revert to his original dose by Monday. A few hours later his heart rate started to climb and now it is very healthy at around 100bpm!

I had an exhausting night, Jesse was awake lots. He was carrying too much fluid so they gave him an emetic at 2.30am and he peed all night long. He is so weak and has so many IVs going it takes two to take him to the commode, so I got very little sleep. He had loads of tummy cramps (perhaps caused by all the antibiotics). He started to need oxygen through the night as his oxygen saturation levels (sats) were low. To add insult to injury he then had an allergic reaction to Buscopan, a drug the lovely nurse had suggested may help with the tummy pains, so it was more Piriton and then codeine...By the morning he was on oxygen all the time as he is now. The doctor checked his lungs and could hear the right one wasn’t inflating properly. So we were sent down to X-ray (the poor little boy was so ill he was gagging in the lift). It showed fluid on his right lung, which is due to an infection. They aren’t sure if it is in the lung or around the lung so he’ll have an ultrasound later and maybe they’ll have to draw some fluid off so they can culture it. I don’t know exactly what is involved. They have added another antibiotic to the other three and may have to add an antifungal drug too just in case. Also Jesse’s potassium levels are low so he is on his fourth infusion. He is weeing loads (18 times in 12 hours). They think the kidneys aren’t working too well and so are leaking electrolytes. The trouble is that he has lost his Hickman line and the other lines keep failing, so his TPN has to come off when there is something more important.

I’m waiting to see the BMT consultants for more plans. I’ll try and keep updated more regularly but it is hard as I don’t want to leave the room and there is no internet access. Lily has to go round the corner to post this...thanks again for all the messages and positive thoughts,
Love
C
x

Day +275

Things are much more stable than yesterday, so everyone...you can breathe a sigh of relief! They took the ventilator out yesterday afternoon, it was pretty horrible so he woke up and whispered a few words. So Jesse is breathing well on his own and has been sleeping most of the night. He is quite puffy, but much less than yesterday. This is because they had to give him so much fluid to bring his blood pressure up while he was critical. The only issue we have now is that his heart is beating very slowly (in the mid 40s per minute). They don’t know why this is but have done an ECG and say it’s fine, also his blood pressure in a bit high 120/90. Two days ago his heart rate was 140bpm and bp was 46/23, quite a difference! Last night they started him back on TPN, which should make him feel stronger, he has had no nutrition for 2 days...

Lily arrived yesterday; it is so good to see her. We went out last night to a local Indian restaurant (Jesse was sleeping and the nurse promised she’d ring the moment he woke). Just as we were finishing she did ring, so went to see him for a bit until he slept again. We both had a good nights sleep. We woke at 6.30 and are in to see Jesse who has been very weepy this morning. His line in his groin is bothering him and his eyes are so swollen he can hardly open them. I imagine he feels like he’s been kicked by a donkey! We were going to be sent back to Fox ward for the weekend but it is closed as there is a virus on the ward so he spent another night in PICU (Peadiatric Intensive Care Unit) and have been told that we will be sent to Lion ward by 10am. This is a small oncology ward upstairs, at least I’ll be able to sleep with him which will make life a bit easier and there is a parent’s kitchen etc.

So all is pretty good. The next issues will be getting him infection free and sorting out another line. I don’t know how they’ll manage this, we’ll have to wait and see. They may want to send us back to The Alex in the meantime. I don’t think we’ll know till Monday.

As ever Red Ruth has been a star or should I say a fantastic social secretary and wonderful friend and support. And thank you again to all of you...
I have written this on Lily’s computer and she’s taking it to the cafe that has a wireless network to post the blog. Keep in touch,
Love
C
x

Day +274

Must be quick as I have to get back for the end of ward round at 9.30am (parents are not allowed while it is going on). As Darius said they cultured gram positive coccae off one of the lumen and something not specified as yet off the other lumen so it is likely to be a line infection...probably caused by all the usage due to the TPN last week. So they took the line out last night, they had to paralyse him again but he is back breathing mainly by himself now with a bit of help from the ventilator. They are going down on the morphine so Jesse may start to come round today but his kidneys arent functioning properly so it may take more time for them to break down the drugs in his system. As ever it is a waiting game. He looks ok but is pretty puffy today. They had to give him more fluids last night as his blood pressure dropped again...
They keep talking about septic shock, so guess that's what happened to him. There are many knock ons to this, leaky blood vessels, falling counts etc so he isn't out of the woods yet. I'll keep you posted as I can. Thank you so much for all your posts, texts, calls and offers of help (Jane and Miles, I can't believe you still check the blog! By the way, if anyone needs a fantastic solicitor please let me know and I'll pass on Jane's details!)
Must go now, but quickly other news. Lily arrives from New Zealand this morning, John is very kindly picking her up from Heathrow, I cant wait to see her. Albie is being a fantastic support keeping everything going in Brighton, keeping the house ship shape, making sure Stan is ok and supervising the intallation of our new boiler which is being fitted as I write (I hope). Stan is being great too. Finally an enormous thank you to the lovely Hughes sisters, Sara and Joanne who have kept the shop going seamlessly and been so supportive and flexible. I can't thank them enough, they have taken a big load off my mind.
Must go now, keep thinking positive thoughts,
love
cx

Day +273

Jesse's condition worsened at about 5.00pm last night. His blood pressure dropped dramatically and he was taken to intensive care. They managed to stabilise him and he was taken to Great Ormond Street intensive care unit late last night. He is sedated at the moment and being ventilated. They suspect he has Sepsis possibly caused by a line infection (Hickman line). Claudia travelled with him last night in a special intensive care ambulance (the ambulance team were amazing). I drove down with Bernie, settled him at Rick & Maggie's and got to see Jesse for a little while. Claudia has just let me know that they have been able to reduce the drugs that they were giving him last night and he may be off the ventilator this afternoon. I will update whenever I can.

Derek

UPDATE 1.40PM...
The doctors are much happier with Jesse this morning. He has responded well to treatment and they are thinking of waking him up this afternoon and taking him off the ventilator. Lily is coming home, she'll be back tomorrow morning. Everyone is being wonderful, especially Maggie et al and Red Ruth. The plan is to wait for the cultures to see what the infection is and make sure they are covering it with the right antibiotics. They suspect a gram negative sepsis but now think it more likely to be from his gut than the line as he has improved so quickly. We'll go back now and see how he's doing. I'll try to keep the blog updated as much as poss.
love
c
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Day +272

At first they thought it was an ear infection so they put Jessse on Augmentin (iv antibiotic) but at 5am Jesse was sick and his temperature soared to 40.7. They can't get his temp down and so are treating him as if it is a line infection, he is now on Gentamicin and Tazacin too. I have just got Bernie to the childminders so am going into hospital now...please keep your fingers crossed,
love
x
c

Day +271

All was going swimmingly till this evening at around 8pm...We were let out at 4.30 and headed home for four hours. Jesse was having fun, playing on the computer, shouting with B and then watching TV. All of a sudden he complained of being cold, I took his temp, it was 37.9 so we took him back to hospital early. Derek had to be carry him in and he was asleep by the time he was in his his room. I am at home with Bernie (fully recovered) and worried sick. We are waiting for news...
c
x

Day +271

Just a quickie update...
All is ok but we had diificult night tonight because we had a couple of hours off and were invited to Katie Taylor's fireworks do..J was off between 6 and 8pm...just perfect we thought. He had a great time during the fireworks and Bernie did amazingly, he stayed outside through all the bangs (which none of my other four managed at his age). He clutched me tight but enjoyed it too. When all was finished we retired to the conservatory where all the food was but Jesse had a terrible time...there were 10 french sticks, loads of chocolate and crisps lying all around; the torture was palpable. I don't know how we will manage the next week as he is allowed to be at home but it may be very difficult when he is around food...good news is that Bernie is much better.
keep in touch
love
c
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Day +272

Hi to all the faithful...
Well things got worse but are better now. Thank you for all your calls, emails and posts. Jesse is in the Alex (Brighton), the swanky new childrens' hospital. It is Very Swanky but you still cant get anything to eat after 7pm except crisps, chocolate and cuppa soup. Of course that's the least of Jess's worries as he isn't eating anything or having a milk feed or even drinking, BUT he is much happier as the TPN and drip means he doesn't feel too hungry at all. He gets bored but we have computer, books, DVDs, games and of course jigsaws (he's almost finished a 1000 piece one already)!

It got worse because the night I wrote the last blog Bernie decided it would be a good time to get really bad croup! So Derek and I were up all night and poor Bernie had a horrible time barking like a dog and gasping for air. We were wrecked in the morning and then terrified because I read on NHS direct about how croup is a virus sometimes caused by para influenza (which could be deadly for Jesse) and that the second night is worse than the first. So I rushed him in to see the GP, who advised us to give him a large dose of steroids to reduce the inflammation in the airways and keep going with the inhaler (Bernie has asthmatic tendencies so it makes it worse for him) and then rushed back to get Jesse into hospital. We hung around all day and in the end came home for a couple of hours as they couldn't organize the TPN until after 6pm. So poor Jesse had to another day of not eating, he really was struggling, especially when they told they didn't want him to drink either! Anyway, he made it and when the TPN went up the difference was noticeable. Since then he has been fine.

Bernie was better the next night too and seemed much improved in the morning so I sent him to nursery. But I felt terrible when I picked him up, he looked really pale and couldn't stop coughing. He cried for over 2 hours last night and finally went to sleep when I took him on a sleep drive. We have kept him off school today. Derek isn't taking on any jobs at the moment and luckily we have Hayley who can stay with Jesse in the day. I managed to work all day yesterday and am at home now sorting out papers to send to my book keeper (I hate VAT). Bernie is still coughing constantly, so we are taking him to the GP again this afternoon in case he needs nebulizing, at least he is happier than yesterday.

We still don't know how long they want Jesse in for, it may be 3-4 weeks. We are planning to concentrate the TPN so that he can be hooked up for less hours (at the moment it is 24 hours, in a couple of days he goes down to 22, then 19, then 14 and we hope soon it will only be 12 hours a day. It is possible we can do the TPN at home but I think it will need funding sorting out and we'll need intensive training so we have to weigh up whether it is worth doing or whether we should just be happy to have him in hospital overnight every day. We are doing alternate nights now, and it's working quite well but it will get exhausting...I'm not sure yet what to do, but I'll keep you posted...anyway must go as I've masses to do. Keep in touch,
loads of love
c
x
love to you all

Day +269

Hi Guys, things aren't too good here. Jesse hasn't been winning the pneumatosis battle, it has steadily been clearer that his bowel is in a bad way. The lovely, Joanne, Sara, Emily, Josie and Danny came over on Sunday afternoon for a cheese fondue and Jesse had a brilliant time playing hide and seek with Josie but at around 8pm he did a poo that was basically blood water. At that moment we knew we were losing so I suggested trying nil by mouth for 48 hours, Jesse agreed. 48 hours were up at 4pm today, he found today difficult but never complained. I don't know how he managed it...but this evening after breaking his fast with a small amount of boiled rice and rice Krispies, he did a large loose poo, full of blood. At this point we knew we were beaten. I rang the local hospital (the Alex) this morning to tell them of our situation. We knew it was very likely we would have to go in for a course of IV feeding (TPN) but were hoping that we could be in for 16 hours overnight and out and off TPN for 8 hours. No such chance, he will have to be in for 24 hours a day for at least 7 days and then we can be on a less strict regime. It may be that he can come home for a bit or full time then...I'll keep you posted. So we are going in tomorrow, wish us luck,
lots of love
Claudia
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Day +260

Sorry to have been so bad at blogging recently. We have been busy (so what’s new?) and there just never seems to be a moment. I woke up early this morning so I thought I would sneak downstairs for a quiet hour at the computer without interruption…so here goes…

Jesse did really well with eating not pooing too much. In fact for three weeks it looked like we had finally won the battle of the bum! He maintained his appetite and we have been able to keep him off the feed. His weight has stayed stable and so it all looked like it was going really well until just over two weeks ago...

In clinic they noticed that Jesse's EBV levels were rising. In March Jesse had an activation of Epstein Barr Virus, a common virus that lives in lots of people's blood which can cause glandular fever but at low levels is only dangerous to people which damaged immune systems. The virus attaches itself to the B cells and the danger is that it will cluster in the lymph system and cause lymphomas. The doctors' answer to EBV is to kill all the B cells and with it goes the EBV. So in March Jesse has a course of Rituximab, but 6 months later the B cells started to regenerate and with them the EBV. I had no idea this was even a possibilty so was pretty gutted. So three weeks ago Jesse started another course of Rituximab. It means a day in hospital every week for a month for an IV infusion. It also means that Jesse will need another 6 months of immunoglobulins (a day in hospital every three weeks) in order to keep up his immunity. This is over and above the time he already would have had so I reckon that could mean another year of immunoglobulins!

So, nearly three weeks ago Derek took Jesse in for the first dose and within minutes Jesse had a violent reaction. He vomited and had diarrhoea and went very pink all over. This was in spite of IV antihistamines. The stopped the infusion, waited for him to settle, then gave him IV steroids and started up the infusion at half the rate. Within an hour Jesse perked up and was asking for chips. But...since then the diarrhoea returned. Levels built daily and eventually last week and X ray showed significant amounts of air in his bowel, the pneumatosis had returned. Up till then we couldn't be sure if it was pneumatosis or GVHD as we had dropped the steroids on the same day. So to cut a very long story short Jesse went back to a bland diet last weekend with the threat of nil by mouth on Monday.

Luckily it worked (touch wood), and poo levels have dropped and solidity returned! Jesse looks fantastic and is full of beans and very happy. He doesn't mind the bland diet. He lives off crumpets with marmite, baked potato, pasta and mash. I let him have little tastes of other things and that keeps him happy. Paul Veys wants him to continue the bland diet for a month so please all of you faithful, keep your fingers crossed as we have been told the pneumatosis/GVHD cycle can be very hard to break. We try to take every day at a time and not to worry too much.

I would love Jesse to be off the steroids completely as he has what the doctors call "poor immune reconstitution". Until his T cells come back we will still be stuck in the limbo land of isolation, which is much harder to deal with in the winter. I really want him to go back to school, which I know he will find hard but I think will be really good for him emotionally and socially (never mind the educational benefits)!

So that's our news. Everything else is OK, I miss Lily so badly, she'll be back from New Zealand at the end of November. The shop is quiet but will get busy soon. Derek has lots of work, the house is lovely (now the scaffolding is down)and the other boys are great. Please keep in touch, sorry not to have replied to emails, I will catch up soon. I'll post a photo of Jesse soon so you can see how great he looks!
lots of love
c
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As promised, here are some photos we took today by West Pier. It was a glorious day. The boys had great fun throwing and kicking stones and Jesse buried his foot and then his legs!

Stefan

In the early hours of Saturday 13 October our beautiful friend Stefan passed away in a Dublin hospital. He was 16 years old. We will never forget him. Stefan touched everyone he met. He had his bone marrow transplant 6 weeks after Jesse and at first did really well. It was hard for Stefan and his mum, Caroline, as they were far away from their friends and family in Ireland but they always had time for a laugh and a joke. They endured 7 long months on Robin ward, battling at first with CMV and then adenovirus. I spent many hours in the tiny parent’s room on Fox/Robin ward with Caroline sharing a bottle of wine. We got to know each other well and found out about each others lives and families. Caroline was a great strength to me in my darkest days in Great Ormond Street, her irreverent humour had me in stitches.

Stefan had been ill for four years with Common Variable Immunodeficiency, but still managed to get to school when he could. He was a bright boy and had a way with the girls. He was very popular, his friends adored him. He was very kind to Jesse. When we left GOS, we always would go back to visit them on clinic days. Stefan was so sweet with Jesse, he would chat with him for hours, I have no idea what they talked about! One day in July Caroline and Stefan looked after Jesse while I went to a forum meeting at GOS. They took him back to their room at the Russell Hotel (paid for by the Irish government) and Stefan and Jesse had a pillow fight. Jess had a great time!

Stefan just couldn't beat adenovirus; so GOS gave him T cells from his dad, Mitko. From then on one thing after another went wrong, he developed GVHD in August, then his marrow just stopped working and his counts plummeted. In September the doctors sent him home, he was very homesick. I think they hope it would give him the boost he needed. But within days he was in intensive care, he had a blood infection then pneumonia...

We still can't take it in and will never forget him. Jesse is very sad. Stefan's face was so beautiful; when he smiled it was like a light shining. Caroline and Mitko fought so hard for him, they are heartbroken. They have wonderful friends and neighbours, whom I met at Stefan's funeral, so I know they will be well looked after, but it is very hard for them.

Stefan's funeral was amazing. I went with Tamara, mother of Dylan, who passed on in July. It was emotional and exhausting but I am so glad we went. We flew to Dublin on Monday evening; the funeral was the next morning. The church was packed; there were literally hundreds and hundreds of people of all ages. The gallery was full, as was the annexe and there were many more outside who simply couldn’t get through the door. They had closed his school for the day, his friends were distraught. I will never forget their young faces. Stefan’s head teacher talked about Stefan, describing a brave, bright and talented student who would love to chat and socialize, especially with the girls. When she finished the whole church erupted in applause.

Stefan, we are so glad to have known you and will always remember you.

Claudia and Jesse
xx

Day +223...we have finally moved!

Hi Guys
Since the last post much has happened. Firstly two days after I wrote last Jesse took a turn down hill again. His poo levels went sky high, he was passing a lot of blood and he stopped eating. So we didn't reduce the steroids as planned as we feared a return of GVHD, but that didn't help. We moved into our new house finally on 4 September, it was hectic and exhausting. The house is lovely and it is wonderful to have somewhere that is really ours again! Derek, Albie, Stan and I packed and moved all the small bits and 4 guys did the big bits, it took us all day. I was surprised at how much there was to do as we have been moving a car load a day for a month!

All the time Derek and I were aware that Jesse wasn't right so we somehow made it to GOS on Wednesday. His symptoms perplexed Paul Veys, as did the fact that Jesse was clearly very well "in himself" as they like to say. He thought of viruses and GVHD but they didn't fit, then at the end of the consultation he came up with the possibility that Jesse had pneumatosis. This is when air gets trapped in between the lining of the bowel. It is caused by high doses of steroids. An X-ray proved it...so we had an answer which was good. The bad news was the treatment is nil by mouth or PEG except clear fluid for 48 hours at first, but if that doesn't work then up to a month of nil by mouth in hospital with IV feeding (TPN). They also halved his steroids. Jesse found those 48 hours very hard, but he did it and was brilliant. Poo levels decreased dramatically but when we introduced his overnight milk feed they increased, so we have taken the feed off and he is doing very well. He is eating loads and is very happy, so please all keep your fingers crossed that this continues.

That's all for now as I am shattered, Derek, Albie and I are having a final push to paint the front of the house (the back and side are done) while the weather is good. A day on scaffolding has wiped me out!
Love to you all,
Claudia
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PS On Saturday Tim, Eva and Zara brought our cat Mr Steed back home, Jesse was thrilled and Bernie screamed a lot!

Day +210

Hello everyone!
Sorry I didn't update yesterday...but that's because we managed to wriggle out of our GOS appointment. Things are so hectic with the move (next Tuesday) I rang and asked if we could postpone clinic, especially as Jesse is so well, and they were fine about it. We don't go back for another two weeks! Today we are dropping Jesse's steroids, but only a little so wish us luck! Jesse hit 19kg a few days ago and is still on fine form. Moving is still going to plan, and the house is nearly finished. Lily is having a lovely time in New Zealand, George has come out to visit and they are going exploring as it is half term now. Albie has done fantastic work on the house, at the moment he is transforming the outside! Stan has had a wonderful two and a half weeks in Greatham on his own (under the watchful eye of Maike and sometimes Hannah and Ches). Bernie has been having great fun in the boxes! Shambala came over from Germany on Saturday, spent a couple of days in Greatham and on Monday I took her to London to meet her new sister, born on Sunday 26 August. Mel had a tough time; over two days of labour and had a cesarean hanging over her but in the end she managed to push all 8lbs 14oz of her out! She is very, very beautiful with lots of black hair and fluffy blond eyebrows. Mel and Darius are very happy!
So that's our news...keep in touch, more soon,
love
c
x

Day +202

Thank you for your messages, emails and phone calls once again. Jesse is really well at the moment! The cheeks are back but look so cute. Jesse is now 18.5kg! He is living on a diet of frubes, shreddies, milk and cheese with a bit of pizza. Poo levels are very low and a couple of days ago he had his first stand up wee since transplant (this is because it was the first time he was certain no poo was coming!) It is amazing how much little things like that can mean. No vomits or tummy aches this week either! He smiles and laughs all the time and doesn't stop talking. Here he is practising his tennis. He has lovely days with Hayley; dog spotting, exploring the downs, flying a kite and looking at Samurai armour for sale online. We are going to GOS next Wednesday, so I'll update after that. The new house is looking wonderful, we are moving stuff over everyday, so our rental house is looking very empty! Must go as masses to do still, lots of love to you all,
Claudia
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Day +195

Just a quickie for the very faithful (I know you are there). Jesse is doing a lot better, he is eating (mainly shreddies, sugar and milk or frubes) and putting on weight (17.4kg a couple days ago). The cheeks are coming back too but the tummy aches are better and he is more cheerful. Poo levels are stable, so for the moment things aren't too bad. The house is going forward in leaps and bounds, carpets last week and stuff out of storage yesterday (what a lot of junk). But it is almost all put away, our official moving date is 4 September. Loads to do before then, but none of it essential...hallway, bathroom and outside. Must go as I'm off to the shop to do some stuff...love to you all and thank you for all your emails and phone calls,
Claudia, Derek et al
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Day +187

We have just got back from clinic at GOS. It went better than I imagined...we saw Persis Amrollia. I have been worried recently, Jesse has stopped vomiting and is eating and putting on weight but his poo has gone up, he has blood in his stools and lots of tummy cramps. Persis says the steroids treat the upper gut GVHD very quickly (symptoms vomiting, nausea, anorexia), but take longer for lower gut (bowel) GVHD (symptoms diarrhea, blood, cramping). So, Jesse will have to continue on the steroids at this high rate (1mg per kg) for another few weeks, if he improves they'll start halving the dose; if he doesn't they'll double it.

Of course this all increases his risk of infection so we will have to continue to be vigilant, and school in September is right out. At least that means one decision has been made for us, when he does return (possibly in January if this treatment works) he'll go back to Year 2 (we had been considering Year 3).

I was all set for a fight about diet, as the GOS dietitian had been trying to get me to take all wheat and dairy out of Jesse's diet...difficult as that is all that he eats! Jess said if that happens he may as well go back into hospital and onto TPN, as there is nothing else that he wants to eat! I had done a lot of research into recommended diets for GVHD and in the states there is mention of this, also I have proven with my poo diary that neither affects his poo output. But there was no fight necessary, Persis was happy that Jesse had put on half a kg in two weeks and said he could keep eating what he wanted so long as it wasn't too spicy or fatty. That was a great relief!

The most positive thing that emerged today was that Persis reassured me that eventually the GVHD will settle. I wasn't sure if he would have to battle this for years, but GVHD is caused by his donor's T cells thinking he is the enemy. Once these cells have died they will be replaced with new T cells made from stem cells that pass through his thymus and will be compatible. This was an enormous weight off my mind; Derek and I have been driving ourselves mad with worry that it would never stop. We have to hope that we can keep him free from infection as this is the most dangerous aspect, especially as we are now going into winter.

As usual Jesse was on good form for the doctors. He had me in stitches. He threw himself onto the examining bed, took his t shirt off, let Persis examine him then rolled over onto his tummy and said "Ahhh...I really feel like a massage!". He just lay there and after a while (we were having our "serious discussion") he piped up with "Hey guys...I'm still waiting for that massage!" It put Persis off his thread of thought for a minute and had me giggling!

Later we popped in and said hello to the girls on Fox ward, Jesse was thrilled to see Tamsin, George and Kiwigirl! Afterwards we met up with Caroline, Stefan and Red Ruth for some chips and a coke at Cagneys. We had a lovely afternoon!

Other news, our house is starting to look really beautiful, the carpets go in tomorrow. We still have the hallway, dining room and bathroom to do as well as tiling the kitchen and painting the outside, but every day it is improving. We are planing to move on 4 or 5 September, everything won't be finished but the rest can be done when we are in. It is getting quite exciting! It is exhausting too...

Jesse is looking forward to tomorrow, I think he is hoping Hayley will take him back to the Falmer duck pond and a vanilla ice cream from the farm shop...

Day +179

Please give a moments thought for little Dylan, who died at 4 in the morning on Monday 30 July. He was on Fox ward with us, he had his transplant in March and went home in June. We last saw him at clinic on 11 July, he looked so well. He was admitted to GOSH intensive care a few days later suffering from para flu, he fought for over two weeks but he had no resistance to infection. He was only 20 months old and had been in and out of hospital for the past year. We are all devastated by this and out thoughts and love go out to his wonderful and loving family who did everything they could for him. We will never forget his dark brown eyes and beautiful smile.

Day +177 GVHD is back

Again, this post only makes sense if you have read the previous two...

Yesterday afternoon Netty from the BMT office rang with the histology results of Jesse's biopsy, he has GVHD all through his gut. Derek and I were devastated, we had both been hoping that Jesse's problems were due to a virus...the treatment would have been to decrease the immunosuppressants and then his lymphocytes would have risen and we could start to contemplate some kind of normal life...

BUT in fact they found GVHD. I haven't seen the report yet and the consultant was too busy to talk to me. The treatment is to put Jesse back on a high dose of steroids (1mg per kilo, which means 16mg a day), when he had completely stopped. After two weeks they will start to decrease it. Of course it does explain all the vomiting, lack of appetite etc. After yesterday's dose Jesse ate a whole bowl of spaghetti and cheese followed by strawberries and ice cream! His first proper meal in weeks.

That is definitely a plus, but there are lots of negatives too...mood swings, big cheeks, damage to bones, he won't grow and worst of all...no lymphocytes so the isolation will continue. School in September is out for certain and viruses will be even more dangerous to him. I'll keep the blog updated as we hear more,
love
c
x

Day +175 We made it home today!

I'll keep this short (and bear in mind this post only makes sense if you read the previous one). The scope went well, although I found it very traumatic, he was given a medicine that meant he forgot everything, luckily it worked! He has no memory of telling the nurses to F*** off as they put the cannula in or trying to scratch and bite me!!! I was with him whole time and was able to see inside every nook and cranny of his gut and bowels, we have the photos to prove it!

His stomach looked pretty good, shiny and pink as it should except for some white nodular lumps (which could indicate food intolerance) but his bowel looked really quite wrong...most of it was white and furry (like an unhealthy tongue) and then very far up there were some red sore bits. The doctors weren't sure what all this meant (candida, GVHD or adenovirus) so we'll have to wait for the biopsy results(4-10 days). I'll keep you posted!

Ruth came over last night with an amazing M&S selection of goodies. Jesse and I really enjoyed seeing her.

We got home today via HMS Belfast, Jesse really wanted to see the anti-aircraft guns. Last time we went he was too weak to go up the steep steps so we had a great morning!

Must go as it's past Jesse's bedtime, I'll write again when I have more news...although having said all this...Jesse has eaten loads today; a whole sub roll, loads of chips, several lychees and and ice cream cone!
love
Claudia
x

Day +173 (written on Tuesday 24 July 2007)

Hello again to the very, very faithful! I hope all is well all of you, please forgive me if I haven’t replied to emails and sorry not to have posted for such a long time, I kept meaning to. I’ve sometimes even started with a title but then been distracted by something or other…so much has happened over the past couple of months I’ll do my best to do a shortish summary. I think I’ll start with today and work backwards and forwards as necessary, not terribly logical but that’s how may mind works!

I am writing this from Louise ward in Great Ormond Street hospital, its funny but it feels like the old days, except things are very basic over in the old quarter, not even a TV in the room! We only knew we were coming this morning at 8.30 am so you imagine the chaos as we packed! We are here for a scope and a biopsy of Jesse’s upper gut and bowel. He’ll have it tomorrow and I’m not looking forward to it although Jesse remains un-phased as usual; this is because I found out this afternoon he will be sedated not given a general anaesthetic. I will be able to stay with him, and apparently he will writhe around and cry out while they do it but will be given a drug that means he won’t remember a thing. It sounds harrowing, but if all goes well we’ll be home on Thursday.

We are here because Jesse hasn’t been going from strength to strength, in fact he has very steadily but surely been going downhill. He is allowed to eat anything not but refuses to eat at all, maybe a couple of bites of a bun in a day but not much more than that. If he expresses an interest in any kind of food we’ll jump in the car and get it for him. He’ll take a mouthful and then refuse to eat more. He has been losing weight at an alarming rate in spite of his overnight milk feed. A couple of weeks ago he reached an all time low of 15.3kg (just over 4 times what he weighed at birth over 7 years ago). His diarrhoea has been better but has recently been worse again and top off all this he has started vomiting a few times most days. Derek and I are driven mad by worry, so I pushed to have this biopsy.

If they can find out what’s wrong then they can treat it and importantly if it isn’t GVHD then the immunosuppressants he is on can be decreased. They keep his lymphocytes (white cells that fight viruses) low (or non-existent in his case), which is keeping him in isolation at home. If it is GVHD they can treat it (he has been weaned off his steroids so it could be simply withdrawal or it could be the steroids had been keeping the GVHD at bay). The problem could also be a virus as it was before. Sorry this is all so technical, but that’s just how it is, there is no way to explain it simply!

It did look like Jesse was doing really well but the past six weeks have shown a steady decline, sometimes so small you can’t see it at the time, but my famous poo diary says it all! Jesse keeps us busy night and day with feeds, general care, medicines, hospital visits and lessons. Derek and I are exhausted. We work on the house every moment we can and thankfully it is now coming together. We are hoping to move in by early September, and it will be beautiful when it is finshed.

Now for a quick catch up…Bernie recently has been better more often than ill (although he has been poorly for the past week). He is on a steroid inhaler twice a day and that seems to have made a difference. He is also the naughtiest of all of my babies, very wilful and powerful. He understands lots but is saying little, I hope he’ll find life easier when he can express himself. Lily went to New Zealand on 7 July to do a term at Auckland art school. She was very excited and nervous, but has found herself somewhere nice to live and is settling in. She’ll be back just before Christmas. I miss her loads! I think she is very brave. Albie has been an enormous help, he has worked on the house tirelessly, decorating it top to bottom. We still have the outside to do, a mammoth task! He has found time to fit in a trip to Barcelona (where he did a lot of sketching) and a few painting days with his mates on the legal walls in Brighton; his work is stunning. Stan has been doing well at school, he was involved in a brilliant school play, part of the NT Connections competition. They were highly recommended and played to a public audience at the Dome. He has also done his French GCSE, result in August, as well as completing his Duke of Edinburgh camping trip. He also made it to Barcelona with the school for a week and has been playing in the samba band! All this exertion has taken it’s toll, Stan was really ill for a couple of weeks and pleurisy was suspected. He was better but his chest has been hurting for the past couple of days again so we’ll have to keep and eye on him!

Sorry to be so negative but things do keep crowding in on us. Yesterday I punctured a tyre by reversing into a low wall in torrential rain and today while I have been in hospital with Jesse, Derek has had to deal with a blocked sewer for hours at the shop this evening…with Bernie in tow! Dyno Rod and another company let him down through the day and the third couldn’t shift it after rodding for 10 metres! Luckily they tried water jetting the blockage which worked. Derek says he and Bernie had to operate the pump from the van! I think that bit was fun…

I’m going to stop now as I am tired. Things are really tough for us, but a lot of friends I made while in hospital are having a much worse time, so in a way we are lucky. I still try to keep things in perspective and take one day at a time but it hard some days, especially it you are dog tired. If we are kept for another night I’ll tell you the story of how we almost met Raven…if we are let out I’ll probably be decorating the hallway so it’ll have to wait! Thank you as ever for all your emails and posts, it really does make a difference. I was especially touched by Miles’ comment. It is wonderful that he felt moved to become a donor! And Annie, of course you can come round, we would love to see you, just give us a ring.
Love
Claudia and Derek

PS Through all this Jesse has mostly been able to retain his good spirits, he is still as quirky and barmy as ever and doesn’t stop talking. He is such a great kid, we are very proud.

Day +142

Hello to the very faithful! Apologies for the delay in doing a new post. I was aiming for every two weeks but haven't managed it...Things are still OK, but not great by any means. Jesse is eating anything he wants, which sounds great...but...he doesn't want much. His appetite is like a sparrow and he has started being sick a couple of days a week (although it is a week since he last threw up)...

Sunday october 21
I have just found this post and never published it so I thought I should as it captures a moment!

Day +120 Still OK!

Sorry, I didn't manage to update the last entry, our lives are just too hectic. So here is a quick catch up on life in BN1...
JESSE; he is doing really well. He had a tummy bug the Saturday before last (I think he caught it from me, I was really sick and poisoned all day with horrible diarrhea). In the evening he began to say he felt sick and then he threw up three times in an hour. By this point I was feeling a little better but very was very worried so I took him into the Alex (our local children's hospital). By the time we got there he had perked right up and was so chatty they sent him home after a couple of hours! We didn't give him his overnight milk feed and he was off his food the next day BUT...miracle of all miracles...he virtually stopped pooing! The next day his 24 hour levels went from 1000mls to 120mls!!!!!!!!!!! Once he started eating and having his overnight feed his levels settled to 400mls and we were delighted! I won't be too graphic but suffice it to say we have almost seen a normal poo, we all felt like celebrating! We went to GOSH for the BMT clinic on 23 May and they were so happy with Jesse they said we had to comeback in three weeks. We have added loads of food successfully; banana, pear, apple, peach, new potatoes, chips, tortilla chips and ketchup. He seemed to have a reaction to water melon and mango, poo levels rose to old levels for couple of days and now these have been excluded they are right down again. Jesse has lost weight but not too much. He is full of energy and in great spirits. Today he had some proper bread and it seems to have gone down well...I put an ad on Brighton Gumtree for some help in the day with Jesse and we found a lovely girl called Hayley. She can help out quite a few days a week and Jesse adores her which is quite a relief...so this takes us on to...
CLAUDIA AND DEREK; we are OK but very tired. It has been hard for the past four weeks since we came home. There is an endless round of medicines, physio, cooking, cleaning and shopping that has to be done. We use around 25 syringes a day to give Jesse his medicines and flushes, that in itself is exhausting. The milk feed has to be changed in the middle of the night (bottle and line), Jesse is up three times a night quite often and then Bernie can wake as early as 4.30am and need settling. Sometimes we have to let him scream. We try and take it in turns but often we both wake up. Then one of us has had to be with Jesse all day every day, the only places we can go with him are the beach or the park and of course the weather has been pants. We are both hoping that having some help in the day will help...so this takes us on to...
THE HOUSE...it is still a building site but the dry rot is sorted. We got the guarantee last week. We have lost some of the ceiling mouldings but to be honest I just don't care, we'll make it look nice. The builders reckon they'll be finished at the end of this month or soon after so we may be on target to move in August. Albie has done LOADS of work decorating and it is all coming together. Yesterday because we had Hayley looking after Jesse, Derek and I were able to be at the house together for the first time since we bought it 2 months ago...again quite a step forward...also I have had a bit more time at...
THE SHOP...which has been doing really well but does need some TLC. I've started with this but I need a lot more time to get it into shape. Everyone has done a great job keeping it in order but it is very hard to do when you have lots of customers to serve...
SO THAT IS OUR NEWS...there is more but I must stop now. I know there are lots of you that are checking to see how we are doing and we still feel the love! Keep in touch by blog, email, text or phone...
STOP PRESS...WE GOT OUR ENGRAFTMENT RESULTS TODAY AND FOR THE FOURTH MONTH IT IS 100%!!!! After six months they call the BMT a success...anyway must go to bed, love to you all,
C
X
STOP STOP PRESS...Sorry I forget to say this last night but we had some good news about Bernie yesterday. Dr David Webb, haemotologist at GOSH finally wrote to us saying"The results of all investigations, especially the full blood count done in Brighton, were completely normal. I reviewed the blood film which was normal. Bernard had previously had a blood count here which showed completely normal values together with a review of blood film which was also unremarkable. I think this is very reassuring." I think he is trying to tell us that Bernie is normal! I will do my best to relax and believe him,
C
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