Day +118

Everything is OK! i'll write more later this evening. In the meantime here are a couple of photos of Jesse with his new purchases and he and Albie fighting!
love
C
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Day +106

OK...here is a bit of a catch up. It is strange but lovely to be home. Jesse does very little in the day mainly because the weather has been so rubbish since we came back. There isn't anywhere we can go if it is cold or wet, but he is very contented with playing on the computer, doing the odd jigsaw or watching telly. Bernie has been better, but he is still quite a handful; very boisterous and prone to biting. We have to watch him with Jesse as he is very rough. He has been ill again with a cough and now an eye infection. We did bloods last week for him, the first counts were good so now we are waiting for Dr David Webb, consultant haematologist at GOSH, to look at the blood film. I am pretty certain he will see if there is anything abnormal...I'll keep you posted.

Jesse looks fantastic! The most marked difference is his skin and eye colour, both are so much darker. Before transplant his skin was the colour of milk and his eyes a pale, pale blue! He is getting stronger by the day. He went for a long walk in the park yesterday and the day before. He still needs to crawl up and down the stairs but every day he can do a bit more. He has had one session of physio and is doing his exercises. I make sure he does a bit of reading every day and he does his hand exercises with the theraputty daily too. It is amazing that in a few weeks he has managed to grow back some of the muscle he is missing below his thumb (thena eminence if you want the medical name)so his hands look almost normal. I think he'll be starting some home tuition next week, sadly his old tutor, Annie, can't come back, but I'm sure he'll do well with someone else. He learnt so much with the lovely Louise at GOSH I'm really keen for him to continue that progress. Paul Veys says he may well be ready to start school again by September!

We came back to GOSH a week last Wednesday,he had been pooing so much that I thought they might readmit us, but actually they were very relaxed. His counts were so good I stopped worrying too much. I had been getting him to drink lots and had tried him on some other bland foods like corn spaghetti and rice crispbreads. So I stopped worrying about replacing all his lost fluids and went back to the rice diet and slowly but surely his poo levels are coming down. Each night he has 600ml of a complete elemental feed and I know that it will provide him with everything he needs so it is easier to relax...They were so happy with him they said we could come back in two weeks! So we'll be off next Wednesday to see what they think of his progress. Last Friday Jesse woke up crying, he had a very sore throat. I went into another panic but he didn't spike a temperature so I was able to give him some painkillers. By the next day he was much better, just rather snotty. It was amazing to have him ill but not to need to go to hospital for the inevitable iv antibiotics! He just had a cold! It may seem like a small thing but for us it was a miracle!

I am managing to do some work, as is Derek, but is very awkward because one of us has to be with Jesse all the time. We are going to try and find a student to stay with Jesse for a few hours in the week to free us up a bit...Our new house is now a derelict building site and needs lots of attention and focus, so that is very stressful. It is riddled with dry rot so the builders are taking 3 of the 4 bay windows out and replacing all the frames and several joists too. I'm trying not to worry too much about it, at least we are comfortable in the rented house and the new house will be lovely when it is eventually finished.

As I said in yesterday's blog, we had Shambala come and stay with us for 5 days. She is having a difficult time at the moment with the swelling on her leg. We have been doing everything we can to get a proper diagnosis, she saw Dr Anne Davidson here in Brighton and has now been referred to the Royal National Orthopaedic Hospital in Stanmore. They are looking at her case today...obviously this has been a big worry for us all...

I must stop now because I am planning to spend the day at the house getting Bernie's room ready for Albie to decorate...I'll update next week when we've been back to GOSH. We are looking forward to catching up with everyone there,
lots of love
Claudia

Day +105...still home

I have been asked by many people if I'm going to keep up the blog...and I am planning to. The trouble is things are SO hectic here I just haven't had the chance. I have a busy day today but I thought if I started I may be able to keep going when I get a moment. I'll publish it as I do bits so it should grow through the day.

The most important thing to let you all know is that Jesse is OK...still pooing a lot and still only eating rice...but stable and happy. Here is a photo I took this morning, Jesse has spent a lot of time on the computer!

As you can see his hair is growing back and his face is thinning.
Last week my beautiful niece Shambala arrived from LA, and spent her 16th Birthday with us. We had a lovely day...here she is with Albie at Terre a Terre!

more later

Day +93 We made it!!!!!!!!!!!!!!!!

It is lovely to be home and exhausting too. Jesse is getting lots of physio from fighting Bernie for his swords and shields and from going up and down the stairs. It is great to be back here and see Derek and the boys. Bernie is being very demanding, he is so excited by Jesse and copies everything he does, but he is very boisterous so we have to watch him. Bernie is also very Mummyish, if I stand up he does too because he thinks I'm going to leave him. I've managed to unpack most stuff and got a system going with making up the medicines which are very frequent and complicated. The highlight of the day was a visit from Cory, we showed him Jesse's Hickman line and PEG just so he knew that he had to be careful during sword fighting and he looked quite worried. He said it looked like something from last weeks Doctor Who...but then they had a great time. Thank you Niamh for your beautiful present, we will have a taste tomorrow! It looks fantastic and Jesse loved it.

Thank you for your comments, calls and emails. It was really good to hear from you Alan (I hope you are feeling better...is there someone in our room yet?)and from the nurses. Jesse says he really misses you all...even kiwigirl! We'll come and say hello on Wednesday. Don't forget if you want to talk to us direct then my email is claudia@purple-heart.com and Jesse's is jesse@purple-heart.com. We look forward to hearing from you,
lots of love
C & J
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Day +92 HOME TODAY!!!!! (touch wood)

Photo of the day

OUR BRAVE WARRIOR! (sporting his birthday shield, which I customised this week with a design that Jesse and Tim came up with on Saturday, and his sword which is now copper and gold!)

I haven't written since Monday for two reasons, partly because Jesse has hogged the computer most days playing Medieval Total War but mainly because I haven't wanted to tempt fate. Up until this morning I have heard "maybe Friday", nothing more definite. I have had pump training so Jesse can be fed overnight at home and all the milk supplies have been delivered to Brighton. I had my going home talk on Wednesday, all fairly sensible. I have crushed and prepared all his medication since Monday (5 lots a day, with up to 8 different drugs). Most have to be crushed, mixed with the right amount of sterile water and drawn up into a syringe. It takes nearly half an hour to do the morning and night ones. So I am all set...but I haven't packed a thing yet and the whole time we have been in limbo.

Jesse's electrolytes have held remarkable well but on Wednesday he pooed a lot (15ml less than a litre), I convinced myself they wouldn't let us go. On Thursday he started the day with a whopper but since then he has been a bit better. It is nearly 7am and poo levels are below 745ml, so unless his blood count holds any surprises WE WILL BE ON OUR WAY BACK TO SUNNY BRIGHTON THIS AFTERNOON! YEAH!!!!!!!!!!!

Thank you all so much for your support, I know there many of you out there sending us lots of positive thoughts, most of you I know, others I don't. We have felt the love, and it has has helped enormously. All the jokes, silly stories and messages of support have kept us going. Sorry if there are emails and comments I haven't replied to, and presents sent that I haven't thanked for. I appreciate it all and am so grateful. A great big thank you has to go all of you who managed to find the time to visit, it helped break the monotony and kept my sanity (just). And "thank you" doesn't seem enough for Tim and Red Ruth who have been such rocks; their dedication has been spectacular; I will indebted to them always. Without all of us as a faimily pulling together things would have been harder, so well done guys, we made a great team. Albie and Stan kept going without us at home, and Lily stepped in like a hero and did a fantastic job feeding, cleaning and keeping the shop going. And everyone at the shop were stars, keeping purple-heart.com on the road for me...thank you all. Sorry, this is beginning to sound like the Oscars, so I'll stop now.

I have made some good friends here and met people going through the most terrible times; watching your child being so sick is very hard. I will miss them, especially Sue, Andrew and Roxy (I really hope it is your turn soon), Caroline and Stefan, Mary, Tamara and Dylan, Emma and Liam, Alan and family, Jo, John and Olly and all the rest. And we will miss the nurses, physios and even the doctors (but we will be glad to see the back of Jen Warner...trouble all the way, never a moments peace!...actually we might even miss her just a little bit!). Also we'll be very sad to say goodbye to Louise, Jesse's teacher, who has made such progress with him. Her sunny temperament and patience have kept him going even when he was very ill, she even sent us an email from China during the Easter Holidays telling us all about her trip and the Great Wall!

Although he is excited, Jesse is a bit nervous about going home. He is worried about Bernie, partly because he is so boisterous but mainly because he keeps getting ill. Jesse is very aware how vulnerable he is to infection. The doctors say that he is on so many drugs that it is unlikely that he will get ill, he is also on immunoglobulins. Jesse will still be in semi isolation and will have to keep away from places where there are a lot of people ie shops, cinemas, restaurants etc, but he can have visitors who are well and can go out in the open air. He can even have friends over to play (Cory are you reading this?)! Our family germs are OK, because we know what they are. So even if Bernie gets chickenpox, we'll know and Jesse can be protected. It is the unknown germs of other people that the doctors worry about.

Life is never uncomplicated (well mine isn't anyway), whilst we are delighted to be going home we are worried about Bernie. He has been ill so often, we have decided to have him investigated. Our wonderful GP, Liz Green, is convinced he is fine and so are the geneticists, but I'm not. This week he had a temperature of 38.9, last week an ear infection and the week before vomiting. And it has been like that the whole time we have been in hospital. So on Tuesday we'll be off the the Alex, this time for Bernie and the haematologist here Dr David Webb has agreed to look at the blood film. If they find nothing abnormal I'll relax as I think they will be able to find something if it is there. I feel it is better to know one way or the other as soon as possible...I'll keep you posted.

Jesse just now, with any luck this will be his last night in this bed!

Must go now as I have some packing to do!
lots of love
from us all
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