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.
