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!