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
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