The Fox Report

Saturday +9
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old

White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03

We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.

Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.