No clear answers from Birmingham

Home is once again full after a weekend away. Hope has been on guide camp while the rest of us spent the weekend at the hospice. Very welcome following Paul and I travelling to Birmingham for a discussion with the small bowel transplant team on Friday.

I was hoping, as ever, that the trip to Birmingham would bring about instant answers regarding William's condition and treatment. However, as usual with our Wills, the discussion threw up more questions than answers although, overall, we felt the possibility of William receiving a transplant is not too likely. William is not yet critical enough for a transplant. He has at least 2 sites left for his hickman line (although how long these sites last have varied between 10 days and 8 months so this is not good indication of his prognosis) and his liver seems to be behaving itself at the moment. However, William will become critical at some time in his childhood and the idea that a transplant could be his lifeline when this occurs is a great comfort. This situation could arise this year, it could be next, or it could be a few more years down the line but it will happen. As well as intestinal failure, Wills also has physical disabilities that appear to be progressive, recurrent severe lung infections and odd blibs in his immune responses. This is all believed to be due to one underlying condition, probably genetic. We listened to lots of information about small bowel transplants and, towards the end of this, were told that the 2 main situations in which they will not consider transplant is where there is a progressive neurological condition and where there is a disease that is impacting the immune system. This is due to the enormity of the operation and the future impact of anti-rejection drugs. Everyone in the room knew that both of these contra-indications could well rule William out of the option of transplant. So, the next couple of months will see further tests and collation of results to try and decide if William does have the kind of progressive condition that will rule him out of transplant. These results will be shared with the Birmingham team who will, in turn, meet to decide whether he should be assessed for transplant, assessed at alater date when his condition becomes critical or seen as unsuitable for transplant and his care viewed as purely pallitative, enabling any medical or surgical intervention to make him more comfortable to take place. Even if he is seen as suitable for transplant this can not be seen as a magic bullet. It is a horrible operation followed by several months on a medical rollercoaster. Only 55-60% of children who have received a small bowel transplant are alive 5 years after their operation. Lots to think about and some nervous months to come as we wait for the results that will tell us what can be done. Paul and I hope it becomes clear cut it is either ideal for Wills or not possible. It would be a very hard decision to make not.

I was grateful to have the hospice staff to chew all this over with through the weekend. It was an interesting weekend at the hospice. There was a lovely family there who have just lost their son and were receiving bereavement support while he was resting on the "special bedroom" or mistral room. They have a daughter the same age as Ellie and they were inseperable. This did both girls a heap of good and Ellie spoke to me for the first time ever about "when William dies..." This had been something far to frightening for her to think about but seeing another family go through this has shown her that, although very very sad and difficult, she will still be able to play and laugh and make new friends and none of us will change who we are and what we do. We will just be very sad and will always miss Wills. It is strange and sad how my perspective has changed. This was a really important time for Ellie.