11th April
Another day in Bristol. Partly so Rhys can have his Cytarabine and see the dietitian but also so that he can see the consultant dermatologist.
The day turned into a full day rather than the half day session as Rhys’ platelet count had dropped from 100 to 47 over a two day period. As we we’re in Wales for the weekend and past history has shown that give him a chance to be even slightly unwell and we end up paying a visit to the hospital, either for him to be admitted with a high temperature or at 3am in order to get a bottle of Calpol in order to try to reduce his temperature before we have to have him admitted.
Rhys has had some spots on his forearms for a little while this year, certainly a little before he relapsed. These got itchy and he started scratching them in his sleep. This ended up with him having some really deep wounds in his arms.
A few weeks ago we saw a dermatologist who introduced us to one of the specialist eczema nurses who organized some special bandages and creams for Rhys. We’ve been having great fun putting on the bandages as they are impregnated with lots of moisturising cream and so you can imagine just how messy this can get.
When we saw the dermatologist again Rhys’ arms had healed so that the wounds are now pretty much scar tissue which should continue to heal and fade in time.
The general opinion is that Rhys has had discoed eczema although that is not definite as no pictures were taken of his arms before he started scratching them or we were putting the bandages on them.
The main consultant dermatologist came in to have a look and decided that it would be useful if some pictures were taken of his arms so that there is something to compare when they see him next and in case they identify exactly what this problem was. In which case pictures of his arms may get used in medical text books some time in the future, so if you happen to be reading a medical book about skin problems some time in the future and see an arm against a blue paper background with red circular scars on it then it just might be Rhys’. From the way that he posed for the photographer he has a great future in catalogue modelling.
One interesting fact that we did learn from the dermatologist was that as we all know Rhys can’t do anything easy or expected.
The consultant dermatologist when he came in started questioning us about Rhys’ history. As he was doing this he glanced at Tray and said to her that she had Neurofibromatosis (NF). We said so has Rhys. At this point he asked about Rhys’ cancer diagnosis which is Acute Lymphoblastic Leukaemia, he then said that with NF the usually associated cancer is something called JNML, whatever that is.
Still no confirmation that the bone marrow donor will be able to spare time to provide their donation. Keeping fingers crossed though.
