Dateline 15th April 2008
Up before the crack of dawn for today’s trip to Bristol.
Yes, Virginia, there are two 5 o’clock in a day.
It was a lovely clear morning, a bit chilly with mist coming up of the fields but still a great day to be travelling.
Its amazing how, if you leave Yeovil at 6am, the journey up the A37 can be quite quick and easy. Took a little over one and a quarter hours today.
Having arrived Rhys was soon on a drip having a dose of platelets as his counts continue to do an impression of a dancer in a limbo competition, getting lower and lower. How low can you go.
As of yesterday haemoglobin was at 7.0, white blood count was 0.3, platelets 40 and neutrophils 0.1.
Today’s procedure was a lumbar puncture with intrathecal Cytarabine and steroids. The steroids being to help kill off any leukaemia cells that may still be hiding in the cerebral fluid, even though all of the recent lumbar punctures have been clear, and also to help reduce any swelling that might arise from the Cytarabine.
Fortunately the anaesthetist was in early to see Rhys as by mid morning he might have had to explain that the colour of his nails was not due to him wearing nail varnish, one of the standard questions on the paperwork they run through, but because he had been finger and hand painting.
Rhys’ eczema on his back has improved since last Friday, the scarring looks very much like that on his arms.
As his red blood counts are also low Rhys has to go into Yeovil hospital for a blood transfusion. It will be a reasonably long day for him again as he has to have three units of blood.
Chatted with Jamie, it would appear that I am not the only mad person who has applied for next years Flora London Marathon. Roll on October when I’ll find out if I’m in. If I am then it will make running the Great South Run a couple of weeks after all the more fun and a really good incentive to keep up the 10 mile runs all through the winter.
Rhys wasn’t long having his lumbar puncture, well under an hour between going down and being back on the ward.
Although he wasn’t hungry, a constant problem at the moment as he has no appetite, he did eat something as that is one of the requirements for being allowed to go home.
Before we left we discussed the next couple of weeks with Rhys’ consultant. He’s got chemotherapy the rest of this week with his mercaptopurine finishing next Tuesday. After that its just itraconazol, septrin and valaciclovir until we’ve completed the course and then back on the aciclovir.
We are waiting for the bone marrow donor to confirm that they will be able to donate in order to meet our timescales. We do know that they are able to donate and they are American, its just a case of agreeing when so that the logistics of them donating and getting it flown over to this country for Rhys’ transfusion to be sorted out.
Last post I mentioned that we’d been told that neurofibromatosis was tied in with another type of cancer. We’ve found out a bit more.
The cancer is called juvenile myelomonocytic leukemia and is much rarer that Rhys’ ALL. Thank goodness that in his endeavours to be as unique as he can, he didn’t go for something really rare.
