Playing the Waiting Game...

Leo's temperature is still not cooperating and got up to 38.8 degrees yesterday afternoon, only about 30 minutes after Sarah, Leo's lovely Clic Community Nurse had left. In fact whilst she was with us and taking Leo's bloods, his temp was 37.9 and 38.3 and as she left she said to call the Day Beds Ward at the Children's Hospital if it hit the all important 38.5. Lo and behold, his temp seemed to want to defy what we want.

Having said that, doctors are stumped as to why the temperature is spiking and why he's had a low grade fever for such a long time. Neither PJ nor I are ill, and nothing has changed since he was last admitted whilst neutropenic. They stuck a vacuum up Leo's nose yesterday to grab some bogey (sorry, that's the only way to put it), and tested it for viral problems which may be causing the temperatures. But the test came back all clear today. His line in his chest is clear of bugs so it's not that, even though his chest exit site is slightly raised and red.

Unfortunately the doctors cannot really do anything if the tests they run don't show a problem. His CRP was also under 10 which shows there's no infection brewing. So we're all stumped and to say PJ and I are concerned is an understatement. His right eye lid is a little red a swollen and a little more so from Wednesday when we were at the Eye Hospital.

So it's a pure waiting game and one we don't know how to play. The issue is that once he is neutropenic and if his temperature spikes again, then the doctors will admit him and give IV antibiotics again, much as they did last time. They'll give him IV paracetamol which will lower his temp, and once it's been down for 48 hours, they stop the antibiotics and paracetamol and left him go home. Same as last cycle. But then as soon as that happens, his temperature goes back up and hovers between 37.5 and 37.9 with a spike above 38 degrees every day.

Leo has been energetic even at the worst of times and has kept PJ and I on our toes, but the last week, he's wants to go to bed early and was asleep before 7pm yesterday, sleeping until 8am or so. He also says he's cold with only a T-shirt on in the house and yet his temperature is still raised.

Sorry for letting off steam here but sometimes things can make more sense when they're written down. Sadly that's not the case today. So we sit and we wait...