Before this all started we didn't even own a thermometer - if one of the children was warm it was a hand to the forehead, a spoonful of Calpol and a duvet in front of the television! I wouldn't have known whether 36, 7, 8 or 9 was normal - I knew 101 was a day off school when I was little and had never progressed to celsius... I never imagined there was a world where 1/10th of a degree made the difference between home and hospital, between 7-day iv antibiotics and none, betweeen chemo and none etc...anyway yes I had spoken too soon, yes Kings did grow cultures halfway through last week, yes Rose did spike to 40 degrees and no we haven't been home. The magic number of 38.5 at which doctors start writing up anti biotics was hit and beyond - Rose deteriorated and we started the battle once again not to be moved to Kings while she was feeling so ill. But we lost - again. Children lined up waiting for her room and so we lugged Rose once again across London sprawled across the back of the car feverish and miserable back to Kings. I cried out of sheer frustration the whole way - I know it's an overloaded system but it is unimaginably hard to take a child that ill from hospital to hospital. Psychologically it is tough for all of us but mainly Rose who retreats into an awful silence - anyway back into Kings on Halloween night for another unscheduled pit stop of unknown duration.
This time not only did Rose have two positive cultures but was also diagnosed with c diff - there seems less and less to say as more bad news is heaped on us. Her blood counts are very low - lower than they should be at this point of the cycle - and she is a little bag-of-bones bundle of infections and bugs. Feeling the strain badly but heads down and desperate to get through the chemo now we convinced the Marsden to let us come back last night in time for her heart echo this morning and possible chemo today if her counts had recovered sufficiently. We went back last night and Rose had her heart echo this morning This has always been a routine procedure to date - just a box to be ticked before being cleared for chemo, along with hearing tests and kidney function and Rose has always sailed through all these checks. Until today! Last thing we were expecting - things seemed bad enough already - but her heart has sustained damage as a result of the chemo and she needs to be seen for a second opinion at the Brompton before any more chemo can be given. Waiting now for an appointment there - but of course meanwhile with no chemo imminent the nurses are busily trying to get our bed back at Kings. Not sure any more whether to scream, cry, laugh, throw myself at the bed manager's feet, have a tantrum...none of it will make any difference and this will all play out regardless of what I do so I might go and make a cup of tea instead.
