Sunday, October 16, 2011

Luck Just Not On Our Side..........

Hi Everyone,

I'll start by telling you that Julia had been feeling really well the last couple of days so the plan was made on Friday to get a day pass for Saturday and see how she did at home for the day and than discharge this morning. She came home yesterday and started off fine but as the day went on she changed. She became more tired and started getting warm. Headed straight back to the hospital and when she arrived her temp was 37.6 - not bad but not great. Well this morning at 4am Julia spiked a fever.....6 hours before her scheduled discharge. So of course no discharge for us and back on IV antibiotics - the Sick Kids cocktail. I am so unbelievably frustrated and don't know what more to do.

The bone marrow results that are reported (some still not back)show that she is producing cells but they are being destroyed somewhere (same as last time). There are some elevated T cell clones seen in the marrow but unfortunately doctors don't know how to interpret these results. So we know that this isn't normal but don't know the link between this and everything going on. As an institution (and actually in the whole medical field) they do not have a good understanding of T cell clones in Julia's situation. The MRI showed that there is no hemorrhage or mass in the brain (thank god), all good news. It did however show an abnormality that is seen in kids that have been very unwell or received chemotherapy. Given that this was Julia's first head MRI there is nothing to compare it to. So basically another piece of information we will keep in our back pocket and follow. So incredibly frustrating to go through a number of tests (which all show something) and still be no further ahead. It is not any ones fault and doctors are always working hard to put the pieces of the puzzle together it's just not that easy. For now we are stuck in here longer on antibiotics. I will know more tomorrow when the team is back and hopefully I'll have more answers or a new plan. As you all know there is never a dull moment in our lives.................

Thanks for your continued support and I will keep you all updated.


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