Julia was discharged on Sunday afternoon after receiving her blood transfusion and being monitored for a few days. On Monday night she spiked a fever. I organized drawing blood cultures and counts from home and sending it to the lab. It showed that despite being on the GCSF injections she still remains neutropenic (no counts). Her oncologist was so kind to bend the rules and allow us to remain home and follow from there. But by yesterday fevers persisted and it was time to come in......there was no more rule bending. So last night she was re admitted to Sick Kids and is under going further investigations. We had consults with both GI and ID today and everyone is sitting tight for last weeks biopsy results. There seems to be a very big concern or hunch that we could be looking at disease. Julia remains very weak and tired and it has been decided that its time for a feeding tube. So we will put it in and hope that she doesn't pull it out. We need this (and trust me this was a last resort), to get the calories in and help her gain some weight and feel stronger.
Saturday is Emily's birthday and I am so sad that it looks like Julia will be here. This will be 2 of 3 years Julia has been in hospital on Emily's birthday. As most of you know this has been an unbelieveablly tough ride the last 2 months and there seems to be no end in sight. I am worried, stressed, frustrated, sad, angry, and feel so displaced. The back and forth to and from the hospital, the luggage I keep packed at the side of my bed, the constant goodbyes to Anthony and Emily its becoming all too much to bare. I pray everyday that we are able to find out what is causing Julia to be so unwell and we can fix it soon.
I will keep you all updated on the situation as I can.
Thanks for all your support.