Dear Family and Friends,
I would like to start by thanking everyone involved in organizing Julia's event Thursday and of course everyone who came out to support us. It was a fabulous evening filled with wonderful entertainment from Brian. It was very overwhelming and emotional to see how many people came to show their support and how we live in such a great community that really cares. To the many people involved in planning the event (who didn't even know our family), we are truly touched at all your hard work and generosity.
Now to Julia..........most of you weren't aware that Julia was discharged late Thursday afternoon and after only a few hours home and as I was scrambling to get ready for the event she spiked a fever. So as the show was going on I was on my blackberry communicating with her oncologist and my sister who was watching her. We managed to get through the night and I brought her to clinic Friday morning. No surprise..............she was readmitted to Sick Kids. We got less than 24 hours at home. She was scheduled to have a heart biopsy on Friday but earlier in the week cardiology postponed it a week to this Friday to give her some extra time to get better. Well now doctors are sharing our frustration with the constant admissions. It has been 5 weeks that we have been in and out (mostly in) of hospital. Therefore after many discussions and back and forth emails we have a plan. I got an email last night at 6pm telling me that Julia will go to the OR this afternoon for her biopsy. Although it is unlikely that all of this is related to rejection you just never know with Julia and no one is taking any more chances. She will also have a PET/CT (hopefully tomorrow or Wednesday) to look for disease or infection. The Infectious Disease team believes we may be missing an infection that is deep and that's why when she is on IV antibiotics her fever goes away and she feels better, but the minute we take her off she is unwell again. They are hoping the PET will light up in any areas of over activity and this will guide them on where to go.
WAIT....it gets better.....on Friday while in clinic waiting for a room I started feeling really sick. I tried to hide it but the nurses and docs could see something was wrong. I was alone and started to panic so I finally spoke up and told them that I had an excruciating pain in my back/side. Julia's doc advised me to go across the street and check it out cause it may be my kidney. Of course I did not go and just popped some Advil and Robaxecet and was hoping it will all go away. Quite the opposite within hours I could not walk and it hurt to even breath. My mom took me to Women's College and we waited 5 hours in emerge just to be seen. As I continuously called Elio too check on Julia. After waiting 5 hours the doctor comes in and says it could be stones or a pinched nerve and could I come back Monday for an ultrasound and CT. I looked at him and just about bit his head off. I said listen I can't come back Monday as my daughter may be having her scans on Monday so give me some drugs to help with the pain and let me get back to my daughter. He prescribed me a muscle relaxer and pain killer which basically knocked me out all weekend. The good news is that I am feeling a little better, the bad news is I can't take the drugs because I need to be able to function in here so lets hope the pain doesn't come back. Julia's situation is really taking its toll both mentally and physically on all of us. I really want to go home with a healthy child and live some what of a "normal" life.
It will be a busy week in here as we make another attempt to figure out what is going on. I will keep you all updated as I know more. For now please keep Julia in your prayers.
Thanks for you support.