I am happy to report that Julia's PET/CT on Tuesday was good. There were still a few lymphnodes but they were all within normal size. Our oncologist was pleased and this is what she expected. Based on these results we are stopping chemo and watching and waiting until we are ready for New York. We do not want to over use chemo and reserve it for when we need it. This makes me incredibly nervous but I trust in Julia's doctor, she is terrific. All the staff at Sick Kids have been tremendous. Those poor nurses who have to put up with Julia deserve metals. She sure gives them a hard time but most of them have the patience of a saint. I tell you they probably finish their shift exhausted after having Julia. I don't know why but Julia is not handling the hospital days very well. She fights everything and we spend our days controlling temper tantrums or negotiating vitals. We are so lucky the staff is good to her. I hope New York will be as good....
Elio and I gave our blood on Tuesday and it has been shipped to New York. For now we wait for word from New York on the results. Everything has come together and the staff at Sick Kids have done an excellent job getting everything in order for us. We are basically ready to go when they call for us. We expect that if Julia remains well we won't leave for New York until September.
Julia is home and feeling well. She is playing and almost doing what every 5 year old would be doing. She is however limited with her line, but she doesn't let that bother her. I look at her every day and cry for all shes had to endure. I'm grateful for how strong she has been but I fear the day when she can no longer be strong. It's funny I thought that when we got out of the hospital things would be more normal but I'm realizing that our lives will never be normal. I spend everyday living in fear and wondering what tomorrow will bring.
Yesterday Julia visited with a mother from Sick Kids who lost her daughter and when she came home she asked me some tough questions about where her daughter was. She asked about angels, and how you become an angel, and why did this little girl become an angel so small. Interestingly she said "mom, I don't know what they did to her?". When I asked who? she said the nurses and doctors. You could see she was thinking about it and trying to figure out what happened. Imagine.....talking to your 5 year old about death and angels. I cried so much during our conversation I was lost for words. How could I possibly explain such a cruel, unfair world we live in.
Thanks to everyone for your continued support without it I don't think I could get through this. I know I'm still really bad at returning calls but please bare with me. Things have been really busy and there are good days and bad. I will continue to keep you all posted on Julia's progress.