UGH is really all I want to say....but I'll fill you guys in as to where things stand right now in my world.
Yesterday we had an appointment scheduled for my daughter at Children's Hospital of Philadelphia to find out more about the tumor in her femur, and further discuss her ongoing bilateral knee pain (she's almost 16). Her appointment was at 10:30 and my follow up appt with my OS at University of Penn was at 1:10.
We arrived for my daughter's appt at 10:15, but were not seen by the doctor until 1:30. When I say I was annoyed and totally mad, that is an understatement! On top of that, the doctor spent about 2 minutes examining her, and talking to her, then all he wanted to discuss was this research study he was working on and wanted us to fill out paperwork to "enroll" her in his study. I have had many other wonderful experiences with CHOP in the past, but this was not one of them. I will not bring her back there...she will start seeing my OS at Penn.
In the mean time, I left there with a PT script so she can continue to strengthen, so that is our plan for now. In our short discussion, the CHOP doctor told me that her tumor was nothing to worry about, it's 1cm in diameter and it's a benign fibrous mass that is very common in adolescents. I might have the local ortho re-xray her in about a year just to make sure it doesn't grow - and go from there.
So, since the CHOP doctor saw my daughter 3 hours after her appointment time, I had to reschedule my OS appt until March 11th. No big deal, except for the addition of the ankle issues. My operated knee is definitely feeling the wrath of walking in a boot. I've had swelling and stiffness problems (icing and elevating as much as humanly possible). I am also watching for possible clots, and I have a sinking feeling I might have one. I made an appointment with the local ortho doctor that set me up in the boot (tomorrow morning) to check.
That's it for now. Thanks for those of you that have stuck with me. What a ride!