Sara had her 6 mos. check with her oncologist yesterday. But we didn't get to see him, which kind of bummed me out. The hospital messed up the timing, told me 3:30 but put 2:30 in the computer. So he had to leave before we got there. I hate the fact that he left thinking we were late! But we saw his assistant, Molly, and she reassured me that she would let him know about the mix up.
Molly was great, as she always is. She gave Sara a once over, checking her heart, lungs, eyes, ears, etc. She asked Sara about how her leg was feeling, and how school was. Sara came to this appt. straight from a vacation in Breckenridge with her dad, so Sara had some new things to show off. One such thing is a new license plate for her wheelchair with her name on it and Breckenridge, CO.
I'm so glad that Sara is now old enough to express to the doctors what she is feeling. Before I always had to guess, and its nice to know that she can do it now. It also makes me happy that because Sara is able to express her opinions and how she's feeling that she can be much more involved in her own care. Since she's the one who has to go through it, I like the idea that now she can have some kind of say in things. Molly asked her if she would mind having another MRI soon, and Sara said it was fine...but commented that she doesn't like the mask they put on her face.
The only real things we discussed at Sara's appt. was when her next MRI would be and at what point she needed to attend NF Clinic. They are making some changes to the NF Clinic, which I'm really excited about. They are enlarging the program and becoming an NF consortium site. This means they will be more involved with drug trials and other on going research. And that means more possible treatment options in the future. At this point, there is no plan to change any of Sara's current treatments since she's doing so well. There is also no plans to enroll her in any drug trails for the same reason.
Sara will return to NF clinic in November, most likely. She will also have her MRI then as well. I'm not sure what all we will be scanning at that time, but I would like to do a whole body scan if the insurance will allow it. We haven't done one since she was a year old, and it would just be nice to know that in the last couple years she hasn't developed a new tumor anywhere that we don't know about. I still need to talk to the doctor about it, so we'll just have to wait and see what he thinks. As always, as soon as everything is scheduled, I will post it on the right side of the blog so you can all check when it is.