FRUSTRATION...
Today, I took Tanner to the geneticist here in Jacksonville. The only reason we went was to add her to our 'team.' I am tired of having a team. Tanner is fine and is doing well in so many areas. Despite this, the doctor asked (many times)...'How can I help you today?' This is so frustrating to me! I didn't ask to come to see her. The oncologist sent us here. She then proceeded to question why we ever did chemo in the first place. Next, she asked why we did genetic testing since he 'obviously' has NF. I have never felt like such an idiot. I carefully explained that we didn't make these decisions without information from well-respected doctors and numerous opinions. Her recommendation for 'kids like Tanner' is that we just do an MRI every year and see what happens. She asked me to think carefully about whether we were treating his symptoms or our anxieties (I am not kidding, she really said that). She then told me that she would see us in six months so that she could give us a name and number for a doctor in Maryland (for our next move). She started to leave and came back and asked if Tanner looked like anyone in our family. I told her that he is an exact replica of his dad and she asked, 'even the ears?' Uhhhh....I guess. Anyway, she said that she thinks maybe Tanner has NOONAN'S SYNDROME. Great. She then recommended neuro-cognitive testing because so many kids have learning disabilities. I told her that Tanner has just started reading and is doing simple addition and subtraction. Her response...'many parents believe their kids can read because they memorize books.' (Yep. She really said that.) I informed her that I have a Master's degree in Education and I am well aware that 'some' kids memorize books and Tanner did that as well, last year. Don't get me wrong, I have no problem with the neuro-cognitive testing but the approach was unbelievable. She said she thought the plexiform neurofibroma on his back feels 'full' but that she hasn't seen the MRI so she doesn't know. She also found another on under his left arm. Great. Let's see...what else? Oh yeah, she doesn't believe in treating with chemo unless there is vision loss. I told her that opthamology wanted to see Tanner after his next MRI and do vision field testing again. She informed me that she doesn't really think vision field testing is accurate anyway. Her final piece of information for me was to ask me what I knew about NF and it's relation to other malignancies. I told her that I knew there was a higher risk. She said, 'Yes, but there is a MUCH higher risk for kids that already have optic gliomas.' She then said, 'See you in 6 months!' Not a great day in our NF world. I am tired of doctors contradicting each other and acting like other doctors are wrong for what they have done. I am tired of the unknown.
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