Monday, June 10, 2013

MD Anderson and Texas Children's Appointments

I'm writing this half paying attention/ half with a melted brain so please forgive grammar/spelling mistakes.

LONG STORY:  (scroll down if you want to just read about the results)
What a day.  We were told we had an appointment at 9:50 at Texas Children's.  We were also told we had our first MD Anderson appointment at 11:00.  I thought we may be pushing it a LITTLE, but boy was I wrong.

The day prior I had received an email saying we needed to "register" at MD Anderson at 9:30.  We arrived in the hospital district around 8:30 and figured we'd be proactive.  We thought we could "register" early (thinking this was just paperwork) but, apparently when you start the registration process it means you're ready to be seen.
So we screwed that up right off the bat and had to leave and left the poor lady in registration with the troubling of calling and canceling our status.
Off walking to Children's for our first appointment. (We were told it was "right across the street" but it was a good 10 minute super fast walk).  We got there at 9:20 for our "9:50" appointment since I always am a little early.  Well apparently- it's a 9:50 CHECK IN with a 10:10 appointment.  UGH.  And.... Cue panic.  How are we supposed to get from Children's to MD Anderson by 11:00??

We weren't even called back until 10:40. I was freaking out but  we were sure we kept the patient relations lady at MD Anderson updated and the AMAZING MD Anderson neuro-oncologist told us just to show up when we were done!  What specialist does that!?

We made it to MD Anderson around 11:50 and sat until 1:00.  We saw the neurosurgeon at 1:03 (we had a 1:00 appointment).  MD Anderson ROCKS at punctuality.  The neuro-oncologist came in shortly after and we were done around 2:00.

We are all exhausted but pretty happy with the second opinions.  The doctors were all wonderful and kind and ?thankfully all shared the same view on what to do-- wait and see.


So what did they say??  Basically- at Children's the neuro-oncologist was a little more hesitant to actually label what Liam has as a "glioma".  He just said 'whatever it is, it's there'.  He basically said he can't be sure of anything unless it grows or goes away.  (GOES AWAY!?  It can do that?!)  He feels as though we may benefit from having a blood test to check for neurofibromatosis (NF) and he would check with the guys in that department to see if they agreed.  At MD Anderson the neurosurgeon (who was the NICEST surgeon I've ever met) explained in depth how a surgery could possibly be done IF the tumor grows a lot- but he'd recommend doing nothing but serial MRIs for now.  The MD Anderson neuro-onc said he'd do the genetic test for NF but basically do the serial MRIs for now.

Interestingly- the all commented that Liam's strabismus was barely noticeable.  On the car ride home I made an appointment for a "re-measure" of his eyes because now I'm worried they will be over-correcting his strabismus.  Magically- they had an opening tomorrow at 8 AM.

Another doctor's appointment.  It seems never-ending.


  1. what a day! glad to hear things went well and everyone seemed to be in agreement to wait and see. Thinking about all of you!