1/25/12 - So what did the eye doctor say? And what were the MRI/spinal tap results??

What a day, what a day!!  Today had to be the longest day Haylee and I have had thus far.  Her MRI was scheduled for 8am and we signed in for the MRI at...8am on the nose.  We were taken back shortly after and set up to get ready for the test.  At 8:30, we were told they were already backed up and it would be a while before she had the test done.  I don't understand the happenings of a hospital but what on earth could have been going on before 8am?!  By 9:30, they were ready to take her back.  They gave her the Propofol and she was out within seconds.  I went upstairs to get her a bagel with cream cheese since she couldn't have anything to eat after 3am this morning and no fluids after 7am (she had eyed a bagel on our way down to MRI).  I had a small bowl of grits while I waited (I wasn't going to eat in front of her!).  By 10:15, Haylee was out of the MRI but had her spinal tap done shortly after.  I was able to go back in her room with her and her nurse, Lisa, left her under the Propofol while her back recovered from the spinal tap for 30 minutes. At 10:45, she was taken off the Propofol and she was awake within 10 minutes.  She was a little wobbly at first but she found her legs and off we went to the Emory Eye Clinic.
Haylee's eye appointment was at 9:10 but since the MRI and spinal tap was running behind, they worked her in.  We got to walk the infamous 'tunnel' from Egleston to Emory.  It was more like a hallway and not nearly as long as people said it was.  We got there at 11:15ish and after we checked in, it was 12:30 before we were called back.  She had about 3 different people give her different exams, 1 person take color photos of her eyes, and 1 person take an ultrasound of her eyes.  After everything was all done, Dr. Hubbard finally came in and looked her over (at this point it was after 3pm....).  He really couldn't give me any answers other than he wants her to see an optic nerve specialist (yes, there is such a thing) and he wants to see her back in a month.  When I asked what could cause her optic nerves to swell like that, he said that it was possible the chemo she's been on could have been a culprit. 
We finally got over to infusion at 3:30pm (they were calling wondering where we were!).  We got started about 3:45.  Dr. Abdella came by and went over the findings with me.  The MRI and spinal tap results came back normal but they think she is developing something called 'pseudo-tumor-celebri'.  It means "fake tumor in the head".  She DOES NOT have a tumor, nor will she develop one.  I repeat, she DOES NOT have a tumor in her head or anywhere for that matter.  Basically, what it means is that Haylee's has developed the symptoms of a tumor in her head but without the tumor.  It's like when a woman's body develops pregnancy symptoms but isn't pregnant.  They think the ATRA is causing it all.  Dr. Abdella said she found documentation where this has happened.  Since she has been off the ATRA since January 16 and will not go back on it until February 20, they think they will be able to find out for sure if it really is the ATRA.  She has an appointment on February 7 and should see Dr. Hubbard again before the 20th.  If the swelling goes down on its own from now until the 7th and then again at the next appointment, then the ATRA is the problem.  If not, well I don't know!  If it turns out it's the ATRA, a few things can happen.  1 - they could decrease the dosage of the ATRA by no more than 25%.  2 - they could do spinal taps to keep relieving pressure while she's on ATRA. 3 - they could give her a medication to reduce the pressure and give the regular dose of ATRA.  The ATRA is a HUGE part of the treatment for this particular leukemia so it is a necessity; we just have to figure out what to do and the eye doctors are the ones to tell the next step for the next cycle.  She is scheduled for another spinal tap next week to relive some pressure in her head.  Haylee is in good spirits, handling everything SO well.  She's not having headaches or pain anywhere.  What can I say...she's a ROCKSTAR!!!

On a very good note:  she does not have leukemia in her eyes nor does she have an infection or a fungus.  Since her spinal tap came back normal, it also most likely means she does not have leukemia in her spinal cord or fluid :)