follow up and results

Part One: The Run Around

We were told by Keagan's doctors to get an MRI every 6 months for the rest of his life.  Well, at six months AD (after diagnosis), James and I were separated and I was living at my mom's in DEEP South Texas.  I had 2 months worth of Tricare drama, which has been par for the course whenever I go to visit, because she's so far from a post or base of any kind that none of the doctors down there take my insurance (which is BOGUS to me but that could be another post in itself and I'm trying to stay focused).  Long story short, a follow up MRI proved to be next to impossible, and as James and I were working to reconcile by the time the dust settled and I had an uphill fight on my hands, I decided to just wait until we got to Bragg.

When we got out to NC, I made an appointment with his primary care physician on post.  As you milspouses will know, on post PCP = a certain hallway, where you take your chances on who you are seen by.  Just my luck, I got a physician's assistant with crossed eyes (you try making eye contact when you can't tell which eye is the good eye and which is the bad!) and not a clue in his head of what I was talking about.  I had to tell HIM about Keagan's condition, and explain what I needed from him as far as a referral for a sedated MRI, and on and on.  So when we FINALLY got the sedated MRI scheduled at the on base hospital, the hospital told me that they required a sedation physical (which I felt like the PA should've KNOWN, and done, as he gave us the referral) before they could complete the procedure.  Alright, fine, so we went BACK to the clinic, where I had to once again explain what I needed from the PA.  He cleared Keagan for the MRI, and off we went.  When we got to Womack on the day of his procedure, they hemmed and hawed around basically not wanting to take the liability of something going wrong.  So they sent us home, with a referral to Cape Fear Valley hospital.  I called, they didn't have the referral.  I called back, they still didn't have it.  After two weeks, they finally called me, only to say that they do pediatric MRIs once a week and the wait time was 6 weeks.  When we fiiiiiinally got in to Cape Fear, they did the MRI with no problem.

Then came time to follow up with his PCP (the REAL PCP this time, not "Crazy Eyes"), but that was another 2 (or more?) week wait until they finally had the results in hand.  Once I sat down with his PCP (who also had to look up his condition by the way... but at least she educated herself instead of just asking me for the rundown), she read off his results.


Part Two: Results


His CM has progressed in 10 months by about 40-50%.  He now has a low-lying portion that is descended by about 10mm.  There is still no fluid around his brain (which could cause seizures or brain damage), but the radiologist who made the report requested that further imaging of his spine to check for damages further down.  We currently have a follow up scheduled with a pediatric neurologist/ neurosurgeon on February 4th.

I'm not sure how to put my feelings into words at this point.  To say that I was hoping for a miracle is the biggest understatement.  I know that I prayed so hard for this to just be a fluke, to disappear, and hearing that it had progressed to such an extent was a sucker punch to my heart.  I don't have tears for it yet, although they clog my throat as I write this, because I don't know what happens next.  Surgery is a very strong possibility.  There's just as much possibility that the doctor will tell us to continue to wait and watch.  It's terrifying to consider that this lurking danger is moving slowly forward, trying to claim my son.  I have no means to fight, except to continue to watch and pray.  I have to depend entirely on God and medicine to save my baby... and it's such a helpless feeling.