A harsh dose of reality and a path of continued hope

On my post last Friday, I told you I would update you and share events with you whether it be good or bad.  Here goes:

You may recall that Jack was having some issues with pressure on his brain due to a chiari malformation which is causing his brain stem and cerebral tonsils (yes you have more than one set of tonsils apparently) to get squeezed together causing some headache pain.  We were discussing the very distressful possibilty of a surgical procedure to help solve this issue.  With NF you just never know what is coming.  

Case in point:

We always send the scans done in Atlanta to his doctors in DC.  They read them yesterday and they detected what they believe (hope) is a low grade glioma on his brain stem.  For those of you who do not know, a glioma is a fancy term for tumor (at least that is how I define it).  Needless to say NOT good news.  In fact, terrible fucking news.  Dr. Packer told us yesterday to bring Jack up ASAP to discuss action plans and coordinate care between both cities (ATL & DC) so we can meet all of Jack’s needs and start killing this glioma.  Booked a flight for the three of us for today.  We hate, hate, hate to leave Luke and Grace behind but we have to keep things close to normal for them.

So it is that we fly to DC today, meet with the team on Wednesday and fly home Wednesday night.  We have had a number of people reach out and want to help and we will not be shy about taking you up on your offers. True to form, we are blessed to have Steve Rau in our lives and he has offered to put us up tonight, play lots of Wii with Jack and even make pancakes Wednesday morning!  Of course, there will be beers in the house too, otherwise I wouldn’t stay! Beth is also coordinating with doctors here in Atlanta while we take care of business in DC and we will follow up with them upon our return home.

Please keep thinking good thoughts for our boy.  Don’t know about you, but this picture from a few years back is right on in that it shows his personality which has only been enhanced with his age.  If you have had the pleasure and opportunity to meet him you will know what I am talking about.

Once again and with much appreciation, thanks

 

Jake, Beth, Jack, Luke & Grace