Jack Burke, NF, MRI’s and Progression

If you are reading this then you were probably redirected from facebook. The last 24 hours has been very challenging for us.  As you may know, yesterday Jack had yet another MRI.  Again, he came through it amazingly well and is a very courageous 8 year old.  I’m saddened to say that he has become used to a process that no child should get used to. Ever.  I posted the update yesterday about his courage and a few hundred of you responded with very positive feedback.  While the scan went well the results were a cause for alarm from his doctors. We were asked to immediately bring him to the emergency room to be seen my a neurologist.  At 8 PM last night we checked into the emergency room and based on some observations and discussions it was decided to admit him.  In a matter of hours NF fucked with us again.  The attending doctor began to tell us that he will likely need surgery within days so they can put a shunt in his brain to relieve pressure that has been created causing his headaches.  I was devastated.  This was not happening.  No F’n way.  But it was.  Quickly, Beth and I decided that we would need consensus from others doctors that this was the path to go down and although they were prepping for brain surgery they were not going to do anything until we got our answers.  In a matter of hours it went from imminent surgery to let’s step back and watch for a bit.  He will likely need a procedure and I won’t go into details on that yet.  For now we observe, engage with him and consult with his physicians.  In the very near future we will scan and see what shows up.  Of course if things get worse we will react as well with appropriate and informed action plan.

At this point I want to share a few thoughts:

1. Thanks for being interested and caring.  You have NO IDEA how much it means to us and Jack that you comment or “like” the updates. It reassures him how much support he has behind him and I truly believe it gives him strength and confidence to look right at the needles as they go in while we turn away (literally).  He is scared but not fearful.  He is courage in every sense of the word.  

2.  You may feel that we share too much of his story to the world.  We debate about this often and have asked opinions of some of you.  Our decision is that by sharing with others who care it raises awareness and hope and gives Jack support that we otherwise could not get for him in this very tangible way.  I suggest if you like these updates then get ready for more.  Many of them will hopefully continue to be positive but we are going to present the whole picture to you where ever it leads.  He wants us to do that too. “It will make them think about me and the other kids Dad.”  If that is too much for you I suggest you stop following me and CureNFwithJack on Facebook. And if that is your decision it has no change on how I feel about you…it’s all good.  I get it.

3.  Know that you are appreciated whether you give your time, talent or treasure or all three!  If you are reading updates, commenting, liking, emailing, tweeting, researching or just lurking you are impactful.  If you want to do something more, if you want to ask me any questions about our challenge just let me know.  It’s cool.

4. If you are here you may be discovering Jack’s page for the first time.  This is a work in progress and a labor of love from our good friend Casey Fox who was Jack’s nanny a few years ago.  Come back and visit for updates and events.

 

Thank you

Jake and Beth

Jack , Luke and Grace