Jake's Blog

Lesson Taught...Lessons Learned

Jack the teacher
As I write this update, Jacko is getting ready for WEEK SIX of his chemo treatments. I told myself I would do these about once a week but alas it just gets harder to find time and find words. With that in mind... Here goes. About 3 weeks ago as Jack was getting ready for week 3, he presented to his fellow second graders.  The topic was about Neurofibromatosis, how the disorder impacts him and... Continue Reading

How do you eat the elephant? One bite at a time....

It has been a few weeks since my last update.  Apparently people are reading the updates because I have been asked when the next one was coming.  Hard to find the words sometimes, so sorry for the delay.  As I write this, Jack has completed two of the FIFTY TWO chemo sessions.  The Carboplatin and Vincristine regimen he is on has caused him some jaw pain that makes him not want to eat.  It was... Continue Reading

T'was the night before chemo....

I don't have anything cute or deep or inspiring to say tonight.  I am just a Dad waiting for his son to have chemo tomorrow.  I am not unique unfortunately but it doesn't make it easier.  I spent a bit of the day with him, Starbucks in the morning and a special post-school movie.  I just wanted it to be a good day for him.  I won't go on too long tonight, not much more to say.  I know this... my... Continue Reading

Tonsils, Triumph and Tribulation

Jake and Jack
It has been several weeks since our last update.  Lots to report and as I warned before, if you want to read on…it is a combo of good and bad. Let’s start with Jack’s biggest supporter. Luke.  He has been suffering for quite awhile with tonsils and adenoids thatjust constantly make him sick and uncomfortable.  Tomorrow he has surgery to remove them and get on a path of comfort and restful sleep... Continue Reading

HE did NOT sign up for this...but Beth and I kinda did

Who ya gonna call?
If you have been following the latest news over the past 7 days about Jack you know that it has not been good.  In a matter of seven days we learned quickly about chiari malformations, cerebral tonsils, CSF, brain stem tumors and the list goes on.  What started as an annual (routine) MRI set us on a course we hoped we would not have to travel.  One that many parents inside and outside the NF... Continue Reading

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... Continue Reading