Jake's Blog

9 years and 9 million lessons

all grown up
As I write this Jack is going to sleep with anticipation of celebrating his 9th birthday tomorrow.  Like most soon-to-be 9 year-olds he is pretty excited.  Unlike most he had an appointment for chemo today.  I don't want to make this update too much about that however.  Just know that today his counts were too low and he could not receive chemo.  Essentially I am learning as I go here but the... Continue Reading

If love were the currency for a cure

The Boston Stars
Welcome to 2014 and the latest update on Jack's fight.  Lots to share.  And the usual rules apply:  the good and the not so good included.  We have been extremely blessed by the generosity of friends, family and strangers alike particularly since Jack's glioma diagnosis and certainly during the holidays.  We have received care packages from the McLaughlin's, Gordon's, Fagan's, Palbicke's, Davis'... Continue Reading


Several weeks ago, Jack went to his typical chemo infusion.  It started off as usual – first to the front desk to get his wrist band after numbing cream is applied to his port, blood work and weigh-in with the nurse, the 100-point check list with another nurse, and the wait to see the oncologist, before the wait (and wait) in the infusion room.  When Jack’s oncologist came in, he of course asked... Continue Reading

Week 9: The haircut can wait.

Gratitude, hope, faith and friendship
Tomorrow is the 9th week of Jack's chemotherapy.  God how I hate this.  I always like to have my boy's hair neat and on the short side.  I don't know why, but perhaps I inherited that from my Dad.  I was brushing Jack's hair this morning before school and I said to him...we have to get this hair cut.  He didn't say much, he was pretty tired and suffering an upset stomach.  As I said that, I... Continue Reading

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