Jake's Blog

I'm not scared, I'm worried.

The boy
Today was bad.  Not as bad as some, but more than most.  This was a tough week in that the priest who married Beth and I passed away and we had the funeral today. Almost 12 years ago on May 17th (World NF day) in coincidences to end all coincidences, he lovingly and graciously married us.  Today we said goodbye.  Earlier in the day, Beth and I had a follow up meeting with Jack's doctor(s)... Continue Reading

Affirmation Day

Today was one of those NF days.  All that really means is that the day is likely going to suck.  Specifically, Jack was experiencing pretty bad leg pain for the last 24 hours.  Now, it more than likely is nothing but last night in anticipation of a doctor's visit many things go through the mind and now HIS mind too.  Dad, he asked, it's not a tumor doing that, right?  He's 10 now. He gets it.  I... Continue Reading

TEN...It is a big deal.

baby boy
"And what would you intend to find?  Solitude? Your peace of mind?Holding out for something lessThan touching the hand of God?"-Kevin Griffin, Better Than Ezra.  "Closer" The video is an oldie but goodie and the song that accompanies it was written about a new Dad experiencing fatherhood for the first time.  We played it often when we were expecting each of our children.  Kevin is a supporter of... Continue Reading

Sometimes magic is not about the tricks...

2014.  Quite a year for the Burke's. For many reasons it is one I am not too anxious to ever repeat. Yet in the midst of some pretty terrible circumstances we found and experienced incredible caring, grace, love, and triumph.  The accompanying video is Jack's entry into his school talent show last week.  He decided to do 3 tricks.  Our good friend, Duane Codrington was there to film his beautiful... Continue Reading

Battle Bracelets

Battle Bracelets
About 2-3 weeks into Jack's treatment we were driving home and he asked me to "get rid" of his white hospital bracelet.  When we got home he ran to the kitchen and got the scissors for me to cut it off.  "I hate these things Dad".  I didn't have to ask why.  I knew.  First, it reminded him that he is sick and needs chemotherapy. Secondly, they are irritating.  After I cut it off I threw it in the... Continue Reading

A Hero meets a Legend on a roller coaster

Hero meets Legend
There is so much to write about and share with you.  First and most importantly is that Jack is no longer receiving chemotherapy treatments.  He has endured 48 weeks of this treatment and we are now glad it is over.  On the very last week he came down with awful, debilitating mouth sores and perhaps the last 2 weeks were the worst of the entire process.  So there is joy in that he has completed... Continue Reading