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 trash and went to my office and cried alone for a few seconds.  I did that a lot during his treatments.  I regained my composure and sat with my thoughts for a few minutes.  Then I got up and went back to the kitchen trashcan and retrieved his bracelet.  I squeezed it hard in my hand perhaps hopeful it would disappear along with the rest of our reality. I walked back to my desk and looked at it and saw all the identifiers I did not want to see.  MY son’s name JACK O’BRIEN BURKE.  It had his birth date. It is how the hospital identified him.  “It was not his identity”, I thought out loudly to myself and I was not going to let it be his identity.  My office has a little trash can and I leaned over to discard the bracelet again and I stopped. Instead, I put it in the top drawer of my desk.  It was my reminder that this is the battle we were fighting.  It is HIS battle and he has the bracelet to prove it.  We were just fighting along side him.  The next week came and again, so did a bracelet.  I kept that one too. Week after week, bracelet after bracelet, battle after battle I just kept collecting and keeping these mementos of his battle.  

With tremendous respect to my friends and family in the military I came to think of these bracelets as his battle medals.  They became proof of the enormity of his fight.  A tactile reminder of what he has endured much like military medals recognize a soldier’s battle experience. This analogy is not to minimize the real-war experiences of military personnel nor does it serve to overstate Jack’s experience so I hope it is not taken that way.  It occurred to me that they and Jack were in fights for their lives and the medal/bracelet reminds all of that fact. The thing is though; Jack does not get to “leave” the battlefield.  NF does not allow him to leave.  He is fighting every day. Little battles.  Big battles. Everyday. Fortunately, Jack has his platoon of brothers/sisters in arms.  He has you and all those that you have asked to join his fight… We are going to keep fighting and are happy to have you with him.

A few weeks back Jack stopped receiving chemotherapy.  2 weeks after that he got an MRI to determine if the tumor on his brainstem had shrunk.  The anxiety during that time was excruciating and palpable.  We were fortunate that we got “good news” which I shared via social media and email.  I also indicated at the time that it was a complex situation and I would explain more “later”.  Well, later is now.  Jack still has a brain tumor. Period.  He is not cured.  Jack still has a plexiform neurofibroma in his left orbital area.  He is not cured. Jack still has Neurofibromatosis Type 1.  He is not cured.  He has been treated, not cured.  

Make no mistake about it; we were pleased and relieved when we got the news that his brain tumor “shrunk”. It decreased after 48 weeks of chemo by 10mmx 20mm.  That doesn’t sound like much but I can tell you that if it GREW by that much I would have been devastated. As his Dad, I was hoping for more.  I was hoping for a lot more.  But NF makes those calls, not me.  I can’t control that process. Science and “current available treatments” control that process.  

We are grateful for the progress in treating NF but we are far from satisfied. Our boy isn’t cured.  What’s worse the pathology of the disorder is such that we have NO IDEA what lies ahead.  So we need to continue to fight the battle.   We will continue to leverage our successes. 2015 will have us finding new ways to raise awareness and dollars as well.  It’s not over.  We look ahead.  But we don’t forget our past.

Tomorrow there is HOPE and you are among the reasons why.  Don’t ever forget that fact. EVER

Happy Thanksgiving!

Jake, Beth, Jack. Luke and Grace Burke