tough question. tougher answer. toughest kid.

On Friday, Beth and I took Jack in for his MRI.  We have made that trip so many times with him.  A few days before the feeling starts to kick in. One I can’t describe, one you have to experience, and one I hope you never do.   The anticipation, the loss of control, the inability to change the path again for my boy all comes back.  I resent the familiarity of this process so much.  I wish it were not so familiar.  But it is and it shouldn’t be at all.  I hate that it is too familiar to this 11 year old or for any child really.  The one thing I can see as a “benefit” is that he now knows what to expect so it eliminates most of his fears.  He now knows the drill such that he dictates how the process will go to some extent.  “I like warm compresses on my hands please.  Helps the needle, you know.  May I please have the numbing cream too?  Use my left hand; I think the veins are better.  Don’t forget to flush the needle after please.  They forgot once during chemo and they had to re-access my port.  That sucked.”  I watch and observe this boy and for a moment and forget he is my son like I am watching some show on TV and I marvel at the kid who is giving orders.  I shake my head at how matter of fact he is, how POLITE and compliant he is with everyone.  And I am glad I know him in those moments.  For a very brief time, not too long, he is a character I am watching.  

And then it happens.  He reminds me why I am there.  He innocently and correctly pulls me back in so as to be sure we are riding together.  I got my few minutes, now snap out of it Dad. He is getting ready to go back in again.  Proud to tell people that even though he is a kid, he doesn’t need to be sedated. He can do it however they want him to do it.  He can and does endure.  The team leaves the room for a few minutes and then it is just Jack, Beth and I.  In the stillness of the room, we know why we are there.  We hate it but we muster up jokes and small talk and “usual” family conversation.  And then it happens.  He is not a baby anymore.  He has a question.

“Am I going to have to do this for the rest of my life?” I beg in my head for a minute to collect my thoughts, pretending I didn’t hear the question.  “What’s that, Beansie? What did you say?”asking the question I already knew the answer to. “Am I going to have to do this for the rest of my life?”

Boom. How do I answer that? Answer it factually as best I can without a hint of concern or worry and the whole time knowing that I have the same exact question and want the right answer too.  I told him I didn’t know.  Beth chimed in to help as she is always so great and explained that it was hard to know but that as he continues to be watched and there are no signs of tumor growth that the MRI’s will likely get less frequent.  “OK”, he said somewhat suspiciously.  “I hope they get less and less”.  I wrestled with the fact that I can’t give him the answer he wants and as I was about to add some meaningless afterthought, the team came into the room to take him.

New rules dictate that only one parent at a time can go in with him to the MRI room.  Stupid rules, by the way.  We decided that Beth would go this time.  About 90 minutes later, he returned alittle irritated and anxious to just get out. I hugged him and gave him a high five and started to help him get dressed.  He had his gown off and pants back on when the technician came in and announced that they had to take more pictures.  He looked at me with a What The F*ck look on his face, but always being respectful he said nothing and got back in the gown. I was angry for him.  It is such a pain in the neck and he thought he was home free having done his part.  But, alas he had to go back in.

About 20-30 minutes later he came back out and looked at me and said, “let’s go!”  I didn’t blame him.  So we left and returned home.  We should have results by Tuesday and we have no reason to believe that there will be anything but “stable” coming back.  Another battle fought and won in this war of his.  Another “Battle Bracelet” earned.

Tomorrow there is hope and you are among the reasons why.  Don’t ever forget that. EVER. #ENDNF #FNF

Thanks,

Jake, Beth, Jack, Luke and Grace

PS

Our next golf event is on September 16th, 2016 at the Lost Tree Club in North Palm Beach.  Click on the link for more info!  https://www.501auctions.com/curenfwithjackpb