A complex relationship with a machine
As many of you know, Jack had his quarterly MRI last Monday. These exams are always anxiety producing regardless of why you find your child in that big constricting tube. It has become a norm for us and for Jack. It is part of his life and will be for the forseeable future and it is a bittersweet process. These machines tell us so much about Jack and I thank God for the fact that the technology exists. It is life changing and in many ways lifesaving. It also represents for me the entire lack of control that I have over this process we call #Jack’sJourney.
Sometimes I walk in and I want to hit the damn thing with a sledge hammer because I know it may give me information about my boy I don’t want to know. Sometimes it will give me information that I hope to hear. But EVERYTIME, every single time, I don’t know what that MRI machine will tell me. It really is a complex relationship. Perhaps the most complex. I love it and I hate it. I want to destroy it and I want to worship it all at the same time. There have been days when I simply want to destroy it. There have been days when I want to kneel before it in thanks. Then there are days that I want to do both. Like today.
Yesterday I played in a charity golf tournament for the great professionals in my city of Milton that are first responders. Firefighters, police, EMT’s who go above and beyond. I knew going into the tourney that we may hear MRI results but I wasn’t sure when they would come. In or around the 6th hole I got the email from Jack’s oncologist. I thought to myself let me wait. I am sure it is good news. Just wait and enjoy the company of friends and have the typical, terrible round of golf. Alas, I just couldn’t wait. So I hit my ball and retreated quickly back to the cart while my friends hit their shots (inevitably all better and further than mine).
There it was. The good news. Jack’s brainstem glioma was stable as was his complex plexiform neurofibroma in his left orbital area. A brief sigh and a sip of beer.
Then the bad news. Highlighted in yellow in the email: There has been significant interval increase in the syrinx in the upper cervical cord. Increased signal in the cord is again noted below the level of the syrinx. A dedicated MRI of the spine is recommended in further evaluation.
Two words I don’t like to see in the same phrase signifcant and increase. I put the phone down and moved on down the fairway and played out the hole. I texted Beth. We were making plans on next steps before I tee’d off on the 7th hole. The syrinx is a relatively recent issue in Jack’s history but it is a complex situation. As I was trying to conribute to the team, I utlimately found my thoughts straying elsewhere. Google searches on a phone on a fairway about syrinx’s, prognosis and complications will never help your score. However, if you have ever played with me you know even this news is not an excuse for my play.
We will learn soon of what the next MRI on his spine reveals. I may or may not bring my sledgehammer. If I do, maybe my good friends at Milton PD will help me out (kidding, of course). Surgery on his spine is possible. As I have always said, I wil share with you the good and the bad. Keep Jack in your thoughts. Will update whe we have more to share.
On another note save some thoughts and prayers for our neighbor Mary Elizabeth Paris. She is fighting (AML) Leukemia and she and her family have requested prayers for her. An incredible 11 year-old girl with a great family who are fighting the battle of her life.
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
