HE did NOT sign up for this…but Beth and I kinda did

If you have been following the latest news over the past 7 days about Jack you know that it has not been good.  In a matter of seven days we learned quickly about chiari malformations, cerebral tonsils, CSF, brain stem tumors and the list goes on.  What started as an annual (routine) MRI set us on a course we hoped we would not have to travel.  One that many parents inside and outside the NF community have traveled.  On Monday, we were told to get Jack to DC to see his doctors on Wednesday.  We went up and had a great night with Steve Rau, Matt Benson, Carol O’Connell, Pete Norton and Dan Allen.  Jack loved being with his “adult friends” and it was very comforting for Beth and I to be surrounded by these concerned friends and Jack fighters.  Yesterday we met with one of the best known physicians in the world who has been caring for Jack for years.  Dr. Packer is a neurologist who specializes in NF. Frankly, if he was in Timbuktu we would have flown there.  

He did not have great news.  He discovered a glioma on Jack’s brain stem. He needs help immediately.  NF kids can’t be radiated and surgery is not an option.  He will begin 15 months of chemotherapy next week to battle this glioma and shrink it and kill it. He will be receiving treatment here in Atlanta and be monitored by the best in the world here in Atlanta and DC.  It will, no doubt, be a long road.  I would gladly take this burden if I could…but I can’t.  

The title of this entry may puzzle you so let me explain.  On the way home yesterday I kept saying to myself that this kid just didn’t sign up for this shit. Over and over again.  So sad.  But as his Dad I did.  You see the day he was born I assumed and accepted the entirety of this amazing life before me.  I would live for him and I would die for him if I had to.  I would do anything for him.  For all of my children.  So in a weird way I signed up for this.  If you are a parent or have a relationship with someone you truly love than you know what I mean.  I think that is almost everyone reading this.  So, even though he is just 8..it is his battle.  He has to do the treatments.  He has to react. He has to get tired. He has to get sick. He has to get better.  We just have to do as much as we can along side of him and that is what we will do. It is what we signed up for 8 plus years ago.

We have been overwhelmed by the outreach and concern for Jack and our family.  We are fortunate to have great friends and family close by and far away.  People we have known for decades…and others for just days.  All concerned for Jack and our family. Keep your support going.  Change your profile picture to his logo, like a picture, share a thought, send a message, attend a golf tournament or event, donate $10.  SHARE HIS STORY ON YOUR PAGE. Tell people to like his page (over 500 people did that).  1700 people saw my last update!  1700!  I don’t know 1700 people.  Now I do.  

So it is.  There is no room for negativity.  No room for wallowing.  No room for despair.  Hope, medicine, courage, tenacity, positive feelings, humor and love.  Play your role. However you define it. It is important.  Believe me.  Your impact is immense. No doubt these updates will get harder and I am not looking forward to explaining this to Jack and Luke but we will do so soon.  

Please keep Lukey in your thoughts too.  He is a tough but sensitive and caring little brother who will understand a lot but also have scary moments and thoughts.  We love him and Grace dearly and thankfully most of this will go over Grace’s head. Not so with Luke.  So remember him too.  Jack will want that too.

Stay with Jack folks.  Be with him.  You will get way more back than you will ever give.  Trust me.  I know.

Thanks again,

Jake, Beth, Jack, Luke and Grace