I’m not scared, I’m worried.

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) regarding his MRI reading as it relates to his brainstem glioma and NF.  It did not go well.  At all. Worlds do collide.

It seems that in the 4 months since his forty eight f’ing weeks of chemo to shrink his tumor by 5 MM it only took 16 weeks to get 20% of it back.  I don’t apologize for the sentiment or the language.  Additionally, my boy has developed a Syrinx on his spinal column that may require surgery.  These “little gems” can cause Jack to lose feeling in his upper extremeties (arms/hands), faux sensation to heat/cold and another myriad of symptoms. He is asymptomatic currently but we don’t know how that may change. It may stabilize itself or it may grow larger necessitating spinal surgery.  More info is available by clicking http://www.chiaricare.com/Related-Disorders/Syringomyelia.aspx

His tumor may continue to launch a “comeback” or stabilize, we don’t know.  Fun right?  His current course of treatment is to watch the progression.  Watch the Syrinx.  Watch the glioma. Watch for symptoms. Instead of an MRI every 6 months he will now receive one every 3 months.  His port (which he hates) is to stay in for now.  He heard that today.

Jack and I went to a post-appointment lunch.  I am a big spender so we went to Subway.  Eat fresh.  We sat down and I simply had nothing to say. We split our tuna sub and began munching away.  I stopped and looked at him as he pounded down the sour cream and onion chips.  I asked him, “Are you ok?”.  “Yeah”.  Was the 10 year-old response.  I DIDN’T want to ask the next question, but I did.  I am his father after all.  “Are you scared? Is something bothering you?” He looked at me for about 5 seconds and responded as I munched on our shared 12 inch tuna sub (cheese and pickles!) “I’m not scared Daddy. I am worried.” And he took a bite of his sandwich.  He looked at/through me and it all happened in seconds. A small wave of nausea came over me and I didn’t know what to say.  As a defense mechanism, ( I suppose) I asked him to repeat what he said.  He did. I composed myself and asked what he was worried about and he said, without hesitation, more chemo. More chemo as if forty eight f’ing weeks was not enough.  He then stared off for a few seconds seemingly to spare me what feelings were REALLY going on inside.

This is where it gets to be a challenge.  Beth and I always include him in EVERY conversation regarding HIS health and/or CureNFwithJack initiatives.  Today, I reaped what I had sewn.  My boy was worried and rightfully so.  Jack was anxious and who could blame him?  I was sitting 2 feet from him.  I’m his father and I asked, “How can I help?  How can I make you less worried? What can I do?” His response was quick and deliberate. His response killed me. “Nothing Daddy, you can’t do anything”.  

I froze momentarily.  Swallowed the tuna and everything else I wanted to puke up and responded.  “I am sorry Jack.  Daddy and Mommy and hundreds of other people are with you Jack.” He said, “I know Daddy”.  I said, “You are not alone here.” He said, “I know Daddy”. 

Conversations you do NOT want to have with your 10 year-old.  Days you do not want to have with your boy.  Being honest, it is a day where you want to curl up and die. But you can’t. I need to do more!  Our committees need to do more.  Our events need to raise more awareness and dollars!  We need to fund more clinical trials!

We are gearing up for the 4th annual CureNFwithJack golf tournament in Atlanta on June 15th!  Are you in?  Stay tuned because it will sell out for sure. You can play, sponsor, volunteer or donate! Questions? Let me know.

Let’s keep going. Together.  We will find a cure.  Together. 

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

Jake, Beth, Jack, Luke and Grace