so, now i am giving a piece of myself to help find a cure?

On Monday, we went to visit Jack’s NF doctor, Oncologist and Neurosurgeon to follow up on the next steps for his treatment post MRI.  Jack’s scan showed some disturbing swelling of the ventricles in his brain.  The term for this is Hydrocephalus. Literally it means “water on the brain”.  It’s not water, it is cerebral fluid and if it doesn’t drain properly it can and is VERY problematic.  I want enumerate the symptoms that Jack has been experiencing but it is bad enough that his very capable neurosurgeon told us on Monday that just the images on the scan alone would cause him to want to intervene.  GREAT! (Insert sarcasm here). 

The GOOD news:  His tumors are all stable and we are grateful for that indeed.  I never want to minimize that fact.  Having said that, he STILL HAS TUMORS and because of this terrible disorder, there is always the possibility of growth on these existing tumors or discovery of new tumors.  For now we don’t worry about these and we focus on what is immediate.

After the initial discussion with the NF doctor, we then spoke to his oncologist.  He was there to ask Jack to consent to participate in a clinical trial that could lead to yet more advancement toward a cure.  Jack had a few questions and we decided to consent.  They left briefly to go get the paperwork and then Jack said something that just floored me.  He was just minutes away from meeting with a neurosurgeon to discuss a pathway forward that included brain surgery.  “We’ve raised all this money and awareness through CureNFwithJack. We’ve donated it for research to help find a cure. So, now I am giving a piece of myself to help find a cure, right?”  I just stared at him, trying to quickly process what I just heard without crying. Thinking to myself in an instant, who is this kid?  Who the hell is this incredible human? I was able to muster just two words.  “Absolutely Jack.”  To which he responded, “Cool!” The doctors arrived back with the forms and then under Jack’s specific directions of warm compresses and numbing cream, not spray; they took his blood for research to hopefully cure him and others.  It was all too surreal and the day was not nearly over.

We had time between appointments and we went get lunch at a deli where Jack devoured some pickles and a sandwich.   There were a few questions about surgery and what to ask the doctor and an emphasis by him that we do NOT want a shunt.

We then met with Dr. Wrubel who operated on Jack’s brain 6 years ago.  He was terrific with Jack, addressing him directly as a young man and no longer a “kid”.  He said that deliberately more than once and it was great to have him empower Jack.  If you’ve read my other posts, one of our values has always been having Jack participate in all discussions that pertain to his health and journey where appropriate.  Dr. Wrubel went on to explain the issues, the procedure, the risks and the potential positive outcomes for Jack and for us and we were all happy that he decided to pursue a procedure that did NOT require a shunt. 

So, on Friday, March 12, Jack will have his 7th surgical procedure in just 10 years.  We are well aware that many people have challenges and struggles in a myriad of ways.  We are not so foolish to think otherwise.  More importantly, our struggle and our journey does not serve to minimize anyone else’s but it serves to bring to light the things that can sustain as a community of caring people.  Hope, empathy, humor, anxiety, fear, joy, love, compassion and concern.  Jack places himself in the hands of incredible nurses and doctors who remain at the forefront of untold battles everyday of their professional lives and once again, tomorrow, I will see that in full living color and will be grateful.

We remain forever grateful to all of you whether you have been on this journey with him for years or are now just joining.  Whether you have donated dollars (we can never get enough of that), participated or sponsored an event, commented on social media, your impact is incredible. 

I ask once again, with no real right to. but with a father’s hope for healing that you stay with Jack and give him your continued good thoughts for tomorrow and never forget the difference you make for him.  He is courageous not just for himself but for others and I will follow his lead into this battle and fight the only way I can, right alongside him which is the greatest honor of my life.

Tomorrow there is hope and YOU are among the reasons why.  Don’t ever forget that. EVER. #ENDF

Thanks,

Jake, Beth, Jack, Luke and Grace,