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,
Jack you are in my prayers. I read your Dad’s comments about your upcoming surgery and giving of yourself. (and you like pickles👍🏼). You are awesome, cool and so very smart … you can be Dr. Fauci’s youth ambassador for science. So hang in there buddy! Dr. Fauci needs you‼️👍🏼
I pray for you every day, Jacko! You are the strongest person I know. Peace from Arlington, Ma
Inspiring as ever. Praying that the surgery went well! Jacko is simply amazing!
Wow. I feel my heart running outside of my body thinking about the souls of the little ones I know and all of our endless ups and downs.
Mom – you are incredible.
Jack – you are an inspiration.
My prayers are on you.
Pam
Jack, you are an incredible young man and human being. You have come so far, and will continue to inspire and lift up all you encounter. You are in our prayers for a great outcome in your surgery. You got this!! Sending love and prayers!
Jake,
Thinking of Jack and your entire family! Sending you prayers and positive vibes. Jack is a rock and is inspiring to others! Praying that all goes well with his procedure. He courageousness is a gift and exemplifies the young man he is. Blessings!
Keep fighting Jack, keep fighting.
We’re sending love, prayers, and healing wishes for the amazing Jack and his amazing family.❣️
Jack you are an amazing young man for sure !!! God bless you and may he bless these incredible Drs and nurses that will be caring for you ! I am praying hard for you ! My
Little Jason is having his I believe 11th mri today as well because he is having awful headaches! So with that being said go get em buddy!!!! #FNF 💙💚
I will be lifting Jack and your entire family up in prayer. Sending positive thoughts and well wishes!
I love you Jack! You are an amazing young man. I learn from you on a continuous basis.
Amazingly thoughtful! Our thoughts and prayers are with Jack!
Praying for the most powerful healing vibes to be sent your way, Jack!
There are no words that adequately …Jack is inspiration! Wise beyond years. You and Beth have created the most inspiring and courageous human. I keep you all in my prayers always. Hugs and love to all. If there is ANYTHING I can do….to Jack directly-though you are young you are wise and fierce with a perseverance that dwarfs understanding in the face of circumstance. You are an amazing human abs I am blessed to have met you!!!
Always here with Jack and his team. So proud of his courage. Love and prayers lifted for all of you
Jack is a light of hope and optimism! I will continue praying for him and you as always, but extra prayers and positive vibes tomorrow.
Incredible! God Bless Jack. He is one courageous dude. Please know that we will pray for him at St Brigid and Sacred Heart Parishes in Lexington MA. Be well! Stay well! God Bless the whole And extended Burke family!!!
Through my tears, I can honestly tell you that Jack will be at the top of my prayer list tonight, and in my thoughts tomorrow as he faces this latest hurdle. He has always been my hero and that won’t change. Sending love and virtual hugs to you all!
Sending love and prayers
Jack is so strong. I cried immediately when I read this. He is a warrior and so courageous. Thank you for keeping us posted. Been thinking, praying, and pacing all week. We all love Jack and your family and will forever and ever. He continues to amaze me over and over again. <3
He is truly Super Jack! Very inspiring young man. He and your family are always in our thoughts and prayers.
How did you not cry??
Sending love and prayers for Jack and all of you, From The Gebhardt Family 🙏🏻❤️☘️
Jack you are an inspiration to all of us We support you You are a brave young man with a wonderful family Best of luck tomorrow prayers for you and your family tomorrow we love you
I am in awe… what an incredible young man Jack is! I will continue to keep him and all of you in my my thoughts and prayers. I am sending positive energy and know that there will be a cure soon! 🙏💪
Jake, your Son Jack continues to amaze me each passing day. He is truly giving himself to the cause of helping others. We should all be so motivated. Thanks Jack and I am hopeful that it will go perfectly tomorrow and your symptoms are alleviated. Amazing update Jake. Courageous somehow isn’t a strong enough word.