NEUROSURGERY AND CORPORATE SPEAKING ENGAGEMENT. HOW WAS YOUR DAY?
This past Monday we had to bring Jack for a 2 hour, full-spinal MRI and true to form he handled it like a champ while his Dad limped along through it. As you may recall, it was discovered that Jack has a syrinx on his spinal column near the base of his brain. These can be very problematic and the doctors wanted to investigate further so this scan was performed. All of that is scary. However, NF adds another element…the unknown. They were scanning an area that they have not examined before. Undiscovered territory. Are we going to find more tumors? Another syrinx? It is crazy what your mind can do if you let it. After the MRI we were going straight over to meet with the neurosurgeon to discuss what was found on the scan and specifically the original syrinx.
What seemed to take forever was meeting the doctor in the room. We anxiously awaited him to come to the point, which he did. What every NF parent wants to hear is “no change”, “stable”, and “no new tumors”. That is the great news and we feel fortunate and relished in it for a few moments. However, that syrinx is problematic and needs to be addressed. We were discussing the options and the neurosurgeon was great. He was clear about our options and engaged with Jack and answered all his questions.
Jack has been doing really well since recovering from chemotherapy. He has gained weight and he has gotten taller and stronger. He is enjoying school and “on a groove”. This is what makes me so angry with NF. It tries to disrupt the good times and makes the bad times worse. We were told that based on his symptoms he is going to have to have surgery but it is not emergent but imminent. We decided to monitor Jack for symptoms and schedule the surgery later this year. If his symptoms get worse than we will intervene immediately.
On Tuesday Jack was the keynote speaker at a conference of professional engineers. My college friend Kevin Andrews, invited him to speak to his team about creating a “Great Story”. His story. How he has faced this battle head on against adversity and has created a movement to find a cure for everyone battling NF. The audience was engaged and asked some great questions which Jack answered flawlessly. They asked his biggest advocate, Luke, what it is like to be in his role as younger brother. Luke was thoughtful and courageous as usual and offered his perspective while still allowing Jack to be the “star”. He is simply a great brother.
As we were concluding the discussion, I told the group that this may be the first time they had heard of NF but Jack will not be the last person they meet that has NF. In fact, I said, within 6 months and within two degrees of a relationship, they will know someone else who has NF. The VERY next night when I went back to meet with them, one of the guys told me that he called home to discuss the presentation with his wife. He told her how he listened to a kid talk about his battle against NF. His wife responded by telling him that one of her family members has NF too. I guess he never knew his relative had the disorder! Within 24 hours we were already educating and raising awareness. Another gentleman from Austria promised to bring the word back with him to his friends and family and to proudly wear his shirt. Some people even donated to CureNFwithJack right on the spot!
So after another roller coaster week, we move forward again. We are armed with information and determination. We have you all with us and that is tremendous. Stay with Jack folks.
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
