“I DON’T NEED THAT. JUST GIVE ME THE MASK & LET’S DO IT.”
This week is a big week for Jack and the Burke family. You may recall back in October of 2013 Jack started his chemo regimen. Prior to that he had to have surgery to implant the chemo port in his chest. Well, this Thursday after almost 27 months he is going to have it removed! The doctors decided that he has had enough non-growth and stability in his brainstem glioma that the port can come out. To tell you Jack is excited is an understatement. I think the visible bump in his chest serves as an awful reminder of his condition and a rather terrible 52 weeks in his young life. The photo at the top of this article is a clip taken from the film Jack’s Journey and to me represents the saddest part of the film his description of the port. As part of the process of surgery, Jack had to have a meeting with the medical team at Childrens Hospital this past week. They did a brief exam, took his vitals and asked me some standard questions about his health.
The nurse practioner was a very nice person name Elizabeth. As I was rattling off answers to her questions, Jack was listening somewhat but essentially was bored with the whole thing. Toward the end of her questions she asked about his history and comfort/reaction to anethstesia. She specifically started to ask me about how he reacted to a sedative called Versed. She went on to explain a lot of people require it to relax them before surgery. I started to answer that he hasn’t had it in a long while and that he does all of his MRI’s without sedation. I continued and was then interrupted. “Dad, I don’t need that”. I replied, “What?” He repeated, “I don’t need that. Just give me the mask and let’s do it”. The nurse practitioner looked at me and then to him and explained to him that it may help him relax, etc. He very politely declined and said, “I’ll be relaxed. I’ve had surgeries before. Tell her Dad.”
We caught her up on his history of 3 surgeries, dozens of MRI’s and other procedures and she responded, “OK, no Versed for this brave, handsome guy.” Jack smiled. I swear to you he was channeling my father. He sounded like him. His mannerisms were similar and shared his fearless, pragmatic attitude. The nurse and I exchanged a knowing glance quickly. She smiled and nodded her head. I shook mine too.
So, on Thursday with no sedation he will be “put under” and they will remove this wonderful piece of technology that I am so grateful for and hate so much. His port. We will move on past that and continue down the road to #ENDNF. 2 days later, CureNFwithJack Cupid Undie Run teams in Atlanta, Charleston, Charlotte, Chicago, Detroit, Kansas City, Saint Louis and Washington DC will run for Jack and others to help ENDNF. Right now those 8 teams have raised a total of $80,000 and amassed 173 runners. The following week we have 4 teams running in Austin, Boston, Philadelphia and Raleigh with 194 runners and $66,000 raised for a total so far of 367 runners and $145,000 so far.
We are so pleased to be joining in this Cupid Undie Run adventure inspired by Drew Leathers. The memory of this great man and the impactful life he led with dignity, courage and humor. I am personally honored by each of the 366 runners and their friends, family and donors who are making this event a success. It is not too late to be a part of this phenomenon. Simply go to this link and find a team or a runner and join or donate. Onward.
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
