Goodbye 2015! Hello 2016?
Happy New Year from Jack and all of us here at CureNFwithJack. I should start by saying thank you to all of you have donated their time, talent or treasure. We are deeply grateful that so many of you have made Jack’s battle part of your life because I know you each have your own struggles. We NEVER take for granted what you give us through the myriad of ways that you do. For many, this day brings about an opportunity to reflect on the past year. There is so much that has happened in the last 12 months it is hard to recall but I thought summarizing via each month would give you all a deeper perspective into what Jack’s Journey entailed in 2015. There are a LOTS of links and photos. Thanks
January- This month is always a mixed bag. The joy of Jack’s birthday is what is most prevalent and the recovery from the holidays too. What weighs heavy on our minds is what MAY or MAY NOT lie ahead. In true form, NF threw some major curve balls that we could not see coming in the months ahead. I marked this month with this blog post.
February- Our second year of full participating in the Cupids Undie Run! CureNFwithJack has 13 teams across the country and we raised almost $200,000 in that one day. Boston team was the number one fundraising team in the country and our impact was huge. We worked with the Cupids team to assist on securing Fenway Park which will continue again this year and introduced the Tundra Hat people as well. In Boston, Lindsey Norse does a great job and Hannah Thompson crushes it in Atlanta. This year we are looking to do even better. This year has way more meaning because we lost our inspiration, Drew Leathers to this damn disorder. Here are some pics: click here.
March- This was a great month because CureNFwithJack was the beneficiary of the “Tradition”. This is a golf tournament here in Atlanta on St. Patrick’s Day! Our great friends Conleth O’Flynn and Dave McGlashlan hosted over 250 golfers and raised almost $20,000 for CureNFwithJack! Again, photos from the event can be seen here. It was also one of our tougher months because we discovered that Jack’s glioma grew back slightly and that they discovered a syrinx on his spinal column. We had no idea what lay ahead but I wrote about that day here. But we also experienced this!
April- On the heels of finding out what may lie ahead for Jack we went shopping at Kroger and gained some perspective. April also was when we announced some really, really BIG NEWS. We announced our status as an official 501c3! We became a tax-deductible organization and created our board of directors! We work closely with our doctors, advisors and the great team at the Childrens Tumor Foundation to bring the funds we raise to help in much needed research. Our great friends Carol O’Connell and Matt Benson and the Washington DC CNFWJ team hosted a fundraiser in hopes of creating more awareness for NF as well as getting folks interested in their golf tournament! It was a tremendous success. Some pics here.
May- We were busy preparing for the 4th Annual CureNFwithJack Atlanta Golf Classic. It takes quite a team to pull all of that off and we are lucky to have a great one. School finished up and we took a few days with the kids to visit our friends the Bittings in Charleston and some beach time. The Milton, GA fire and police departments also held a fundraiser for CureNFwithJack which was really neat. Having our local first responders with us was really great especially since Jack has several police and fire professionals in his family most especially his Grampy Burke.
June- The event that “started it all”. The Atlanta tournament was great this year. We had a new venue and lots of new faces that joined in the fun and helped us raise over $70,000. A lot of people returned for their 4th 3rd or second time and have told us it is the best run event they attend. We were happy to welcome Super Bowl champion Rodney Harrison to the event (he won) and our friend Zac Brown donated a guitar for our raffle! It was quite an exciting day for all of us and marked the 9th CNFWJ golf event! Some great photos here. We also got some great corporate support from our friends at Converse and Coca Cola and hope to be able to offer these products soon! Check these out by clicking here.
July- This was a great month for us from a fundraising and awareness perspective. The Pattillo family hosted the 4th annual CureNFwithJack yard sale and it was the biggest success yet! We had more families donate and participate than ever and raised several THOUSAND dollars! We had fun, here are some pics here! Our neighbors the McCreanors also organized a fundraiser for Jack at the local swim meets too! On the awareness front, CureNFwithJack was a featured story in the UMass Lowell alumni magazine with a readership of over 50,000 people. Ed Brennen did an incredible job of describing Jack’s journey and how community and cooperation has been so helpful. You can read the article if you have not already done so by clicking here.
August– A very bad month. We lost a friend, hero, warrior and great person in Drew Leathers to the ravages of NF. Drew was/is the inspiration behind so many things to help find a cure for NF. The Cupid Undie Run is perhaps the most well known. How do we tell Jack and Luke? We struggled for a few days with that one for sure. We finally shared the horrible news with them at our dinner table. They were both hurt deeply. Jack did not say much at first and then finally asked if his family was OK. We said we did not know. Luke asked if Drew and Jack had the “same kind” of NF? We told him no and that Drew had a different form. We then talked about the impact that Drew had on our family and the NF community as a whole and that his spirit will be with us and a driving force behind CureNFwithJack forever. Jack said, “We just have to do more”. I wrote about it here.
September– This month found us going back for an MRI to see the progress of Jack’s syrinx. The news was not great and i wrote about it here. It was progressing and surgery while not imminent would be necessary. We had hoped we could wait until Thanksgiving break for surgery…just a little while. The doctor was willing to give that a shot. We left the hospital and the next day Jack was invited to speak at his first corporate event about his journey. He spoke to an international audience of sales and engineering professionals about facing adversity and creating a great story. Kevin Andrews is a friend from my days at UMass Lowell and he invited Jack to speak. He got a standing ovation, some incredibly generous donations and more soldiers signed up for his battle! A few pictures can be seen by clicking here.
October– October was the craziest of all of 2015 and I wrote about it here. We were met with incredible sadness by the loss of our neighbor Mary Elizabeth Paris from AML. Mary was 11 and fought along side her family for a long time to beat back cancer. It is just awful. The second annual Oktoberwurst tournament took place here in Georgia to raise money for CurenFwithJack. A tournament with a Bavarian theme is just what we needed to help bring some smiles to our faces. Shortly after that event we learned that NF can run a course any way it wants and the doctors told us that based on Jack’s symptoms that we should have brain surgery ASAP. So, we scheduled surgery on October 17th. The 4th annual CureNFwithJack DC Classic was being held that day and this would mark the first time that Jack would not be in attendance at a golf tournament. He was very sad. We were all very angry to not see and thank all of our supporters. The evening before the surgery, Jack made this video describing to Luke what was going to happen. View it by clicking here. Jack had his surgery and it was a very long morning. He was in intense pain and it is the hardest thing as a parent to watch your child in pain and not be able to take it away. As he struggled mightily at the hospital, many of his friends, neighbors and family were working hard on preparing a “Halloween themed” room in our house to welcome him home. Meanwhile in DC, the golf tournament raised almost $60,000 for NF research thanks to the team led by Matt Benson and Carol O’Connell! After four days in the hospital, Jack came home to recover.
On the 24th of October the first annual SmashNFwithJack Tennis tournament was held. Led by Christine Langlands, this event allowed CureNFwithJack to reach more people and raise more money for NF research. Christine secured sponsors, players, created raffle baskets that were amazing and we had a wine tasting and sale! All proceeds went to CureNFwithJack! Here are some great photos.
A few days later, Jack ventured out for the first time since his surgery. As it so happens, Clint Eastwood was filming a movie in our neighborhood and after some conversations and generosity of the crew we got to meet a living legend! Jack has aspired to be a film director and he was thrilled to meet Clint. Luke thought it was great too! Look here! Halloween arrived and it was touch and go on whether Jack could participate. Through the kindness of our neighbors and friends, it was arranged to have a golf cart available to drive him from house to house. What amazing support he receives from our neighborhood.
November– This month was spent on continued recovery and trying to get “back to normal”. We took the boys to their first concert ever and it was Kevin Griffin, lead singer of Better Than Ezra and a supporter of CureNFwithJack. Before the show we had dinner at the venue. At some point, Jack excused himself to go to the bathroom while the rest of us conversed at the table. About 5 minutes later Jack returns to us accompanied by Kevin! Apparently Kevin had recognized Jack and he sat with us for a few moments, took a few requests and went to prepare for his show. Post show we got some great photos of the night that you can see here.
Our neighbor Kelli Taylor helped bring awareness to CNFWJ through a custom jewelry sale for the entire month of November and raised several hundred dollars! The women of the Indian River State College basketball team asked to have Jack as their mascot and season inspiration for the 2015-2016 season, which was just terrific. Here is a great photo. Jack continued to recover and returned to school and things continued to trend nicely through Thanksgiving.
December– December was finally here and we prepared for Christmas and New Years. Near the beginning of the month we were asked by the University of Georgia Hockey team to come out to a game and have Jack drop the puck and Luke skate with the team at warm-ups as part of “CureNFwithJack night”. Coach Chris Copelli and a teacher at Jack’s School Michelle Patel coordinated this! It was a great evening with lots of tears and smiles and a nice way to begin the end of a very tumultuous 2015. Check these out here.
Last week just after the ball dropped I took Jack aside away from the others at a party we were attending. I hugged him extra hard and said thanks for being such a brave boy and inspiration. “Thanks, Dad” was his response. I asked him what he wanted for 2016 the most and he said “No more surgeries and no more chemo Daddy”. “Can I go back to the party now?” I said “Yes”. I took a moment and a breath and joined back in with the crowd.
I don’t know what 2016 will bring…none of us do. Today, on January 4th we have the follow up MRI since his surgery and from there our 2016 will be based. I hope each of you continue to stay with us this year whether on Facebook or attending an event or writing an encouraging note to Jack. We need that. He needs that. Thanks.
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
