The Story of Libby Jones – Leukemia

Thank you for all you guys put out there with this podcast and its guests. It somedays provides inspiration, somedays motivation, somedays ideas and other days just a cool freakin story to entertain. To tell my never quit story though feels odd because i very much believe like you guys, I am only as good as the company i keep and my goal is more to push the people around me to the front with success than it is to be the one standing up in front saying… Look at my accomplishment. With that said, though here it is.
My story and life has many of these NEVER QUIT stories but the one that is most present in my own life is the story of my daughter Libby Jones. Libby is my first born child with my wife Barb and we live in Charlotte North Carolina. She was born July 9th 2010… In January of 2013 our lives were going well. My Custom Homebuilding Business that i’d started in tough times was gaining great momentum, Barb had a great job, Libby was an incredible child and flourishing, we just built a new home in a neighborhood we loved, and we had a little baby boy on the way. Fast forward to March and our lives literally hit a brick wall. With our little boy Will, only 7 weeks old, our Daughter Libby was diagnosed with Leukemia. In an instant life would never be the same. We are blessed with a Parents, friends and a community that encircled our family and did anything and everything to help make sure Will was cared for at every moment of every day and we were supported in any way someone could figure out how. Barb and I lived in the hospital room with Libby. We were not going to leave her side. As a father i had an incredible bond with her and that only increased as i became the safest thing she knew, which would continue thru her fight. I slept in the hospital bed as well as in the bed with her at home, for her entire fight. If i wasnt there, she couldn’t sleep. I am 6’4 and 200lbs…in a childrens hospital bed… but it didnt matter. I told myself, i would get my own sleep when she was well again. She was the most important. The fight continued and her Leukemia would not let up. Every day it was like walking your child towards hell and trying to encourage them to “be tough” or “be strong” when every part of you was crumbling inside. She had a successful bone marrow transplant and on day 98 of 100 which is the goal to get to post transplant, she relapsed…. We found this out on Dec 6th 2013 after going on a movie date together as my birthday present. We then began searching for options again and moved to Maryland to the NIH for 6 weeks for a trial. It didnt work either and we came home early with heavier hearts than we left with. We were not giving up. We had a plan… a new plan… we were going to keep trying and researching. My wife learned more medical knowledge researching and asking questions than i think most could learn in med school. Thru the next months things did not continue to be “wins” for us… We tried, we failed over and over again and on May 8th of 2014 we said our final goodbyes to our daughter which is the worst imaginable thing a parent could ever face. Every parents worst fear… was our living reality. For 350 of our 400+ days that Libby was sick we lived in a hospital room with her but we made it our world to survive, Our son lived in the care of our Parents and their friends because we couldn’t be his parents during this fight, we asked for help where we could or when we could, and we suffered the ultimate loss anyway.
I will tell you that not once did Barb or i ever say to each other that we might lose nor did we think it. It took a new level of mental toughness i can’t even begin to describe to live that life. I personally took some of the lessons that i had read about in your book Marcus to give myself a pep talk each morning before the day started, to be mentally tougher and physically stronger than my enemy(cancer). My family depended on me…. I read the book about Adam Brown and Also Chris Kyle while i sat in the ICU room for Libbys final days to make sure my mind stayed focused on winning. In february before Libby was gone, I came to see you and your pals on the Patriot Tour and what a gift you all gave me. I was running out of gas and those stories fueled me for the final rounds of the fight ahead. I have even connected with your friend David Goggins and he is coming to speak to a small community of my friends and people who i value in my life, October 11th and i could not be more excited(and maybe a little scared! ha) Since May of 2014 i have spent endless hours and therapy with Barb so that we could find hope, TOGETHER, again. So that we could look each other in the eyes and not just see each others pain. So that we could not be a statistic about a marriage that fell apart because we couldn’t not face or handle grief of our own selfishly. Thru an organization locally called 24 Foundation, i along with our Team Libstrong/Drews Crew team have raised money for the event here locally called 24 Hours of Booty and in 4 years we have raised almost $600,000, grown our team from 15 people to 100, i have been the top overall fundraiser for the whole event for 4 years in a row, and our team has been #1 for the past 3. Last year we shattered the single team fundraising record by $48k and this year we beat our own record by $8k. We are far from done but this is my new fight and this is how i put my life in line to protect another family or child from having to face Cancer or to support them if they are. I know what PTSD is… I have it and a thought will lead to a thought and i will end up in that “rabbit hole” you speak of but I train myself and provide myself with tools to find a way out of it thru exercise, the company i keep, and events like this one that make it possible for me to physically fight back by riding my bike 125+ miles in 24 hours in Charlotte NC every July for the event.
Barb and I welcomed a baby girl on July 5th 2016, 4 days before what would’ve been Libbys 6th birthday. Barb had been pregnant and miscarried the week of Libbys birthday in 2015 which was hard and then when she found out this time she was pregnant, not only was it a girl, but the due date was Libbys birthday… God doesn’t make mistakes and this was so clear right then and there in that moment. Leighton Elizabeth Jones was born and i got to see the Joy rush into my wife right there in front of me in the midst of the pain of childbirth and recovery and it is a blessing, emotion and sight i can’t even describe properly.
Like you and so many of your guests say… my life and our life is a continual never quit story and will never stop being that way as life comes at us. We live in a broken world and without Faith, Family and friends, we wouldn’t survive it, but I can tell you now that yalls message has helped me in ways that are immeasurable so thank you. I know that you would probably tell me that no thanks is needed but it is.
Keep doing what you do.

Josh Jones

Author: Josh