Thumbs Up Ruck
John Rucker Collier, Jr.
6/9/2014 – 10/29/2020
On Thursday evening, October 29th, Rucker’s time here on earth came to an end and now his new heavenly life has begun. He passed away comfortably at home with his Daddy, Momma and his little brother Charlie at his side. He was “safe and good” as we would often say to comfort him, “right where he needed to be.”
He is now riding his bike and dancing to Michael Jackson in the fields of paradise without pain or fear. We take comfort in knowing he is surrounded in a love so warm and bright that the pain of recent memory has vanished. He is breaking in those new wings. As he promised, he will teach me to fly when I get there, so I’m sure he will be practicing.
Meaning:
Rucker was an inspiration to all of us. Through my relationship with Rucker and enduring this battle with him, I have come to understand what the meaning of this life is to me:
It is to love something far greater than yourself.
Through my experience with Rucker, I learned that this great love can:
Reveal your purpose;
Soothe the greatest of pain;
Overcome all challenges;
Give you true happiness; and
Be “always and everywhere” (In Rucker’s words).
Through my relationship with Rucker, I learned what God is to me:
God is love.
I have seen the power of this love provide Rucker peace when it seemed impossible; to allow him to smile when he should have cried; to carry him through the harshest of what this world can throw at a child. To me, that powerful, undeniably good, tangible feeling that does the impossible is God.
I do not care what religion, denomination, or philosophy you may practice. As I have thought about many of them, one common thread within each of them is Love. More specifically, a love for something greater than oneself.
In my case, this love came to me in the form of my first-born child, Rucker. He was my heart and my soul. He was my greatest joy and love. Simply put, Rucker was my best friend.
Two Thumbs Up!
Rucker, who I referred to as my number one boy, or one-man, or a million other nicknames (Ruck-man, Rucker-Bug, Ruckeroo, Ru-Ru, Ru-Man, Foof, Flump, Flumpy-Bug, Flumpner-bean, Rucker-Pig, Stinkman, Stinkerbug, Tater-head, and this list goes on), was the kindest and most innocent soul. He was funny and slightly mischievous, but very sweet, cautious, gentle, and loving. He had the most infectious giggle. He loved to dress up in costumes and to dance and entertain. He was the center of attention. He had the most endearing way of turning life’s lemons into lemonade, like when he first got his wee-walker and used it as a prop in his MJ dance routine. Or when he had to lose his hair (again) and he decided to make a mohawk out of it for his Christmas program. He made us laugh daily. He was so brave. He fought with a spirit that amazed us. He took whatever challenges he had to face head on with a courage that was awe-inspiring.
From the beginning, our family chose to face this battle with positive energy. That came from Rucker’s spirit. He went through two and a half years of agony with two thumbs up. After his countless hardships, those thumbs and a big smile were sure to follow the tears to let us all know he was “safe and good.” We would always take that picture and send it back to our families who eagerly awaited the thumbs up. He always wanted to please us. Even in his final days, when he could not see or move from the neck down, I would ask, “you okay buddy?” and he would smile back at me and say “yep… you okay daddy?” He was not, and I was not, but we stayed positive. He would give me smiles because he knew how much joy it gave me, even when he was in pain. I will spend each day of the rest of my life living for Rucker’s legacy and memory, while trying to retain that positive energy that we shared. Thumbs up buddy!
Rucker’s Legacy:
Katie and I have worked so very hard on Rucker’s treatment and now this work is a part of who we are. We will not stop. I told every doctor, scientist, researcher, fellow parent, and all of those I spoke with along this journey that our goal was to find a cure for SEF in Rucker’s honor, and if we couldn’t do that, we would do it in his memory. Unfortunately, we were unable to accomplish the former, but will now forge ahead with the latter.
In the past two and a half years, we have learned a lot about rare childhood diseases and treatment. We have discovered the importance of patient advocacy. We have learned a lot about how to navigate the world of pediatric oncology and childhood cancer research. We also have been blessed to have had few if any limitations along our path. We had resources, time, energy, and ability at our disposal in our fight for our beloved son. Many of the people we have met along the way in similar circumstances lack some of those pieces. We want to ensure that we give that same set of tools to those who may need them.
Katie, especially, has been successful in creating a network of other SEF patients. She has relationships with this small group, and we endeavor to help them in any way we can going forward. We have brought them together to fight as a group, albeit a small one, rather than alone.
To that end, we are starting a foundation to carry on this work and to honor Rucker’s life and create an enduring legacy for him. Its purpose will be to keep up the fight and bring Rucker’s positive energy to those who need it. It will directly work on funding research to cure SEF. In addition, it will advocate for and support others who face this disease (and perhaps other rare pediatric sarcomas after we are done with SEF). It will be the vessel through which we will continue to deploy the tools and skills we have acquired over the past two and a half years.
One day, I aspire to meet people who have survived SEF and tell them about a strong little boy who inspired the work that led to a solution for them. I also want to be able to give others some of the things we had along the way. I want to be able to tell someone who is facing what seems like an insurmountable challenge, “Don’t worry about what it costs… we will help you fight for your child. We know how to do this. We know who to call. We know what to do next. We will send you anywhere, find any expert, shake the tree so hard the limbs of the system will bear fruit. We will do anything to help - no matter what. We will do this to honor Rucker.” This is what we were able to do for Rucker, and what we desire to continue to do for others.
Before Rucker, no one was working on SEF. There have been less than a handful of papers written about it, most only describing pathological or genomic findings. That presented us with an uphill battle. Along the way, I chose to view the rarity of his disease not as a limitation but as an opportunity. I thought, “we can make a difference. We can forge a path in the wilderness.”
We, along with gracious and generous supporters of Rucker, have already begun funding the science behind it. For almost a year now a team of researchers at the Children’s Cancer Therapy Development Institute in Portland, Oregon have been working on SEF. As I type, Rucker’s tumors have been lovingly removed from his body and sent to Portland. With that precious tissue, they will make mouse models, cell lines, perform further genetic testing, and continue the work that will be used to search for effective therapies for SEF. I believe in the science, and that we will find something that controls- or better yet eliminates - this horrible disease. I have always believed, deep in my soul, that we could and would figure out this riddle. I will never be able to get over the fact that we were unable to accomplish this for Rucker; however, I can think of no better way to honor my son than to finish what we started.
The following quote from Winston Churchill has particularly spoken to me over the past two and a half years:
“To each there comes in their lifetime a special moment when they are figuratively tapped on the shoulder and offered the chance to do a very special thing, unique to them and fitted to their talents. What a tragedy if that moment finds them unprepared or unqualified for that which could have been their finest hour.”
I knew that getting my son through this would likely be my finest hour. To be honest, I imagined a different outcome along the way. Nevertheless, Katie and I have an opportunity going forward to do special things unique to us and fitted to our talents.
Most of our friends and network of supporters often ask, “What can we do to help?” We now have an answer.
We ask that if Rucker touched your life, to consider making a gift to his legacy. We ask that you think about this deeply and decide to make a commitment that may allow us to help another child, and continue investing in the research required to cure this rare disease.
Think Big!
We are going to raise $5 million dollars to endow the Rucker Collier Foundation. This will be only the beginning! This endowment will fund much needed research, advocate for and give back to similar families in need, and support organizations that touched us personally or made a difference for Rucker. Instead of nurturing our son for the rest of our lives (Plan A), we will nurture his legacy through this foundation (Plan B).
How can you help? Of course, you can directly donate any amount large or small. I also ask you to consider sharing Rucker’s story with a friend or someone who did not know him. Write a note about how he touched your life and ask for their support. Let’s get creative … someone knows someone who knows a billionaire with a big heart out there (I’m talking to you, Mr. Bezos!). If Rucker inspired you, please pledge to help us build upon his legacy. There are at least hundreds of people who directly knew Rucker and thousands who were indirectly moved by his story. My bet - informed by knowledge of our community and the power of the love that will carry us to our goal - is that we will reach this goal before Christmas! We have an incredible village as we have mentioned before. Together, we can move mountains.
If you feel called to help, please make tax-deductible donations to:
Rucker Collier Foundation
c/o Foundation Source
55 Walls Drive
Fairfield, CT 06824
(For further instructions call 1-800-839-1754)
Special Thanks:
Throughout this whole story, we have been blessed with so many supporters. To thank everyone would be an entire letter unto itself. I do want to make a special thanks to Rucker’s team, which grew to be quite large and wide by the end. Rucker went literally across the country for care. Rucker, Katie and I went to Stanford Children’s, Dana-Farber Children’s (Harvard), and MD Anderson for opinions and treatment. We also consulted with wonderful oncologists at Cincinnati Children’s, Seattle Children’s, Memorial Sloan Kettering, The National Institute of Health/The National Cancer Institute, Tristar Centennial, St. Jude’s, Nicklaus Children’s, Chicago Children’s, and others. We collaborated with researchers from Seattle to Germany and received recommendations from oncologists as far as Japan.
We have met some very fine people through this journey, many who have dedicated their lives to help sick children. I have had countless phone calls with pediatric oncologists, scientists, genomic analysts, pharmaceutical company Presidents and CEO’s, and other parents like us. I have befriended and counted on the scientific expertise of many. Those of our family and friends who have medical expertise have been an enormous help as well. I enlisted the support of many and created a network that I could call upon as we navigated the unchartered waters and made decisions for Rucker. They have all been instrumental in our journey. Thank you for what you do! Thank you for lending an ear and your expertise to us. Thank you for standing with us in our fight. These many supporters are angels in my eyes.
Wherever we went, we always came home. The home team at Children’s of Alabama provided most of his treatment, and always took care of Rucker along the way. To all the doctors, 8QB nurses, Clinic 8 staff, child life specialists, physical therapists and CAs that have all treated Rucker with love and care – thank you!
One noteworthy angel of ours has been Dr. Aman Wadhwa. He is our lead oncologist on Rucker’s case and was Rucker’s quarterback from the beginning. He was on many of the calls next to me. He has been our steady hand and our patient guide throughout this journey - not patient as in medical, but patient as in patience (if you do not know me well… I can be somewhat demanding when it comes to helping Rucker). He never wavered and always listened and guided us through our decisions with wisdom and grace. He went above and beyond the call of duty many times for Rucker. He was there from the beginning until the very end. Thank you Dr. Wadhwa!
Goodbye:
Each night as I laid with Rucker in bed, I told him how much I loved him. I told him that I loved him bigger than the universe, always and everywhere. I explained to him that infinity never stops… which is like the way I love him. I told him that I was the luckiest dad in the whole world; that of 7 billion plus people, I was the one that got to be his daddy. I would not trade a single minute of our time together for anything. I will work the rest of my life to honor my son and what he has given me: a crystal-clear understanding of what I am here for and what life is all about.
Goodbye for now my number one boy... I will miss you each and every day... until you take me flying.
Love,
Daddy
Arrangements:
We will have a private family service Friday morning in the Vestavia Hills United Methodist columbarium, where Rucker’s remains will be interred.
We know many of you are grieving along with us and want to gather to mourn the loss and celebrate the life of Rucker with us. However, with the current pandemic worsening, we plan to delay such an event until it is safe to do so. Please tentatively mark your calendars for the week of June 9, 2021, Rucker’s would-be 7th birthday. We plan to have the party that he deserves, a full celebration of his life and legacy at that time.
However, we think that it is important that the children in Rucker’s life have some closure and a chance to say goodbye. Therefore, a Children’s service will be held Friday, November 6th at 4PM at Dick Kelly Park at Vestavia Hills United Methodist Church. We know that so many of Rucker’s friends have been missing him and praying for him to get better for so long. We feel it is appropriate to have the children (and their parents) who were friends with Rucker to come listen to a short message, sing songs and say goodbye to their pal. Everyone is encouraged to wear bright colors.
