Rucker Update
I am writing this update from the hospital room at Children’s of Alabama, after watching the Barons post-game firework show from our window. What a wonderful facility we have here in Birmingham. Rucker is now peacefully sleeping after a long few days of chemotherapy and over a week of being in and out of the hospital for fever.
While many of you may imagine this diagnosis is reason for despair, we have found so much to be positive about and thankful for over the past couple of months. The thoughts, prayers and support of our family, friends, neighbors and co-workers has been overwhelming. We are immensely thankful to all who have or will help us in the future.
Our family is fortifying us in many ways. They are taking care of our youngest son, Charlie, much of the time so that Katie and I can focus most of our energy on Rucker. Charlie (named after my father, Clark) is a tornadic mix of exuberance, mischief, curiosity and fun. At nearly two years old, he is always on the move and looking after him is no small task. Rucker’s beloved cousins are very uplifting to him when they visit. Often just the normalcy of kids being kids together has been the best medicine for Rucker. To our parents and our siblings especially, thank you! We love you and appreciate all that you do for us on a daily basis. Lindsey, my middle sister said the other day “it takes a village and we have a good village” in one of her multiple trips to Birmingham over the past few weeks to see her nephew. We are so fortunate to be a part of a truly amazing village.
I used a Magic Johnson quote last week talking to my work family at Vulcan Value Partners, “When you face a crisis, you know who your true friends are”. I cannot say it more eloquently. My firm has been incredibly supportive of us and I cannot thank them enough. The flexibility given to me to be here for Rucker when he needs me is truly a blessing. We would also like to thank Katie’s employer, Maynard Cooper & Gale. They have handled our situation in a first class way, allowing Katie to focus on Rucker’s care.
I would also like to thank our doctors, nurses, and staff at Children’s of Alabama. Those who devote their lives to helping people (especially children) are incredible. We have found strength in their able minds and hands.
On that note, our Oncology team, led by Dr. Aman Wadhwa, have been working overtime lately to hone in on a specific diagnosis for Rucker’s cancer. After proving difficult to diagnose, the biopsy of his primary tumor (in his left kidney) was sent to Pathologists at the Ann & Robert H. Lurie Children's Hospital of Chicago, St. Jude Children’s Research Hospital, and Cincinnati Children’s Hospital. Genetic testing was also done at both Foundation One and Circulogene to better determine specific gene mutations that are present. With all of this, we have finally determined his diagnosis is Sclerosing Epithelioid Fibrosarcoma, or SEF.
This is an extremely rare cancer; one without much history, trials, studies or other data; one with no proven treatment protocol. Our doctors, with consultation of colleagues at other institutions have created an aggressive plan to cure Rucker. Rucker will be undergoing Chemotherapy for at least six months. He will be doing inpatient treatments every third week. He will also have surgeries to remove the tumors, as well as targeted radiation. This will be a long, trying battle. It will require strength, determination, positivity and resolve from all of us that surround Rucker. We thank you for your support in that endeavor.
Rucker is strong and courageous. His spirit is an inspiration to me. He is dealing with daily frustrations and challenges such as taking shots, taking dozens of medicine-filled syringes, having his port accessed, being poked and prodded, and undergoing chemotherapy which causes countless side effects. He also has been in a cast for over six weeks at this point (He had the waistband portion of the cast removed recently, so he has been much more comfortable). We hope to have him out of the cast within the next week or two, which will give him his mobility back.
All of this is to say, he could, and should be miserable. He is not. He has taken it in stride and complained very little. He has made the best of his time by painting, coloring, playing, watching movies and tv, playing with legos and other toys that have been so generously given to him by many of you. He is fighting with a beautiful innocence in that he doesn't know what else to do. He does the next thing... puts one foot in front of the other - as do we each day. He is brave. He is my little superhero. He is my number one boy (as I always tell him)!
Many thanks again for the support,
John
