What good am I if I know and don’t do
If I see and don’t say, if I look right through you
If I turn a deaf ear to the thundering sky
What good am I?
Juliana, our JJ (Juliana Jean) will forever be my daughter. I have a hard time with the words like "was" or anything that means past tense. Juliana was diagnosed with acute myeloid leukemia (AML) on November 14th, 2009. One of the days I will never forget. From that day forward everything changed. At the time my wife was ~7 months pregnant with Juliana's little brother Daniel. Our world has turned upside down several times over. My definition of time and what everything means has been forever altered.
Early on in her treatment we realized she needed a bone marrow transplant. Fortunately her older brother Andrew was a perfectly matched donor. We moved our whole family to Boston for her treatment. As hard as it is through all the ugliness looking back there was also beautiful golden moments etched in my memory forever. We were roommates in the hospital, at one point we had spent ~60 nights in a row overnight in the hospital.
One morning I was half asleep on the window bed in the room and heard Juliana waking up. She pulled herself up on her bed and was looking out the window and in the most beautiful little girl voice said "Suns up Daddy" when she saw it was morning. That ever since has stuck with me as a mantra.
I was lucky in one way to be able to spend a lot of time with Juliana, as opposed to other fathers who were unable to because of different circumstances beyond their control. I took a lot of pictures and videos of JJ during that time which I am very grateful having today.
Since 2011 I have witnessed amazing acts of unselfish giving and have learned the true meaning of what is important in life. What has helped to keep me sane and going since Juliana passed away has been St Baldrick’s. St Baldrick’s day at Kitty Hoynes has turned into somewhat of a holiday for not only me but many other people who remember her. It is difficult to put into words the powerful feeling of being surrounded by people that choose to honor Juliana and have become so passionate about participating.
Thank you to all of those who have joined me in this critically important cause. I am inspired by everyone's relentless energy and love you all for always remembering Juliana! JJ Forever!!
Donations made to the JJ's Angels Fund have funded a St. Baldrick’s Fellow grant for Yamilet Huerta, M.D. Dr. Huerta is researching Acute Myeloid Leukemia at University Hospitals Cleveland Medical Center in Cleveland, OH.
The St. Baldrick’s Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.
Start your own St. Baldrick’s head-shaving event to raise money on behalf of our Hero Fund! You’ll be paired with a staff member who will walk you through every step of the process, and you’ll have fun knowing you’re doing a great thing for kids with cancer.
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