I get chills as I invoke the help of the angels I have known. This blog is for you. This blog is also for the survivors. This blog is for all the unsung heros…the siblings. This blog is for moms and dads. This blog is for the friends. This blog is for all whose lives have been touched by childhood cancer. This blog is for those that are too scared to speak of this crappy disease. This blog is for me.
Zen Buddhism teaches a concept of “beginners mind”, Shoshin. I guess that’s how I can do what I do. I approach my work with openness, eagerness, and lack of preconceptions. I ask that you do the same. View these images with love and empathy but not pity. It’s an additional hardship these kids have to face, making us adults feel better. Acknowledgment yes, weirdness and avoidance, no. They deserve to be celebrated like every other child. I have been on this journey for upward of 20 years. Tremendous wisdom and grace embody these young souls. Are they handpicked for a reason? Maybe an admonition to be grateful for every day and for everything. A reminder to not sweat the small stuff? To love deeply? To be compassionate? Maybe we don’t know the bigger picture, or maybe this is magical thinking, but that is what works for me. Totally by happenstance, I came upon a man, Abraham Thomas, the #1 Miami Heat Fan. I needed a “Heat” hat for a young boy at Susan B. Anthony’s Center for women in recovery. I inquired, no, he didn’t have a hat. He asked if the boy could read. I purchased two books, wrote a check for his church, and he would sign them for me. As he began to pen his signature, I saw a photo. I had taken this image. It was used at a funeral two months before. My eyes welled with tears and I had goosebumps on my skin. I was touched by a power greater than myself, by way of an angel, named Henry.
Demi, a natural model. A model who just happened to have cancer. I picked up her wig from Make a Wish. We hit the streets. She wasn’t a kid with cancer, she was a beautiful 14-year-old having fun. It wasn’t till we were finished did I see her pain. A few months later she passed at a place where she felt loved, Joe Dimaggio Children’s Hospital. Ten hours later, her brother Achilles was born. My friend Rolando taught me a word in Spanish that describes what I believe could be true, “Diocidencia”. Coincidences where God remains anonymous. Who knows…maybe?
I met Rolando 5 years ago when he came from Havana, Cuba for treatment. It’s hard to explain the bonds created. Mine is a very small part of the journey but it does have a lasting impact. A little kindness goes a long way. These children, these young adults, and their parents feel like family. There are great opportunities to love in challenging times. I highly recommend it.
September is Childhood Cancer Awareness month and it’s crazy that the research is so underfunded. Please keep that in mind if you are fortunate enough to make charitable donations. Two grassroots foundations that I work with are the Jessica June Children’s Cancer Foundation and the Love Jen Foundation. Stephanie’s family was supported by these foundations. Her smile is amazing. After graduating high school she hung up her dance tights and is now studying to be a nurse. She hopes to work in pediatric oncology. I’ve met many survivors who are in the field. It makes sense.
I did a photo shoot for the 10th anniversary of the Jessica June Children’s Cancer Foundation. We are planning another for the 15th! Sandra Muvdi lost her only child, Jessica, to cancer at the age of 7. She channeled her loss in a big way. She created a grassroots foundation to help families in financial crisis while navigating a child’s cancer diagnosis and treatment. Much good arising from deep pain. Making lemonade out of life’s lemons is an understatement. Rolando, Stephanie, Marianna, and Mackenzy are featured below. Marianna is in college at UF and was too busy for a reshoot. She asked that I include a couple of her thoughts as she is an advocate for childhood cancer. She speaks of not being heard, of caring adults who underestimate a child’s awareness. My guess, the discomfort factor. Her words: “it must have been nice being in the hospital, you probably didn’t even notice you were sick”. Most members of the childhood cancer club have distinct memories. Chemo, surgery and their after-effects don’t go away. “I don’t want to be a bummer but no one wants to hear me”. Schools reject her offer to speak at assemblies. “With awareness and research lives will be saved. We need to be heard”. Thanks, Marianna, you validated why I created this post. Mackenzy a couple of years later when she was 9. She is now 11 and is 5’4″. That’s two inches taller than me. She’s a beauty.
Strong bonds are made when we are in crisis. I’ve seen doctors treated like rock stars. The nurses, child life specialists, therapy animals, art therapists, and staff are lifelines in a hospital. Sometimes the connections are between patients. Zoey and Madison have something special. The age difference is of no consequence. I first met them as Madison got ready for A Prom to Remember. Zoey showed up with a corsage for her to wear. Another time Zoey got to put on some make-up for Joe D’s first in-house Prom. Madison is an accomplished rider and she received a thoroughbred jumper from Make a Wish. We met at the stable with the siblings. Maddie took Zoe for a ride in the ring. Their relationship is something special to see. While I was at MD Anderson helping my brother navigate cancer I was lucky enough to meet with 3 beautiful children. Sadly, Trinity and Audrey have angel status. Gotta love Facebook as it can provide great support. In addition to perpetuating the memories of lives cut short they raise awareness and funds for the cause. It is with the families blessings that I share images of Trinity, Audrey, and Sophia respectively. Luna the horse was a treat to work with. To me, this was Equine Assisted Therapy. And I guess she liked Trinity’s art too. Audrey’s brother Cole was her rock. At some point I would just like to do something for just the sibs. It’s a really hard position to be in and I don’t think they get their share of kudos.
Sophia and Luna. I call her the Horse Whisperer. She would not change out of her superhero costume. I thinks it’s appropriate.
Veronica. She watched Ellen DeGeneres daily while she was receiving chemo. She was invited to appear on the Ellen show. Ellen gave her a whole bunch of gifts, in addition, a $10,000 check for college. Veronica wants to help kids who went through what she went through…she wants to be a surgeon.
Appropriate last image. THANKS! YOU MADE IT TO THE END!