Last week our artists went into the oncology/hematology waiting room at Lucile Packard Children’s Hospital. Once a month we go in and do art with the pediatric cancer children and families while they are waiting for their appointments. As the artists entered the waiting room they noticed that there was only one girl and the rest of the patients were boys. They weren’t sure if they would come and create art with them. However once they laid out all the art materials, all of them flocked to the tables. One mom told an artist that her son does not really like art and she was really surprised to see that not only did he sit down and create three pieces, he did not want to leave even though his appointment was over.
Most all parents, whether they are bringing their children for a routine blood test or a transfusion, will have a bag packed and ready in their car in case they have to stay back in the hospital due to abnormal blood counts, low immunity, or other reasons. What impact do you think this has on the child, the sibling, the caregivers not knowing what can happen at any given moment?
Once the diagnosis is made and you are labeled a ‘cancer family’ the road to a cure is a tumultuous one. You become part of a protocol, you almost become a number, your identity is the diagnosis, whether it is Leukemia, Lymphoma, Neuroblastoma, Osteosarcoma, or another type of cancer. You become a research study.
When my son was diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of 3, I was working full-time. My husband had the insurance from his company so we made a decision that I would quit and become a full time caregiver. I’m really glad we made that decision because what came ahead was nothing we had ever imagined. To make sense of the hours we were in and out of the hospital, to balance the number of times we were quarantined, to support the many days of being by ourselves, I started taking my son to art classes where there wouldn’t be too many kids. I signed him up for Kindermusik so that he could feel elevated in his spirits. At home I started doing art projects with my son and his older brother and I saw how much they enjoyed it. I saw that the treatment had really left us isolated in many ways. If my son had low immunity, all four of us had to stay away from people. I realized that my older son was equally impacted.
Creating art provides a distraction, giving your brain a break from your usual thoughts.
The average person has 60,000 thoughts per day and 95% of them are exactly the same day in, day out! (2)
When you get totally immersed in a creative endeavor, you may find yourself in what’s known as “the zone” or in a state of “flow.”
Amaey creating art with artist Sanjay Patel
In the hospital waiting room, I ended up seeing the same faces over and over and little by little my art community grew to include all those kids. That is how Kids & Art was born. When I founded it in 2009 I had never imagined that I would, one day, go full time on it. My son believed in Science. My husband believed in the statistics. I believed in what I was hearing from the doctors. I hung on to every word and believed that if we were in the market to shop for cancer, Acute Lymphoblastic Leukemia would have been the best because it had 85% survival rate. We were in the 85%!
Little did I know then that being a boy was already running against my son because he relapsed with testicular ALL. The irony of all this is, I was nominated for the 2009 Woman of the Year campaign with the Leukemia & Lymphoma Society. My son should have been done with his 3.5 yr treatment and I was to celebrate him as cancerfree during my campaign. As I went to win the nomination, my son had relapsed. Nothing made sense at all. Here I was at our gala auction where we were displaying beautiful works of art created by the kids who were fighting cancer and their siblings and here was my son, now 6.5 years old going in for another 2 years of treatment.
However, standing at the gala with all the art created by these brave kids and watching at all the kids guard their bid sheets in amazement that people were actually fighting over their art, was a reassuring feeling that maybe all this color will balance the chaos in our life.
Studies have shown that the arts and creative expression improve the well being of cancer patients and their care circles.
Fast forward to 2011, my son relapses yet again, but this time with a chemo induced AML. A very aggressive form of cancer. After a 10–10 donor matched Bone Marrow Transplant and very challenging 55 days quarantined in the hospital. My son passed away after battling cancer for 6 of his 9 years.
Each day, 43 children are diagnosed with cancer; an average of 6 die every day.
The 55 days in the hospital were manageable somehow because of the hope, the hope that we will see the light at the end of the tunnel and with a constant supply of art projects and a keyboard in his room.
In 2013, after turning my back on Kids & Art for more than a year, I went back to it because my older son insisted that, that is what his brother would have wanted and because nothing else made sense in my life.
Dr. John Graham-Pole is a retired pediatric oncologist who wrote poetry to process some of the grim realities he faced working at a hospital. (28)
He believes that “Art is a social determinant of our health. It doesn’t cure a particular disease, but benefits whatever ails you.”
Today, when I look around my house and see all the art on my walls that was created by the boys, I see their smiles, I see their love, I see the memories. I really do not see the cancer in them. The art is here as a lasting memory of the tenacity these kids show even though they have so much else going in their little lives.
Artist Elle Luna creating art with our pediatric cancer child
Art by Gilina, age 9, Leukemia survivor
Art workshop at Google for our pediatric cancer families
To me, Kids & Art is here to empower the kids and to heal them and their caregivers in a way that is not measurable in numbers but truly measurable in their smiles and in their need to help.
The organization serves to help children find moments of happiness in the midst of their illness.
So what do you think, can art heal?
All our art workshops are free for our pediatric cancer families. Ask how you can help? Volunteer with Kids & Art as an artist or as an adult or teen volunteer. Donate to heal through the arts.
For more information go to www.kidsandart.org