Families, caregivers, charities and research groups across the United States observe September as Childhood Cancer Awareness Month.

In the U.S., almost 13,000 children under the age of 21 are diagnosed with cancer every year; approximately 1/4 of them will not survive the disease. A diagnosis turns the lives of the entire family upside down. The objective of Childhood Cancer Awareness Month is to put a spotlight on the types of cancer that largely affect children, survivorship issues, and - importantly - to help raise funds for research and family support.

At Discovery Arts we bring the healing power of the arts to children with cancer, serious blood disorders and life threatening illness while they are in the hospital receiving treatment. Our “Arts Adventures” bring a tremendous amount of joy to the children and their families.

These very sick children all share one wish.... "to be normal".  Anything we can do to make their journey a little easier or a little brighter is our greatest wish.

All of our programs are offered free of charge to the hospitals, patients and their families. With support from corporations and private foundations, a committed circle of private donors, art supply manufacturers and an enthusiastic corps of volunteers, Discovery Arts now provides Arts Adventures programs to more than 3,500 critically ill children each year. 

If you have a calling to get involved please join us this month for our 30-30 Challenge, see the details here: http://www.discoveryarts.org/currently-playing.html

We are honored to serve these wonderful children and their families each and every week and all year long.

Earlier this month, 35 Edwards Lifesciences employees volunteered part of their day to decorate Bedside Adventure Kits for the children of Discovery Arts, as part of their ongoing "Strengthen Our Community” outreach program. Obviously there are a lot of talented and passionate artists at the global leader in the science of heart valves and hemodynamic monitoring. They donated enough art supplies, then decorated and filled more than 50 kits.

The entire cast and crew of Discovery Arts would like to extend a Warm Heartfelt Thank You to all of the Employees of Edwards Lifesciences who got creative for Discovery Arts ... You have brought joy into the life of a child. We hope you had fun!

Edwards Lifesciences' volunteers for this project included: John Bain, Nancy Boyd, Joyce Casella, Nicole Casella, Ginna Cuervo, Hang Dinh, Jessica Donovan, Kristy Faciane, Leslie Finney, April Frantzen, Diana Gonzalez, Nanette Henderson, Elsa Ibarbol, Priti Jhaveri, Jade Jourdan, Becky Kibbey, Laura Kibbey, Ric Kolibar, Frances Luong, Patrice Norton, Nicole Pascua, Jayshri Patel, Sharidan Railsback, Ashkan Rasooli, Bonnie Robinson, Karrie Rodriguez, Yolanda Saldana, Steve Shin, Taylor Strand, Andy Spilsbury Walker, Brian Williamson, Gayle Wills, and Amanda Zotinca.

... is the global leader in the science of heart valves and hemodynamic monitoring. Driven by a passion to help patients, the company partners with clinicians to develop innovative technologies in the areas of structural heart disease and critical care monitoring that enable them to save and enhance lives.

Edwards Lifesciences partners with physicians to innovate products designed to help patients live longer, healthier and more productive lives. Since developing the first heart valve in 1958, they have continued to meaningfully advance heart valve therapy and, more than 50 years later, remain the global leader in this field. In addition they also lead the development of new investigative technologies designed for the non-surgical replacement of heart valves.

... as a child dances into hearts at the Jane Pitt Pediatric Cancer Center

Discovery Arts is a 501(c)(3) nonprofit organization, serving 6 hospitals in California for 20 years. Mercy Children’s Hospital, in Springfield, MO, is the first hospital in the Midwest to be given the opportunity to experience Discovery Arts. The program has been at Mercy for nearly three years and just recently, I became the coordinator. “Our mission is to bring art, music, dance and drama to children with cancer, serious blood disorders and life threatening illness while they are receiving treatment.” For many, their greatest wish is normalcy.

Today was a day to remember. I would reach beyond the comfort I had found bringing Discovery Arts to the children hospitalized on the Pediatrics floor, by introducing myself and the program to the Jane Pitt Pediatric Cancer Center, a St. Jude Affiliate Clinic, at Mercy Children’s Hospital - Springfield. The walk down the hall was long in anticipation of all the new children. Emotions were evoked as images came to mind. I took a deep breath and opened the door to the new facility, pleasantly allured by colorful paintings and photographs, displayed with museum style and lighting.

I met a child, who instantly captured my heart. Today was her fifth birthday. She had a purple and white cake to celebrate. She wanted to see what gifts I brought for her and was ready to participate. I put on a CD of song birds to lead into the nature theme. She curiously looked around the room for birds. My artistic task was face painting. At first, it seemed to be too tickly, but she pointed to her foot. I painted a butterfly. She pointed to her other foot. I painted a heart. As I brought out costumes, she pointed to and put on the green fairy skirt and the matching headband with pink flowers. I handed her a silver, sparkly wand.

First she touched mommy with the wand. It was heartwarming. She quickly learned that the wand was magical and we were all under her spell, as she touched Child Life Specialists, Suzanne Cook, followed by Kristi Donovan and made them twirl. Of course I had a turn, as did the medical staff, whose watchful eyes peeked in because there was a party going on! She had to be disconnected from her IV, as she got up from her pillows and climbed down to twirl on the floor. She had just seen the movie Happy Feet, which explained her barefoot dance to the music she seemed to hear in her mind, though the room was silent.

I stood in the middle of a cancer center, with chills of an awakening perspective. I was in the presence of a precious, whimsical child, dressed up like a fairy princess with a smile that lit up the room, dancing freely across the floor in complete and total bliss. For a moment, she was able to forget about the lengthy treatments she was receiving. It was her birthday! She had a cake, a costume and was surrounded by love. For a moment, that was all that mattered. Yes, today was a day to remember.

Be a part of the promise that hospitalized children will be provided with all the creative and normalization opportunities as their “well” peers. Give generously to increase the quality of life for these children. How you can help!

~ Janel Alicia

We are celebrating with Jilly and her family and friends for a very special day on Sunday June 2, 2013. It's as good as another birthday ... We are so happy to share this special day with her as she has been Cancer Free for 5 Years! Jilly was a patient who we got to know very well during her stays in the hospital and we couldn't be any prouder to hear the good news!

"She LOVES Peter Pan and was one of our patients who we sponsored to go see Cathy Rigby at our Peter Pan Event!  As part of her 5 year cancer free party they are doing Bedside Adventure Kits to help the other kids in the hospital... Love does wonderful things doesn't it? Precious precious girl!", says Discovery Arts' Executive Director Marilyn Clements.

"The Will To Survive" is one story that speaks for thousands of cancer fighting children and families throughout the world.

Everyone's fight is different, but they all have one thing in common... "the fight for life".

Join Megan McNeil and all of the fighters that have jumped on board to raise awareness for both the need for research into childhood cancers and the support for families dealing with having a child diagnosed with cancer.

Megan has chosen to send proceeds from her song downloads to The James Fund for Neuroblastoma Research and BCCCPA, a childhood cancer parents' association.

Purchase Will To Survive by Megan McNeil

Since you are here on our blog you may all ready know that Discovery Arts is a very special organization that brings Music, Art, Dance and Drama to children who are in the hospital receiving treatment for cancer and blood borne diseases. These very sick children all share one wish.... "to be normal".  Anything we can do to make their journey a little easier or a little brighter is our greatest wish. We are honored to serve these wonderful children and their families each and every week and all year long.

I would like to share my experience, strength and hope to bring light to why this is so important to children and their families. It was under very blessed circumstances that I met Discovery Arts’ kind and loving Executive Director Marilyn Clements. It took some time for me to gather the strength to come forward to actively participate with Discovery Arts. I remained very much in the background for many years offering to help here and there when I could. You see … I had to gather up some healing before I felt strong enough to be able to give back, or strong enough to share my story. God in his mysterious way has led me full circle.

The impact of watching your child live their life in hospital rooms – takes some time to heal from, if you can call it healing. I am now convinced that there will never be total healing … just a different way of coping.

Many years ago, my first child a sweet baby girl, Ilona Rene was born in Wiesbaden Germany on January 1, 1981. It was also my first wedding Anniversary. Just days later the Iranian Hostages were released. They were brought to Wiesbaden AF Hospital to debrief before heading home to the US. You might remember on January 20, 1981 President Carter ended his Presidency and Ronald Regan was inaugurated. Within 24 hours former President Carter traveled to Wiesbaden Germany to personally greet the Hostages on their release on January 21, 1981, after 444 days in captivity in Iran.

I was told on January 1st, when Ilona was 8 hours old, that there was a problem with her heart and she was immediately transferred to a children’s specialty hospital in Wiesbaden. I was still a patient myself so I had to watch them take her away in an incubator. This was my first heart break and I was only 19 years old myself. That visual is burned in my memory bank.

When I could get to Ilona the next day she was in a shared room with a very young child who was connected to an Iron Lung. He was probably 5 years old. I will never forget walking into this hospital room – one tiny baby all connected up with her hands tied down and this 5 year old clamped down with a respirator. This young boy was fully conscious and alert. He could see my pain every time I walked in the room – yet he was the one with tears streaming down his face – and unable to speak to me. He didn’t know English and I didn’t speak his language, but we communicated a lot during those days and nights. All I could do was stroke his arm and hair and let him know that I cared deeply for him. He had long soft curly brown hair and big round brown eyes. In the days I shared with him not once did he have a visitor; no Mom, no Dad, no Grandma or Grandpa, no brothers or sisters. No One! One of the biggest regrets in life my … why didn’t I get his name? I still have a need to know.

Ilona was transferred to Wiesbaden Air Force Hospital when she was 14 days old. On approximately January 24th we were medevaced by helicopter to Landstuhl Regional Medical Center, a US Army Hospital in Germany. That’s when we were so graciously celebrated by the Iranian Hostages. They had been watching us board the helicopter; me, a nurse and Ilona in an incubator. This was all very surreal, I was buckled in sideways as we took off, looking out of the side window of the helicopter. I will never forget the view of the snow drifts around the helicopter as we were lifted up to eye level to see the hostages who were on the 3rd floor balcony of the hospital waving at us, wishing us God Speed.


Once at Landstuhl it got much more intense – long … long hallways to get to ICU. Rougher treatments, with lots of poking and prodding. Ilona had her first Cardiac catheterization (of 5 total), which is a tube inserted in her hip artery to her heart, for diagnostic evaluation. The Air Force put us up in housing, a lot like Ronald McDonald house, which was walking distance to the hospital. It’s there at Landstuhl that we met Christopher C. and his parents Lux and Craig. Christopher was a heart baby about 6 months old, in ICU in a bed next to Ilona. His Dad was stationed in Italy, and they were brought to Landstuhl to get help for Christopher. We had the same doctors and since we shared this common bond we became close friends with Craig and Lux. Christopher seemed to be doing ok. He also had big brown eyes and a generous smile to every one. His mom Lux was from Laredo, TX so you could see the fire in his heritage. He was a fighter, and he was strong. We spent lots of time with Craig and Lux supporting each other and getting to know each other well. We all decided to take a break one evening and played card games late into the night. We actually got a moment of relief and laughed a lot that night. The next morning as I walked into ICU – I found Lux who had told us Christopher passed away a couple hours before. We were devastated by their loss. They were quickly shipped out. As God would have it – they were there for us later in all places, Texas.

Ilona spent much of her life in and out of the hospital. At about 2 months old she was able to come home to Schierstein where we lived, in a suburb of Wiesbaden. Every morning rain or shine, (or snow), we would go to see her Doctor at Wiesbaden Hospital. She was teeny, only 5 pounds at birth and only 9 pounds at 10 months old when we were asked to travel to San Antonio, Texas to converge with a group of doctors who had been meeting with doctors from around the world in Dallas who were studying this type of heart defect. Ilona had Endocardial Cushion Defect; an abnormal heart condition in which the walls separating all four chambers of the heart are poorly formed. We also learned later she had Ventricular Septal Defect and a deformed left septum and her aortic valve was deformed to the point of being almost non existent and the tissue separating the chambers of her heart were actually valve tissue. All this made it taxing on her heart, which created cardiac pulmonary edema and also affected her breathing, to top it off as she grew her enlarged heart was pressing on all her other vital organs.