From September 2007 to June 2008, 8-year-old Colleen Moore bravely battled Osteosarcoma. Throughout this agonizing process, she rarely received the emotional and spiritual support she needed. There were a few bright spots, however, illustrating how a little creative thinking can have an immense impact in the life of a child with cancer. Here are some examples.Begin
The Sock Monkey
Like most cancer patients, Colleen needed to undergo a surgical procedure to place a port-a-cath in her chest, allowing medicine (including chemotherapy) to be pumped through a vein that led directly to her heart. Needless to say, this was a terrifying prospect for Colleen and her parents.
Enter the sock monkey. A Child Life Specialist gave it to Colleen and helped her "operate" on it to install the port-a-cath. Then she took Colleen on a field trip to the radiology department to x-ray the monkey. "While we're here," said the radiologist, "let's just get one of you, too." This cleverly eliminated the frightening build-up to the x-ray and helped make the whole port-a-cath procedure a little less scary.
The sock monkey became Colleen's favorite stuffed animal. Throughout her treatment, it was her “practice patient” for other procedures. Sadly, it also became a symbol of her emotional turmoil. Later in her treatment, she became depressed and non-communicative. In a moment of particular frustration, she took a pair of scissors and dug into the monkey, cutting out the port-a-cath.
Such a simple idea: tangible little rewards for the incredible bravery children must show throughout the countless procedures and milestones of cancer treatment. Sometimes called "Courage Beads" or "Care Beads," the program wasn't offered at either of the Triangle hospitals where Colleen was treated. But Diane learned about them online and ordered a set of beads for Colleen.
When first introduced to the idea, Colleen liked it, but Diane was sure it would have meant more if a nurse had presented the beads instead. "It's sort of like when you give your kid swimming lessons," she says. "It's not as exciting as if a swim coach does it."
Diane and her husband Vince later talked to the hospital about the beads, and now one of the area hospitals uses this program with all their childhood cancer patients. Learn more about this program by watching the Beads of Courage Videos located in our Video Gallery.
IV Pole Jewelry
Colleen and her parents were in "Pre-op" one day, waiting for surgery to install the G-Tube that would deliver liquid nutrition directly to Colleen's stomach. (She had lost 20% of her body weight to chemo.)
It was another one of the endless, tortuous waits that come with treating cancer. But this time, a Child Life Specialist appeared with a box of colorful beads for Colleen to play with. The beads were a hit. Colleen and her parents passed the time creating an assortment of decorations to hang from her IV pole. What a welcome distraction from the cold, frightening waiting room and the daunting procedure that awaited her!
In the operating room, Colleen told the doctors and nurses all about the "IV pole jewelry." Later, when she was feeling better, she insisted on taking IV pole jewelry to other children in the hospital.
The Gift Bag
It's amazing how far a little creativity and empathy can go toward softening even the toughest moments of cancer treatment. One such moment came in the hospital Resource Center, where Colleen had come with Diane to try on hats in anticipation of losing her hair to chemo.
On the doctors' advice, they had already trimmed her thick, shoulder-length locks to a few inches, avoiding the far greater anguish of watching her long tresses fall out. That haircut alone had been extremely upsetting for the little girl. Now, as she tried on hats, Colleen took one off and noticed a clump of her hair stuck inside it. She then reached up, gently pulled a handful of hair out of her head and handed it to her mother. As the women watched, Colleen repeated this action over and over with an eerie calmness, methodically handing almost all her remaining hair.
Diane remembers being very worried at that moment that she might not "be able to keep it together." But the compassionate Resource Center employee acted instinctively. "Oh, I have the perfect thing for this!" she said brightly, producing a cute, feather-handled gift bag that Colleen adored.
Today, Colleen’s hair is still in a zip-lock bag inside that pretty gift bag. It’s a lasting reminder of the power of thoughtful gestures in impossible situations. And it’s the real "gift" that was given to Colleen and her mother that day.
The Anesthesia Mask
At one of the hospitals treating Colleen, an anesthesiologist asked her which flavor of lip balm was her favorite. She applied this to the inside of the gas mask before putting it on Colleen’s face—thus covering up the nitrous oxide's unpleasant smell. It only took a moment. But small, empathetic gestures like these make a big difference to kids and families battling cancer.
The Feeling Journal
During the period of Colleen's treatment when neither she nor her family were getting the emotional support they needed, a family friend who was a professional therapist suggested starting a "Feeling Faces Journal." Each day, Colleen chose a feeling face that matched her mood, then wrote down three good things and three bad things that had happened that day.
Although she occasionally refused to participate and still resisted talking much about her feelings, the journal became part of Colleen's nightly routine. At least once a day, it gave her the opportunity to reflect on her emotional ups and downs.
After Colleen lost her hair, she asked to dye it pink when it returned. She was back home in hospice—with a half-inch of hair—when it was decided that her family and a group of close friends would join in on the pink proceedings. The day began with lunch and movies on the big-screen TV Colleen had received from the Make-A-Wish Foundation. Then a family friend dyed everyone's hair, including Colleen's father, Vince, who won the award for "brightest pink" (though that was probably because his scalp absorbed much of the dye). Even Gracie, the family dog, participated. It was a welcome afternoon of fun at a time in Colleen's treatment when smiles were getting difficult to come by.
Tabletop Photography by Bryan Rierson