We (Children's Healing Art Project) have recently expanded our programs to serve the AYA population. AYA is an acronym for ‘Adolescent and Young Adult’. This program started on August 29, 2012. The program offers one-on-one art for patients with assorted cancer diagnoses.
I will share with you one tale from AYA. On November 1st I was asked by the AYA Program Coordinator to check on a particular patient. I will refer to him as Som. I walked into his room. Som was propped up in bed and had a tremendous amount of sutures in his scalp. Most notably, he was missing part of his skull. This was obvious because his scalp was sunken in this area. The divet in his head must have been 5” in diameter. After a brief moment of taking all that in, I introduced myself and asked the gentleman if he would like to make some art today. It was extremely hard for Som to speak. One of our initial exchanges was very belabored. It took him quite a few tries to get the works out. In the end, he was asking me to turn the light off in his bathroom. Ah! We had communicated. I turned the light off for him. As we spoke, he would at times get words out successfully and other times the words were indecipherable. I sat with him and said, “Take your time. Go easy on yourself. You have been through a lot. Be gentle with yourself.” At one moment of intense frustration, he leaned his head back on his pillow and if to say, “It’s too hard to talk!” He started to cry a little bit & I gave him a couple tissues. Som did accept my invitation to do some jewelry making. His hands were too shaky to thread the beads onto the string. I said, “Don’t worry. I can do it for you.” So I would add a few beads and hold it up for him. He would review my work and give me the green light to continue. Som’s language has so clearly been impacted by whatever cancer has been affecting his brain. At one point, Som’s nurse came into the room. The nurse was very upbeat & friendly. He asked me if I was making a good luck charm for Som. I said, “That’s a neat way to think about it. I suppose the answer is yes!” I finished the necklace of amber, black & white glass beads. I placed it around Som’s neck. I said here is your good luck charm. He started to cry again. I took his hand. And he squeezed my hand tightly. I said, “I feel your strength. “ He was really holding onto my hand in a very meaningful way. I said. “I am glad we got to work together. I am glad I got to sit with you for awhile.” I exited the room and my head was reeling. It had been a very profound interaction. I think Som was sincerely grateful to have someone sit by his side and witness what he is going through.
The following Thursday, when I went to do AYA Bedside, Som was there again. He was in a different room this time. A plate must have been placed back in his skull. It was no longer sunken. Guess what was around his neck one week later? The good luck charm we had made together. His spirits were better. It was still frustrating for him to talk, but we managed a version of a conversation. We made another necklace. When finished, I asked if he wanted me to take off the 1st necklace and put this new one on him. He said no. He wanted both on at the same time. I reached around his head and put the second necklace on him. He told me that he was expecting to get discharged either that night or the next day. He didn’t cry this time. He just said, “I’m going to miss you.”