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May 24, 2017

On Not Playing Favorites

Artwork created for a special birthday
Artwork created for a special birthday

Recently we learned that one of our patients was very ill. The kind of ill where there is nothing else to be done. CHAP has worked with this family over the years. The child holds a spot in our heart for many reasons - for his quiet nature, for his artistic talent.... We have fond memories of him painting a huge red flower years ago. It was featured in the last Art Show at the hospital. When the show came down, I gave the painting to his dad. He told me it was going to be hung in a prominent place in their living room. It made us happy knowing this.

Not long after learning that the child was terminally ill, CHAP found out that the child had a birthday coming up. Such a strange juxtaposition - to be anticipating a birthday while at the same time knowing that the end is near. The family told us the birthday was shared by a sibling as well. Wow. We offered to help them with preparations as it seemed likely they would still be in-patient.

Just a day or two before the planned birthday celebration, Maxine and I gave it our best effort to decorate the Play Room. We made a banner featuring the names of both siblings. The family, though typically very private, accepted our offer to help transform the Play Room into their party headquarters. Maxine made a huge and elaborate gold crown to place on the bulletin board. I wrote in my best cursive, "You are royalty," to keep with the theme the family had told us about. Just as Maxine was taping a lovely image of a tiered birthday cake to the child's door, another mom declared, "My son's birthday is on Sunday!"  

At this point, it was 4 pm on a Friday. The other child and his family were new to the unit, but also fantastic. We just couldn't deny him a little fanfare, too, in honor of his birthday. So Maxine and I dug our heels in and started focusing on the new boy. We did not want to be guilty of playing favorites. The minutes flew by and we were hustling. At 5 pm (when CHAP is usually starting to clean up), I laughed and said to Maxine, "Good thing we have a lot of years of art school between the two of us!"

With some scrambling and a little sweat on our brow, we got it done. All three children were fussed over. At 5:15 pm, Maxine and I did a version of Twister to get the huge crown - loaded with still-wet glitter glue and plastic gems - up and on to the bulletin board. It brought us a little closer indeed!

The following week, the Child Life Specialist, Susan, pulled me and Maxine aside. She told us that early that morning the child passed away. Our hearts went out to this dear family. Susan, in her grace, reminded us that the suffering is over for the child. The family was still sitting with the child in the room when we arrived on the floor at 12:30 pm. The beautiful birthday cake picture was still on the patient's door. A painting I created for the child weeks ago with a rainbow on it and "Hello, friend!" was still there too. Now there are two new signs on the door: "No Visitors" and "Please Do Not Disturb", in large black Sharpie. There's no gold paint or glitter glue involved. It's hard knowing that the patient has slipped away but that his body is still in there. Of all things, Super Heroes arrive on the floor so there is excitement in the hallway. The dichotomy is surreal. Three adults dressed up as various Super Heroes (Iron Man, Wonder Woman and Superman) visit each of the patients. His room is passed over with Susan effortlessly steering them accordingly. They give gifts and bring smiles to so many patients. Time keeps moving on the unit. The show goes on.

When I leave at 5:30 pm, the family is still sitting with their child. It is a solemn moment to pass that door. I give a quiet goodbye to them.

At 6:45 pm, Maxine sees what none of us wants to see. They are wheeling the child out of his room and off the floor. She tells me later that it's handled quickly and quietly with an expert level of discretion.  he is able to offer our sympathies to the father and give him a hug. Remarkably, the artwork goes home with the family. Maxine says the boy was whisked away in a bed with a canopy of crisp white sheets, like a boat sailing out to sea.  Like royalty.


Feb 23, 2017

Old and New

This summer marked CHAP's 10-year anniversary. It's a big milestone. When I stop to think about all the families we have worked with, it's staggering.

On a recent morning, I checked on my group of patients. I came to a certain room and as I explained what I was there for, the patient stopped me and said, "Remember me?  It's Jennifer*." The minute she said it, it all came flashing back. She looked so different. Thinner. Older. Older beyond her years. Just a few years ago, CHAP worked with this young lady over at the children's hospital. Now, she's a young adult and it took me by surprise to see her again. It was her voice that triggered my memory the most.

Jennifer did come & join me in the Family Room. She was so sweet and eager to do art. Instantly, her gaze was drawn to a familiar sight - a small Spirit House. It was perched on top of the refrigerator, right across the room from her.  I gathered colorful tissue paper and our special blend of water and Elmer's glue  If you get the ratios just right, it should resemble the consistency of milk. Jennifer got right to business, applying colors she liked + cutting little hearts out of the tissue paper. While she is hard at work, another patient enters the room. I have met this patient several times over the past few months. I am quite taken with her. She's so upbeat, fun and creative. Her name is Yvette*.  

The two women start talking. I find this to be an incredible pairing. Yvette is crafting another stunning necklace and Jennifer is slowly covering the plain cheesecloth surface with more pleasurable bursts of color. Yvette has this great style where she very thoughtfully selects her beads from one color palette and she she'll sneak in one random bead of a fully different color. This has become her signature move. The two artists could not be more different.  

Jennifer asks what kind of cancer Yvette is being treated for and how she found out she had cancer. It's such an unraveling. I will never forget a mom saying that when her young son was diagnosed it was "such an assault." I recall this phrase time & time again when I hear people speak of this moment. An assault. Yvette shares her story, freely. Jennifer tells her long and ongoing battle with cancer. There's no fairness to any of it.

The women are with me for an hour, perhaps more. When Yvette goes to leave, Jennifer says, "You are amazing and strong woman." Yvette receives this compliment with grace as she turns around and smiles., "I don't know it any other way."   

Jennifer says to me, "CHAP is great. You're like family!" While on FaceTime with her mom, she spins her camera around so that her mom can see me. A familiar face indeed. She thanks me for being there to make art with her daughter.  

Jennifer takes acrylic paint, a small canvas and some beads back to her room. We ran out of time, so she wants to be stocked up. Our art program returns in 1 week and those days are long for patients like Jennifer who are thirsty to do art, get out of their rooms and meet some of their amazing peers.

As I get ready to go, I pass Jennifer's nurse in the hallway. She remarks on Jennifer's energy before and after CHAP.  She said at the beginning of the morning, Jennifer was sullen and hard to communicate with. After being in the Family Room, the nurse could see such an improvement in Jennifer's energy. CHAP really enlivened her and improved her mood. What a pleasure to get that kind of support from the nursing staff. People are noticing the difference art can make. I was sure to give Yvette some credit, too, for helping make the experience so positive.

* Names have been changed to protect patient privacy 


Oct 27, 2016

Creating camaraderie + healing through art

In addition to serving children, CHAP also works with adults admitted to the OHSU Knight Cancer Institute. We wanted to share an experience from earlier this month. Thank you for making stories like these possible!! --- Sarah Panetta, Executive Director


"We Are All Connected"

Camaraderie.  Noun.  Mutual trust and friendship among people who spend a lot of time together.

This morning after being at work for just 10 minutes, a patient named Cathy* says to me, "This is a wonderful ministry you have here." She speaks these words as she glides into the Family Room and her eyes pour over the paint, beads and mandalas. Cathy places her walker off to the side and pulls a chair up to the table. "They almost seem... alive,"  she declares as she fingers through the collection of beads. She quickly decides to make a bracelet for her daughter. In order to select just the right colors, Cathy takes a picture of the bead assortment. With the help of her smartphone, she sends the photo to her daughter. Within minutes, her daughter replies: "Yellow with blue accents on a bracelet, please." I tell her this is the hunt & gather phase, as Cathy sorts through all the yellow and aqua blue beads. She is totally pleased with the selection. The increase in her energy is tangible. "This gives some purpose to the day. Oh, my goodness!"

As Cathy completes her bracelet, another woman named Maura* enters the Family Room. I have met her before on this unit. Her best friend Betty* has entered into "comfort care". This is denoted with a laminated piece of paper with the image of a white dove on the patient's door. Thankfully, the staff has already alerted me to the fact that we are losing this dear soul and very soon. Maura's heart is heavy with her friend's impending death. Cathy has met Maura, too. They talk over the bead table. Cathy is extremely sweet and supportive. The 3 of us start talking about singing. I tell Maura that Cathy has written a song and performed it for me. With not much cajoling, Cathy says she will sing it for her. Maura begs her to wait until she can grab Betty's sister, who will surely want to hear this.

Maura produces not just one, but two of Betty's sisters. A patient's spouse has joined our group. Our friend Cathy stands up in front of the five of us. This lady's strong and steady voice fills the room and surely trickles down the hallway. We're all captivated. At one point in the performance, she rips off her knit hat (shaped like a cupcake, no less) for dramatic flair. Her wild and thin hair is set free with this gesture. Cathy is a true performer and she has found her audience. We all clap for her. We learn that Betty was a fabulous singer, a lyric soprano, as one of her sisters tells me. I had been visiting Betty for months, but never knew that detail about her. This generates much conversation about Betty's beautiful voice. Even on the phone, her friends loved the sound of Betty's voice. Cathy wishes that she & Betty could have sung together.

The spouse who slipped in earlier has silently made a bracelet while Cathy was singing. She had been in the background through much of this, but then started opening up. She knew she had entered a safe place in that Family Room. She told us her story, her husband's sudden illness, how she strolls the halls of this hospital every time her husband is resting, trying to keep busy. Her journey is met and held with tenderness by the other women in the room. Cathy says, "This is what this floor is missing - camaraderie. But CHAP brought it with the bead table." Cathy turns to me and says, "Why aren't you here every day?"

When the group starts to say their good-byes, there are hugs and the extension of prayers in all directions. One of Betty's sisters says, "We are all connected." Everyone is amazed by each person's strength and perseverance in the face of cancer. No one's experience is minimized. Every woman honors the next. The time passes as a trifecta of crying, laughing and smiling. They all bear witness to each other. The stories are all slightly different, but in the end the same.  "That was inspirational," adds Betty's sister.

The spouse stays with me to make a few more things. She realizes I have alphabet beads and she wishes to make something with her husband's name on it. She collects more beads, blues and reds, the letters of his name. She helps me tidy up. She's so grateful for the interactions with these great women this morning. It felt like a sisterhood. It was. It is.


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