It’s a six-letter word, one of the most familiar in any language: family. Simple as it sounds, its true meaning can’t be found in any dictionary. Instead, each person defines it through a unique set of experiences. For Joe Alire, family has a dual meaning. It is at once his greatest source of both strength and weakness.
Spend a couple of hours with Alire, 29, and it’s easy to see him as a lucky man. He and his wife Antoinette have been together for 11 years after meeting as teenagers living in the same neighborhood in Pueblo. Expressions of love for each other are visible not only in the easy way they talk to and look at each other and swap stories, but also on their skin: the tattoos of one another’s names and the forearm etchings Mickey and Minnie Mouse that meet in a kiss when Joe and Antoinette bring their forearms together.
When Joe speaks of their three daughters, Alizae, 8; Jazmyn, 6; and Ezmariah, 3, his love shines through again. They are his “little punkettes,” to whom he is imparting the values he learned from his father growing up in Alamosa. Follow the Golden Rule. Tell the truth. Hold closest the ones who share your blood.
“Family is the important thing,” he says. He talks of losing friends in Pueblo to drugs and crime. “I hate seeing them like that. I just trust my family now.”
Antoinette delivers the same message. In talking to their daughters, she says, “We’ve just installed in their brains that [family] is what you have for the rest of your life. Lean on them. They are here for you.”
But family defines Joe’s life in another, darker way. It’s why he and Antoinette speak with a visitor in a room in the Anschutz Inpatient Pavilion of the UCHealth University of Colorado Hospital on the Anschutz Medical Campus. Wire thin, Joe speaks in a whispery voice as he sits in a chair hooked to IVs, one of which delivers pain medication.
Joe suffers from renal cell carcinoma, a cancer that attacks the kidneys. He’s been in and out of the hospital since his diagnosis, enduring surgeries and debilitating pain from tumors that at times have made it difficult to breathe. He has, in the words of his University of Colorado Cancer Center medical oncologist, Dr. Thomas Flaig, a “high volume of disease” that has spread beyond his kidneys.
A tough hand, to be sure, but for Joe, there is a crueler twist. His renal cell cancer is a rare hereditary form known as Von Hippel-Lindau Syndrome. The disease claimed the lives of one sister and his mother; his oldest sister, still alive, also suffers from it. Because Joe carries the genetic mutation responsible for the cancer, his daughters have a 50 percent chance of carrying it themselves.
“Ain’t no cure for it, ain’t no stopping it,” Joe says.
His future may be uncertain, but Joe and Antoinette aren’t letting the disease rob them of their spirit. With the help of the Palliative Care team at UCH, they are shining light through the shadows of serious illness, weaving positive experiences and memories into the lives of their children, and detailing Joe’s legacy as a son, brother, husband and father.
The art of care
They’ve done that in tangible ways with the help of Amy Jones and Angela Wibben, art and music therapists, respectively, with the Palliative Care team. Working with the entire Alire family, Jones and Wibben have helped create pieces of art and music tied to their lives – remembrances that are “intimate, profound and meaningful,” in Wibben’s words.
Jones and Wibben joined the Palliative Care team late in 2016 after UCH Chief Medical Officer Dr. Jean Kutner – a palliative care specialist – joined with her father Fred to create a creative arts therapy program to honor the memory of Dr. Kutner’s mother and Fred’s wife Natalie, an artist in her own right. Jones, a registered art therapist and licensed professional counselor, and Wibben, a board-certified music therapist, use the arts to tap into the memories and experiences that mold meaning in the lives of patients with serious illnesses, as well as the loved ones who care for them.
For Joe and Antoinette, the meaningful mold was literal. On a bright September morning, Jones brought plastic buckets into the hospital room, along with material to create a keepsake symbolizing the couple’s commitment to one another. Jones ran water into a bucket and added alginate, a molding material. When the mixture was ready, Joe and Antoinette put their hands together, palm to palm, and submerged their hands. After a time, they gingerly withdrew them, leaving Jones with the shapes she used to create a cast of hands pressed together.
The cast, which was Antoinette’s idea, is just one of several items the Alires created with Jones during several hospital stays after his diagnosis in May. All of them carry personal meaning. The kids pitched in to create a mermaid – a favorite of Ezmariah, the youngest – with paints and collage materials. Antoinette painted a small box in orange and blue, a nod to Joe’s loyalty to the Denver Broncos. Wallet-size family photos formed the leaves of Joe’s family tree.
All these ideas and others sprang from the stuff of the Alires’ lives, Jones stressed. That’s the case with any patient with whom she and Wibben work.
“We listen to their story and translate that to an art piece or composition,” she said. “It’s a collaborative process.”
Rhythms of life
The same morning, Wibben dropped by to work on another request to preserve Joe’s legacy. The basic idea, one Wibben has played out with other patients, was to record the sound of Joe’s heartbeat using a special stethoscope. Later, Wibben would accompany herself on guitar or piano while singing songs specifically selected by Joe – including ones with special meanings for each of his daughters – at the tempo established by his heartbeat.
Sitting across from Joe and Antoinette, Wibben talked with them about song ideas. “It’s so hard to pick a song out of your brain,” Joe said, before tossing out Keith Urban’s “Blue Ain’t Your Color.” After Wibben asked about “a special song you two have,” Antoinette mentioned “Always and Forever,” a Luther Vandross ode to commitment.
“Much like with a drum set, rhythm is the foundation of music. Your heartbeat – your heart – will be the foundation of whatever music you pick,” Wibben said to Joe. “It will drive this piece of music and make it all the more meaningful because it is truly your heart – your heart for your girls.”
As Wibben continued to speak with him, Joe recounted again his bedrock values, recalling in particular his father’s commitment to doing unto others as you would have them do unto you and telling the truth. Wibben then recorded him reciting the Golden Rule as well as well as a closing, “Good night, sleep tight, don’t let the daddy bug bites,” his established bedtime wish for the girls.
“Saying it in your voice informs them throughout life of the message of the things you value and you want for them, your wishes for them,” Wibben said. “You saying it speaks the loudest.”
Search for meaning
The work that Jones and Wibben do with the Alires and other individuals and families isn’t medical in the traditional sense, but it is an important part of patient care, said Dr. Jeanie Youngwerth, director of the Palliative Care Service at UCH. Joe’s case illustrates the point, she noted.
“The art is a way to express yourself without words to his family, including his little girls, about those things that are most meaningful and that matter most to him,” Youngwerth said. “To be able to engage in the opportunity helps to make a difference in his care.”
In addition, Jones said, those enduring serious disease frequently lose the autonomy that is so essential to their sense of self. Giving them a choice of materials with which to create something of personal meaning is valuable.
“People have few options when they are in the hospital,” she said. “We bring in the possibility that they are the ones in control.”
That’s a powerful contribution to patient care, Flaig said, because it focuses those who are ill on the substance and meaning that built their lives, rather than on the things disease takes away from them.
“When I started as an oncologist with all good intentions and eagerness, I didn’t always fully appreciate the importance of social support, family connections, and spiritual well-being,” he said. “I thought it was just important to give patients the right drug at the right time. I still think that is important, but over time I’ve come to appreciate that it helps with outcomes when people have that support and have a spiritual sense of themselves and how they fit into the larger world. I can’t prove that, but it’s my sense, and it certainly helps them to deal with whatever is ahead.”
A team fight
What lies ahead clinically for Joe Alire is radiation and IV-delivered immunotherapy, a promising pathway for treating kidney and other types of cancer. Flaig described the treatment as an “immune checkpoint inhibitor.” Some of the tumor cells, he explained, express a cell marker that prevents the immune system from “seeing” them and attacking them. The immunotherapy “turns off” this internal immune system “braking system” which is being corrupted, freeing the body to launch a counteroffensive against the disease, Flaig said.
Immunotherapy has shown some success in producing “durable, ongoing” responses and improving the quality of life for a subset patients, he added, but he cautioned that it can also produce serious side effects. Most notably, removing the “brake” on the immune system can cause it to attack not only the tumor, but other organs of the body, much like an autoimmune disease.
The importance of palliative care and its emphasis on helping patients determine their own wishes for the kind of care they receive and their personal choices for bearing the burden of disease is profound, Flaig added.
“I appreciate that as an oncologist, I can’t do everything,” he said. “It takes a team of people. Palliative care is invaluable, particularly in difficult visits with tough news to give patients, with tough prognoses and complicated, technical decisions around cancer treatment. I know that in those cases, palliative care is there to help patients with other things that are so critical to the context of their lives.”
For now, the Alires continue to write positive chapters in a story that could so easily tend toward despair. On that September morning, they were preparing to leave UCH for Pueblo, where Joe would surprise oldest daughter Alizae, whose birthday was the following day. The family celebrated with a visit to the Denver Aquarium that was arranged with the help of the UCHealth Marketing team, which provided them tickets.
That simple but meaningful gesture and the work of Jones, Wibben, Flaig and the entire team at UCH have helped to ease at least a bit of fear and uncertainty Joe’s cancer has brought into their lives.
“It’s stressful. A lot of things run through my mind,” Antoinette said. “Our kids know their dad is in a lot of pain. They are usually scared of the hospital. They think that people go there to die. I explain to them that, no, they are there to help us.”
The help at UCH shows that science and art can join hands in the service of patient care. “The creative arts therapy program provides an invaluable resource to our patients and families dealing with serious illness” Dr. Jennifer Seibert of the Palliative Care team wrote in an email. “Allowing our patients a haven of creativity, imagination, joy and meaning, beyond physical suffering, is one of the greatest gifts we can offer.”
To learn more about the Creative Arts Therapy Program and ways to donate to it, contact Cheryl Balchunas at 303-724-6871 or Cheryl.Balchunas@ucdenver.edu.
Send donations to the Creative Arts Therapy Program (Fund 0222843), CU Foundation, Mail Stop A065, 13001 E. 17th Place, Aurora, CO 80045 or visit the CU Foundation website.