{"id":18656,"date":"2018-09-28T09:05:28","date_gmt":"2018-09-28T15:05:28","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=18656"},"modified":"2024-08-15T16:38:24","modified_gmt":"2024-08-15T22:38:24","slug":"creative-arts-therapists-help-man-and-his-family-navigate-devastating-cancer-diagnosis","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/creative-arts-therapists-help-man-and-his-family-navigate-devastating-cancer-diagnosis\/","title":{"rendered":"Creative arts therapists help man and his family navigate devastating cancer diagnosis"},"content":{"rendered":"
<\/div>

It\u2019s a six-letter word, one of the most familiar in any language: family. Simple as it sounds, its true meaning can\u2019t 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.<\/p>\n

\"Joe
Joe and Antoinette Alire navigate a rare renal cell carcinoma known as Von Hippel-Lindau Syndrome.<\/figcaption><\/figure>\n

Spend a couple of hours with Alire, 29, and it\u2019s 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\u2019s names and the forearm etchings Mickey and Minnie Mouse that meet in a kiss when Joe and Antoinette bring their forearms together.<\/p>\n

When Joe speaks of their three daughters, Alizae, 8; Jazmyn, 6; and Ezmariah, 3, his love shines through again. They are his \u201clittle punkettes,\u201d 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.<\/p>\n

\u201cFamily is the important thing,\u201d he says. He talks of losing friends in Pueblo to drugs and crime. \u201cI hate seeing them like that. I just trust my family now.\u201d<\/p>\n

\"Mickey
Mickey and Minnie Mouse tattoos on the Alires\u0092 forearms are a constant reminder of their connection to one another.<\/figcaption><\/figure>\n

Antoinette delivers the same message. In talking to their daughters, she says, \u201cWe\u2019ve 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.\u201d<\/p>\n

Family fight<\/strong><\/h2>\n

But family defines Joe\u2019s life in another, darker way. It\u2019s why he and Antoinette speak with a visitor in a room in the Anschutz Inpatient Pavilion<\/a> of the UCHealth University of Colorado Hospital<\/a> 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.<\/p>\n

Joe suffers from renal cell carcinoma, a cancer that attacks the kidneys. He\u2019s 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<\/a> medical oncologist, Dr. Thomas Flaig, a \u201chigh volume of disease\u201d that has spread beyond his kidneys.<\/p>\n

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<\/a>. 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.<\/p>\n

\u201cAin\u2019t no cure for it, ain\u2019t no stopping it,\u201d Joe says.<\/p>\n

\"Joe
Joe and Antoinette at the Denver Aquarium with daughters (from left) Jazmyn, Alizae and Ezmariah. The UCHealth Marketing team helped to arrange the trip for Alizae\u0092s birthday. Photo courtesy Antoinette Alire.<\/figcaption><\/figure>\n

His future may be uncertain, but Joe and Antoinette aren\u2019t letting the disease rob them of their spirit. With the help of the Palliative Care<\/a> 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\u2019s legacy as a son, brother, husband and father.<\/p>\n

The art of care<\/strong><\/h2>\n

They\u2019ve 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 \u2013 remembrances that are \u201cintimate, profound and meaningful,\u201d in Wibben\u2019s words.<\/p>\n

Jones and Wibben joined the Palliative Care team late in 2016<\/a> after UCH Chief Medical Officer Dr. Jean Kutner\u00a0<\/a>\u2013 a palliative care specialist \u2013 joined with her father Fred to create a creative arts therapy program to honor the memory of Dr. Kutner\u2019s mother and Fred\u2019s 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.<\/p>\n

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\u2019s 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.<\/p>\n

The cast, which was Antoinette\u2019s 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 \u2013 a favorite of Ezmariah, the youngest \u2013 with paints and collage materials. Antoinette painted a small box in orange and blue, a nod to Joe\u2019s loyalty to the Denver Broncos. Wallet-size family photos formed the leaves of Joe\u2019s family tree.<\/p>\n

All these ideas and others sprang from the stuff of the Alires\u2019 lives, Jones stressed. That\u2019s the case with any patient with whom she and Wibben work.<\/p>\n

\u201cWe listen to their story and translate that to an art piece or composition,\u201d she said. \u201cIt\u2019s a collaborative process.\u201d<\/p>\n

Rhythms of life<\/strong><\/h2>\n
\"Joe
Joe and Antoinette plunge their hands, palm to palm, into a bucket of molding material.<\/figcaption><\/figure>\n

The same morning, Wibben dropped by to work on another request to preserve Joe\u2019s legacy. The basic idea, one Wibben has played out with other patients, was to record the sound of Joe\u2019s heartbeat using a special stethoscope. Later, Wibben would accompany herself on guitar or piano while singing songs specifically selected by Joe \u2013 including ones with special meanings for each of his daughters \u2013 at the tempo established by his heartbeat.<\/p>\n

Sitting across from Joe and Antoinette, Wibben talked with them about song ideas. \u201cIt\u2019s so hard to pick a song out of your brain,\u201d Joe said, before tossing out Keith Urban\u2019s \u201cBlue Ain\u2019t Your Color.\u201d After Wibben asked about \u201ca special song you two have,\u201d Antoinette mentioned \u201cAlways and Forever,\u201d a Luther Vandross ode to commitment.<\/p>\n

\u201cMuch like with a drum set, rhythm is the foundation of music. Your heartbeat \u2013 your heart \u2013 will be the foundation of whatever music you pick,\u201d Wibben said to Joe. \u201cIt will drive this piece of music and make it all the more meaningful because it is truly your heart \u2013 your heart for your girls.\u201d<\/p>\n

As Wibben continued to speak with him, Joe recounted again his bedrock values, recalling in particular his father\u2019s 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, \u201cGood night, sleep tight, don\u2019t let the daddy bug bites,\u201d his established bedtime wish for the girls.<\/p>\n

\"The
The finished casts of the Alires\u0092 hands that Jones produced. They are a memento of the couple\u0092s devotion to one another.<\/figcaption><\/figure>\n

\u201cSaying 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,\u201d Wibben said. \u201cYou saying it speaks the loudest.\u201d<\/p>\n

Search for meaning<\/strong><\/h2>\n

The work that Jones and Wibben do with the Alires and other individuals and families isn\u2019t medical in the traditional sense, but it is an important part of patient care, said Dr. Jeanie Youngwerth<\/a>,\u00a0director of the Palliative Care Service at UCH. Joe\u2019s case illustrates the point, she noted.<\/p>\n

\u201cThe 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,\u201d Youngwerth said. \u201cTo be able to engage in the opportunity helps to make a difference in his care.\u201d<\/p>\n

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.<\/p>\n

\u201cPeople have few options when they are in the hospital,\u201d she said. \u201cWe bring in the possibility that they are the ones in control.\u201d<\/p>\n

That\u2019s 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.<\/p>\n

\"Pieces
This\u00a0family tree is a\u00a0keepsake created with Joe’\u0092s daughters to preserve memories of him.<\/figcaption><\/figure>\n

\u201cWhen I started as an oncologist with all good intentions and eagerness, I didn\u2019t always fully appreciate the importance of social support, family connections, and spiritual well-being,\u201d he said. \u201cI 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\u2019ve 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\u2019t prove that, but it\u2019s my sense, and it certainly helps them to deal with whatever is ahead.\u201d<\/p>\n

A team fight<\/strong><\/h2>\n

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 \u201cimmune checkpoint inhibitor.\u201d Some of the tumor cells, he explained, express a cell marker that prevents the immune system from \u201cseeing\u201d them and attacking them. The immunotherapy \u201cturns off\u201d this internal immune system \u201cbraking system\u201d which is being corrupted, freeing the body to launch a counteroffensive against the disease, Flaig said.<\/p>\n

Immunotherapy has shown some success in producing \u201cdurable, ongoing\u201d 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 \u201cbrake\u201d on the immune system can cause it to attack not only the tumor, but other organs of the body, much like an autoimmune disease.<\/p>\n

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.<\/p>\n

\"\"
Music therapist Angela Wibben records Joe\u0092s heartbeat, over which she will play and sing music selected by him, Antoinette and his three daughters.<\/figcaption><\/figure>\n

\u201cI appreciate that as an oncologist, I can\u2019t do everything,\u201d he said. \u201cIt 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.\u201d<\/p>\n

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.<\/p>\n

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\u2019s cancer has brought into their lives.<\/p>\n

\u201cIt\u2019s stressful. A lot of things run through my mind,\u201d Antoinette said. \u201cOur 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.\u201d<\/p>\n

The help at UCH shows that science and art can join hands in the service of patient care. \u201cThe creative arts therapy program provides an invaluable resource to our patients and families dealing with serious illness\u201d Dr. Jennifer Seibert of the Palliative Care team wrote in an email. \u201cAllowing our patients a haven of creativity, imagination, joy and meaning, beyond physical suffering, is one of the greatest gifts we can offer.\u201d<\/p>\n

 <\/p>\n

To learn more about the Creative Arts Therapy Program and ways to donate to it, contact Cheryl Balchunas at 303-724-6871<\/span> or\u00a0<\/em>Cheryl.Balchunas@ucdenver.edu<\/em><\/a>.<\/em><\/p>\n

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\u00a0<\/em>CU Foundation website<\/em><\/a>.<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

It\u2019s a six-letter word, one of the most familiar in any language: family. Simple as it sounds, its true meaning can\u2019t 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 […]<\/p>\n","protected":false},"author":2143,"featured_media":18675,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[28,154],"class_list":["post-18656","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-cancer-care-oncology","tag-palliative-care"],"acf":[],"yoast_head":"\nCreative arts therapists help man and family navigate his cancer diagnosis<\/title>\n<meta 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