Home Away from Home

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How often is it in life that we truly feel at home in a place other than our own home? What are the ingredients that allow us to feel comfortable in our own skin, undefended, and at ease?

I seem to have stumbled upon many of these intangibles as I return for the seventh time in five years to the Czech Republic. Ostensibly I come here for work – collaborating with the Klicek Foundation to grow hospital play work in their country. We travel to various cities and venues, giving lectures to students and professionals of medicine, nursing, social work, psychology, and play work about the philosophy and logistics of providing humane, family-centered care to children and families facing medical treatment. I join them in the summertime to volunteer in their hospice summer camp.  But what happens here is so much more than work.

With each visit comes an immersion in the Czech culture, and more specifically, the culture of the family who sponsor my visits. In between travel and lectures, we gather at their hospice and home in the tiny village of Malejovice, about 40 kilometers southeast of Prague in the Bohemian countryside. Here in a century old schoolhouse on a small farm (replete with donkey, sheep, chickens, many cats and a dog), the Kralovitzes welcome children and families who seek respite and comfort from lives affected by illness, disability, and loss. It is not a hospice in the way most of us would imagine. It is neither a medical facility nor a place where children go to die. Rather, it is a retreat where individual children or the whole family can relax in a natural environment, receiving nurturing in the form of companionship, a warm and caring listening ear, opportunities for play and exploration of the surrounding fields, forrests, orchards and gardens, and astoundingly good and healthy food. One falls asleep to the quiet darkness of the countryside and awakens to the bray of the donkey. It is, quite simply, magic.

Daily outings to local farmers and vendors, for cabbage, potatoes, apples, bread, butter and other essentials are interspersed with visits to hospitalized children and home visits to grieving families in neighboring towns and cities. No trip seems too far if someone can be served. This past weekend, my hosts drove a six hour round trip journey so that a teen could enjoy a visit to the hospice following a hospital discharge post heart- transplant.

Over the past five years, I have joined the family in celebration of the anniversary of the Velvet Revolution, decorated Christmas gingerbread cookies, accompanied them to church, fetched water with them from a natural spring, traveled with a theater troop visiting holy places throughout the country, played with Roma children in their neighborhood, and viewed many monuments such as the sculpture memorializing  the children of Lidice, murdered during World War II,  and the sculpture honoring Jan Palach, the young man who set himself on fire in martyrdom in Wenceslas Square during the Velvet Revolution. We have traveled to the far corners of the Republic, and visited neighboring Poland and Austria. With each visit, Marketa draws up a map and schedule to help orient me. 

We have explored curriculum, translated documents, done voiceovers for video, co-presented at global conferences, met with political leaders, and have appeared on local Czech TV.  We have driven countless hours in cars, vans and their iconic 1950’s bus, stopping for never-ending errands and house calls.  We have shared life stories, played music, laughed and cried (Well — I’VE cried!) and sat talking by the fireplace late into the night. 

And so perhaps this is the secret ingredient, the simple yet rare experience of being included in everyday family life while pursuing a shared vision, that ill children and families everywhere might feel witnessed and safe. What we wish for them is what I end up experiencing in a profound way.

Free Talk: Medical Play Therapy & Child Life

Bank Street College Library

Presents…

Library Salon #15

Friday, March 9, 2018

5:30 to 7:30 pm

A panel discussion with child life practitioners
and alumni contributors to:

Moderated by: Troy Pinkney-Ragsdale, MA, CCLS, has over 25 years of experience in the field of Child Life, including directing several child life programs in the tri-state area. She has served as the director of the Child Life Masters Program at Bank Street College since 2004. She has been a member of the Association of Child Life Professionals, served as the Co-chair of Graduate Accreditation Task Force and member(2012-2014),  served as Director on the Board (2015-2017) and has been a member of the Education and Training Committee for many years.

Panelists:

Lawrence C. Rubin, PhD, the editor of the Handbook of Medical Play Therapy and Child Life, is a professor of counselor education at St. Thomas University in Miami, Florida, and an online lecturer at the University of Massachusetts. Dr. Rubin is a practicing psychologist in Fort Lauderdale, where he specializes with children, teens, and their families.
Jon Luongo, MS, CCLS, is a Bank Street graduate, past adjunct instructor, a delegate with 1199 Healthcare Workers’ Union, and a child life specialist at Maimonides Medical Center in Brooklyn, NY. He began his career in healthcare as a performer in the Big Apple Circus Clown Care Unit in 1997.
Suzanna Paisley, MS, CCLS, is a Bank Street graduate, a parent of two young children, and a child life specialist at Children’s Hospital Colorado. She has lectured on trauma processing with children of all ages at national child life conferences.
Deborah Vilas, MS, CCLS, LMSW, is a Bank Street graduate, a current faculty member, a writer and a public speaker. She has taught play techniques to child life students, hospital play specialists, nursing students, social workers and psychologists in 6 countries around the world.

Patty Weiner, MS, is a mother and grandmother whose career spans over 35 years as a child life specialist and educator. She is the founding director of Bank Street’s Child Life Program and is an educational consultant for The Making Headway Foundation in NYC.

Library Salons are a series of informal lectures, panels, and group discussions
held after hours on Friday evenings.Refreshments Provided#BankStreetLibrarySalon

Copyright © 2018 Bank Street College of Education, All rights reserved.

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Over the River And through the Woods to the Czech Republic I Go

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I greatly anticipated my fourth visit to collaborate with the Klicek Foundation in the Czech Republic. The cold weather brings to mind the song from my childhood of traveling via horse and sleigh through the woods to grandmother’s house. For me, it meant taking a new route flying to Prague via a stop over in Zurich, which provided me with my first glimpse ever of the majestic Swiss Alps. I had no idea they covered such an expanse.

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Our adventures began immediately, as Jiri and Marketa Kralovec included me in some important errands along the way from Prague to their home in the small village of Malejovice.  The Klicek Foundation has secured a plot of land close to the Motol Hospital, on which they will build a new hostel for parents of sick children visiting Prague for specialized medical care. Our assignment for the day was to measure the distance between several trees and a wall, so that an engineer could design the parking lot to meet the requirements of the environmental council.

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And so, armed with measuring tape and a clipboard, we gathered the necessary measurements. We then wound through the city, making stops at two publishing companies and an electronics store, where we gained sustenance in a lovely cafe to tide us over before the hour long trip home to the village.

Molly the dog and the many cats greeted us, and there was hot homemade soup waiting on the stove and a crackling fire in the green ceramic fireplace. Having missed a night’s sleep on the plane, I was happy to fall into bed in the dark country night, and I slept deeply without remembering my dreams until rising early for a full day’s work the next morning.

The first scheduled event was a gathering of three schools that are housed in one building in Prague. There are two secondary schools, one for nursing and one for social work, and a college of nursing. The students came together in a chapel at the school of nursing Jana Paula 11, and we presented a workshop on the value of play and the psychosocial needs of children in hospitals. The room was jam packed with young people, and the more interactive we got, the more engaged they became.

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Following this seminar, I accompanied Jiri and Marketa to a city council meeting where they advocated for permission to build upon the plot. There are many steps to take before they can announce the council’s approval and begin fundraising for their project. A well known actor, David Vavra,  who also happens to be an architect, is designing the building.

Following a challenging meeting, we headed over to the famous Old Town Square, to the medieval building that houses the Skautsky Institute. There we hosted a gathering of hospital play specialists that also included the medical director of a hospital on the northern border, a book publisher, and a British law student studying abroad at the Charles University. We discussed the challenges facing the profession, many of which involved issues of racism regarding the care of Roma families. The thorough marginalization of the Roma leads to trust issues between the families and the staff. The play specialists often feel overwhelmed by the intersectionality of the many societal factors that impact the lives of Roma families.  They feel helpless in the face of such poverty and hopelessness.

The law student, of Roma heritage, adopted by a British family, is researching the educational inequities and racism that Roma children face in Europe. He hopes to champion their cause as he progresses in his profession. He had connected with me after reading my blog about the children of Chanov — such a small world after all

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Child Life & Nursing: Practicing pediatric psychosocial support in Novy Jicin

 

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My recent visit to the Czech Republic, sponsored by the Klicek Foundation, included a return to the Mendelova Nursing School in Novy Jicin. This time, Maria Fernanda Busqueta Mendoza joined us from Mexico, and 50 students participated in our seminar, making it a great opportunity for global learning and a multicultural exchange of ideas. As you can see from the first photograph, the students were a lively bunch, and they eagerly participated in the highly interactive time we spent together. Jiri Kralovec served as our interpreter and his son, Jiri, touted  by Foto Video Magazine as this year’s hottest photographer on Instagram, documented our learning. Most of the photos below are his work.

Jiri and his wife, Marketa, started us off by sharing information about  the importance of play for hospitalized children and the history of their efforts to bring hospital play to the Czech Republic.  It has been a slow, uphill battle to change the hierarchal and disempowering bureaucracy of their medical system.  I followed with an introduction to the field of Child Life, the role of child life specialists in hospitals, and the possibilities for collaboration with nurses. I spoke about the role of play and community in the healing process, before moving on to some illustrative activities.

Sharing our own memories of play is one way to deepen our appreciation for the role of play in our lives and in the lives of children. I asked the class to think about their own childhood memories, using their five senses — what do they remember about their play environment? Did play occur inside or outdoors, or both? Were they playing alone, or with others? Did they play with toys, loose parts, or their imaginations? Are there sounds, smells, tastes or textures associated with their memories? What feelings are evoked in sharing them? The students paired up and took turns both sharing and listening to one another.

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Armed wth a deeper awareness of the value of play, the students were now ready to learn a bit about how to make procedures less frightening for children. I have always wanted to use role play as a way to demonstrate all the things that can go wrong during a procedure, and how minor changes can make things easier for medical staff, children, and caregivers. I took this opportunity and asked for volunteers. One young man played the patient. We instructed him to lie down and asked three others to pin him down to the table, much like medical personnel are likely to do when a child receives an IV. We demonstrated how the very act of being forced into a prone position increases one’s sense of vulnerability and loss of control.

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Add to that several adults talking at once, loudly over any protests you might make, telling you to stay still, not to cry, to be a big boy, not to look…. and you get the picture. Chaos, stress and shame accumulate to make for a disastrous experience for all.

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But there are some simple things that nurses can do, either alone or in partnership with play specialists, to change the outcomes of such procedures. It doesn’t mean that the child won’t cry, but it is more likely that the child won’t suffer emotional trauma, will return to baseline quicker, and the nurses can feel more successful and less like they are causing the child undue suffering.

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With these tips in mind, the students enacted a better case scenario, where the parent has a supportive role in positioning the child for comfort. The child is upright and held in a calming hug, rather than being restrained on the table. The child is given some choices, such as which hand to try first for the IV (the non dominant hand is preferable), and whether to watch the procedure or use a toy or book for distraction.

  • Electing one person to be the voice in the room,
  • encouraging the child to breathe deeply and slowly,
  • narrating each step of what the child will feel,
  • explaining how a tiny plastic catheter, not the IV needle, remains in the child’s hand to deliver medicine,
  • staying away from comparative or shaming statements,
  • and showing empathy

are all ways to provide psychosocial support, making the experience less traumatizing and painful for the child.  Accumulated painful and traumatic medical experiences can make children phobic and avoidant of medical care.

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We also spoke about non-pharmacological pain prevention and reduction. The interactive component of our lecture surely made our important information memorable. The action and laughter surely made more of an impression than a power point! We all reflected together about  how even adult patients can benefit from choices, information and empathy.

Back to the topic of play, we explored ways for the nurses to instill playful interactions into their communication with pediatric patients. Rapport building and distraction through the use of hand games is one way that they can put a child at ease. I demonstrated several hand games, and asked them to show me some of theirs as well.

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Our time with these wonderful students ended all too soon. We posed outside of the school for a photo with some of the Klicek Foundation hospital play specialists before heading to the historic square down the street. Around every corner of this country is a beautiful scene, no matter where you are!

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Prescription for Play: How Pediatric Play Promotes Health and Healing

I was honored and so excited to be interviewed by Photographer & Guest Writer, Marj Kleinman for her article at TocaBoca.com. She and I have much in common, including a deep passion for child life and play in hospitals, and the fact that we are both alums from Saint Ann’s School in Brooklyn, NY. She is a talented artist and used her creativity to write a photo journal of child life and play at Maimonides Hospital. I will publish that here next week. The Toca Boca article is reprinted here in full below.

Child life specialists support kids and families in a hospital environment, reducing stress and increasing joy.

Marj Kleinman
BY
Marj Kleinman, Toca Magazine Guest Writer

When I tell someone that I volunteer in pediatric hospitals, I usually spot a sad face across from me. That response is understandable, given that hospitals can be scary and sometimes painful and upsetting. But in fact, there’s no greater place to see joy and resilience on display, all through kids’ natural passion for play.

Whether at their doctor’s office or in the ER, kids find a way to play, particularly with encouragement. Most children’s hospitals today come equipped with a playroom and a bevy of materials and activities, so kids can be kids while hospitalized. Once they see a playroom full of toys, messy finger paints and a silly guy blowing bubbles, they know this place is made for them and they will probably feel safe there. There’s even a team of people whose job is to play with your child: the child life specialists. They become parents’ partners in health and healing.

Meet the child life team: Your play partners

Many parents are surprised to learn that there’s a person solely focused on your child’s emotional health during a hospital stay — and they do it mainly through play. Child life specialists (CLSs) help kids and families adapt to the hospital environment and support them in understanding what’s taking place, thereby reducing the stress of a hospitalization. CLSs are trained in child development and play theory, as well anatomy, research methodology, sociocultural issues, ethics, family systems and bereavement, among other things. They also act as a bridge and advocate with your medical team. Child life departments often include art and music therapists, and are visited by yoga and mindfulness teachers, clowns and other practitioners.

Language of play

Play is the universal language of childhood — in fact, when CLSs assess their patients, they’re watching how kids communicate via play. I spoke to Deborah B. Vilas, a CLS and social worker who teaches child life graduate students at Bank Street College of Education. Vilas says, “Young children won’t sit down and say, ‘I felt sad today and I think I’m anxious about the medical treatment I’m getting.’ When children are playing, they act out scenarios and show us what they’re feeling; they show us what they understand, what they’re capable of and what their coping mechanisms are.” This may seem obvious, but in some hospitals, there’s a misconception that play is frivolous or low on the priority totem pole.

Young children won’t sit down and say, ‘I felt sad today and I think I’m anxious about the medical treatment I’m getting.’

Vilas reminds us, “It’s been proven that when children have play opportunities that they need less medicine, less anesthesia, are more compliant and get better faster. The benefits of play reach beyond the child to assist medical personnel and influence the hospital’s bottom line.”

Benefits of play

According to the American Academy of Pediatrics (AAP), “Play is essential to development because it contributes to the cognitive, physical, social, and emotional well-being of children and youth. Play also offers an ideal opportunity for parents to engage fully with their children.” Why would all that stop at the hospital? The AAP goes on to state that hospital play is a necessity that helps kids cope with treatment and stay on track, developmentally. The uses and benefits of play in medical settings are varied and significant.

At its essence, play provides a safe space for kids to experiment with unfamiliar and often scary experiences. Through open-ended play, kids can take in new information at their own pace, re-create situations and play out fears until they are familiar enough to gain a sense of mastery over the situation. When supported by an empathetic parent or CLS, this process is deepened and they can better process and release feelings.

At its essence, play provides a safe space for kids to experiment with unfamiliar and often scary experiences.

Open-ended and child-centered play, in particular, are highly beneficial, as they provide opportunities for kids to immerse themselves more deeply in play and lead from a sense of agency. Unfortunately, free play has been on the decline due to our hurried and jam-packed, overscheduled and tech-filled lifestyles, yet it is necessary for skill development, self-regulation, independent thinking and creative problem solving. In the hospital, where kids lack choices, it’s even more crucial to let kids be in charge.

Medical play

One of the roles of the CLS is to normalize the hospital experience through play. They might do familiarization activities, for example, building a robot using a bedpan, tongue depressors and IV tubing, all taped together with bandages. Suddenly medical supplies aren’t scary, cold, weird objects that only doctors and nurses use, and kids can “hack” the hospital.

Going a step further, medical play with a toy doctor’s kit and/or real medical supplies can 1.) educate children about an upcoming procedure, 2.) let them process their experience, before, during or after a procedure, and 3.) put the child back in the driver’s seat.

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Meghan Amorosa, CLS, engages Jan, age 4, in medical play at Brooklyn Hospital Center, Brooklyn, N.Y. Photo by Marj Kleinman.
 

Children experience a strong sense of helplessness, vulnerability and anxiety when faced with uncertainty and misconceptions (let’s face it, so do grownups). Procedural support helps educate, greatly reducing feelings of unpredictability, and increases a level of mastery.

Meghan Amorosa, child life specialist at Brooklyn Hospital Center in Brooklyn, N.Y., says, “A really big part of medical play is about giving patients choice and control over their own hospital experience. Instead of being the patient, they become the doctor and play on their own little patient.” She observed that Jan (pictured above) gave the doll a lot of shots, which is typical in patients who’ve been poked a lot. In fact, “If a kid gives a doll a million shots, they’re showing you how painful that was for him,” says Vilas.

A really big part of medical play is about giving patients choice and control over their own hospital experience.

Movement plays a key role in healing.

Movement also plays a key role in healing, which is why doctors want patients up and walking almost right after surgery. If kids can get out of bed and step on bubble wrap or a floor piano, ride a hospital wagon around the unit, or skate down the hallway on their IV pole, they get the blood circulating, feel more energized and also empowered at the same time.

Play is powerful and can be tailored towards your child’s individual age, temperament and tastes. Read on to find out 10 ways to support kids going to the hospital, as patients or visitors.

Marj Kleinman is a Brooklyn based photographer and children’s media producer with a master’s in educational psychology.

Building Bridges Instead of Walls – Teaching & Learning in Mexico City

 

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One week post-election, I found myself bound for Mexico City, ready to teach and learn alongside my adventure colleague, Maria Busqueta. Marifer, (as I call her) hosted me in her home town, where she is a child life specialist, psychologist and educator. It was a whirlwind couple of days, as we visited the General de la Raza Hospital, learned about the Ayudarme a Sonreir ante el Cancer Foundation, The Vuela Foundation, taught a class on play techniques for adolescents, and attended a two-day conference on palliative care. Phew!

My first impressions of Mexico City and Marifer’s neighborhood: Unexpectedly cold and wet. Lovely hills rising up from the urban center. Cypress trees in plenty and Bougainvillea in bright, fuscea explosions amongst the trees and spilling down high stone retaining walls. Hilly, winding roads with speed bumps everywhere instead of stop signs. Heavy and erratic traffic. Cold mornings and nights. Marifer’s house has many levels to it, all encased in gingerbread auburn ceramic tiles. Like my home, the kitchen and living room are on the upper level, with bedrooms below. Marifer’s jaunty beagle, Duncan, lords over the front yard and threatens escape with each coming and going of a human being through the iron gate. Marifer’s mother cooks for us several times a day, filling me with homestyle Mexican fare. It is mere moments before I feel like family.

We are up bright and early my first full day there, ready to pay a visit to the Hospital Raza. Lisette Garcia Urenda, the founder of the Ayudarme a Sonreir ante el Cancer Foundation (which translates as “We help you smile after cancer”), is hosting us, and we meet her outside of the largest and oldest public hospital in all of Mexico. The sidewalks surrounding the building team with merchants hawking their wares, everything from pork roasting in a cauldron to magazines and fruit. We weave past the stalls and in through the back emergency entrance to the hospital. As we enter the foyer, several pediatric cancer patients and their families are exiting the hospital, bundled up for discharge and eager to be home. But they stop to hug, kiss and chat with Lisette. They shake our hands and offer “mucho gusto” as Lisette introduces us.

It is clear that the children and their caregivers adore Lisette. And it is easy to see why – she is all brightness, high energy and love. One teenage boy jokes for me to take him back to the United States with him. The younger children glance at us shyly.

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There are three events planned for the day, two presentations to patients and a therapeutic art activity to be conducted on the inpatient ward. The foundation grants wishes for pediatric cancer patients, and families have gathered to witness Lisette’s presentation of a wish to a young girl. They sit in tiny, child-sized plastic chairs around the parameter of an open roofed waiting area. The children sport face masks, bald heads, hats, and winter coats with good reason. It is cold.

The child is brought to the center of the room, and Lisette introduces her to everyone. I am regretting in the moment that I don’t understood more Spanish, but it seems that she is telling them how well the girl is doing post bone marrow transplant. With great flourish, Lisette hands the girl a large present. The child opens it with excitement and beams at its contents, an “alien” doll that  is apparently quite the rage. It’s hard not to note what a child with cancer might have in common with the toy. Both are bald; both might need to be isolated because of threatening germs in a hostile environment; both may need to be fed through a tube in the stomach. And, any child who has such a diagnosis may often feel like a misunderstood species hovering over the more typical lives of healthy peers.

The child hugs Lisette. The onlookers clap, and I wonder if they are envious of her.  Lisette explains to me that most of them will have a wish granted at some point, so that no child feels left out. Later, the child’s mother is crying in the hallway, sharing bad news with her social worker. Her daughter has relapsed. The bone marrow transplant didn’t take.

Lisette says that many of these children die, and that in order to do her work, she must get lots of therapy and continually study and obtain higher degrees. This is why she is a current student of Marifer’s. She does the work because when her father-in-law died, he told her that she must work for the forgotten children. She says that many of these children don’t have electricity in their homes.

The next planned event is the presentation of a natural hair wig made from five individual donations of hair. The recipient is a six-year-old girl. She is very shy and quiet. We are in a hall outside of the infusion clinic. The floors are buckled and seams of cement overflow the protruding tile. I wonder if this is from an earthquake. Nurses wear white and institutional green uniforms, donning plastic nursing caps in the same colors. I feel like I have stepped back into the 1950’s, except for the fact that they are all taking photos on their cell phones as Lisette presents the wig to the child.

Lisette speaks with the girl for quite some time. She reassures her that she needn’t speak if she doesn’t wish to, that they can communicate with their eyes. Lisette tells the child about the beauty of her heart, that the wig is just an accessory, that her beauty is not dependent on whether or not she has hair.

You must say to yourself every day in the mirror: “I am beautiful!”

The child tries on the wig and looks in a mirror provided by Lisette. Everyone poses for photos with her. In the end, her mother repacks the wig carefully in the box, and they are on their way.

Lisette leads us through a chaotic and crowded hallway to a packed elevator that carries us to the inpatient  pediatric oncology unit. In the hallway between two separate wings (one designated for solid tumors, the other for liquid), is a small but well equipped playroom. Siblings and patients mingle at child-sized tables. There are floor to ceiling shelves laden with cause and effect toys, a toy hospital, dollhouse, action figures (“for boys” says the playroom coordinator), blocks, puzzles, games and art materials. There is a large dollhouse in a corner, a kitchen play set, and several large bookcases overflowing with books. Lisette’s foundation supplies the  DVD lending library. One child sits with an adult working on a puzzle. Another plays with the dollhouse. A mothers group meets in the waiting room next door. The only thing I feel is missing is a medical play corner and sensory play materials. A flatscreen tv plays a Disney movie overhead.

Lisette has plans for an expressive arts activity. She brings us to the liquid tumor wing, into a room with six beds. Five children between the ages of two and fourteen seem excited to see Lissette and very open to our visit. The six-year-old boy is talkative and funny. After some quipping back and forth, Lisette hands out crayons and art paper to the children with a body outline on it.  But before she can begin to explain the instructions, the two year-old’s mother leaves the room, and the toddler begins to cry loudly and  inconsolably . She sits in her cage-like crib, crying desperately, reaching both arms up as if asking her absent mother to pick her up. Either that, or she is imploring the Gods to bring her mother back!

Lisette approaches with kind words, but the toddler is having none of it. She screams louder. Lisette offers her crayons and a “Frozen” coloring book. The child cries “No!” and turns away. Lisette is unperturbed. Using the surroundings, she jumps quickly into a bit of improv. The room has been newly decorated with a brightly colored mural on all four walls, ceiling to floor. It is a nature and farm scene. Near the girl’s bed, close to the floor, a mother duck swims with her three ducklings on a bright blue pond. Lisette launches into a conversation with the ducklings, turning her back on the toddler, lessening the child’s stranger anxiety by ceasing direct eye contact. She engages everyone in the room in asking the names of the ducks. She suggests the proffered names, and the little girl shakes her head in protest at each one. But she has stopped wailing and is watching Lissette intently. Lisette blocks the child’s view of the mother duck and tells a tale of the ducklings searching for their mother. She reassures the girl that her mommy will always return. We all sing the song “Five Little Ducks”. Lisette offers the coloring book again, asking, “May I put it on your bed?” The child accepts and begins to color.

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Lisette conducts the art activity with success. She speaks to the children about the variety of emotions we all have. She says they will play a coloring game based on a game called “Basta!” (enough). She takes turns calling out emotions, and each time they must grab a crayon and color within the body outline to represent where and how much of that emotion they have until Lisette yells, “Basta!” Lisette is very lively and whips the kids up into a coloring frenzy. She begins with the emotions of fear, anger, and sadness, and ends with love and joy. I am sitting with the toddler, who is methodically drawing many tiny, blue circles on each page of her coloring book, while she listens and glances at the other children. She watches closely as a nurse enters the room and approaches the six-year-old. The boy grins and says, “It’s good that you are here. My IV is backing up.” The nurse adjusts his IV, then moves over to the toddler, preparing medicine in a syringe without a needle. The toddler opens her mouth complacently to receive it without complaint.

The fourteen-year-old has gone for a walk. I had noticed when I entered the room that she didn’t appear physically ill. She has all of her hair, and is not connected to an IV. She wore a contented, cheerful expression while she chatted on her cell phone. Soon, it is time for us to move on. The teen has returned to her bed. We all pose for photos. All the children except the toddler smile. She still appears a bit somber.  I am the first to leave the room, and the teen’s caregiver follows me and grabs my arm in the hallway. She asks if I understand Spanish and begins to pour out a story to me that even with my broken Spanish, I can piece together. She is not the teen’s mother, but her aunt.

Two weeks prior, she, her two sisters and family members were traveling by car in a caravan. There was a horrible crash. The teen’s mother and father were killed. Her brother lies in critical condition in the ICU. Although the teen was unharmed, the tests she underwent at the hospital revealed that she has cancer. She had only just learned of her parents’ deaths the day before. I struggle to match that news with the image of the calm, smiling teen I’d met. Was she in shock? Denial? Is it her Faith in action?

The aunt shows me photos on her phone of her family, as well as a video about a teen whose mother dies. She says she is a Jehovah’s Witness and believes that we will all see our loved ones again after death. I tell her that I will carry her family in my heart.  I think about how much good healthcare in hospitals involves helping patients and families to tell their stories. This seems true in every country I visit. And in every country thus far, families don’t hesitate to share their stories with a stranger. Perhaps it is easier to tell a stranger. But it is more than that. This woman, and others I have met, seem compelled to share their narratives, as if we couldn’t stop them if we tried.

Leaving the hospital, I am sad, exhausted and hopeful in equal measures. Lisette’s work makes a mark. Listening makes a difference. The children won’t be forgotten by us. Shared stories tear down cultural walls.

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Doll Ambassadors: Providing Comfort to Kids with Cancer

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Guest Blogger: Rosanna Bernstein – Founder of Bee Brave Buddies

When I had cancer and was going through chemotherapy, a white, curly haired stuffed poodle that one of my daughters gave me sat right on the pillow next to me at all times. I named her Gigi. Just looking at the quirky turned-up smile on this puppy`s face always gave me a feeling of comfort and made me smile.

I was diagnosed with Chronic Myelogenous Leukemia in 1998. I was in treatment for 3 years and was becoming sicker. A trial in its second phase for a new chemotherapy medication, specific for CML, now called Gleevec, was in its early stages at that time.  I was eventually accepted into this trial, and within several months I went into a remission. This chemotherapy was one of the first magic bullets, a medication targeted to treat the specific genetic mutation.  Although I still take a chemotherapy pill each evening, I have been so fortunate to be healthy and in remission to this day.

I was so grateful, that I decided I wanted to help others.

Through the years I have had several businesses: Yummy Gram, a gourmet basket company, Rosanna Hope Designs, a millinery and hand bag design company and Baby Bonbons, an online shop with vintage lace children`s clothing designs and accessories. During this time, I designed many original designs for baby blankets and matching pillows for the Baby Bonbons shop. I have always had a passion for art, beautiful laces and fabrics.

But, puppy Gigi always lurked in the back of my mind. I could still see that funny little face, and I got a warm feeling each time I thought about Gigi. I remember the soothing, inner peace I felt snuggling her. This feeling gave me the idea to combine my love of art and design with my desire to give back.

I combined my love for fabric and my whimsical children’s digital art drawings to design my original three Bee Brave Buddies dolls: Buddy Brave, a superhero doll for boys with magical powers, his twin sister, Bestie Brave, a superhero doll for girls, who is a true new best friend, and Catie Cuddles, a doll dressed in fancy lace who loves to cuddle and snuggle. I hope to use this same art process to design a line of Bee Brave Buddies Adventure books and other gifts for children.

My dolls were designed to become a new best friend to children who are in treatment for cancer or other childhood illnesses and who need a big snuggle and some magical secret powers to be brave. The three dolls are designed with beautiful bald heads. The girl dolls have special words printed on their long leggings: giggle, snuggle, love, dream, brave, cuddle, smile, laugh, hugs, play, dream, hope.

The dolls are also educational. An adult with cancer can use the dolls to explain hair loss and other treatments that children will face. Each doll comes with a matching hat or headband and the superheroes come with silky minky capes. The dolls have very soft plush pillow bodies to hug and love. Each doll comes in Caucasian or African American descent. Our dolls are printed and made in the USA. They are completely washable.

I have personally been giving my dolls to children with cancer since February of 2015. Bee Brave Buddies have been shipped to children across the USA and to several countries. We are excited to announce that we have now received our determination letter from the IRS and we are a 501(c)3 nonprofit. This will allow us to make and deliver dolls to children battling cancer across the country and beyond with your help and support.

 

What can you do to help? 

We are looking for doll ambassadors, an integral part of our team. They are like the generals in our army, helping us make big decisions: They locate hospitals in their area, make child life connections for delivery of dolls, are available for the doll presentations, help secure local press and manage social media regarding their particular hospital. Doll ambassadors also reach out to help us find local contacts to sponsor these boxes of dolls delivered to their local hospitals, either on a one-time basis gift or an ongoing monthly program.

Our new initiative, The Bee Brave Buddies of the Month Club allows a sponsor to send a box of ten dolls per month to a designated hospital. Our Christmas Holiday program encourages families or businesses to celebrate a holiday they will fondly remember, one in which they gave back to others. Our creative doll ambassadors put together teams from family, friends, businesses, corporations, church groups, school groups or sports teams that would like to rally for our cause. These are just a few examples of groups that can help us touch the lives of these children in a very profound way. Our dolls give the children comfort, courage and confidence. These seriously ill children only want to be normal and play! When the child smiles, the caregivers smile, and all of the medical staff smile. It is infectious! Our dolls provide these smiles when the children are hugging and loving them, much like my Gigi puppy provided to me.

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Our mission is to put a Bee Brave Buddy doll in the arms of all children around the world in treatment or recuperation from cancer who need a hug to help these children feel brave and to provide emotional support to children and young adults with cancer and other serious illnesses. Any child battling cancer can receive a free Bee Brave Buddies doll to love.

If you would like to make a difference in the lives of these sweet children, drop by our web site www.beebravebuddies.com to learn more about our nonprofit and please join us today.

Warmly,

Rosanna Hope Bernstein

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Medical Staff Gotta Play!

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The recent Pokemon Go craze has hospital administrators  flummoxed by their employees’ behavior. Several hospitals have called for a ban on medical staff playing the digital game while at work, claiming that they are ignoring patient needs in pursuit of the free-to-play location-based augmented reality mobile game. There is no question that social media should never come before a patient’s medical needs, but the administrators may be missing an important point.

Adults need to play.

Yup, that’s what I said. Adults need to play.

Articles about burnout in the medical field appear every day on my news feed. Caring professionals exposed to repeated trauma working long hours in tough conditions with impossible patient to staff ratios face compassion fatigue and burnout on a regular basis. There are no easy answers, probably not one thing that can turn this phenomenon around. But if we look at the current Pokemon seeking behavior, it gives us a clue.

Think about recess at school and all the studies that show how increased physical movement and play greatly improve children’s ability to learn, function and lead healthier lives. Why should it be any different for adults? In fact, Alison Tonkin and Julia Whitaker have just published a terrific book Play in Healthcare for Adults: Using Play to Promote Health and Wellbeing Across the Adult Lifespan, that explores the role of play in adults’ health and coping. 

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They show how central play is to our biological makeup and evolutionary history. Play is a crucial ingredient of survival for all mammalian species (Tonkin & Whitaker, 2016). In the forward to the book, Suzanne Zeedyk, a research scientist and founder of connected baby states

We know these truths instinctively. However we relegate them to our private lives and personal relationships. Contemporary culture does not reserve an official role for play in our public, professional lives. Work is serious. Play is not.

That’s why this book is radical. Its editors have been willing to shout loudly about the importance of play in professional contexts.They have been willing to bring theory, empirical evidence, and practical examples to their claim.

Jon Loungo, a child life specialist at Maimonides Hospital Center in Brooklyn, NY, coined the term Tongue Depressor Challenge. It refers to providing medical staff (and often patients) with loose parts , and telling them, “Create something that shows how the hospital experience could be improved, in real or imaginary ways, and include at least one tongue depressor in your project.”  With this 3-D challenge in mind, I allow my imagination free reign in envisioning what the presence of play might contribute to excellent healthcare in hospitals. I picture doctors, nurses, administrators and technicians taking scheduled breaks throughout the work day. I picture play rooms set aside for staff that include expressive art corners, rock climbing walls, trampolines and ping pong tables.  Hey, and what about pet therapy?

Call me crazy.

 

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Rabbit Ray – Helping Kids with Needle Fears

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Esther Wang has a vision. As an entrepreneur, designer and inventor, she has learned first hand what it means to use creative skills to make the world a better place. Esther took up the challenge of “How can we help kids be less afraid of needles?” in Singapore, her native country.  She designed Rabbit Ray, an interactive, virtually unbreakable, washable patient interactive device that empowers even more than it teaches. Continue reading

Less anesthesia – More play for MRIs

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Erik Ranschaert and Ben Taragin

Dr. Benjamin Taragin knows a lot about what kids need when facing radiology scans. He has spearheaded the production of a miniature MRI model using toy building blocks, so that children can play about their experiences before and after scans. When I asked Dr. Ben about how this all came about, he shared the following narrative. We hope you will be inspired by his story and jump on board to help make his I Love MRI kits available to any child in need of an MRI.  Continue reading