I’ll be a Fool for Health: Dancing and Singing my way through Chemo & Radiation

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Previously published as “How Making Dancing Videos Helped Me Cope With Chemo and Radiation” on The Mighty on April 28th, 2017

The email arrived on my 52nd birthday in the wake of a bilateral lumpectomy for breast cancer. While healing from the surgery and post-op infection, I did my best to adjust to my diagnosis and tried not to dwell too much on the upcoming chemo. I wasn’t feeling particularly celebratory as I opened my laptop and signed in to check my email that day. I was pleasantly surprised to find a string of emails, each one with a, “Happy Birthday, Deb!” subject heading.

The emails heralded from a cohort of recently graduated Child Life students, all of whom had taken my course on therapeutic play while pursuing their Masters in Child Life. Child Life specialists use play to support children through their hospitalization. They are the ones who focus on a child’s emotional and developmental needs, seeking to make the hospital a less scary and more manageable experience for child and family. And now, in these emails, they were putting their skills to the test, reaching out to show me, their professor, support in my time of need.

Each email contained a video, and although they all differed slightly, there was definitely an emerging theme. Every video held some rendition of Katy Perry’s pop tune “Firework”  — either a straight cut from Youtube, or a homemade video with the song playing and the students lip-synching and dancing for the camera. I sniffled noisily and swiped the tears from my cheeks  with the back of my hand as I felt their good cheer washing over me. Each video moved me, but it was the final one that had a lasting impact.

I re-positioned myself to find a comfortable spot against the soft cushions of my couch and clicked on the link to the video from my former grad student. The  accompanying email read, “Deb you have inspired me to get up and dance. Happy Birthday from me, Tiff and George Bailey! I love you!!!” I  pressed play and the video buffered and then revealed my student center-stage, holding her dog (George Bailey!) and dancing to Katy Perry blasting in the background. To the right is her sister, Tiffany, also dancing, albeit with a bit more restraint. Two weeks earlier, at the age of 30 and six months after her wedding, Tiffany was diagnosed with breast cancer and underwent a mastectomy. And here she was, teaming up with her sister to support me in my own battle. My breath hitched in my chest as I watched through a haze of tears.

When I reached out to my student to thank her, she informed me her sister had been struggling with a dark mood since her diagnosis and this video was the first time Tiffany had really moved her body and raised her arms since surgery. I took all this to heart, and vowed to myself I would not take this gift lightly. Inspired deeply by Tiffany’s actions, I decided I would make my own videos, to cheer myself (and maybe her) through the process. Each and every week before my eight chemotherapy sessions and six weeks of radiation, I chose a kickass song and danced and sang to it — capturing my ungainly efforts on video. Playing everything from Springsteen’s Badlands to Katy Perry’s Roar, I roped in family and friends, child life grads, my dog, my husband, anyone who had less shame than me. Towards the end, I even wrote my own lyrics to a Christmas carol and sang acapella. As my hair thinned and my energy faltered, these videos kept me focused on the road ahead and also helped me show the world I was more than my diagnosis. Baby, I was a firework!

These are some of the videos:

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Tiffany with her wig further into treatment
Radiation Prep

AND last but not least, Shani Thornton, aka @ChildLifeMommy, lent me constant support with ongoing videos of her own. Without these, I never could have kept my sense of humor or optimism. Thank you, Shani!!

 

 

 

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Child Life United: Practicums & Missions Abroad

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Ever since I first stepped off a plane in New Zealand over three years ago, I have become fascinated by what my profession looks like in other countries. Whether you call it Child Life, Hospital Play or Pediatric Psychosocial Healthcare, I have learned that there are many ways to ease the stress of medical treatment for children across the globe. I was in conversation recently with a mover and shaker in the Child Life world, Courtney Moreland, founder of Child Life United. Courtney has been busy creating practicums in partnership with child life programs on the international front, in addition to coordinating child life volunteer positions in her mission work.

Courtney noticed an increasing level of competition for a sparse number of practicums in the United States. Tapping into a growing interest within our field in international work, she came up with the idea of partnering with child life professionals abroad to create more practicum opportunities for budding child life specialists.

First stop — the Middle East! Courtney teamed up with Bank Street College alum, Rachel Werner, a child life specialist pioneer working for Save a Child’s Heart in Israel. Courtney supplied supervision for practicum students, while the students shadowed Rachel in her day to day work. This way, students benefited from Rachel’s modeling, and Courtney shouldered the responsibilities of supervision and training. Courtney provides a curriculum and leads the students in reflective practice. This unique set up means that the students get 100% of Courtney’s attention, energy and expertise, while Rachel can concentrate on her clinical duties. Anyone who has ever supervised or precepted a student knows that this is a win win for everyone. The pilot rolled out this Spring with three students as a one month, full time practicum. They were from America, Canada, and an expat now living in Israel.

Rachel reflects: “I loved the novel idea from the beginning and Courtney’s initiative to bring child life specialists around the world to learn, even to places like Israel where Child Life is not a known field. Although Save a Child’s Heart is an alternative setting, we agreed that it could be a one-of-a-kind learning experience for students seeking an international practicum. In the end I know a lot was learned, and the children will remember the three wonderful women (four including Courtney) when they think back of their time in Israel.”

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Courtney and Rachel – A fabulous partnership!
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Playing doctor

All Child Life United Practicums will follow the Recommended Standards as set forth by the Association of Child Life Professionals – ACLP (formally the Child Life Council)

Child Life Practicum

The child life practicum is designed as an introductory experience for individuals interested in pursuing a career in child life. Through experiential learning and observation of Certified Child Life Specialists, child life practicum students begin to increase their knowledge of basic child life skills related to play, developmental assessment, and integration of child life theory into interventions with infants, children, youth and families. Child life practicum students will increase their comfort level by interacting with infants, children, youth, and families in stressful situations, health care settings and/or in programs designed for special needs populations.  Through these experiences, child life practicum students will enhance their knowledge of the child life profession and investigate the process of applying child life and developmental theory to practice.  

The next practicum will be held in Sydney, Australia this summer. You can find details in the  Student Information Packet – Australia Practicum. Courtney seeks applicants who have completed 100 hours of volunteer work in a child life department. It is a plus if you have at least one child life course under your belt, but it is not required.

Applications are DUE June 1st, 2017

The application is also located on the Child Life United website www.childlifeunited.org

Mission Work

This summer Courtney is also happy to announce the exciting opportunity to serve as a Child Life Specialist on a medical mission trip. Missions are typically a week long.

In August, she will be supervising Child Life students on a mission to Mexico as Child Life United brings Child Life services to Florence Nightingale Global Health Missions .

This trip requires a fundraising effort to collect the teaching supplies and toys needed to meet the needs of the kids and their families. All trips provide medical care in grossly under served areas of the world. Please consider supporting this effort. Every sticker, ball and mask masks a difference.

She has created a Wish List on Amazon of supplies needed.
https://www.amazon.com/gp/registry/wishlist/307DPAFB2HQZG/ref=nav_wishlist_lists_2

If you are looking for a child life adventure abroad that will further your learning and expand your horizons, all in the service of easing the healthcare experiences of children, please contact Courtney at Child Life United to apply.

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We can’t wait to hear where she will be partnering next!

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6 TED Talks That Reinforce the Importance of Play

Thank you ChildLifeMommy for this great resource! Play is a vital necessity for optimal childhood development!

Child Life Mommy

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Guest Blogger, Jennifer Cantis

Studies have shown how vital playfulness is to creativity, relaxation, and peace of mind.

Play is critical for a stable, more productive life experience.

Don’t believe me? Take some time to watch the following six TED Talks. Each will inspire you in different ways to get in touch with your inner-child spirit in order to tackle your adult problems. Whether its playful thinking or playful activities, the next time you’re stuck on a problem, try working through it by use of play!

Tim Brown: Tales of Creativity and Play

In Tim’s speech, he opens with an exercise where he has the audience draw a person in a seat next to them. The catch is that you only have thirty seconds to complete the drawings. As you can imagine, the exercise gets quite a few laughs from the audience. However, something else happens, too: Many people…

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Bilingual Book for Pediatric Cancer Patients

My thanks to Marifer Busqueta for connecting me to this wonderful bilingual children’s book for children and families facing cancer:

 

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The information below is copied directly from the book’s website benito books. Marifer herself has written a children’s book in Spanish to address children’s questions about loss and death, “I want to know what is death?”. It is wonderful to have access to books for Spanish speaking and bilingual children facing illness and loss.

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Home About the book News/Events Buy your copy

Overview

Benito, You Can Do It! Volume 1 is the first in a series of bilingual picture books for children diagnosed with cancer. This 80-page (40 in English and 40 in Spanish) picture book depicts a Latino family facing childhood cancer and uses a soccer analogy to explain the roles of the medical team.

Pages from the book

Written and illustrated by Alan Quinonez, this book helps parents find strength and hope when one of their little ones has been diagnosed with cancer.

Our Goals

The picture book series Benito, You Can Do It! has been inspired by the testimonials from the families in the Latinas Contra Cancer Parent Support Group as well as the expert knowledge and input of the medical team at Stanford’s Lucille Packard Children’s Hospital.

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Our goals in developing this first-of-its-kind book series reflecting the Latino experience are:

  • To the affected families to share the resources, advice, and best practices learned from the cancer journey with their child.
  • To show the cancer survivors that this is an opportunity for them to step into the limelight and reach out to those who might lose faith.

The book series

Our first volume The News, helps children and their families cope with a recent diagnosis by providing a better understanding of the disease, and the medical team that will be helping them.

Upcoming volumes in the series are:

  • Vol.2 The Awareness (working title) Will explain how the immediate family of a child with cancer faces twice the risk of developing the disease, and what steps the family can take to reduce the risk.
  • Vol. 3 The Treatment will explain the different types of treatment and life at the hospital.
  • Vol. 4 The Siblings will help brothers and sisters process their own feelings of being set aside and neglected.
  • Vol. 5 The Return to School will explore the anxiety that children face when they go back to school before their hair has regrown.

Our fundraising on Kickstarer

From Sep 6th to Oct 6th 2013, we ran a kickstarter fundraising campaign.

Thanks to the generous donations from 171 backers, we were able to raise over $12,000, which allowed us to cover the costs of print, as well as set aside 110 books and make them available for free to families in need!

At our campaign page you can:

About the author/illustrator
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Alan Quiñonez is a writer and illustrator working on his dream of telling stories that cross language barriers and foster a message of hope and strength in children and families around the world. He lives with his partner in North Hollywood. His personal website is alanrq.com

About Latinas Contra Cancer

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Latinas Contra Cancer is a decade old nonprofit based in San Jose, California. Founded by Ysabel Duron, a cancer survivor, this agency, one of the few of its kind in the country, works to improve outcomes for Latino families affected by cancer by increasing awareness and knowledge, access to care, and psychosocial support.
Learn more at latinascontracancer.org

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.

Playing for Good: Touch-Tables in Hospitals

 

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Interview with guest Tom Bannon, Vice President, AFTER-MOUSE.COM on PLAY for Good, an initiative of AFTER-MOUSE.COM Twitter: @AFTER_MOUSE. I “met” Tom through an email when he read this blog and reached out to me. I think that his products are a great match for Child Life in Hospitals, so I offered to spotlight him on this blog. So, Heeeeeeeeeere’s Tom!

Tell us a little about who you are.

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I have been working in the technology and software licensing space for over 20 years. My career is about helping partners and customers make technology work for their business and their customers. Through my work, I have seen how technology can be transformative – making an experience more enjoyable for or helping connect people when communication barriers seemed impenetrable, among so many other benefits. I believe in my work, because I believe there is a lot of positive potential when technology is used for good.

What is AFTER-MOUSE.COM? How did you get involved with them?

AFTER-MOUSE.COM is a fast-growing industry leader in multi-touch technology applications. I joined five years ago to lead the U.S. sales team and be a part of business at the cutting-edge of multi-user collaborative technology.

We work with retail, real estate, automotive, financial, education, healthcare and other industries to provide unique customer experiences through interactive and collaborative touch-table applications. With more than 180 custom applications and 20 multi-touch, multi-player games for all age groups, our PLAY touch-table brings customers, families and colleagues together to experience truly collaborative activities. Whether it is in a waiting room or at a resort, our PLAY table delivers an experience that builds community and pure fun. Check out this video of guest using the PLAY table in a Novotel lobby: https://www.youtube.com/watch?v=40OniciXvDA

How did you get involved with Hospitals?

AFTER-MOUSE.COM has worked with hospitals and medical centers for more than 5 years. We have PLAY touch-tables in pediatric departments, waiting rooms and child life centers throughout the U.S. This is an important partnership for us as we work to promote the empowering and healing benefits of collaborative, playful learning.

Sometimes a hospital can be a scary and uncomfortable place for a child. Promoting collaborative, playful learning in these environments can provide positive emotional experiences and healing to help children cope.

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What are the benefits in your eyes of these interactive games? Any downsides?

The positive benefits of technology-based collaborative play inspired us to launch PLAY for Good, an AFTER-MOUSE.COM initiative working with partners to place multi-player touch-tables in nonprofit children’s hospitals and youth centers. The PLAY for Good team helps connect funders and donors with nonprofit hospitals and children’s health organizations that can use PLAY tables to promote collaborative play through our educational, multi-player children’s games.

Today, 91% of children between the ages of 2 and 17 play technology-based games. Despite the rapid uptake of technology, there is still little guidance on how to effectively harness technology as a tool for improving learning through play. Most guidance for children’s interaction with technology is based on “screen time,” the amount of time a child should spend looking at a digital screen. However, technology has progressed beyond the linear, sedentary relationship between child and screen, frequently thought of as watching television.

Technology-based play is not restricted to single user, sedentary experiences; rather technology can facilitate highly interactive and collaborative play activities that enable peer-to-peer learning. Unlike adult-child interactions, peer-to-peer learning allows for a balanced power dynamic which helps children refine planning, negotiation, and cooperation skills.

In a hospital environment, technology-based games can help a child cope with a stressful or uncomfortable situation. Children grappling with chemotherapy-related nausea or preoperative anxiety, for example, have had success playing technology-based games to help with emotional management.

What are your hopes for this product?

Our PLAY touch-table and children’s game bundle can provide entertainment to children in waiting rooms and lobbies – but they can also promote cognitive development, improves quality of life and can help a child manage emotional stress, when used appropriately.

In a world where technology is increasingly integrated into the way we live, we want to help promote the positive benefits it can yield. Interactive, technology-based collaborative, playful learning has changed the nature of children’s relationship with a device. When used appropriately, interactive technology can provide positive elements to children’s play and learning by facilitating exploration and experimentation in a dynamic digital multi-player experience.

What would you like Child Life Specialists to know about Play touch-tables?

We want to work together. While the body of research on the impact of technology-based play on child development is still in early stages, there is research confirming that, when used appropriately, interactive technology can be a valuable tool in promoting playful learning. PLAY touch-tables, when added to existing Child Life programs, have enhance a child’s experience in the hospital. Our PLAY for Good team understands the resources constraints of nonprofit organizations, so they can help identify funding opportunities with your development team and provide guidance on how the PLAY touch-table can be leveraged to support on-going fundraising goals through sponsorship programs.

Play for Good Program PDF

Tell us a bit about your international work.

We have worked with many companies around the world through our offices and partners in the US, Europe, Dubai and many other regions as well. We have now delivered projects in over 40 countries.  We continue to expand into new markets with our products.

 

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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Calling all Docs: Write a Prescription for play

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RX for Play

by Deborah B. Vilas, MS, CCLS, LMSW

Previously published by the Standish Foundation for Child & Family Centered Healthcare

“Doctors are never afraid.”

A four-year-old boy told me this as he donned surgical gloves and gave his doll an injection. He was channeling the power of a healer to counterbalance the terror he faced on a daily basis as a pediatric oncology patient. His emphatic statement and the image of his determined demeanor as he sat bent over his patient made a profound impression on me that day. They are perfect examples of the therapeutic and empowering benefits of play for hospitalized children. For this child in particular, play was serious business.

The American Academy of Pediatrics champions play for all children in their report on the importance of play in promoting healthy child development. They inform us that “[p]lay is essential to development because it contributes to the cognitive, physical, social, and emotional well-being of children and youth.” In their policy statement on Child Life services, the Academy further defines play in hospitals as a necessityin order for children to cope with treatment and stay developmentally on track. Continue reading

“I Wish That Mommy Never Dies” Helping My Preschooler Cope with Grief and Loss

Childlifemommy hits the nail on the head with how to support young children coping with death. Empathy and expressive open-ended play leads a path to healing.

Child Life Mommy

"I Wish That Mommy Never Dies" Helping My Preschooler Cope with Grief and Loss.jpg

Whilevisiting family during Christmas break, we decided to grab a bite to eat. I saw a fountain that would be a great distraction for my impatient 4 and a half-year old, while we waited to be seated.As I handed my son pennies to toss into the water,I had no idea that he would have such a powerful wish.

“I wish that Mommy never dies.”

His words took my breath away, as I just stoodthere with a handful of copperpennies that were meant for garbage trucks, police cars and Legos.

Our family had experienced 4 deaths in just a short ten months and my son was realizing the permanence of these deaths.

As a child life specialist that works to support children’s grief, I was witnessing my own son’s emotional torture of understanding death, coping with his fear of loss and trying to understand why his French Bulldog couldn’t come back…

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