Driving the Camel Installment #2

 

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Driving the Camel; Adventures of a Child Life Specialist

Installment #2

Chapter 1: Two for One Sale continued

…..But today it was my turn to be the patient. As I pushed my way through the revolving doors of the very hospital where I had provided solace and healing, it struck me that I was the one in need of these things. Who was going to take care of me, the caretaker?  It was such an odd homecoming, familiar yet strange. The actual building I entered had not even been in existence when I’d worked there. But it held the same smell and the decor was familiar, as were the uniforms of the security guards at the information desk.  

Entering the lobby as a patient, without the authority of an employee ID badge, I felt like a lobster shedding its shell, soft, pink and vulnerable waiting for a new protective coat of armor to form. I had taught children and parents so many coping skills over the years. Would these skills be available to me now, or would terror hijack all of my working synapses and block my access? A rip current of anxiety carried me along a shoreline just out of reach. I could feel my feet scrambling for solid ground.

At the check in desk on the 4th floor, I supplied my birthdate, those eight digits that granted me access to the world of treatment.  Like a POW stating name, rank and serial number, I would repeat those numbers countless times over the coming months. Mark and I found seats on one of the many couches in the waiting room. Although most seats were filled, there was a hush to the large room. Patients and caregivers sat in small groupings, sipping coffee, reading magazines, texting quietly on cell phones. One woman appeared clearly ill, a greyish pallor smudged over protruding cheekbones. Overdressed for the spring weather, she huddled in her scarf and coat, a hat pulled low over her forehead. She tried her best to curl into her chair, her eyes closed in exhaustion. Was that going to be me soon? Others looked no different than me, dressed for work, no outward signs of illness or distress. Mark pulled out his blackberry and zeroed in on work emails. That and his bouncing foot were his only tells.

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Soon enough, we sat across a desk from Dr. Fodor, while he drew an anatomical diagram of my breasts upside down, so that we could see it from our seats.

“You have three tiny tumors,” he began. “Two here, and one here. They are what we call “in situ,” Stage One. So first of all, I want to tell you, you are not going to die from this. “

I looked over at Mark and our eyes met in shared relief.

“Now our data shows that there is no difference in outcome between a mastectomy and a lumpectomy for this type of cancer. So we recommend a bilateral lumpectomy along with a sentinel node removal and biopsy, followed by four weeks of radiation. You should be done with this whole business by the end of the summer.”

“Thank God!” I thought. No horrible decision to be made between a mastectomy and a lumpectomy. No chemo. It was mid May, and as a professor I didn’t work summers. This already felt manageable. Dr. Fodor, sporting a bow tie and the lanky build of a basketball player, exuded calm reassurance. This was no big deal. He saw this every day.

“So, what do you think about next week?” he said.

My heart sped up. “Surgery? Next week?”

“Yes, let’s get you on the schedule for next week and get this started. My assistant will give you all of the pre-op information, so that you’ll know what to expect and what you need to do to get ready.”

Mark and I walked out of the doctor’s office an hour later with a schedule for surgery and pre-op appointments. Dr. Fodor had explained that in addition to routine blood work and an EKG, I would need to be injected with radioactive isotopes, scanned, and have seeds placed in both my breasts to localize the tumors and sentinel lymph nodes so that he would know where to cut. It was a lot to take in, but I didn’t have a lot of time to think about it.

The very next day, I boarded a plane to Denver to attend the Child Life Council’s annual conference. 

The CLC is a membership organization for the field of Child Life. It oversees certification, provides support and resources to child life specialists, and runs an annual conference. This year, the Council had awarded me a scholarship for Innovations in Play, and the Disney Corporation would  underwrite my trip. I had two presentations to give, both on the topic of play. In addition to the scholarship, the CLC had recently hired me as the project leader to design and conduct an international survey on the state of play in North American hospitals. My career was beginning to expand beyond the walls of the small college where I taught courses in play and child development for child life specialists and teachers. I was excited and a bit overwhelmed by the tasks that lay ahead. Cancer certainly hadn’t been part of the bargain when I signed up for these opportunities. But there was no turning back now.

I sat on the plane, reviewing my presentation notes and drifting in and out of focus. Thoughts were ricocheting around my head like pachinko balls. The running monologue followed no linear path, and went something like this. “Holy Sh*t! I have cancer! Weird, I don’t feel sick. How the hell am I going to concentrate on presenting to over 200 people? What if I cry? Holy Sh*t! I’m having surgery next week! How big a chunk is Dr. Fodor going to take out of me?  What if Dr. Fodor is wrong? What if these damn tumors metastasize and kill me? Will I be able to go on vacation in August like we planned? How the hell am I going to get all of my work done for the CLC?  Will I be able to meet their deadlines? Is radiation going to hurt? My skin is so sensitive and my mother had such a hard time with radiation. Will it be worse for me?”

My mother had been diagnosed with breast cancer 6 years earlier. She had a tough time with post surgery complications and the radiation had left her scarred and in chronic pain. But thankfully, she was alive and kicking at the age of 80. A great role model for me, Joyce projected an infectious sense of joy and a thirst for learning and growing. I would definitely be relying on her life perspective in the coming months.

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Arriving at the hotel, I was greeted by texts from my 2 co-presenters, who were eager to gather to rehearse our presentation. I had never met Loxy before, as she worked with Caitlin at a children’s hospital in Texas. But I knew she was more than a child life assistant and co-worker. She was a dear friend and mother figure to Caitlin, who had moved to Texas knowing no one. Caitlin, with her freckles and strawberry blonde hair, was one of those precious gems in my life, a student who had graduated and turned into a close friend and colleague. Continue reading

Loose Parts Play in the UK

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Cath Hubbuck is a Registered Hospital Play Specialist in the UK. She authored Play for Sick Children — Play Specialists in Hospitals and Beyond in 2009. After 9 years in the field, she is currently a stay-at-home mother to four small children. She keeps up her skills volunteering on the pediatric neurology ward of a large children’s hospital. Cath attended a conference presentation of mine two years ago, and has been an avid fan of loose parts since then. When she recently shared some photos of a loose parts intervention on FaceBook, I encouraged her to share the backstory of the photos. Here it is in her own words.

“On one Monday morning, I visited Christopher, a seven year old boy who was due to be inpatient for five days throughout which he would be the subject of a Video EEG (VEEG). This required him to be wired up to epilepsy monitoring equipment for 24 hours a day, via a continuous video recording (and hopefully documenting an epileptic absence or seizure) and approximately 23 electrodes glued to his head, neck and chest.

I had only dropped in to find out what sort of activities he wanted at his bedside, but as I arrived he was having his last few electrodes attached and was beginning to wriggle a little. I stayed and just talked with him as the Neurophysiologist finished the job – an informal distraction, if you like – but then Christopher suddenly grabbed his much loved Rabbit and said “Rabbit needs some wires, too!” Continue reading

The Box

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 Juan was a 7-year-old, sturdy kid with shortly-cropped black hair in the first grade at an inner city public school. Juan’ teacher asked me to work with him on his social skills and impulsivity. My mode of working with children is based on the principles of the child-centered approach, which calls for unconditional positive regard for the child and trust in the child’s ability to find his own way towards healing. This removes the adult-driven agenda as one creates an emotionally supportive play space in which the child explores avenues of his own healing.

The first time I brought Juan into the playroom, he knew exactly what to do.

The toys in my portable play toolkit were chosen to encourage expressive and dramatic play: human figures, rescue vehicles, a toy medical kit, crayons, and playdough. During our weekly sessions, the room itself became part of the play space as well, with its piles of school materials. Each session, Juan would initiate play and instruct me how to play. I served as a willing participant, but I strove to remain in a subservient role, allowing him to direct my actions to suit his needs. I acted as both participant and witness, narrating his play and giving words to the emotions that he played out before me.

Themes emerged, as did routines. One in particular was a challenge for me. At the end of every session, he would avoid putting a stop to his play and refuse to return to the classroom. He would hide behind furniture and boxes, making me feel like an ogre as I prodded and cajoled him out the door. Continue reading