Tag Archives: child life specialist

A patient entertainer

Ellington King (10) of Phoenix shows us part of an IV while his child life specialist, Sarah Maurer, watches. Photo by Daniel Friedman.

He’d just had his spleen removed and he was still a bit woozy from the anesthesia. But 10-year-old Ellington King was game when child life specialist Sarah Maurer asked him, and his mom, if we could stop by to visit.

I was at Phoenix Children’s Hospital with RAK staff photographer Dan Friedman,  shadowing Sarah and trying to get a sense of what her life is like now that she is no longer a patient, but a patient advocate. Her story is the first is a series of magazine articles I plan to write in coming months that revisit the stories of children and families we’ve featured in the past. (“Sarah’s Story: 1993, 2008 and today.” is in our September 2011 magazine.)

Sarah was a cancer patient at Phoenix Children’s when she appeared on our cover in 1993. She was a college student when she was featured again in a 25-year-anniversary story we wrote about the hospital in 2008.

And now she is a child life specialist at the hospital that saved her life.

Sarah sat near Ellington’s bed and talked with him just as she would if our entourage, which included two members of the hospital’s public relations office, hadn’t been there.

“Any surprises?” she asked Ellington, referring to his surgery.

“Yeah,” he said. “All of you!” We laughed, eager to hear more from this bright, engaging fifth grader.

Sarah handed him a laminated, handmade flip book, something she and other child life specialists use to prepare children for surgeries. The book shows pictures of the various places and pieces of equipment that are involved. She asked Ellington to describe his experience.

This child needed no props to launch his monologue.

“I’m knocked out, havin’ a great time, sleepin’, dreamin’ about hamburgers and French fries all the time,” he said.

“Because you couldn’t eat anything all day, right?” Sarah prompted.

“Then I wake up, I say, ‘I got my spleen out!’ then I come back here and get knocked out again.” (Meaning he fell back asleep again, tired from the medicine, Sarah explained.)

Being on anesthesia “just reminds me of the ‘forget me’ stick from Megaminds,” he said, and more laughter erupted.

As we looked at the pictures, Ellington showed a clear grasp of all the work Sarah had done to prepare him. As he explained how an IV is used to administer medicine, he looked at Dan. “You might want to get a picture of this,” he said.

Ellington, who told us he’s been in the hospital “hundreds of millions of times,” has a condition called spherocytosis. His mom, Cheerve, told us it affects him much like sickle cell anemia would, though “he is not as severe.” Her son also has asthma.

There was nothing in Ellington’s demeanor that would indicate he was in any discomfort or pain. Still, he told Sarah, “I was just crying here a little while ago, I was hurting so bad.”

“Did you tell someone, so they could give you some medicine for the pain?” she asked.

“Yes,” he said. “They did give me pain medicine, right here, in the IV.”

“What else can you do to help the pain?” she prompted.

“Pray and breathe,” he responded.

Sarah liked both of those suggestions and reminded him that there are things she can bring to help: bubbles to focus his breathing, play-doh or squeezy balls to work out stress.

I asked Ellington if everything he’s learned and all the time he’s spent in the hospital had him thinking about a career in medicine.

“No!”  he said emphatically. “I really just want to be in basketball. But now that my spleen is out, I’m totally playing football. Knocking everybody down.”

“I’m kinda thinking maybe comedy?” I said.

“Oh yes. I’m thinking of being a comedian, too,” Ellington said. “Or an actor. I’m acting right now because I really feel like just passing out.”

Before we left, I asked Cheerve if he’s always like this — or if the pain medications were contributing to the entertainment factor of her son’s comments.

“He’s always like this,” she told me. So if comedy (or acting) is in his future, he’s clearly got what it takes.


A celebration of cancer survivors

Sometimes a big cake isn’t about birthdays or graduations or weddings. Sometimes it’s about surviving — and celebrating life.

Sometimes your best friend joins you for an arts and crafts project. You have so much fun you almost forget that you are stringing Beads of Courage. But you never forget that your friend stood by you, even when you were the sickest you have ever been in your whole life.

Sometimes the doctor who helped you beat back your cancer has other talents you never knew about.

Sometimes you don’t feel that great on the day of the party but you come anyway. It’s how you say to your cancer, “I will not let you stop me and I will be back again for next year’s party without this mask and IV pole!”

Sometimes the child life specialist who patiently explained scary stuff to you and made you laugh, even when you were hurting, gets a chance to sign your “autograph hound” for graduation.

Sometimes a whole room of people who don’t really know each other feel united by a shared, and very joyful, milestone. One more year, and my child is still here.

Sometimes even a kid who is fighting cancer will fight for a piece of cake before it is served.

Sometimes she’ll get it. And sometimes, she’ll even get seconds.

Photos and memories from the Sunday, June 5 Cancer Survivors Day event I attended at Cardon Children’s Medical Center with RAK health editor and multimedia journalist Vicki Balint.

Watch Vicki’s video.

A celebration at Phoenix Children’s Hospital

Randy Christensen, M.D., autographs a book.

As we approached the table where pediatrician and newly minted author Randy Christensen, M.D. was autographing copies of his book, we joked about being his “groupies.”

The book-signing event in the airy, natural light-filled lobby at the new patient tower at Phoenix Children’s Hospital was the second event in the past three weeks that multimedia journalist Vicki Louk Balint and I have attended in support of Christensen, his new book (Ask Me Why I Hurt: The Kids Nobody Wants and the Doctor Who Heals Them) and his work with the Crews’n Healthmobile, a collaborative effort between Phoenix Children’s Hospital and UMOM New Day Centers.

Vicki and Randy at a March luncheon where he was the featured speaker.

Groupies? Well, certainly admirers. Vicki, who interviewed Christensen for a story we published in January 2008, has followed his journey with great interest. She even read an advance copy of his book, which is a memoir about his work spearheading medical outreach to homeless teens, and wrote a review that will appear in our upcoming May magazine.

I am looking forward to reading my own copy, which I purchased at the PCH gift shop and which is inscribed, “Thanks so much for your support!” by “Dr. Randy.”

The event, which carried on throughout the day and early evening, was a true celebration. Many of Christensen’s coworkers and medical colleagues from around the community were there. Everyone was beaming. Some were wearing handmade bracelets mimicking the one adorning the book jacket. Teresa Boeger, a child life specialist and director at PCH (with responsibilities encompassing The Emily Center and the gift shop, too),  found a couple of extra bracelets, which she promptly gave to Vicki and me. With the “Ask Me Why I Hurt” message so relevant for the hospital’s young patients, I would expect to see a lot more of these around the hospital in the days and weeks to come. Vicki urged her to market them at the gift shop, with proceeds benefiting the Crews’n Healthmobile.

Michelle Ray, who sought medical help from the Crews'n Healthmobile while living at a UMOM New Day Center, came to offer her support. Michelle, now the mother of a 4-year-old, is studying to be a nurse. Christensen is her child's pediatrician.

Before we left, we took a quick tour of the new Crews’n Healthmobile, a big upgrade over the original vehicle (which Vicki wrote about visiting in her Health Matters blog).

When Vicki first interviewed Randy, he wasn’t necessarily thinking about writing a book. And yet he first talked to Vicki he told her about the young woman who wore a bracelet saying “Ask Me Why I Hurt.” As I listened to the interview again recently, I got chills. The larger purpose behind this man’s life, work — and now, his writing — is plainly clear.

Listen to Vicki’s 2008 podcast.

Randy and Amy Christensen. Amy is also a pediatrician.

The Crews'n Healthmobile and staff. Photo by Vicki Louk Balint.

With Randy at the PCH gift shop. Photo by Vicki Louk Balint.

Everything possible to minimize a child’s pain

Tommy Buisman (12) and child life specialist Erin Sinnema.

Tommy Buisman of Gilbert wasn’t expecting to be in the hospital that day. It was fall break, after all, and  and he should have been out doing something fun.

But 12-year-old Tommy has diabetes. And sometimes, despite everyone’s determined efforts to keep it under control, it gets the better of him.

Erin stands at the entrance to a private room at the hospital. The mural, a cityscape of Atlanta, and the home-like entrance are all part of a planned approach to reducing anxiety when children must be hospitalized.

We met Tommy and his mom, Cristina, toward the end of a two-hour video shoot at Cardon Children’s Medical Center. Multimedia journalist Vicki Balint and I were there to learn about pain management techniques available to blunt the physical and emotional backwash that can follow a painful medical procedure. We interviewed child life specialist Erin Sinnema, who talked about the longterm effects of a bad experience with pain. We talked to nurse practitioner Teri Reyburn-Orne, RN, MSN, CPNP-AC, who explained some of the techniques the hospital uses to mitigate pain. Teri demonstrated the J-Tip, a fairly new device (it’s been available only a year and a half or so) that allows medical staff to inject topical anesthetic without a needle so that the procedure to follow — a venipuncture (blood draw), for example — is not painful to the child.

Teri shared a story about her own, now-grown son, who vividly remembers the trauma he experienced as he was taken into surgery as a young child.

“It’s a myth that children forget pain,” Erin told us. She explained that untreated or undertreated pain causes permanent changes in the pathways that interpret pain, making the body more sensitive to pain. The body forms a permanent memory that changes forever how it responds to future painful experiences.

As Vicki was interviewing Teri, I met some people in the hallway who were there for a completely different video shoot. David Curran, M.D., is a pediatrician with East Valley Children’s Center in Tempe and chair of the pediatrics department at Cardon Children’s. He and his wife Tina are co-chairing “Stars of the Season,” an inaugural event to benefit the hospital’s Integrative Pain Management Program, on Friday, Dec. 3. They were at the hospital that day to be interviewed for a video about the event. Chester Bennington, lead singer of Linkin Park, was with them. His wife volunteers at the hospital as a dog therapist.

The Currans have three children of their own, ages 3, 7 and 9. They have wholeheartedly embraced the hospital’s commitment to offering cutting-edge pain-management therapies, even those that cut across traditional boundaries.

Each room at Cardon Children's has a whiteboard chart that includes sad or smiley faces that help children indicate how much pain they are experiencing.

When pain can be managed successfully, “children get better quicker,” says Dr. Currran.  So he is open to anything that works, and is leading efforts at the hospital to integrate alternative therapies — including acupuncture, massage, music, meditation, hypnosis, aroma and pet therapies — with high-tech contemporary medical approaches.

When he came into his position as department chair, Dr. Curran says, he asked the staff at Cardon to “give me three things you need. Number one on the list was an integrative approach to pain management.”

Unfortunately, alternative therapies provided by specially trained practitioners are not reimbursed by health care insurance. The fundraiser will raise money to ensure that children and families who could benefit from alternative pain management techniques are not denied access to them because they are unable to pay out-of-pocket.

So back to Tommy, who was a terrific sport about welcoming strangers with cameras into his treatment room at the Emergency Department. Though still woozy from the effects of his diabetic incident, Tommy managed to smile and patiently answer some questions. Tommy was hooked up to an IV, which meant he’d undergone a needle stick just moments before we entered his room.

Erin chatted with Tommy for awhile, asking him what grade he was in and quickly establishing a rapport. Gradually she got around to asking him what he’d felt like when the IV was administered.

“Was it scary?” she asked gently.

“No,” he said quietly. “It was comfortable.”

Watch RAK Video.