If you could put a face on the growth and development of a children’s hospital, you couldn’t ask for a brighter, more captivating one than Sarah Maurer’s.
The 24-year-old’s life journey has been intimately linked with the evolution of Phoenix Children’s Hospital, which celebrates its 25th anniversary this month.
Sarah, who first came to Phoenix Children’s as a 7-year-old with a life-threatening cancer, is now a healthy and boundlessly optimistic young woman, bursting with plans and purpose. And the hospital that played such an important role in her recovery has come a long way since it first opened in September 1983 as an independent hospital-within-a-hospital on the campus of what was then Good Samaritan Medical Center.
Sarah’s mom,Laura Maurer of Phoenix, was 28 weeks into a healthy pregnancy when she developed placental abruption, an uncommon and serious condition in which the placenta peels away from the uterus, potentially depriving the baby of oxygen and nutrients. She immediately went into the care of high-risk pregnancy specialists at Phoenix Perinatal Associates. At 30 weeks, on Sept. 14, 1984, Sarah was born at Good Samaritan and was moved to the neonatal intensive care unit (NICU).
She weighed just three pounds, one ounce. “They put her on a ventilator,” Laura says. “After half an hour, she reached up and pulled it out. She’s been fighting ever since.”
Sarah, of course, doesn’t remember any of this. But she does enjoy sharing now-faded photographs from her five and a half weeks in the NICU. “My first outfit was a doll’s dress!” she says. Even when she was finally released to go home, she wasn’t out of the woods. For several months, she was constantly hooked up to an apnea monitor, a device that would alert her parents if Sarah stopped breathing.
“Sometimes during feeding time she would forget to breathe,” Laura says. “We’d have to wake her up, stimulate her, to get her breathing.”
Sarah was “always really tiny and had some residual asthma-type things to deal with” as she began to grow, her mom says. She also had some issues with her ears — one eventually had to be surgically reconstructed — related to her prematurity. But life in the Maurer household began to settle down. In 1986, Laura and her husband Jim were expecting another child. This pregnancy wasn’t easy either.
Laura spent the last 10 weeks on bed rest before their daughter Jamie was born prematurely in March of 1987. Jamie, too, weathered her rough start in life and “we got back to the business of raising our family,” Laura says.
Then, just before her eighth birthday, Sarah started experiencing abdominal pain. After three weeks, her doctor ordered an x-ray. “Everything was not where it should be,” Laura says, her eyes showing the current of worry that began to haunt her that day. A subsequent ultrasound showed “a mass in there.” Sarah was diagnosed with Wilms’ tumor, a rare kidney cancer that mostly affects children. A CAT scan showed that the tumor had spread to her daughter’s lungs. She had Stage IV metastatic cancer and needed immediate surgery. The implications were hard to grasp. Laura felt numb.
“I remember leaving the radiology building and a butterfly landed on Sarah’s head,” Laura says. “When I went home to pack, I walked across the street to talk to our neighbors and another butterfly came by. We just don’t see that many butterflies in Phoenix. A butterfly is a sign of new life. I felt that God had given us some hope — a reason to hope.”
On Sept. 8, 1992, six days before her eighth birthday, Sarah was admitted to Phoenix Children’s to prepare for surgery two days later. Doctors were expecting to remove the tumor and the kidney where it had started growing but “they opened and closed her,” Laura remembers. She and her husband were told, “We can’t take it out — it’s spread to her liver, her other kidney, her lungs.” “That’s when I lost it,” Laura remembers. “I felt like I was melting into the couch. You just can’t understand that. My perception was ‘Why can’t you just take it out?’”
Phoenix Children’s hematologist/oncologist Paul Baranko, M.D., who had shared the bad news, said firmly, “Don’t give up. I’m not giving up.”
The family went home to celebrate Sarah’s eighth birthday and returned to the hospital the next Monday so Sarah could begin a six-week regimen of intense daily radiation and a year of chemotherapy.
“The first week was really hard,” Laura says. “Sarah would say, ‘People die from cancer. Does that mean I am going to die?’ We said to her, ‘We don’t know. We’re going to fight and pray and do everything we can to keep that from happening.’”
In the difficult weeks that followed, Sarah’s family found comfort in the empathy of hospital staff and the efforts that were made to help Sarah — and the rest of the family cope with their fears and maintain some semblance of normalcy in their lives.
Hospital policy at that time, for example, was to allow one parent to stay in a child’s room overnight. “They let us both stay,” Laura says. The impact of that simple breach in policy is clear to any parent who has worried about a sick child.
Sarah doesn’t remember pain, discomfort or “any bad stuff” from that time. “God protected me,” she says matter-of-factly. Though she never feared dying (“I knew I would go to heaven”) she does remember being “an angry cancer patient.”
“I wouldn’t let anyone in my room,” she says. She insisted that anyone who wanted to talk with her — including members of her family — first hand a note around the curtain surrounding her hospital bed. With the wisdom of maturity and hindsight, she realizes that this was her attempt to regain some sense of control when “you have no control over your life.”
“You’re hospitalized and you’re getting poked and prodded for days and weeks on end,” she says. “All of your independence and sense of control is taken away. You have no privacy and no choices. You can’t even choose what you want to eat.”
That’s when the involvement of the hospital’s child life specialists changed her life. Heather Walton was one of the first child life specialists at Phoenix Children’s. And she found the secret to breaking Sarah’s anger.
“My goal was to help her open up,” says Walton, who is now a physician relations representative at the hospital. “It’s hard for [sick] kids to talk with their families. They see their parents in pain, crying. The child life specialist can be a ‘safe’ person, someone they can open up to.”
Child life specialists use playful activities, toys, dolls and even live animals to help children share their feelings. In Sarah’s case, “she related to our rabbit,” Walton says. Thumper lived in a cage in the playroom and was “a real pain” to get out of his cage, Walton remembers. But the presence of this first-generation therapy animal was calming to Sarah and made her more amenable to conversation.
“The only time I could be nice to people was when I had Thumper with me,” Sarah remembers. The hospital also brought in music therapists, who helped Sarah discover another source of healing power and emotional venting. “We’d make up hospital raps,” Sarah says, smiling. “Songs about how I hated my cancer.”
Still, like many children who are seriously ill, Sarah often pulled back from the warmth of the people who wanted most to comfort her.
“She didn’t want to be hugged,” Laura says. “Kids will take it out on their parents because they’re safe [targets] — or [pull back] because they want to protect their parents.” Laura found solace in the company of another child undergoing treatment — “a little boy with neuroblastoma who would let me hug him.”
During her year of treatment and in the months that followed, Sarah and her family remained positive. A family Christmas letter from 1993 is filled with exclamation points as Laura reflects on some of the year’s events. Sarah and Jamie were both involved in the Phoenix Children’s Chorus, which performed a special concert at Phoenix Children’s. The family participated in Rainbow Kids activities organized by the hospital’s cancer center. Group outings to local attractions like Rawhide “forced us to have fun,” Laura says now. “Otherwise you wouldn’t make the effort to socialize.” Being with other families in similar situations was comforting because “you see you can survive it.”
There was a family reunion in Estes, Park, Colo. Sarah is pictured in a rustic setting with her mom, dad and sister. She’s very thin, and wearing a ball cap on her bald head, but beaming. After the reunion, Sarah spent a week with other cancer patients at Camp Rainbow in Prescott. (“She had no problem being left, but mom was a little apprehensive!” Laura writes.)
The biggest highlight that year came when Sarah, a self-described “tomboy,” had a chance to meet then Phoenix Suns power forward Charles Barkley. The one benefit of chemo was that “Sarah couldn’t wait for all her hair to fall out so she would look just like Barkley,” Laura remembers, smiling.
Perhaps the exclamation points on that Christmas letter can be credited to a euphoric wave of relief. Just two months after her initial diagnosis, on Nov. 13, 1992, Sarah went in for exploratory surgery to determine the status of her cancer. The tumor was completely gone. After the year of chemo, she was pronounced cured.
You’d think that someone who spent so much time in a hospital would want to stay as far away from it as possible once she got well. But Sarah’s life remained linked with the growing children’s hospital. From 1995 to 2003, she participated in the Children’s Advisory Council, created to give a voice to hospitalized children.
“I watched Sarah grow up on the advisory council,” says Teresa Boeger, M.S., who was then director of the Child Life program and is now (among other duties) the director of The Emily Center, a comprehensive pediatric health library open to any family seeking information about child health, injury and illness. Boeger, whose office still displays photos of Sarah and a poignant self-portrait she made at age 11, credits Sarah with changing one hospital policy that made a big difference to kids.
“At that time, you had to wait for a physician before you could use EMLA, a topical anesthetic cream that numbs the skin [before injections or other painful procedures],” Boeger says. “Sarah wrote a letter — a very professionally written letter — saying that kids shouldn’t have to wait for a doctor…that nurses should be able to administer EMLA. She ended the letter, ‘Love, Sarah.’” She got the response she wanted; the hospital changed its policy.
Sarah was also among the children who met with architects planning the design of the stand-alone hospital, which opened in May of 2002. Children’s Advisory Council members offered input on everything from paint colors for the walls to toys and movies for the playroom. One of the concerns the children had was the fact “you can smell the cafeteria when you walk in the front door,” Sarah recalls. “These are kids who often are coming in for surgeries and can’t eat for 24 hours. They don’t want to have to smell food.” Thanks to the council’s observation, special venting was installed so that food smells do not waft into the waiting rooms.
To this day, Sarah makes annual trips to Phoenix Children’s to participate in the hospital’s Late Effects Clinic, designed to track and study the health of former pediatric cancer patients so that more can be learned about the consequences of the aggressive therapies that saved their lives.
“When you administer intense radiation and give high doses of chemotherapy to a growing body, there can be pretty significant long-term effects,” says Britt Olson, R.N., MSN, CPNP, who co-founded the clinic six years ago.
Clinic participants — there are currently about 180 in the program — are evaluated by a multidisciplinary team that includes an oncologist, an endocrinologist, a dietitian and a social worker. Though patients are watched for signs of relapse, “that doesn’t happen very often,” Olson says. More common are secondary cancers that can result from the aggressive treatments.
Sarah received high doses of chemo and intense, adult levels of radiation from the neck down to her abdomen. “The chemo and radiation fried my ovaries,” she says, making her chances of having children — but for another miracle — impossible. She also must undergo hormone replacement therapy (“try explaining to someone that you get hot flashes when you’re my age”).
Considering what she has been through, however, Sarah is remarkably healthy. Her brown eyes glow with life and purpose. Her skin is radiant and clear. Some kids who undergo chemotherapy never grow hair but Sarah’s is thick and glossy. (“We call it her $100,000 perm,” her mom says, referring to the cost of her cancer treatment.)
Sarah knows she faces the possibility of secondary cancers but does not waste time worrying about it. She tries to eat healthfully and enjoys hiking and other outdoor activities “when it’s not too hot.”
If you ask her to describe her life, she will say she’s been blessed. Every September is a double celebration — of her birth and also “one more year without cancer,” says Sarah. “I’ve been cancer-free for 16 years.”
Sarah’s life and future remain linked to the many people who helped her regain her health. She babysat for the children of many of her doctors and worked as a nanny for Boeger and Phoenix Children’s pulmonologist Gerald Gong, M.D., whose wife, Annette, was her radiation nurse. “I was in their wedding,” Sarah says. “Their daughter, Annalise, is my goddaughter.” Roy Jedeikin, M.D., is a pediatric heart specialist at Phoenix Children’s “but still lets me come to him” for checkups, even though she has long since graduated from pediatric care, she says.
But it was her experience with the child life specialists at Phoenix Children’s that most definitively influenced Sarah’s life and her plans for the future. In May 2009, Sarah will finish a degree in family and human development (with an emphasis on child development) at Arizona State University. The degree will prepare her for the next step: a 15-week child life internship in a children’s hospital. Following an internship, she will sit for a certification exam that will allow her to practice as a child life specialist.
Sarah would love to work at Phoenix Children’s some day. “My child life specialists are the reason I want to be a child life specialist,” she says simply.
To Walton, her first child life specialist, that’s everything. “She contacted me when she decided on her college major,” says Walton, visibly moved by this affirmation that her own efforts “touched someone’s life and made a difference.”
Sarah’s dreams include eventually getting a master’s degree in child life and maybe even undertaking formal training to be a music therapist. It’s as though, having been given a second chance at life, she feels compelled to squeeze as much into it as possible. Her mom says she’s “never home” — not unusual in a young adult, perhaps, but Sarah’s activities are less focused on building a social life than building hope in children and adults who are struggling with medical challenges or disabilities.
She spends every Saturday afternoon as a volunteer at Phoenix Children’s, where she “gives the nurses a break” by playing with kids, taking them to the playroom and “painting their nails if they’re girls.” The experience has fueled a desire to learn Spanish and American Sign Language so she can communicate more effectively with some of the young patients.
At Scottsdale Bible Church, she is involved in a disabilities ministry, where she sings, plays and befriends children and adults with challenges like Down syndrome and cerebral palsy. At the time of our interview, she was excitedly looking forward to working at a camp for children with autism or Asperger syndrome — “families that have been turned down by other programs,” she says, undaunted.
She has worked at camps for foster children, children with disabilities and, of course, Camp Rainbow — the camp for children affected by cancer that is run by Phoenix Children’s. Once a Camp Rainbow camper, she is now a counselor. “I taught fishing!” she exclaims.
It’s not all fun and games. In an email, she shares the news that two of the Camp Rainbow kids from last year lost their battles with cancer and would not be at camp this year. “We’ll be planting trees in their memory,” she says.
In her spare time, she earns money as a house- and pet-sitter. Her schedule doesn’t allow much down time but what she has she spends with friends she’s developed at ASU or through the young adults group at her church.
Laura’s life path also changed as a result of her oldest daughter’s cancer. As Sarah was finishing her chemo, Laura was inspired to go back to school to become a nurse. She now works in labor and delivery at Banner Good Samaritan. In 1999, she and Jim adopted a third daughter, Anna, who is 8.
Sarah is a devout Christian who has absolute confidence that prayer had a lot to do with her positive outcome. “People everywhere — all over the world — were praying for me,” she says. She feels a responsibility to share her inspiring story as a source of hope to others facing medical challenges. Through a “traveling ministry” of sorts, she visits other states and writes to pen pals for whom she offers support and encouragement.
“People who don’t believe in miracles don’t know my life,” she says.
And yet, “it’s humbling,” her mother is quick to acknowledge. “We’re no more deserving [of a miracle], no more special than anyone else.”
More stories in the handprints
In June, Phoenix Children’s Hospital launched “Handprints of Hope,” four short films produced by Oscar-winning documentary filmmaker Cynthia Wade. The goal of each film is to capture the spirit of patients and their medical teams while reflecting the hospital’s efforts to provide the best possible pediatric care through coordinated, multi-disciplinary teams, a family-centered approach and Child Life programs. pchhandprints.org.
Phoenix Children’s Hospital: A Timeline
1978 — Members of the Maricopa Pediatric Society first begin discussing the need for a hospital dedicated solely to meeting the medical needs of children.
1980 — In July, Phoenix Children’s Hospital, Inc. is formed as a legal entity.
1983 — Samaritan Health System leases 71 existing pediatric beds within Good Samaritan Hospital to Phoenix Children’s, which opens on Sept. 18 as Arizona’s only hospital dedicated solely to the care of children.
1984 — Phoenix Children’s medical staff numbers 550.
1985 — PCH acquires the NICU, Pediatric Psychiatry and Pediatric Rehabilitation departments previously operated by Good Samaritan. Camp Rainbow, a one-week camp for children with cancer, debuts in Prescott. The Children’s Cancer Center develops a school re-entry program to educate classmates of patients and help patients make a smooth transition back to school. Phoenix Children’s first major fundraising event, the Children’s Miracle Network Telethon, raises $210,233. The first pediatric liver transplant in Arizona is performed. A 53,000-square-foot outpatient center opens near Good Samaritan.
1986 — The first quadruplets are admitted to Phoenix Children’s NICU. The Children’s Cancer Center Holiday Card Project begins. The Child Life Department receives a grant to study interventions designed to help children cope with illness and hospitalization. Emily Katherine Anderson loses her battle with leukemia, just four days before her seventh birthday. Emily’s family establishes the Emily Katherine Anderson Memorial Fund to help support the learning center at Phoenix Children’s.
1987 — “Genius Club” becomes one of the first hospital school rooms in the U.S.
1988 — The Newborn Follow-up Clinic opens to monitor the progress of infants discharged from the NICU. High volume and occupancy have Phoenix Children’s leadership considering establishing a freestanding hospital.
1989 — A Phoenix Children’s surgical team successfully separates conjoined twins.
1990 — The Emily Anderson Learning Center (now The Emily Center) opens.
1993 — On its 10th anniversary, Phoenix Children’s has 172 beds, a medical staff of 681 and 694 employees. The Phoenix Children’s Neuroscience Center for Excellence is established. The hospital opens its first satellite clinic, the East Valley Specialty Care Center.
1994 — The first annual Beach Ball raises more than $140,000. The first Home of Miracles fundraiser brings in more than $1.4 million.
1995 — The Bill Holt Infection Disease Clinic opens, becoming the first pediatric clinic in Arizona for children with HIV/AIDS. The Children’s Advisory Council is established.
1996 — The West Valley Specialty Care Center is opened.
1997 — Phoenix Children’s adopts the new “heart and hand” logo and coordinates the largest bone marrow drive in Arizona’s history with KTAR-AM.
1998 — The Injury Prevention and Research Center opens.
1999 — Plans for a new, freestanding hospital are announced. The hospital’s school room is refurbished and renamed “1 Darn Cool School.”
2000 — The Crews’N Healthmobile, a mobile medical unit for homeless adolescents, and the Breathmobile, an asthma clinic on wheels, are created.
2001 — Phoenix Children’s purchases space at 20th St. and Thomas and begins a $70 million renovation to feature 40 neonatal beds, 40 pediatric intensive care beds and 150 pediatric beds. The Children’s Heart Center opens.
2002 — The new hospital opens to patients on May 25 and opens Arizona’s only pediatric emergency department.
2003 — Robert L. Meyer is appointed president and CEO. Phoenix Children’s and Mayo Clinic introduce the Valley’s first pediatric blood and marrow transplant program.
2004 — Braden’s Playground is dedicated.
2005 — Pediatric Hemodialysis Unit opens. A strategic plan through 2010 is approved.
2006 — Phoenix Children’s Comprehensive Pediatric Epilepsy Program is established. The hospital announces a $450 million, multi-year expansion of its Thomas Road campus.
2007 — Expansion and renovation of the NICU at the McDowell campus provides state-of-the-art technology. Phoenix Children’s first satellite clinic breaks ground at Higley and Southern Roads in Mesa.
2008 — In July, the hospital achieves designation as a Level 1 Pediatric Trauma Center and is making steady progress in a bold expansion plan designed to accommodate what Meyer predicts will be “a coming crisis in pediatric care” as the population of children in Maricopa Country grows to upwards of 1.7 million by the year 2025.
