The blood sample was from a child, and the large number of white cells and fibroblasts suggested advancing leukemia. The child needed to be hospitalized immediately. However, 7-year-old Sophia Martinez and her family had just arrived in Puerto Vallarta, Mexico, for a long-planned family vacation.
The Martinez family would soon embark on an often-frightening and exhausting journey, a fight against a rare and often deadly type of childhood leukemia, acute lymphocytic T-cell leukemia (ALL). There were no real warnings or clear-cut signs of the leukemia. Sophia had a brand-new bike and her complaints about tired and achy legs seemed normal, according to her mother.
She did have a slight fever, also thought to be a virus. As a precaution, before their trip her parents asked their pediatrician take a blood sample, which suggested a virus. They were advised to bring her back for a follow-up with her pediatrician when they returned from vacation.
Vince and Lisa Martinez got a flight back to Albuquerque the next day and raced Sophia directly to Presbyterian Hospital, where she would be hospitalized and treated for the next 2½ years, Lisa Martinez said.
Oncologist Dr. Jeff Hanrahan would take on the challenging treatment for the case of what turned out to be an extremely rare type of ALL, the first case of its type treated at Presbyterian Hospital. Sophia’s bone marrow test showed 97 percent leukemic cells, and the overall survival rate for her rare type of ALL was 10 percent.
The Pediatric Wing at Presbyterian
Up on the 6th floor of Presbyterian Hospital, each year thousands of infants and children just like Sophia are treated in one of several special units, including a neonatal intensive care unit, a pediatric intensive care unit, and a pediatric care unit.
The Children’s Center has none of the gloomy atmosphere you might expect at a hospital. Instead, all along the walls are colorful murals with friendly animals of all kinds. Birds, trees, rabbits, and other creatures catch your eye. And, thanks to the Child Life program, the floor is filled with games, dolls, video games and DVDs, wagons, and dolls.
Yet there’s no doubt about the serious side to this setting. Some of the children who are here are too ill to go home, and may need to stay on the unit for many months and even years while they are being treated for cancer and other life-threatening conditions.
Jennifer Landman, an administrator of the Children’s Center at Presbyterian, said that one young patient was in the hospital for four years.
Tiny newborns are struggling for life in the Neonatal ICU, or NICU. The NICU alone has some 1,000 admissions a year. These newborns may have very ill mothers, too. The NICU is staffed 24 hours a day by board-certified neonatologists, neonatal nurse practitioners, registered nurses, lactation experts and respiratory therapists. The pediatric intensive care unit, or PICU, provides treatment and care for critically ill and injured children.
The Child Life Program
Erika Gabrys, child life specialist and director of The Children’s Center at Presbyterian, says dedicated nurses, physicians, volunteers and community sponsors “work extra hard to balance the serious and sometimes critical care with a relaxing and fun, family-centered atmosphere.” The program is designed to take the unknown and the fear out of the treatment equation by providing activities and socialization for children and their families.
Patient rooms have the individual child’s name and artwork depicting something the young patient really likes. It could be a cartoon character or a horse or a rainbow. All the rooms have large windows, and a view of the New Mexico sky, and space for one parent to stay with the child.
Ronald MacDonald House rooms are also always available for family members.
Vince and Lisa Lopez were in the hospital for each of Sophia’s treatments over 63 days and nights. The family says they lived at the hospital in the Ronald MacDonald rooms, through many holidays, two Halloweens and even Christmas Day, when Sophia had to be rushed to the hospital. Other parents and children became a second family to them. Lisa also kept a daily log of Sophia’s journey and treatment and the day-by-day story may one day become a book that might be helpful for other parents.
Sophia was quickly drawn to the games, including air hockey, and especially to art, painting and beading. In fact, she and her grandmother designed a special woven bracelet with a pendant and an inspirational poem. Sophia gave bracelets to all 600 classmates at her school, Annunciation Catholic School.
Local Albuquerque sponsors also provide funds and needed equipment for the kids. Each fall the Spirit Halloween Store, which raises funds through their “Spirit of Children” sales, donates to the Wellness Center for educational and entertainment items, such as laptop computers, iPods and iPads, flat screen TVs, medical education dolls and equipment, and toys designed specifically for children with physical challenges, Gabrys said.
The program also has a strong educational component. This can include coordinating schoolwork and providing tutors if a young patient will be on the unit longer than two weeks.
Gabrys says that the seriously ill young patients show amazing compassion for other patients, often reaching out to help them feel less afraid and to help them get through their treatment. Family members also help other families through suggestions and encouragement. Weekly family support groups help parents and siblings share their concerns and their knowledge, which again has a powerful impact upon fear of the unknown. The games, artwork, and activities are all aimed at making treatment less scary.
Volunteers make a big difference
Dedicated volunteers from the community also make a real difference for the kids. Retirees and parents pitch in whenever needed — this could be consoling a frightened child or rocking a very sick newborn.
Sam Landman, who will be a freshman at UNM this fall, is a 19-year-old former cancer patient and the son of Jennifer Landman. Sam volunteers three days a week, and can be found playing games, talking with and comforting young patients. On any given day Sam might help a young patient who is frightened of a test, or help a young oncology patient wheel his portable IV stand down the hall, where they both play a lively game of table tennis. Erica said he is very popular with the young patients, and noted that recently a 6-year old telephoned, asking “Is our Sam there?”
“We like celebrations,” Erica Gabrys says, and explained that each child on the unit has a special birthday celebration. Those who are finally well enough to go home are treated to a huge celebration with cake and gifts. Pet therapy visits, clowns, and holiday celebrations are the norm.