2018 Miracle Child Susana Obregon

“Though she be but little, she is fierce!” -William Shakespeare, A Midsummer Night’s Dream

The Obregon family moves about with a rambunctious happiness. Humor lives inside the walls of their home nestled in front of the Franklin Mountains on the west side of El Paso. “When I first went out with Jorge, he made me laugh throughout the entire date,” said Susana of her husband who is an architect. Married now for 15 years, Susana chuckles when it is mentioned her husband might look like a younger Paul Newman. “Oh my, I’m going to have to watch some old movies to see if that’s true.”

Susana has stylish short blonde hair sloping towards her cheekbones. Darker strands frame her face. She met her husband in Chihuahua through mutual friends. Her father is an audiologist in Mexico and Susana briefly was a journalist before she married and moved with Jorge to El Paso where she became a stay at home mom to daughters, Susanita and Ivana. She has plenty to keep her busy. Even Tater their eight-month old pet who is part Jack Russell and Chihuahua is a whirlwind of energy. When his tail whips across Susana’s face as she holds him, laughter erupts across the room.

Their daughter, Susanita is eight years old and walks about the house on her tippy toes. “She’s done it all her life,” says Susana.  “Susanita needs a lot of attention. She was terrible when her baby sister, Ivana, came along. She’d place stickers all over her face. She can be super nice or super bad to her, but Susanita is a very good kid.”

Ivanna parrots her big sister. Both dance about their living room like fireflies. “I’m pinkified!” states Ivana displaying her bright pink knit dress and long brown locks. “Ivana is the life of the party,” said Susana of her youngest daughter.

Standard is how Susana describes life for her family of four before Susanita was diagnosed at three with Acute Lymphoblastic Leukemia, ALL. “Susanita was going to school three days a week and I was taking care of Ivana, who was one and a half,” says Susana. “Pretty, pretty standard was our life.”  But all normal life dissolved for the Obregons when the diagnosis of ALL was made on January 21, 2013.

Earlier in December of 2012, Susana thought Susanita had an infection or even mononucleosis because she had one fever after another. She took her daughter to the pediatrician who recommended lab work. “Later on, I remember the phone call,” said Susana, “but I didn’t register the leukemia.”

 Susanita’s blood counts were so low Susana and Jorge were instructed to drive to El Paso Children’s Hospital and go immediately to the seventh floor. The seventh floor is the oncology floor. When she and Jorge arrived, Susana stared at the hospital directory. “Our daughter has cancer,” she said. “I was holding my daughter when we heard the diagnosis and I felt like I was going to fall and Susanita was going to fall. It started the lowest, most complicated weekend of our lives,” said Susana. “Our lives completely changed.”

“ALL is the most common type of childhood cancer for kids,” said Dr. Lisa Hartman, pediatric oncologist at El Paso Children’s Hospital and Susanita’s physician. “It is one of the few cancers with a high rate of remission.”

El Paso Children’s Hospital is certified by the National Cancer Institute and is a member of Children’s Oncology Group (COG), one of only 210 in the world. 90% of all children with pediatric cancers are cared for by COGs. If your child has cancer, you want them cared for at a COG because that is where the latest research and protocols are.

Being a member of a COG gave Dr. Hartman many options throughout what would become an ordeal for Susanita as she struggled with ALL: three relapses, two bone marrow transplants and four remissions.

“You ask where our family gets our strength?” asks Susana. “From her,” she said, pointing to her daughter. “She is incredibly strong, stubborn and strong-willed.” “And resilient,” adds Jorge.

Upon diagnosis and as a COG member, El Paso Children’s treats patients in El Paso and if any further treatments are needed or travel is required, it will be within the COG network. Upon completion of that particular treatment, the patient then returns to El Paso Children’s to continue follow up care.

June of 2014 brought Susanita’s first relapse. Dr. Hartman shared the bad news with the family and made it clear there would be no thought of stopping the fight. “We are going to find the best treatment to put her back into remission,” she said. She learned about a trial that had just finished and she decided to give Susanita the chemotherapy for relapsed leukemia. Remission came in July of 2014.

“We were happy with the response,” said Dr. Hartman “and now we could prepare for a bone marrow transplant.”

Her sister, Ivana would be the donor for Susanita’s transplant. The bone marrow transplant would be done at Texas Children’s. “Siblings have a 33% chance of a match,” said Susana. “Ivana helped to cure Susanita’s leukemia.”

“The bone marrow transplant went well,” said Dr. Hartman. “She returned to El Paso Children’s and the transplant doctor was keeping me up to date. I was checking on her and she did well. It was just about one year shy, almost exactly one year past her post bone marrow transplant,” added Dr. Hartman, “and then she wasn’t doing so well. We were worried about her blood counts. Her leukemia had come back again.”

Dr. Hartman talked to some leukemia experts in the country that she met and decided upon a clinical trial later approved for relapse leukemia. This meant the family would travel to Philadelphia. (Note: Due to the clinical trial that treatment is now FDA approved.)

“That helped for a while,” said Dr. Hartman. While preparing for a second bone marrow transplant, Susanita began to experience what Dr. Hartman refers to as a storm, where “the immune system goes a little crazy while they’re all in battle and gives a lot of fevers and problems.”  Susanita turned to her mother and said, “Why do we keep going and going and going?” Susana realized this was the storm and one of the physicians said, “Yes, I think it is.” The doctor asked if Susanita wanted to stop?  Susanita exclaimed, “I was born ready to fight!”

A year later, Susanita returned to Philadelphia for a follow up. They found the leukemia cells were starting to come back. If Susanita was to have her second bone marrow transplant, remission was necessary. The Obregons returned to El Paso Children’s Hospital.

“We put her on an interesting infusion. It runs for 24 hours, seven days a week for a month and it comes in a little backpack or fanny pack,” said Dr. Hartman. “They can go to school with it. They can go home with it. The medicine is fighting all the time. The slow continuous infusion is what actually took the leukemia away and kept her in remission.”

“My daughter is the second child to receive the infusion at El Paso Children’s,” said Susana who calls herself a Momcologist. “That put her into remission so that she was able to have a bone marrow transplant.” This time the bone marrow donor would be Susanita’s father, Jorge. “Not everybody has the chance to give their children life twice,” said Susana.

Today, Susanita has been in remission for nine months and recently cleared to return to school. Is she excited to return to school? “Yes,” she said, and she nods her head and makes a silly face. Does she have any future dreams of college? “Yes,” she said, again. She wants to attend the University of Texas at El Paso to study robotics. She wants to learn to color hair, too. A friend of her mother’s has promised to teach her.

“The care at El Paso Children’s is like walking home,” said Jorge. “When we first came here; it was the weekend when we were admitted and one of the nurses said, ‘Don’t worry; you will become family.’ And it was really a shock because nobody wants to be part of a hospital family. But we’ve been coming here once a week for almost four years,” he adds. “Recently we started coming once a month and it felt like something was missing every week.  When we walk in here, it feels like family.”

Susanita Obregon is El Paso Children’s Hospital’s 2018 Miracle Child. She and her family will represent Children’s Miracle Network to the community throughout the year.

Susanita slips on a pair of sparkly champagne-colored pumps for a photo shoot that will announce her as the newest Miracle Child. She skips to where she’ll pose for the photographer.  When asked if she has a hobby, she smiles and says, “board games.” What is her favorite? She wiggles her golden shoes. “LIFE.” Tater leaps onto her lap as she pulls him close and cuddles with him. “Let’s take a picture,” she says to him. She pries her mother’s cell phone from her hand.  “Smile,” Susanita instructs Tater. Laughter bursts from the family as Tater bolts and scampers away. Happiness will not be denied to the Obregon household.  Their daughter is in remission and life has found its new “normal.”