One family’s joy, sadness
Sayler Brown came into the world 11 days ago, a ray of joy for a family struck by a lightning bolt of sadness.
Four days earlier, doctors at Sacred Heart Medical Center – where Sayler was born – discovered the reason for the nosebleeds, fatigue and bruising that hit Sayler’s almost-2-year-old sister Sammy without warning: Acute lymphoblastic leukemia.
“She came out understanding she needs to be supportive of her sister,” the girls’ father, Andrew Brown, said Tuesday of his quiet, content new baby.
And now the whole Spokane family – mom, Stephanie, dad, and newborn Sayler – spends every moment at Sammy’s bedside in the pediatric oncology unit while she undergoes chemotherapy. The Browns have turned the hospital room into a living room-family room-bedroom, with rows of DVDs on the dresser, a bassinette in one corner for Sayler and a bed loaded with fleece blankets and stuffed toys for Sammy.
“You just go, ‘No way is it going to happen to my kid,’ ” Stephanie Brown said, sitting on a child-sized chair in the oncology ward playroom, surrounded by books and blocks and ride-on toys outfitted with small IV poles. “I didn’t know this world up here existed.”
Sammy, who’s known in the family as “Slammy” because she’s so active, was admitted to the hospital Sept. 19 with a white blood cell count about 100 times higher than normal, said pediatric oncologist Dr. Judy Felgenhauer.
The most immediate concern is that so many cells can clog the lungs, causing difficulty breathing, or block the brain and bring on a stroke. So doctors inserted a catheter into her leg to drain out blood, remove the white cells and return the blood to her body, a process called apheresis.
Now, the little girl in the purple tutu surrounded by pink stuffed animals has hardly any white blood cells.
“Which is what we want,” Felgenhauer said.
But that makes her vulnerable to infection and means that few family members and friends have been able to visit, or welcome the new baby.
Sammy’s disease is the most common type of leukemia in children. Leukemia attacks the bone marrow and blood, causing out-of-control growth of blood cells.
In many cases, chemotherapy sends the disease into remission. If it returns, some patients undergo a bone-marrow or stem-cell transplant so they can receive very high doses of chemotherapy. The Browns decided to bank blood from Sayler’s umbilical cord, should Sammy need further treatment.
Both parents are taking time off work while Sammy’s in the hospital. Once she returns home, Stephanie Brown will return to work at the makeup counter at Macy’s at NorthTown Mall, at least part time, and Andrew Brown will go back to selling cars at Wendle NorthTown.
Sammy is at the beginning of a course of treatment expected to last about 2 ½ years. After this hospital stay, most of the therapies will be given at home or on an outpatient basis, Felgenhauer said.
“Always hanging over your head is the risk of life-threatening infection,” she said, adding that the odds are good Sammy will get better.
It’s unclear when Sammy will go back to her house on the North Side. Her second birthday is Oct. 13, and her parents are planning a party in the hospital.
Stephanie Brown has a hard time looking at pictures from just a few weeks ago, when the family went to the Spokane Interstate Fair and Sammy had a blast on the kiddie rides.
“She’s changed so much,” Brown said, saying that Sammy’s skin is pale, her hair has begun to thin, and she has circles under her eyes. “It’s like a little bit of life has been sucked out of her.”
But the Browns have faith that their older daughter, who loves Barbies and dancing, will beat leukemia and be running around with Sayler soon.
“We just tell her there’s some child out there that wasn’t strong enough to do it,” Stephanie Brown said. “So God picked you, honey.”