Brooklynn Spencer's mother Samantha knew something wasn't right. The 8 month old had the flu recently, but it had been four weeks. She should have been better. The Elmira mother of four pushed for blood tests in early October 2007. A few hours later, there was a knock at the door.
A physician - not even Brooklynn's own pediatrician - came to the house as soon as her blood tests came back. Brooklynn's white cell count, which should have been about 5,000, was 56,000, her hematocrit, which should have been 35 to 40 percent, was 13 percent and her platelet count, which should have been more than 150,000, was 13,000. Those levels were so concerning, she needed to get specialized care immediately.
Sam and her husband Bill rushed with Brooklynn to Golisano Children's Hospital at the University of Rochester Medical Center, not knowing how long they'd be gone or whether they'd be bringing their baby girl back with them.
Acute Lymphoblastic Leukemia (ALL) had taken over Brooklynn's bone marrow, so she wasn't making any normal blood cells. But it was the most common pre-B cell type, enough for the Spencers to hold on to a lot of hope.
"It's one of the better ones to have," Sam said. "You don't want any, but if you have to have it, it's one that's more curable than most."
Still, treatment has not been easy on Brooklynn. In fact, she's had one of the most difficult to treat cases of ALL Golisano Children's Hospital has ever seen. But it wasn't the cancer that she struggled with; it was bacteria many of us carry in our intestines with no symptoms: Vancomycin-Resistant Enterococcus (VRE).
Brooklynn was three weeks into the induction phase of treatment with her pediatric oncologist Laurie Milner, M.D., the first time she got sick with VRE.
"She went to sleep and she just didn't wake up," Sam said. "The nurse came in and changed her, did vitals and she didn't move. Usually, the cuff would make her scream."
The nurse knew something was very wrong, so she called the doctors, who decided to do a spinal tap to check Brooklynn for meningitis in addition to the VRE sepsis she had already developed. It was positive and it was bad. It was resistant to pretty much every antibiotic.
Brooklynn was moved to the pediatric intensive care unit (PICU), and the Spencers were told to expect the worst. Mary Caserta, M.D., a pediatric infectious disease specialist, knew there had to be a way to fight the infection, so she delved into old case studies and called colleagues across the country. She came across a case of a premature infant with VRE meningitis who successfully fought it off with an old antibiotic that isn't often used anymore. Caserta added it to a cocktail of four antibiotics and started treatment.
"It was hard because one of the most effective antibiotics for that type of meningitis required Brooklynn's immune system to fight the infection, but her immune system was completely knocked out by her cancer treatments," Caserta said. "We threw everything we had at her."
Brooklynn started getting better. Her blood and spinal fluid were free of the bacteria, but it wasn't the last time the family thought it was the end for Brooklynn. She had seven bouts of VRE and four bouts of meningitis. And each time, Sam played a large part in saving her.
"She knows Brooklynn inside and out. If she says something isn't right, we know we have to do something," Milner said.
Because of all the infections, Brooklynn missed 12 weeks of chemotherapy, which Milner called "nervewracking." The induction phase of chemotherapy treatment is very important to fighting leukemia. But the cancer hasn't come back.
"It's amazing that she hasn't relapsed, given all the delays in her chemotherapy and reductions in her chemotherapy doses," Milner said. "I still worry. Because of the meningitis, we couldn't give much of the chemotherapy directly into the spinal fluid the way we usually do."
Brooklynn finally went home June 9, 2008, nine months after she was admitted for what is usually a month-long induction phase of chemotherapy. She didn't remember her house, her crib or her dog, but it didn't take her long to readjust. Her siblings, 3-year-old Iain, 5-year-old Abagail and 8-year-old Hunter, were so excited to have her home, they had to be constantly reminded to take a step back or they'd smother her with their affection.
Brooklynn wasn't home long when she landed back in the hospital again. Once, it was for pancreatitis. Another time, it was a blood clot in a neck vein. And once, it was kidney stones. However, Brooklynn's most complicated problem after she finally went home was getting the medications she needed to save her life. Her central line kept getting infected and scar tissue from previous lines made it difficult to put in new ones. She had seven central lines in just eight months.
She's also had three peripherally inserted central catheter (PICC) lines, the first one in her foot because they couldn't get anything else in anywhere. She had that one for 15 weeks, until October, when she was scheduled to get another central line placed through surgery. After two hours of trying, Walter Pegoli, M.D., chief of Pediatric Surgery, came out and told the Spencers the scar tissue from other placements made it impossible for him to put in a new one and suggested they try interventional radiology. Interventional radiology successfully got a line into the right side of her neck, and she went home a day later. A week later, another complication - a blood clot - forced the removal of that one, and a PICU team had to work hard to get a new PICC line in the left side of her neck.
A month later, while staying at the Ronald McDonald House, practically a second home to the Spencers, Brooklynn pulled the PICC line out herself. "It's one of those things where you had to laugh. It's just been so much trouble," Sam said. Once again, after much effort, the PICU team came through with a PICC line in her foot.
Brooklynn still has a long road ahead of her. Because she was so sick for so long, she missed important developmental milestones, like eating solid food. She now has a severe aversion to anything being put in her mouth, so she gets most of her nutrition from a tube in her stomach. But she's growing and getting stronger and more curious every day. Brooklynn's chemotherapy treatment doesn't end until November, but she is already a miracle for everything she's been through.
"I'm so thankful that we live so close to Golisano Children's Hospital because they're so good. Two hours doesn't seem close, but look at all the families who have to leave their state," Sam said.
Join Brooklynn and her family for Miracle Weekend
Brooklynn and her team of walkers, Troopin' it for Brooklynn, will be at the 13th annual Stroll for Strong Kids and 5K Run, 9 a.m. to 1 p.m. Saturday, May 30, on the Wilson Quad at the University of Rochester. This year's event is sponsored by M&T Bank. For more information or to sign up for the Stroll or the new 5K this year, please visit www.gchas.org.
The Spencers, along with four other special Miracle Kids and their families, will share their remarkable stories at the annual telethon on 10NBC, live from the Strong Memorial Hospital lobby, 10 a.m. to 1 p.m., and 7 to 11 p.m., Sunday, May 31. The telethon is sponsored by Perkins Restaurants. To make a pledge during the event, please dial (585) 241-KIDS or log on to www.gchas.org.
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