First Jessica Gauss noticed that her 22-month-old son, Blake, wasn’t having fun in the kiddie pool with his friends at a Memorial Day picnic. Then she noticed he was looking pale, and his lips were turning white. When she took him to the pediatrician near their home in Geneva, Blake’s blood work showed he was severely anemic and Jessica was told to take him immediately to UR Medicine’s Golisano Children’s Hospital.
She called her husband, Adrian, to tell him the news (he quickly met up with her), made arrangements for her 4-year-old daughter’s care, then drove 50 miles to the children’s hospital’s emergency room, where Blake received an instant blood transfusion. Two oncologists explained shortly afterward that Blake had leukemia.
“I expected for the pediatrician to say it was a virus, and that he should feel better in so many days,” Jessica said. “Who’s expecting to hear you have to send your kid up to Rochester? And then that your kid has cancer?”
Blake moved to the Pediatric Intensive Care Unit that evening, where he received two more blood transfusions. A spinal tap and bone marrow biopsy the next day revealed acute lymphoblastic leukemia, or ALL, the most common cancer in children and with a cure rate of about 85 percent. He was given a central line and enrolled in a clinical trial through Children’s Oncology Group, a cooperative research network that offers the latest and best protocols for treating pediatric cancers.
Back home after nine days, the first month was an adjustment. On steroids in addition to weekly chemotherapy treatments, Blake was constantly hungry, gained nearly seven pounds, and was so swollen from fluid retention that he would need two to three months of physical therapy to be able to walk again.
A second bone marrow biopsy showed the slightest bit of residual leukemia, called Minimal Residual Disease – 0.19 percent – which bumped Blake from the trial’s standard-risk protocol to an intensive high-risk protocol spanning a little over three years and including nearly 10 different chemotherapy drugs.
“Part of me was thinking, ‘I just want the leukemia out of his body,’ but another part was grateful we were in the clinical trial, because we never would’ve been bumped up to the high-risk protocol otherwise,” Jessica recalled. “I was hoping that meant he wouldn’t ever relapse.”
Over the next two months, Blake would be admitted to Golisano twice – once for 10 days, once for three days – to treat fevers that threatened his compromised immune system and increased the chance of blood infections.
He got a four-month reprieve from complications after that, while going to the hospital for inpatient chemotherapy visits every couple of weeks, until another fever and lethargy led to a chest X-ray and then a CT scan that confirmed aspergillus, an invasive fungal infection in his left lung. He needed to wait three weeks before undergoing surgery, however, because his persistent fevers needed to be treated and he required IV nutrition to keep his weight up. Chemotherapy treatments had to be stopped in the interim.
“This type of infection has a significant mortality to it, and it was about the size of a baseball,” said Jeffrey R. Andolina, M.D., M.S., a pediatric oncologist at Golisano Children’s Hospital. “We treated it with anti-fungal drugs and surgery to remove the mass and a lobe in the lung.”
The same day that infection was found, Blake contracted another: Clostridium difficile, commonly known as C. diff, the first of three episodes he would endure over the next four months, all of them causing constant and acute diarrhea. One of them was accompanied by cryptosporidium, a gastrointestinal illness that caused diarrhea “two to three dozen times a day,” Jessica said.
Nearly a year after his medical problems began, Blake faced his toughest diagnosis yet. Admitted to the hospital after a routine spinal tap showed evidence of meningitis, doctors found a plum-sized fungal mass in his brain. This infection, as well as the others, was due to a decreased immune system from the chemotherapy, which had to be delayed once and cut off once while Blake recovered.
“We had people praying for us from all over the world,” Jessica said. “Friends and family sent us scriptures and we posted them around the room. Without all of that, I don’t know how we would’ve gotten through it.”
Andolina underscored the severity of the situation: “About 10 years ago, 100 percent of kids would die from this brain infection. He’s very fortunate to have survived that.” Referring to Blake’s parents, he elaborated, “Most families would have gotten frustrated or angry at all these major, major things going wrong, even though we couldn’t have prevented them, but they never did.”
All in all, after two more hospitalizations from port infections, in the area just under the skin where a small device helps deliver chemotherapy, Blake spent 150 days at Golisano Children’s Hospital during 14 hospital admissions over an 18-month period. (His grandparents often took care of his big sister, Nadia.) Multidisciplinary care between specialists from pediatric surgery, neurosurgery, and pediatric infection diseases were critical in Blake’s recovery from each one of his complications.
Now in remission, Blake, an energetic boy who loves planes and Thomas the Tank Engine, travels to Golisano Children’s Hospital every month for chemotherapy (one out of three treatments is a spinal tap), and takes oral chemotherapy and anti-fungal medication daily, as well as a drug for neuropathy in his feet, a side effect from the chemotherapy.
Jessica said she is grateful that doctors “were always very upfront and honest about what was happening and what could happen. They never left us in the dark.”
Adrian added that he appreciates the lengths to which the nurses, and child life specialists helped Blake through his perpetual ordeals. When they knew he was coming in, for example, they’d put aside the toys he liked to play with most.
“They were great at getting him basically whatever he wanted to keep his mind off what was going on,” he said. “They made us all feel welcome all the time.”
A brave fighter, Blake has been chosen to be one of the hospital’s five Miracle Kids for 2014, to represent the 74,000 children Golisano Children’s Hospital treats every year.
Tune in to the Children's Miracle Network Hospital’s News10NBC Telethon on Sunday, June 1, to meet Blake and his family, along with four other Miracle Kid families, Golisano Children's Hospital supporters and health care providers. The Telethon is from 10 a.m. to 1 p.m. and 6:30 to 11 p.m. on News10NBC. Dial (585) 241-KIDS during the Telethon or donate online to make a gift.
The Telethon is part of a weekend-long celebration called Miracle Weekend, which kicks off Saturday, May 31, with the 18th annual Stroll for Strong Kids fundraising walk and 5K run. The event starts at 8 a.m. at Genesee Valley Park and wraps up at about 1 p.m.