Power Play Against Leukemia (continued)
An Option for Adam
Children’s, which is affiliated with the Children’s Oncology Group (COG), is among many children’s hospitals in the nation that participate in clinical trials for pediatric cancers. In Adam’s first week at Children’s, Dr. Albano presented the Cooks with the option of enrolling Adam in a trial.
By participating in trials, Dr. Albano said, pediatric oncologists can tweak treatment plans or protocols that worked in the past to see if they will offer an even better cure rate in the future.
“Thirty to 40 years ago, no one was cured of leukemia,” she said. “Seventy-five to 80 percent are cured now. We work on the best treatments and build on that with each successive trial.”
For example, when doctors at a COG affiliate added an eight-week intensive phase – where chemo drug dosage is increased – to the protocol for a group of children with cancer, the cure rate went up by 25 percent.
“It’s natural to ask, ‘If we did it once, how much more might we be able to improve the cure by adding a second eight-week intensive phase?’” Dr. Albano said.
Adam was enrolled in the trial and randomly assigned to the longest protocol – three years and three months of chemo. He would be treated in six phases, with a repeat of the intensive phase that children treated for cancer in the past received just once.
On Day 7 of Adam’s stay at Children’s, he met his primary nurse, Sally Aldrich, RN, who would become a familiar face. At Children’s, each child with cancer is seen by the same oncologist and the same primary nurse every time.
“It keeps families from having to re-create their story every time they come in,” Dr. Albano said. “With a dedicated oncologist and nurse, families know they have someone they can count on who knows their child and their family situation.”
“I think Children’s is the best place in the world,” said Aldrich, who has worked at Children’s for 16 years. “The whole team provides so much TLC to the patients.”
On that day three years and three months ago, Dr. Albano checked Adam’s bone marrow by inserting a needle into his hip and removing fluid to look for abnormal leukemia cells.
Aldrich also prepared Adam for a spinal tap, in which Dr. Albano inserted a needle into his spine and removed clear fluid to ensure he didn’t have central nervous system disease and to see how many leukemia cells remained.
The next day, Adam got to go home.
But his “road map” of treatment, as Children’s oncology department calls it, had just begun.
An Amazing Week
As Sherilyn drove her VW Bug home from Children’s that first week, Adam piped up with a comment about the events of the past week.
“Wasn’t this an amazing week?” Adam said. “Wasn’t it wild? Wasn’t it something?”
“I think Adam had started viewing life differently,” Sherilyn said. “He realized life was more than a game.”
“Adam made the decision early on that he was going to do what it took,” Steve said. “He didn’t complain. He said, ‘let’s do this, it has to be done, we can’t change it.’”
That first week at home, Adam took pills “morning, noon and night,” Sherilyn said.
One of his drugs, prednisone, quickly became his nemesis.
“Adam had eaten a bunch of potato chips,” Sherilyn said. “He was so hungry. He went upstairs that first night Adam and came down the stairs the next day looking seven months pregnant.”
As Adam moved on to the next chemo phase – consolidation – his treatment became more intense. He came to Children’s every week for spinal taps, a weekly IV push of vincristine, another chemo drug, and a two-hour infusion of daunorubicin, which interferes with the growth of cancer cells, slowing their growth.
Many pediatric patients are put to sleep for spinal taps, Aldrich said – but not Adam.
“It can be extremely uncomfortable,” she said. “But Adam took everything in stride and decided to make the most of his life.”
Adam’s optimism earned him a special place in Aldrich’s heart.
“I love him to pieces,” she said. “He exuberates so much radiance and joy. He always had a smile on his face.”
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