Power Play Against Leukemia

from Practice Update, Summer 2005

Sherilyn Cook still remembers the answering machine message like it was yesterday.

She and her husband, Steve, had just returned to their Loveland , Colorado , home on June 20, 2001 , from Sherilyn’s birthday dinner. Sherilyn noticed the answering machine’s red light blinking: they had a message from their 15-year-old son, Adam, who had just left for summer camp in Nebraska two days before.

“He called to wish me a happy birthday,” she said. “Then he said he was turning yellow and green and that he had a headache. But then he said, joking, ‘Don’t worry, mom, because I’m not dying. I still see the light at the end of the tunnel.’”

The next day, Adam was diagnosed with high-risk acute lymphoblastic leukemia (ALL).

‘Kind of a Shock’

Four days before Adam left for camp, he was supposed to go to ice-hockey practice. Normally the Cooks would practically have to bar the door to keep Adam away from his favorite sport, but that day, Adam didn’t feel like playing.

“I had had a headache all week,” Adam said. “I thought I was getting a cold or the flu.”

The headaches continued at camp, but Adam thought nothing of them. Then he started to turn yellow.

The camp nurse at first thought Adam had a virus or jaundice. But the next day, when he was still yellow (with eyes “green like a lizard’s,” Adam said) the nurse took him to a nearby hospital.

“They did a bunch of tests on me,” Adam said. “Then they told me I had leukemia. It was kind of a shock.”

Adam was diagnosed with ALL, a cancer that attacks lymphocytes, a type of white blood cells.

The Cooks got the bad news that evening.

“I hung up the phone and bawled and immediately prayed,” Sherilyn said.

The doctor told Sherilyn that Adam needed to be transferred to The Children’s Hospital because of its specialty in pediatric leukemia–the hospital treats 80 percent of kids in Colorado diagnosed with ALL.

Adam needed to take Flight For Life to Children’s to get a blood transfusion right away. But the helicopter couldn’t fly in the rainy, stormy weather. Adam would have to make the five-hour trip to Children’s in an ambulance instead.

A Long Road Ahead

Sherilyn and Steve met the ambulance at Children’s at two the next morning. Adam was admitted to 5A, the oncology floor, to begin his treatment–treatment that would last three long years and three months. Treatment that would cause fit, athletic Adam to gain 40 pounds and lose most of his hair.

Children’s neuro-oncologist Nicholas Foreman, MD, was the first doctor the Cooks met. He talked to Adam, not his parents, Steve said. “Before, no one talked to me,” Adam said. “At Children’s they did.”

“I don’t think that doctor has any idea the kind of peace he gave us that first night when he came in and talked to us,” Steve said. “It put us into a good place.”

Adam also met his primary doctor, Edythe Albano, MD, Children’s director of clinical oncology. “Adam was jaundiced–his body wasn’t getting rid of bile normally–which is very uncommon in leukemia,” Dr. Albano said. “We couldn’t start some of his medicines right away because one in particular is gotten rid of in the bile.”

Even though ALL is the most common childhood cancer, it is uncommon at Adam’s age, Dr. Albano said. The most common age for ALL to present is three. Just 2,500 children are diagnosed with ALL each year in the United States .

The first step was to give Adam platelets. Then Adam began the first of six phases of chemotherapy–induction, which lasts for four weeks. The purpose of this phase is to shrink the cancer and evaluate the response to drugs and other agents. Dr. Albano prescribed a massive dose of the chemo therapy drug prednisone to put Adam into remission, and also surgically placed a mediport–a type of IV that stays in once the patient goes home–in Adam’s upper chest.

An Option for Adam

Children’s, which is affiliated with the Children’s Oncology Group, 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 an NCI 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.”

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.

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, and a two-hour infusion of daunorubicin, which interferes with the growth of cancer cells, slowing their growth.

Smooth Sailing

For the next four months, Adam’s treatment went well. He continued to take his meds into the third and fourth phases of chemo: interim maintenance, where his dosage was reduced to give his body a chance to bounce back, and delayed intensification, where treatment became “hard-core” – the most intensive yet, Adam said.

He returned to classes at Mountain View High School in Loveland as a sophomore, and even through the most intensive phases continued to play hockey.

But after nearly a year of smooth sailing, Adam faced a bump in the road.

It was April 2002, and he was back in the hospital. It was his 16th birthday.

Supposed to Be a Good Day

The night before, the Cooks had a party to celebrate Adam’s last day of intensive therapy.

“Dr. Albano told us ‘Tomorrow is going to be this awesome day for you–your first day of maintenance.’ Instead of having a good day, Adam wound up in the hospital.”

That next day, his speech was slurred, and he had no control over one of his arms.

Adam had had a bad reaction to the chemo he received a few days before the party, Dr. Albano said.

“The chemo caused the blood vessels on one side of his brain to start collapsing, just like a stroke,” Sherilyn said.

Dr. Albano prescribed another major dose of prednisone–for 14 days.

“Adam just shut down emotionally,” Sherilyn said. “For the first time in all of this, he crashed.”

He had worked so hard to lose the 40 pounds he had gained. He was eagerly anticipating a summer of working out to prepare for hockey without the fatigue he felt after taking intensive doses of chemo.

‘Best Thing That’s Ever Happened’

Nearly a year later, on September 5, 2004 , after three years and three months of weight gain, hair loss and complications, Adam finished his chemotherapy.

“We had so many celebrations,” Sherilyn said. The Cooks blended Adam’s end-of-chemo party with his high-school graduation party.

Adam also celebrated at the hospital, where staff give each child who has completed chemo a party with a cake and a gift and sing “Happy Off Therapy,” Aldrich said.

Adam is now in partial remission; his symptoms are reduced, but he is not totally cured. He still must take an antibiotic on the weekends until the end of the year because his immune system will take three to four months to bounce back. He’ll still have to go to Children’s once a month for a year for follow-up, including blood draws. The second year, he’ll come once every three months; after that, he’ll need a checkup once a year for the rest of his life.

It’s “extremely unlikely” Adam’s cancer will return, Dr. Albano said. He “can be and do whatever he wants,” she said.

Adam is a freshman at a community college in Colorado Springs ; he plans to transfer to the University of Colorado-Colorado Springs next year. He works part-time as a server at Red Robin and lives with his roommate and best friend Chad .

But even after all he’s been through, Adam insists that getting leukemia is the best thing that ever happened to him.

“I see things from a different perspective,” he said. “I appreciate what I have now.”

Although Steve and Sherilyn aren’t sure it’s the best thing that ever happened to Adam, they are grateful–that Adam’s therapy is through, and to everyone at Children’s who made it happen. 

“They are so wonderful with kids there,” Steve said. “Dr. Albano forms a lifelong tie to these kids. She goes to their graduations. She knows she can make a difference in kids’ lives.”

“They know how to love my son,” Sherilyn said. “Adam felt loved when he went there.”