January 05, 2005

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Palo Alto Online

Living with cancer

by Alexandria Rocha

Wearing jeans and a blue sweatshirt that reads "Cancer Sucks," 13-year-old Michael Gourdin wraps himself in a plaid blanket and sits on the couch in his family's Palo Alto home.

It's the week before Christmas, and two teachers and one staff member from Jordan Middle School arrived with presents -- a $200 Best Buy gift card for Michael, a half-dozen cards for his parents, and a box of Krispy Kreme doughnuts for the whole family.

"How are you feeling Michael?" asked Lee Gregg, who works in the school's attendance office.

"Cold," he responded, wrapping the blanket tight.

Earlier that day, Michael underwent a chemotherapy treatment for Burkitt's lymphoma, the most aggressive form of cancer that strikes about 800 children in the United States each year. The cause is unknown.

Since May, when Michael was first diagnosed with the disease, his life and his family's has been drastically changed. Their priorities, typical of many Palo Alto family's, shifted from their 40-plus work week and good grades to health and each other.

Cancer "consumes so much of your life," said Michael, at home a few days before the new year. "You can't imagine life without it. Life was with cancer."

In less then two weeks, Michael is scheduled to have a bone marrow transplant at the Lucille Packard Children's Hospital. It is a rigorous procedure in which recovery will span nearly the length of 2005. His 15-year-old brother, Aaron, a Palo Alto High School sophomore, will be the donor.

It was the end of spring last year, the time every elementary school kid dreams about. With only three weeks left, summer vacation was knocking at their doors.

While the buzz at Jordan grew louder, Michael's insides started sending signs of trouble. He threw up a few times for what looked like no apparent reason and missed a couple days of school. The family thought it was a mild case of the stomach flu.

Soon it became difficult for Michael to eat and he was constantly thirsty. His parents noticed he was gaining weight. They were puzzled.

During seventh period on a Monday, after he returned to school, all the red flags that had spanned more than one week came to the surface.

"Michael, are you feeling OK? You're sweating like crazy and it's not even hot," a friend asked.

He was not OK. He was miserable. The then 12-year-old was short of breath. A teacher sent him to the nurse's office where his dad was quickly phoned.

Paul Gourdin took his son to the Palo Alto Medical Foundation late that afternoon. His doctor was not available, but Dr. Erica Goldman saw Michael and wanted more tests.

It was good fortune the foundation's Department of Radiology had already closed -- they instead headed straight to the emergency room at Stanford Hospital. Goldman, a former chief resident at Lucille Packard, called ahead to alert the staff.

"She didn't like what she saw because he had a distended belly," said Paul, his arms as if cradling a beach ball. "She knew something was wrong."

At Stanford, an ultrasound revealed fluid in Michael's abdomen, which warranted a CT scan. Michael was admitted into Lucille Packard that night.

Two days later, a team of seven doctors pulled Paul into a private room and told him their prognosis. It was Burkitt's and they had hours. Michael's mom, Joanne Weiss, who had been on a business trip in New York, rushed down the corridor at that moment.

"I just remember counting and saying, 'There are seven people here that basically I've never seen before telling me this,'" she said.

Michael's malignancy was attached to his liver and weighed six pounds.

That day, Michael's health began to rapidly deteriorate. His kidneys failed because the cancer was overwhelming his frail body, and his heart rate spiked to 140 beats per minute. Close to midnight, the doctors were able to administer the crucial first dose of chemotherapy.

Because he was sedated from morphine, Michael does not remember most of those first scary weeks.

The chemotherapy regimen for Burkitt's is a short intensive three to six months, in which there is a 75 percent survival rate with no relapse. But just after Michael turned 13 on Oct. 16, he started having severe headaches and began throwing up again. A spinal tap at Lucille Packard revealed upsetting news: the cancer had returned to his central nervous system.

He has recently completed two more rounds of chemotherapy, this time through an Omaya reservoir, a device surgically inserted under the scalp for direct injection into the spinal fluid.

In the beginning, Michael was in denial. He would cover his face with the hospital bed sheets and not speak with any doctors. Then he was angry.

"I've tried to black out the experience," he wrote in an article titled, "Cancer is hell," for his school's newspaper, the Jordan Starr.

"Each day I was throwing up nothing and was sleeping 20 hours because of the amount of drugs they had me on. I lost all of my hair and eventually became so weak I could barely stand," he continued.

After awhile, Michael came to terms with his situation. There have been lots of adjustments, and life has become event driven rather then schedule driven.

For example, five years ago, the four spent the Christmas holiday in Rome. Three years ago it was Paris. This last year, they canceled a trip to Hawaii because of Michael's relapse. He was admitted into the hospital for a high fever, neck spasms and bleeding from the gums, all side effects of chemotherapy, just a few days before the holiday.

"That was the scariest thing. Because you can't control it," Michael said.

The seventh-grader also missed out on his sixth summer at the Stanford All Sports Camp.

The isolation has been the biggest change. Because Michael's immune system is so delicate he cannot go outside without a respirator. He spends most of his time playing video games, which luckily he and his friends already enjoyed.

Like typical Palo Alto parents, Joanne and Paul were used to working 70- to 80-hour weeks. Paul at a start-up based in Los Angeles and Joanne at a non-profit venture firm in San Francisco. Since one of them has to be near Michael all the time, their professional lives have also seen an adjustment.

"People ask me, 'How do you get up in the morning?' I tell them you just do. You don't have a choice," Joanne said.

And for Aaron, he's had to grow up a little faster. As a teenager in one of the most competitive arenas in the state for honor roll and college admissions, his priorities have shifted from obsessing over grades and homework, to family.

Since the diagnoses, a cooler has sat on the family's front steps with a note taped to the white lid reading, "If we're not home, leave food in cooler. Thank you." It's the mark of a community's constant visits, many to bring ready-to-eat meals - homemade potato leak soup, tamales and Chili Verde, to name a few.

"Your life isn't your own, and if you had to prepare meals ... it's just that much more difficult," said Paul.

From food to friendship, Palo Alto's community has been truly behind the family. Michael's sixth-grade teachers visited regularly last summer while he was in and out of Lucille Packard for chemotherapy, treating him to Jamba Juice and Coldstone. Jordan's teachers have also rallied their classrooms this school year to send support.

After his relapse in October, he received about 40 letters from kids at school encouraging him to get well. (He was most excited about the letters from girls, and can't wait until Valentine's Day, he said grinning.)

Michael's friends, especially Bowen Doxsee, Max Neidhardt and Ethan Sheldon, all Jordan seventh-graders, have stuck by his side through the ordeal. The three rode their bikes to visit Michael in the hospital numerous times. When it started to get dark earlier, their parents gave them rides so they could stay later.

"I didn't know what cancer was like," Doxsee said one afternoon at Michael's house. "I didn't know how hard it was on a person."

On Jan. 17, Michael will start a demanding procedure known as a stem cell bone marrow transplant at Lucille Packard. He will be given extremely high doses of chemotherapy and radiation for one week to kill either all or most of the cancer. At the end of the week, Aaron will have his stem cells harvested, which sounds complicated but is actually quite simple.

"It's just like donating blood except it runs through a machine that filters out everything but the stem cells. Then everything else goes back into my system," Aaron said. "It's just sitting there for four hours."

Aaron's cells are then given to Michael like a blood transfusion. The transplant acts as a "rescue," since his system will be depleted by the heavy treatments.

"Ultimately, he ends up with a new immune system. He'll have his brother's immune system," Paul said.

From there, it will be about nine months of recovery, and like now, Michael will not be allowed to go outside without a respirator. He can, however, have visitors.

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