An open battle against cancer

Chase Crawford-Quickel is cancer free! Hallelujah!! Thanks be to God! Your prayers, love and support have gotten us through one heck of a year. I can’t stop crying and finally they are tears of joy. Thank you, thank you, thank you. . . .

Kim Quickel writes these joy-filled words in her blog in February 2004, after her then-14-year-old son, Chase, had endured surgery and a year of chemotherapy and radiation to beat a rare soft-tissue cancer.

Three cancer-free years pass. The blog -- which began as an update for friends and family but became an intimate chronology of a family’s battle to save its child -- sits idle.

Chase enters his junior year at Aliso Niguel High School. He spends weekends fishing with Blake, his best friend since first grade, and hanging out with Kelsey, his girlfriend. During the spring, a cut on the inside of his lip doesn’t heal. A fever prompts Chase to visit his oncologist.

“They took my blood and they told me right away what it was,” Chase said recently, looking back. “I was not expecting this. I was just expecting to go home and, I don’t know, plan spring break and stuff.”

It was time to start the blog, and the battle, again.

Chase Crawford Quickel has been diagnosed with Acute Myelogenous Leukemia (AML). It is extremely life threatening; He will be hospitalized for 4-6 months. During this time he will be home a total of 12 days, spread out during the 4-6 month period, for a mental health reprieve. Chase has begun chemotherapy.

After four months, in August 2007, Chase receives a bone marrow transplant. He misses the end of junior year and half of senior year. But the anonymous donor’s stem cells take root and begin to pump out cancer-free blood. Everything seems normal.

In November, Chase poses for senior pictures, peeling off the thin wool cap he always wears. A short crop of dark fuzz is finally growing back. He turns 18 five days before Christmas and returns to school weeks later. He catches up quickly and makes plans to graduate with his class in June.

When he grows tired and sick in February, his parents pray it is just a virus. His doctors order blood tests.

As I write this, Chase is fishing with his best buddy Blake, he has no idea what is in front of him. The doctors said to send Chase fishing this weekend. Chase will be admitted Monday. We will face the decision to let his life be and face the course or to do very aggressive chemo then another bone marrow transplant. Chase will ultimately make the decision. Please no calls or visits to the house at this time . . . just pray, pray, pray. . . . I feel dead inside.

Chase arrives home and hits the snack pantry. His mother asks him to sit down. He refuses. She looks him in the eyes and says, “You have leukemia.”

I asked for a hug and he said “Not right now.” He went to his room, and I went outside to howl with my pain. Dr. Neudorf called around 5 pm and wanted to talk to us. Chase would not allow me to be on the phone, so I stood by the door and tried to overhear their conversation. Chase wanted to know his odds of survival with or without treatment. It killed me to hear those questions.

Chase has already beaten cancer twice, but the odds are getting longer. The 13-year-old who once asked, “Why me?” has matured into a resolute, independent 18-year-old who no longer wants his mother to go with him to the doctor and who calls all the shots on his medical care.

“I had always wanted it because she just worries. She’s another nurse,” he said. “I like to have control of myself.”

After their conversation, Chase gave me permission . . . to talk to the doctor. I wanted the answers to the same questions Chase had asked. So here goes, Chase has less than 2 months to live without treatment, or with treatment, a slim chance of survival.

In the weeks that follow, Chase withdraws from school and returns to the hospital. Doctors hope five days of chemotherapy will kill the leukemia -- without killing him -- and allow for another bone marrow transplant. Chase is weak and feverish. His chest hurts and he can’t breathe. His short dark hair falls out again.

Yesterday he requested his head shavers. . . . When the nurses told him that his counts were too low for shaving, he took his fist and immediately removed a handful of hair. At that moment his OICU nurse said, “OK, we’ll shave you”. When I walked in the room, I saw my boy, who is a man, shaven and bald in certain odd spots.

“My hair had just started to grow back,” Chase said. “That kinda sucks, but whatever.”

This teenage nonchalance -- with a dash of bravado -- appears whenever Chase talks about the cancer. Dr. Steven Neudorf tells him he has a 30% to 40% chance of surviving the first year. Chase takes the news stoically, shooting his mother an exasperated look when she gets teary.

“It’s just statistics,” he said. “I’d rather just think positive. I just want to get [treatment] over with. I don’t really think about that. It doesn’t get me anywhere if I’m sad and stuff.”

He needs more chemotherapy. Then another bone marrow transplant or stem cell infusion. But his first donor isn’t available and only one other person on the donor registry matches. The family can only wait.

“We’re in the race of our life right now,” says Kim Quickel, 50, a marriage and family counselor.

Chase, a wiry young man with a dry sense of humor, says he is willing to tell his story only in order to raise awareness about bone marrow transplants.

Testing to be placed on the worldwide registry is pain-free -- a cheek swab or blood test. Then, if a patient finds a match on the registry and the match agrees to donate, stem cells -- the workhorses that create blood -- can be removed in one of two ways.

In a surgical marrow donation, the donor is sedated, and a physician punctures the hip bone with a hollow needle and withdraws marrow, spongy tissue found inside bones. Though the patient feels some pain, he or she will be able to walk the next day and return to work in a week.

Alternately, a stem cell transplant requires the donor to have IVs hooked up in both arms. Blood is taken from one arm, run through a machine that filters out stem cells and put back into the other arm. Recovery time is shorter than for bone marrow donation.

Chase recovers from the initial round of chemotherapy and gets to go home for a few days. His doctors think the reprieve will shore up his spirits before he is readmitted -- probably for months -- to the oncology intensive care unit at the Children’s Hospital of Orange County.

During his brief stretch of freedom, Chase spends time with Kelsey; Blake; his oldest brother, Kyle, who has taken a month’s leave of absence from his job in San Francisco; and other friends and family.

They attend an Angels game, cruise around Newport Harbor in an electric boat and fish for calico bass on a family friend’s boat. His mom wants to throw a get-together before he reenters the hospital. Chase objects.

“I don’t want a party,” he says. Eventually, they compromise on a parent-free Cinco de Mayo celebration. After ordering platters of bean burritos and chicken taquitos, Kim leaves the house, and Chase’s girlfriend and friends arrive. Chase and his brother jokingly bicker about the faded gray T-shirt that Chase wears.

“That’s my shirt!” Kyle says.

Chase smirks, “Yeah, I took it. You left it here.”

“On accident!” Kyle retorts.

The days pass quickly, and the family learns that the lone bone marrow match, a 53-year-old woman, has agreed to donate. Chase will endure eight days of intense chemo, then the woman’s stem cells will be injected into his blood.

On May 7, after Chase packs his nubby white blanket, laptop and Gatorade, he and Kelsey drive to the hospital. Unlike prior visits, when he has had to stay in a cramped room without a door, he is assigned to spacious Room 308. One wall is mostly glass, on which his friends draw fish, flowers and messages with markers.

Chemicals begin streaming through Chase’s veins early the next morning, and he sleeps through the first two hours.

“Ready to fight?” asks Dr. Ivan Kirov, a pediatric oncologist, as he probes Chase’s abdomen and back. “This time we’re not taking any prisoners.”

Kim and Kyle arrive with take-out chicken strips, eager for Chase to eat while he still has an appetite. The patient, who is wearing his brother’s purloined shirt, is already feeling antsy.

“I know I’ll be in here for a while,” he says. “It’s easier when you don’t know that.”

He fills his time text-messaging friends, watching DVDs and chatting with visitors.

“I just . . . think about the future, like fishing and hanging out with my girlfriend,” he said. “I don’t really think about the present.”

He’s been fishing since he was a little boy. “It’s just really relaxing,” he said. “You can have any kind of problem during the day, you just go out on the ocean and it’s gone.”

He refuses to dwell on his disease.

“It’s not a big deal to me,” said Chase, who has declined to speak with hospital therapists about his feelings. “I don’t need to talk about it.”

His parents deal with the stress in different ways. Dan Quickel, Chase’s stepfather, who has helped raise him since he was an infant, hits the gym; he hopes to avoid what happened the first time Chase had cancer, when he gained 40 pounds.

Kim relies on her faith and her blog. Chase professes not to read it, but every now and then when she writes something particularly sad, he’ll tell her she’s being a “drama queen.”

Most of all, Kim and Dan try to hide their fears in front of Chase. “When you have a son who is going through this and is diligently strong, it would be hypocritical for me to have a pity party,” Kim says.

On Mother’s Day, the family watches an Angels game in Chase’s room.

I have truly received the greatest gift today, to have us all together, the boys are rough housing, there is laughter in the room and we are relaxed.

The next day, doctors administer Cytoxan, the most aggressive medicine so far. Chase becomes violently ill. He forces himself to swallow scraps of a bagel.

By the day of the stem cell transplant, Chase is lethargic and the doctors are threatening to insert a feeding tube if he doesn’t eat more. His father, Chuck Crawford, has flown in from Texas. They play a baseball video game, but Chase is too tired to finish.

Kim and Kyle arrive and see the medical staff crowded around a cooler that contains a plastic pouch of stem cells. The liquid, which looks like tomato juice, would fit into a tiny espresso cup.

As the physicians prepare to attach the pouch to the intravenous line in Chase’s chest, Kim bows her head and blurts out a quick prayer: “We hope and pray that this is going to cure your cancer. We love you, God, amen.”

She grows teary, Chase shakes his head, stares at the plastic pouch and tries to stifle a smile.

The stem cells stream quickly into Chase’s body, and it’s over in less than 10 minutes. Someday -- perhaps a year from now when the transplant rules allow it -- Chase wants to meet the donor to thank her.

As graduation approaches, Kim longs to see him walk across the stage in a cap and gown. For Chase, though, the ceremony doesn’t matter. He has missed months of classes, homecoming, the prom. This doesn’t really feel like his class.

“The diploma’s more important to me than walking,” he said.

Chase watches the graduation ceremony through a live video link from his hospital bed. The next day, Charles Salter, Aliso Niguel’s principal, presents Chase with his diploma. He is exhausted and soon nods off, clutching his blue graduation tassel.

A tough stretch lies ahead. Chase’s immunity is so low that any infection could be deadly. And once he is able to eat, he’ll be kept to a strict diet that forbids many foods, including raw fruits or vegetables.

But despite his ordeal, Chase retains his unbreakable spirit. Soon he hopes to pick the courses he’ll take in the spring at Santa Barbara City College to fulfill requirements so he can transfer to a four-year college.

“I just want to get it over with,” he said. “I’ve got to get ready for school and stuff.”

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seema.mehta@latimes.com

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Bone marrow and stem cell donation

What

Marrow is spongy tissue found inside bones that contains stem cells, tiny factories that make blood. Stem cells are also found in the bloodstream and in the umbilical cord. All can be removed from a donor and transplanted intravenously into a patient to fight life-threatening diseases that include leukemia and other cancers. About 70% of patients do not have donor matches within their families; these patients must search for a volunteer donor whose tissue type matches their own.

Supply

More than 11 million people have joined registries around the world as an initial step toward possible donation of bone marrow or stem cells. About 33,000 Americans join the National Marrow Donor Program each month.

Demand

More than 10,000 Americans are diagnosed with a potentially fatal disease each year and need a bone marrow, stem cell or cord blood transplant from an unrelated volunteer donor to save their lives. In 2007, the National Donor Marrow Program facilitated more than 3,700 marrow, stem cell and cord blood transplants. Because of varying donation patterns, whites currently have a greater chance of finding a match on the registry than minorities, with donations from many racial and ethnic groups urgently needed.

For more information, visit www.marrow.org.