Lighting the night

It is known to start very suddenly, often accompanied with an unexplained bruise in the neck, chest or groin area. That was what caused the parents of 9-year-old Hali Potter to take her to the doctor's office in January of 2000. Hali had a bruise on her chest that spread into her armpit, one that initially was thought to be attributed to a family hockey game. But when the pain in her shoulder and neck continued, her mother took her to Valley Hospital. Hali did not go home that night. Frightened and not knowing what was happening, she was sent immediately to Providence Alaska Medical Center in Anchorage, then to Children's Hospital in Seattle for treatment. The bruise was a telltale sign of blood cancer -- Hali had lymphoma.

Leukemia, Hodgkin's and non-Hodgkin's lymphoma and myeloma are all cancers that originate in the bone marrow or lymphatic tissues of the body. These blood cancers are considered to be related because they involve the uncontrolled growth of cells with similar functions and origins. They result from an acquired genetic injury to the DNA of a single cell, which becomes abnormal and then multiplies continuously, according to the Leukemia and Lymphoma Society. The resulting accumulation of malignant cells interferes with the body's production of healthy blood cells and can leave the body unable to protect itself against infection.

Hali, now 12 years old, is a survivor of lymphoma.

"I'm still like, not as strong as I used to be, but that's coming back," the Wasilla seventh-grader said last week. "Besides that, everything's normal."

An estimated 106,000 people in the United States will be diagnosed this year with leukemia, lymphoma or myeloma -- approximately 8 percent of all new cancer cases diagnosed, according to information from the National Cancer Institute. More than 670,000 Americans are estimated to be currently living with these cancers, and approximately 57,500 will not survive, accounting for nearly 10.3 percent of deaths from cancer, according to the Leukemia & Lymphoma Society.

Kelly Marre of Wasilla has intimate knowledge of these statistics. Her son Logan died at the age of 11 in February 1997, from complications of acute lymphocytic leukemia.

"A few weeks before he was pale and had a bunch of bruises, but when asked he had an excuse for every one, -- basketball, wrestling, martial arts," Marre said of the first signs that something was wrong with her 9-year-old son.

Marre said Logan had been pale but she had attributed that to February in Alaska -- but then he complained of trouble breathing. When he went to brush his teeth and they began bleeding, she knew it was time to see a doctor. The diagnosis was almost immediate and within a day they were on a plane to Seattle for treatment.

"It comes without warning," Marre said. "You can't see what your blood is doing, it's inside the body. So there's no way to be prepared for something like that, and unfortunately no way to prevent it."

A brighter future

Loss of a loved one is a devastating reality, but their legacy can be an inspiration of hope for those left behind. For Marre, Logan's legacy has inspired her to bring new hope to families with a member affected by blood cancer. Marre often talks of the strength her young son portrayed during his illness, and his effect on other sick children.

"It was his goal to help all the other children, those littler than him," Marre said, describing how Logan would take time to play with them, and how youngsters in the hospital would only take their pills if Logan were nearby. He jokingly referred to himself as a "babe magnet" when the little girls -- all under the age of 6 -- would insist on coming to see him at his hospital room, she said.

During his illness Logan was an honor patient with the Leukemia and Lymphoma Society, an organization Marre quickly became involved with. In 1999, when the society introduced the Light The Night Walk to Anchorage, organizers asked for her help.

After four successful years in Anchorage, Marre is organizing the first Light the Night Walk to be held in Mat-Su, on Sept. 12. Participants in the walk each carry illuminated balloons to celebrate and commemorate lives touched by cancer. In conjunction with the event there will also be a blood drive and bone marrow registration.

"It goes hand in hand," Marre said of the blood drive, "because so many people being treated [for blood diseases] need blood transfusions. Logan needed so many … it was a constant thing."

Organizing the walk and the blood drive has not been an easy task, but for Marre they fulfill a need to honor her son and others like him, and to help those like Hali.

"It's such an awesome feeling, when I feel like, 'Wow, maybe I helped someone today,'" Marre said.

Trinette Baer, campaign manager for Light The Night, said the walks are an important part of the Society's mission. From their Washington office, Baer said 25 percent of the money raised through the annual walks is used for research to find a cure, and a larger portion goes to patient services, education and advocacy. For families in Alaska, that means help with transportation money to and from Seattle's Fred Hutchinson Cancer Research Center, the University of Washington Medical Center or the Children's Hospital in Seattle for treatment -- often repeated trips over the course of a couple of years. Money is also used for mileage reimbursement for follow-up care in Anchorage.

Another program financed by the walk is the First Connection program, where people who have survived a blood cancer are hooked up with someone recently diagnosed with the same sort of blood cancer to provide support, Baer said.

The walk is also a way for survivor families to gather and support others.

Brandy Potter, 19-year-old sister of Hali, said her family participated in the Light The Night Walk in Anchorage last year with Hali and another young cancer survivor, Alexandria, walking the first lap wearing tiaras. "It was really sweet," she said. This year they are looking forward to being able to attend the walk in the Valley.

Bringing families closer

Potter said strain on the family was one of the hardest aspects of her sister's illness. Although her parents were with Hali in Seattle, she and brothers Dan and James, now 13 and 6, stayed in Alaska with their grandmother while their sister underwent blood transfusions and chemotherapy.

"It sucks," she said of their inability to be by her sister's side. "We didn't really know what was going on."

Most Alaska families with seriously ill children end up at Children's Hospital in Seattle, and it is not uncommon for the family to be separated by great distances during one of the most traumatic times in their lives.

"It was awful," Marre said of her family's separation. "Logan was diagnosed late at night. We had about three hours to pack our bags and leave for however long, we had no idea. We raced home, packed and I called my friends who had Casey, who was 6 then, and Meghan, who was 5, to bring them over to say good-bye."

Paul Courtright of Chugiak had a similar experience when his 3-year-old daughter Ariel was diagnosed in 1997 with leukemia. Courtright and wife Josie were forced to leave daughter Sara, then 9, with an aunt in Soldotna at various times while Ariel received treatment in Seattle.

"She handled it terrible," Courtright said. "She thought we abandoned her."

Many families find refuge in the Ronald McDonald House in Seattle. The house provides a home away from home for families from Washington, Montana, Alaska and Idaho while their children are being treated at nearby Children's Hospital. As many as 30 percent of Alaskans with family members undergoing treatment are at the home at any given time. Both the Marre and Courtright families stayed at the Ronald McDonald House at various times during treatment of their children.

"It's a fantastic place; a real family place," Courtright said. "You get thrust into a family and you didn't really want to be there, but you wouldn't want to be anywhere else."

With only 22 rooms available, however, there was often a waiting list.

The opening of an additional house in October will add 58 rooms for families in need. The new addition includes a separate bone marrow transplant building with 10 apartments, something Marre said she is very excited about.

Patients cannot always have their entire family with them during treatment, however.

"A lot of the time I couldn't be around people besides my mom or my dad because my blood count was low," Hali said. It was times like these she missed her family and friends the most, she said. It is also a time when the connection with loved ones is needed the most.

Marre is hoping to bridge that gap through another project she is actively involved in, the Logan J. Marre Phone Card Drive. Through donations of either money or phone cards, Marre is able to provide long distance calls to family members in Washington so they can stay connected with families back home.

Donations to the phone card drive or to Ronald McDonald House can be made by calling Marre at 373-1528. Ronald McDonald House can be reached by calling (206) 526-2010, or by writing to 5000 40th Ave. NE, Seattle, WA 98105.

Donations, help needed

Although local businesses and volunteers have offered donations and time to the Light The Night Walk, organizer Kelly Marre said she is still in need of a few items to make the walk successful.

Two large construction-type lights (with generators)

Space heaters to heat tents

Helium tank that will blow up 500 balloons

Tables and chairs

Volunteers to set up tents, to get T-shirts ready, put up signs along walkway, to register walkers and blow up helium balloons. Volunteers also needed during and after the walk.

Donations for raffle.