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Join Team Holland for Light The Night Walk Oct. 12

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Contributed by: Ed Crowe on 10/10/2008

Story by Kathryn A. Scott

Tina Holland has leukemia. Very few people knew that this 5-foot-two-inch, 44-year-old Camarillo mother of two was coping with a deadly blood cancer until her 9-year-old son, Caden, started going door-to-door in July telling neighbors all about it.

"He made me come out of my shell," Tina said of Caden, "Two-thirds of the parents we know from school did not know I had cancer. Now that they know, my neighbors look at me like 'really?' I don't want to be a victim, and I'm not one, but I had to take off my security blanket. Now when they ask me, 'do you have cancer?' I say, 'yeah, I do, and so what.'"

Caden's neighborhood campaign began when his mother received some materials in the mail from the Leukemia & Lymphoma Society (LLS), the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services.

Founded in 1949, the nonprofit has invested more than $600 million in research with a goal of finding a cure for blood cancers by 2015.

LLS invited her to participate in an upcoming fund- and awareness-raising event called "Light The Night" to be held on Sunday, Oct. 12, from 5-8:30 p.m. at Warner Center Park in Woodland Hills.

Each autumn across the United States and Canada, walk teams of friends, families and co-workers gather in parks across the country and walk in twilight, holding illuminated helium balloons to raise funds for and awareness of the plight of more than 894,000 Americans living with a blood cancer.

Tina said her son saw the brochure, read through it and told her that he wanted to participate. She cautioned him that it would be a lot of work but he persisted.

He formed a walk team called Team Holland, and wrote a letter that he could share with neighbors as he went door-to-door asking for donations. He also set up a personal fundraising page through the LLS website at http:teams.lightthenight.org/TeamHolland.

"Obviously, my mom has it, and I want to save her, and save other people's lives," Caden said, "So I wrote a letter saying how old I was, and why I was asking them to donate, and that I set my goal for $2000."

Tina said Caden went door-to-door and not a single household refused to help. His first night, he raised $400 in donations.

"A neighbor who lives behind us dropped off $200," Tina said, "Another neighbor down the street gave us $100. Then people we didn't know started making donations online. An older man even told Caden, 'Look I'm on a fixed income and I don't have any money to spare, but I can't say no, so here's a dollar.'"

By the end of August, Caden had surpassed his $2,000 goal. He now has raised more than $4,500, and said he hopes to get a total of $5,000 in donations.

He said that he understands he can't take his mother's cancer away, but he wants to raise money for LLS because the society helped to fund research that resulted in the development of an important medication called Gleevac that keeps his mother alive.

Tina was diagnosed with leukemia in April 2005. Doctors in Oxnard discovered the cancer when she was admitted for back surgery. Leukemia originates in the bone marrow. A cancerous change takes place in the marrow cells, forming mutated cells. These cells multiply rapidly and interfere with the production of healthy blood and immune cells. The disease can lead to severe anemia, bleeding and impair a sufferer's ability to fight infection.

Within a week of her surgery, Tina had a painful bone marrow tap so doctors could learn if someone within her family might be compatible for a transplant. Her brothers were tested but neither of them was a genetic match, she said.

Her doctor then prescribed an oral medication called Gleevac that blocks the development of the leukemia cells. It packs the punch of chemotherapy without some of the harsher side effects, like hair loss and intestinal distress. "It's a miracle pill," Tina said, "It keeps the cancer at bay."

Although she is slightly anemic, and has to be hospitalized periodically since her diagnosis, Tina said she generally feels fine. "I do get tired," she said, "I've gone from working full-time to part-time as a court reporter. And I am underinsured. You don't realize that you're underinsured until you have a catastrophic illness."

Tina said she and her husband, Rick, try not to dwell on the future and their mounting insurance bills. She is focused on staying healthy, and looking forward to walking with her family at Light The Night.

"I am so proud of Caden," she said, "I know it really bothers him knowing I have cancer. This is something he can do to help. Not bad for a 9-year-old."

Like Tina, Mary Pastore, of Encino, did not tell many people about her blood cancer, Non-Hodgkin's lymphoma (NHL).

"I was shy about it, and not as involved as I could have been," Mary said. But over the five years that Mary's friends have walked in her honor at Light The Night, they gradually have convinced her to play a greater role in their efforts.

"I am fundraising to make the research possible for people like me," Mary said, "So much has been achieved. I've seen the treatment get better and better. I'm on the drug Rituxan. It acts like a magnet that is attracted only to the cancer cells. I get it every six months. It's takes four to five hours once a week for four weeks. I take it intravenously through a port. It's tiring but there are not strong after effects."

NHL is a cancer of the lymphatic system. It affects lymphocytes, which are a type of white blood cell and part of the body's immune system, which helps to fight infection.

With NHL, those cells become cancerous, multiply and form tumors. Like Mary, more than 430,000 people in the United States are living with it. NHL is the fifth most common cancer for men and women in America.

The drug Rituxan targets the cancerous cells in the body of someone with NHL and destroys them. It leaves most other types of cells alone, and makes it easier for the body's immune system to fight infection.

Mary learned she had NHL in June 2002. While on a family vacation in Cape Cod with her husband, Daniel, and their children, Anthony and Stephanie, Mary said she developed a cough. "I had never been sick at all in my life," she said, "I went to my regular internist because I had this cough, and I had this swelling on my neck. I thought I was just tired from working."

Doctors at Encino Tarzana Medical Center discovered Mary had a large tumor on her heart, and suspected it was caused by NHL. She said they told her they needed to biopsy the tumor, and that they would let her decide on a course of treatment when they got the results.

During the biopsy, Mary stopped breathing. "I was unconscious for about a week," she said, "I woke up with tubes in my throat. I never got to make a decision. My husband, Daniel, had to make it for me."

Mary said she moved from intensive care directly to the cancer floor and was attended by a very small and dedicated group of about eight nurses.

"I needed a lot of radiation to shrink the tumor," she said. "I had to have a port for the chemo, and one of my lungs deflated due to that. It was quite a lot, very scary, but the nurses were incredible."

She overheard some of those nurses talking about Light The Night. Then her girlfriend Monica, a nurse at Providence St. Joseph's Hospital, also mentioned her involvement in the walk, and invited her to attend Light The Night with her team.

"I had no hair. I could barely make it around. I could barely walk," Mary said, "I can run threemiles now but I was pretty weak then. People told me, 'Oh Mary you look so good.' I was so moved by the people that were there to support their loved ones. It was a wonderful sensation at night with all the balloons." The following year some of Mary's girlfriends formed a team in her honor called Walking With Mary. Mary said she attended the walks but her friends did most of the organizing and fundraising, using their own fundraising page: http:teams.lightthenight.org/WalkingwithMary.

In June 2005, after two years in remission, Mary's cancer returned in two different places, her esophagus and the tip of her lung. After her second round of chemotherapy, Mary developed blood clots in her legs, and contracted pneumonia.

"I would spend seven days in the hospital and then 21 days off. I was breaking down," she said. "My son Anthony was in his senior year of high school. Luckily, he was quite smart and could handle a lot of things for himself because I was very sick."

"The chemo treatment really beat me up, and I decided I was done," she said. "My doctor asked me to come in, but I didn't want to so he convinced my husband to come in to see him. The doctor told him I had to meet someone, a doctor at City of Hope who was incredible."

Mary agreed and, after spending hours talking with her new doctor, she was convinced to try stem cell transplantation, a process where her blood cells would be collected while she was in remission and then infused after subsequent treatment involving chemotherapy.

It took months to harvest her cells for what was at the time a new clinical trial.

"I would go every day. It was similar to giving blood," Mary said. "They'd take my blood, clean the stem cells. It was very uncomfortable. I had to be there every morning by 8 a.m. and stay four hours for three weeks."

Neighbors and Mary's friends from her Light The Night team took turns driving her to the hospital. Her employer also was very supportive, Mary said, letting her work from home using a laptop computer when she felt healthy enough.

Today, Mary said she is doing well. This December will mark her third anniversary in remission since her stem cell transplant. "It gave me back my life. I would have died," she said. "It is just an amazing thing. For them (the medical team) it is a whole routine that they do every week. It totally blew my mind."

Her stem cell transplant, once a new procedure, is now more commonplace thanks to the research and support provided by donations to LLS, Mary said.

"Thank God for all the research so there's a cure for recurring lymphoma," she said. " I am fundraising to make the research possible for people like me. I still have to go in for treatment and I see the children there. Everybody is so sick. It's heartbreaking. I try not to be too bouncy."

Mary knows there is a chance her cancer could return but said her doctor told her she can't dwell on that. Instead she chooses to walk with her friends and family at Light The Night, sharing her own cancer story in the hope that soon no one else will ever have to.

You can participate in two Light The Night Walks in the Greater Los Angeles area: Sunday, Oct. 12, in Warner Center Park in Woodland Hills and Sunday, Oct. 19, in Bridgeport Park in Santa Clarita.

For more information, visit www.lightthenight.org/los.

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