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Elsa Barbosa plans for her family's future as she tries to beat malignant brain tumors

by: CHASE ALLGOOD - Elsa Barbosa (third left) sits in her current home with her husband and five children, where she hopes they can stay if her treatment is unsuccessful.

Today, Elsa Sandoval Barbosa got up in the morning just like she did four months ago. But now, instead of getting ready for work, the Hillsboro mother of five gets ready to go the hospital.

Some days she feels almost normal, and on others she feels her sickness in her core. She doesn’t worry so much about what she has to get done on any particular day, because a lot of the time she can’t remember. Her worries about cleaning the house are displaced with the fear her family won’t have a place to stay if something happens to her.

Challenges that arise from raising her children take a back seat now, because all she wants is to see them grow up. She wants to be there to throw “quinceañera” parties for her daughters’ 15th birthdays. She wants to help them graduate from high school, see who they pick for their spouses and know what they choose for their careers.

Elsa, only 38, has brain cancer.

Now that her future sits on shaky ground, she wishes she would have taken family vacations to the Great Wolf Lodge in Washington or to Disneyland in southern California — trips she kept putting off for another year. But she couldn't have predicted she would start having headaches in September, and she didn’t know that what her doctors thought were migraines would turn out to be symptoms of glioblastoma multiforme, the most common form of malignant brain tumors in humans.

When doctors removed 90 percent of one of Elsa’s two tumors in December — the second they deemed inoperable — the treatment plan was just beginning. Now she starts every day with chemotherapy and every weekday with radiation treatments.

“Living like this is hard,” she said.

The woman who made a name for herself in Cornelius, working to buoy the health of children at the city's nonprofit Centro Cultural, now has to look after herself.

Cause is unknown

Doctors say the tumors could have been growing for five to 10 years before Elsa went into the emergency room for a CAT scan because she knew something wasn’t right. Now they tell her six months to three years is commonly how long people diagnosed with GBM have left to live. An MRI in the next few weeks will reveal the effectiveness of the treatment so far.

Jeannie Louie, one of Elsa's doctors at the Oregon Clinic at Providence St. Vincent Medical Center, said GBM accounts for 10 to 15 percent of all brain tumors but warning signs are not always pronounced. Those with prolonged headaches that don't resolve should consult a doctor.

Early in 2012, Elsa started noticing vision problems, memory loss and stuttered speech, but she ignored the signs. The cause of the tumors is unknown, but by the time she became aware of the symptoms, she was already in the advanced stages of the disease, doctors said.

Before this new life filled with daily cancer treatments and worries she never thought she’d have at such a young age, Elsa worked at Centro Cultural in Cornelius as the nonprofit’s healthy kids coordinator. She drove her kids to school, volunteered as the events coordinator for the Parent Teacher Organization at her children's elementary school, barbecued in her back yard and enjoyed going to the movies and area water parks with her family.

In addition to helping local families with their health, Elsa helped organize Thanksgiving dinner and a Christmas toy and food drive at Centro. She still does the best she can to help people with the paperwork she used to hand out because she feels a strong connection to the people and community she worked in, and to Forest Grove, where she was reared and educated.

She misses her work. Yet because of memory loss, fatigue, confusion and vision problems — side effects of the tumors and treatments — Elsa can no longer work, drive or be left alone in her Hillsboro home with her kids, who are 18, 11, nine, five and three years old.

“The hardest thing is to get into this new routine and not being able to do the same things for my kids,” she said. “They don’t show it, but I think it’s on their minds — what’s to come.”

The radiation makes her tired, so she has to nap during the day and her husband takes the kids to school. Elsa’s brother, Hector Sandoval, and sister-in-law, Katie Clark, take Elsa to her doctors’ appointments and help out with the kids.

“It’s hard for her because she will have visitors and she won’t remember who they are or that they’ve stopped by,” Katie said. “People she’s known for a long time — she knows their faces but can’t remember their names.”

Elsa also often forgets appointments and what day of the week it is. She relies on others to keep her grounded.

A home for her family

There are also financial concerns that come from suddenly becoming a one-income family. “The fact that now there is (less) money coming in is really hard,” Elsa said. Her husband, Beto, quit his job at Veritable Quandary, a Portland restaurant, to take care of Elsa and the children.

“My dream is to have a home for my kids and my husband,” Elsa said. “I want to get healthy, be there for my family and go back to work.”

Katie stopped the car on the way home from radiation last week because Elsa wanted to check out a house for sale.

Beto wants the chance to take Elsa to Mexico to meet his mother for the first time.

Elsa is trying to secure disability payments and rent assistance, but so far to no avail.

“She has always been the one everyone goes to — friends, family, the community,” Katie said.

“Now I need help from people,” Beto added.

Yet even in the midst of her hardships, Elsa said she has “changed in a good way.”

“I used to say, ‘Why me?’ And I would worry about all the things I needed to get done, but now I just keep going,” she said. “I’ve gotten closer to God and have more faith than I used to. My whole way of thinking has changed.”

Elsa and Beto said they have been noticing the positive lately. “I am not nauseous like they said I would be and I haven’t lost all of my hair yet,” she noted.

Beto believes good things come to those with faith.

“This could happen to anybody and they could not even know it,” Elsa said. “Don’t take life for granted. Spend every minute you can with your family and loved ones. Don’t get mad over the little things. A lot of times it’s about work, work, work and money, money, money, but that won’t buy you life.

“Live day by day. I want to take those family trips. I want to get better. It could happen.”

How you can help

Friends of the Elsa Barbosa family are coming up with ways for people to help. Here are a few examples:

• T-shirts are for sale for $15 online at companycasuals.com/friendsofelsa. All proceeds go to supporting the Barbosa family.

• Donations are being accepted at U.S. Bank in an account called the Elsa Barbosa Fund.

• There will be a fundraiser dinner with live music at Little Italy, 1515 N. Adair St. in Cornelius, at 7 p.m. Saturday, Feb. 9. There is a $5 cover charge and donations are encouraged.

• Feb. 23, there will be a fundraiser Valentine's Dance at Lindo Michoacan Mexican Grill, 140 S.W. Oak St. in Hillsboro, at 7 p.m.

• There will be a garage sale at Centro Cultural, 1174 N. Adair St. in Cornelius, on March 2 from noon to 5 p.m. Donations to the sale will be accepted from 10 a.m. to noon.

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