By Barry Halvorson, Victoria Advocate, Texas
Jan. 28–EAST BERNARD — After years of dealing with twin daughters with cancer and associated financial problems, Monica Kubena is still bowled over at living a life most people would call normal.
“Never in a million years did I think it could be this way,” she said. “I still can’t get totally comfortable with normal and there is still the anxiety that something might happen. A year ago we were in dire straits both in terms of money and emotions. The whole family was so weary and there was always the fear of what was going to happen next. I always had hopes of having a normal life. To really be able to experience normal, was something I never thought would be possible.”
But as it turns out, it is possible and happened when “ABC Extreme Makeover: Home Edition” stepped into the Kubena family’s lives.
The plight of the family’s two youngest members, Tara and Sara, brought the family to the attention of the show, which arranges to build homes for worthy causes.
Both Tara and Sara, now 8, have been treated for cancer since age 4. At the time the home was being built, Tara had just completed a bone marrow transplant while the family was dreading that Sara’s cancer would return. Throughout their history, symptoms and problems experienced by Tara seemed to repeat themselves with Sara about five months later. The family has dodged that problem thus far with Tara’s transplant still showing 100 percent success, while Sara has remained in good health. A CLEAN ENVIRONMENT
Monica attributes the improved health of her daughters, and whole family, to living in the more purified environment of their new home, which replaced the singlewide manufactured home they had been living in on property shared with family. The new home is equipped with special air filtration systems and specially designed windows, curtains and carpeting to help reduce dust and other contaminants.
“Neither of the girls have had to go to the hospital as the result of a fever since we moved in,” Monica said. “Tara did catch a virus when we first got the house but that was our fault. We didn’t think about the viruses that people might bring into the house. We were still ‘high’ about moving into the home. It was like we were floating. It was so surreal that we didn’t think of the hazards. When Tara did get sick, I scrubbed everything with disinfectant and adopted a strict policy about who could come over. We’ve been able to ease up a little bit in recent months as her health has improved.”
When she was able to first return home from The University of Texas M.D. Anderson Cancer Center in Houston, Tara was forced to live at home and was visited daily by a tutor. She now attends school with her sister in East Bernard.
“They don’t let us sit together,” Sara complained. “They probably think we’re going to do something sneaky. But we do get to play together and we are in the same class.”
And while there was one brief moment of concern when Monica said that Sara’s blood count went haywire, her other twin is doing well medically.
“Actually, if all things stay the same, she’ll become part of the long-term survivor clinic,” Mom said. “We’re always going to have to worry about the girls’ health, but it is a good sign for long-term recovery.” Cuddling ok
Even as he relishes the size of his new home, John Kubena happily lets one daughter after another take a turn at sitting on his lap.
“There is so much more space than we had in the trailer where we were on top of each other,” he said. “Everyone can spread out because they have their own room and we aren’t running into each other. We still pile up on each other occasionally, but it’s because we choose to rather than it being a necessity.”
The added room has also helped the marriage, John said. When the house was built, John and Monica were surprised with a master bedroom suite rather than just a room.
“Having some space to ourselves has helped,” he said. “It’s allowed us a place where we can relax together. When the girls were sick and Monica was staying in Houston with them and I was here taking care of Kelly (the couple’s 10-year-old daughter) and worrying about the bills, things did occasionally get tense. But now we have a place we can get away to in our own home, discuss things calmly and do what is necessary to renew our marriage. It’s made a big change for the better.”
The extra space has also allowed the family to grow by one more. Bradley, 18, John’s son, is moving in with them on a permanent basis. The new home was an opportunity he just couldn’t pass up.
“I wanted to be with my dad,” he said. “Before, when Sara and Tara were in the hospital I couldn’t see him much and there was no room in the old trailer. It always seemed there was something coming up so we didn’t get to spend time together. I’m a junior this year and the plan is to stay until I graduate from high school.”
In addition to getting better acquainted with his dad, Bradley admits that having younger sisters to “torture” has been a change from living with his mom and two brothers.
“There are times when it’s inconvenient and you can’t walk around in your boxers like when it’s all guys,” he said. “And they like to scream when they get excited. But it’s been worth it getting to know them. Besides they like to be teased.” The party’s started
While they took possession of the house on Jan. 17, 2006, the family actually spent their first night in the house on Jan. 25. But it was awhile before the house became a home.
“It took a couple of months for us to move most of our own stuff in,” Monica said. “And for the first several weeks we were overly careful because it was all so new and nice and everything had been professionally decorated. But we’re more used to it now.”
And like a college party, the relaxation started with the first breakage, in this case a small gumball machine. Since then, the magnets and drawings have gone up on the refrigerator, family knick-knacks have found their places on shelves and the magazines, newspapers and other signs that give a home that lived- in look have settled in.
But while the gumball machine was a small break, the first big break involved Monica, or her shoulder to be exact.
“The family was out back playing football and I wanted to get it on videotape,” she said. “So I went in and got the camera and was checking if the battery was low when I stepped off the porch and crashed. I’m still working on rehabilitation.” Keeping in touch
While it’s been a year, the family has kept in touch with the producers of “Extreme Makeover” and representatives of Royce Builders, which served as the contractors for the project.
“The people from Royce have been just fantastic,” Monica said. “Any problems we’ve come across, they come out to correct. We can’t say enough about them. We’re also constantly hearing new stories about the work that went into the house and different people that helped build it. We want to thank everyone that helped but you can’t because a lot of them don’t want credit for it and don’t mention their part in the building. So we just always are thanking everyone.”
The family has been invited to this year’s Royce Builders Company banquet. During that banquet, the family will be presenting the firm with a plaque they have made up in appreciation for their new home.
The Kubenas also got to experience a ‘family reunion’ with many of the cast members and producers who worked on their home during episode that was shown on television during a build in Austin.
“The producers invited us first to work on a show they were taping in Hondo, but Tara hadn’t been released by her doctors to do those kinds of things,” Monica said. “So instead a couple months later we got to work on a house in Austin. We got to see what it was like from the other end. The chaos that is involved on the other side that was kept from us on our house and how much hard work it takes. We appreciate what we have even more now.”
It also reminded the family of the day they moved into their home.
“It was brought back to the forefront of our memory,” Monica said. “It was very nostalgic and there were a lot of warm memories. A lot of people who worked on our show were there and a lot of tears and hugs were exchanged.”
Being on the show also has opened up the family to several new experiences. Through the exposure they received, they were invited to Washington, D.C., this summer for Gold Ribbon Week, a week of lobbying the U.S. Congress for more funding for juvenile cancer causes.
“Being offered the chance to help raise funds for research was something we never would have had the chance to do without the show,” she said. “The fact that any child has to suffer from cancer is something that breaks my heart and we hope to always be able to use the attention we received from the show to help. And we got a vacation trip to Washington that we never would have been able to afford.” The future is now
As part of their participation with “Extreme Makeover,” Royce Builders has been helping to maintain the home and Reliant Energy agreed to provide the family with free utilities for a year. With that year now winding down, both John and Monica realize the burden of keeping things going falls on their shoulders. But it is a responsibility they’ve been preparing for since moving in a year ago.
“We don’t have a house note anymore,” John said. “And while the bigger house means bigger utility bills, I think we can still make it. I’ve been tracking the bills and our old utility bill and house payment is about the same as the new utility bills will be. We put a lot of the money people donated to us into certificates of deposit so it hasn’t been spent because we knew those bills were coming.”
But even with the saving, there has been a little more money for a few luxuries that weren’t available in the past.
“There are those little things that people take for granted,” Monica said. “Like buying the storybooks they sell through the school. Or being able to go to football games as a family. In the past, John would go watch Bradley play but he’d go alone because we could only afford one ticket. This year we all could go to games. We get to do things that normal families do together. We get to be normal. And it amazes me to think we can.”
Copyright (c) 2007, Victoria Advocate, Texas
Distributed by McClatchy-Tribune Business News.
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