Justin and Janice Brewer of Gainesville have been down this road before: hearing doctors tell them their daughter, Krista, 9, has cancer and then seeing her through treatment to fight the disease.

But since Krista has gotten a different cancer all three times, the treatment options have varied and the Brewers have had to make decisions that are far from easy.

The journey is recorded in a binder that Janice refers to as her “Krista bible”, where she keeps the information on her daughter’s illnesses and treatments.

The first time Krista was diagnosed, with a brain tumor at 4 months old, the treatment was a clinical trial, which included three different cancer drugs, taken for 2 years.

Krista came through well and was actually considered cancer-free for a year before another brain tumor was detected when she was 6 years old. This time, radiation was the preferred treatment, but it didn’t work. The tumor kept growing through the radiation treatments, so they were discontinued and Krista went back to chemo. She took that chemo only 8 months of the recommended 12 months before the complications made doctors discontinue it.

A few weeks ago, Krista was diagnosed with another cancer, this time bone cancer, and she has several spots in various parts of her body.

“Generally, when you have a sarcoma, which is a bone cancer, their idea is to go in and remove it,” Janice said. “Well, with her having so many spots and spots keep coming up, we’d basically be defeating our purpose. By the time we’d get one removed, another one would appear.”

Doctors have said the malignant fibrous histiocytoma is incurable and have given Krista three months to a year to live. They said they can buy her some time with chemotherapy.

The treatment calls for Krista to go in every 28 days and be injected with two drugs: doxorubicin and ifosamide.

The doxorubicin is administered for two days, the ifosamide for three.

“They’re only running for maybe an hour, hour and a half,” Janice said. “Then they’re through running.”

But recovering from them takes much longer.

“Doxorubicin is red,” Janice Brewer explains. “It comes in this big syringe and is bright red. It goes in red and it comes out red. They say the kids can even cry red.”

The most serious side effect of the doxorubicin is that it can cause heart problems.

“The ifosamide can cause hallucinations, hair loss, convulsions, dizziness,” Janice said. “They say some kids will sleep for 20 hours at a time. And she could have, if we hadn’t tried to keep waking her up to keep her hydrated.”

Keeping Krista hydrated during the process is important because the drug can hurt the kidneys.

The first day, it takes Krista about 6 hours to recover from the drug. The second day, it takes about 8 hours; and the third day, about 12 hours to get all the way through her system.

There is one other side effect that scares Janice.

“Krista’s worst side effect with this was she lost control of her muscles,” Janice said. “She couldn’t stand, she couldn’t walk. She couldn’t grasp a pen to write or to color. She wanted a popsicle; she couldn’t even eat a popsicle because it kept falling. Total loss of motor skills. It ripped me apart to see her like that.

“It took two of us, the whole time we were there. My mom (Valarie Blake) was there with me, to get her in and out of the bathroom, to get her in and out of bed because you’ve got this I.V. pole that has three and four bags hanging from it. Toting her, toting it, it takes an army.”

Other things prey on Janice’s mind, as well.

“You have to think: it’s toxins, it’s poisons you’re putting in your body. The nurses come in with these blue gowns on and these gloves on, just to hang the medicine. They had no flesh showing except for their face. Can you imagine what it does to your insides?” Janice asked.

“In the bathroom, they’ve got, they call ’em little hats, because you have to measure their outtake, how much they urinate throughout the day, to make sure the kidneys are flushing out okay.

“I told Mom, ‘I’m just waiting for it to melt from all the toxins in it.’”

All those toxins can take a toll on Krista’s body, so now she has to undergo multiple testing to see how her body is holding up.

Krista has to have regular echocardiograms. She will also have to have PT scans and CT scans.

For the PT scan, they put radioactive chemicals in Krista’s body so the scan can read off her metabolism (where the body is moving and burning metabolism.)

When they injected Krista, “Mom and I had to sit behind a metal wall because of the radiation,” Janice said.

“She had to lay there for 40 minutes, just as still as she could be. She slept,” Janice chuckled. “Then we get in the scan, it took probably 25 minutes. But a PT scan shows soft tissue and bone. An MRI just shows soft tissue and a CT shows bone. This one does both. So that’s the new test we have.

“Echocardiogram is for the heart, and her heart checked out normal this time.”

“So every 2 months, we’ll have those two tests done. In June, we’ll do the PT scan again. That’ll be the real key factor to see if the chemo is holding it back or if it’s working at all. We ought to know something by then,” Janice said.

This was not their only option to treat Krista.

When the diagnosis was made, the Brewers were given three options by Krista’s oncologist, Dr. Dan Bowers of Children’s Medical Center in Dallas.

The first option was the doxorubicin and ifosamide combo, administered through her port (an access apparatus designed so the patient doesn’t have to keep being stuck with a needle).

“The second option was two different drugs that were in a very experimental phase,” Janice said. Plus, Krista would have had to drink these drugs every day for two weeks.

“Getting her to take a liquid she does not like for 14 days would have been a huge fight,” Janice said knowingly. “Two of those days, she would have spent in the hospital doing nothing but testing, lab work and scans.

“The third option was brand-new, the drug was just released. There was not any education on it that we could go off of.”

The Brewers do not hide anything from Krista. They even asked her which treatment option she preferred.

“I asked her, ‘Krista, do you want your medicine through your port through an I.V. or do you want to drink it every day?’ It’s her body. She should have some say in it, too,” Janice said.

As her mother suspected, Krista didn’t want to have to drink it, so they decided on the first option.

That decision was backed by the research Dr. Bowers had done.

“He said, ‘I literally called all over the country’” to consult with other oncologists, Janice said, and the consensus was the option that the Brewers ultimately chose.

“Yes, it will be harder on her,” Janice acknowledged, “but these two drugs have been shown to help with sarcomas.

“The other two options are so experimental, I don’t think that insurance would pay for them right now. But if he said tomorrow, this is what you have to do, we would do it one way or the other.

“He said, if down the line in four months, you think it’s too hard on her, then we’re not burning any bridges, we can always go to one of the other two options.

“Just seeing the hope in the doctor’s eyes, I guess gives me hope.”

When the first tiny spot was found, the doctors thought it may have been a side effect of the radiation Krista was given for the second brain tumor.

“With radiation sometimes, you can get spots that show up, wherever the radiation was taken hardest,” Janice said. “That’s just one of the side-effects that from here on out for the rest of her life, different spots could show up and they could be from radiation.”

It’s not a given that a person receiving radiation will get the spots, Janice said.

But both she and Valarie Blake suspected it wasn’t a side effect when the tiny “pin spot” grew to “about the size of your thumb” in a few months.

Something the Brewers were told haunts them.

“They also say that radiation can cause different forms of cancer,” Janice said. “And that’s basically what they think this one is from.

“Excuse my language, but you’re damned if you do and damned if you don’t. That’s what we had to do at the time. We had no choice.”

Sometimes things work out.

Krista is quite small for her age. Although she will celebrate her 10th birthday on May 15, she looks more like a 6 or 7-year-old.

“She had not grown in almost 3 years,” Janice said. They consulted an endocrinologist and set up an appointment earlier this year to start Krista on hormone growth therapy to see if it would help her grow.

The day of their appointment, Dallas was hit with an ice storm and the appointment was cancelled.

“They (couldn’t) get me back in until April,” Janice said. “It’s already taken me 6 months to get in.

“Well, in the meantime, we find out we have this new spot.

“You know, I’m thinking if we had made that appointment, if we had started hormones...” Janice contemplated. “Most cancers thrive on the hormones. Where would we be right now?

“Everything happens for a reason.”

“Everything happens for a reason. We’re firm believers in that,” Justin said.

“We’re very firm believers in that,” Janice echoed.

“There’s a reason why this is all happening. We don’t like it,” Justin said firmly, “but there’s a reason.”

Throughout the years that they have battled Krista’s various cancers, Justin and Janice have been open, honest and upbeat about their daughter’s cancer and future. But it’s hard not to have doubts and questions.

“The first thing I can ask is why,” Janice said. “We were pretty aggravated with God for a while. But we’ve overcome that. We realize that we know He has a purpose,” she said with a catch in her voice.

“When I heard the words ‘there’s not a cure’ — you know hearing your daughter has cancer again for the third time, that’s bad enough,” Janice admitted. “But hearing that and me being so involved with the American Cancer Society... I told Justin maybe God’s purpose is for Krista to be that one child, all of the testing that they have to do on Krista, maybe that’s the one test that they need to find a cure for this. Maybe that’s her purpose.

“I can’t tell you how many experimental programs that child is in right now. They’ve got pieces of her brain from all of her surgeries that they’re doing testing on. I think probably in the next couple months, we’re going to do a genetic study. They’re trying to come up with a reason why, whether it’s genetic...”

“Right now, she’s a medical anomaly,” Just said. “Three different kinds of cancer — medically unheard of. It’s medically unheard of.”

That’s why the doctors can’t give the Brewers any hard and fast answers. Yes, they know what kind of cancer Krista has, they know the treatment options, they’ve said it’s incurable and given Krista up to a year, but the catch-phrase is “it’s Krista.”

This is the child who doctors expected to bleed to death on the table during her first surgery when she was 4 months old. She didn’t and she hasn’t been following the “textbook” since.

“Every doctor in that hospital that knows Krista will tell you that,” Janice said. “They can’t just give you a definite yes or no answer because ‘it’s Krista’,” Janice said with a laugh.

“I’d love to see all of her charts. I’d love to see all of her charts,” Janice continued. “I’d love to see how many there are.”

“I’d love to see the comments that are written on her charts,” Justin said.

Only one thing’s for sure.

“It’s been a wild ride, but we’re not giving up,” Justin said.

“She’s been a miracle twice; we’re just waiting on number three,” Janice said.

For more on Krista, visit her website at www.kristabrewer.com online.

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