Friday, August 22, 2008

Sacrifices made in the name of love...and well worth it!

When she falls, she falls utterly.

She spills to the floor like a marionette, her strings suddenly severed.

Brooke Bee is a 3-year-old Phoenix girl with epilepsy so difficult to manage that her family sacrificed everything in a desperate attempt to make her healthy.

Her father quit his job. His girlfriend, who helps raise her, quit hers, too.

They went through their savings and borrowed until their 401(k)s were bare.

They sold their favorite possessions on eBay to pay for gas and groceries.

Brooke's seizures were so frequent - 50, 70, 80 times a day - that they attached her to a harness with a leash so that when she fell they could catch her before she hit the ground.

The leash became the embodiment of what it can be like to love a child who is so sick. You give up everything. You are always attached. You can never let go.

"I'm losing everything I had," Brooke's father, Brian, said. "It's not because of my daughter. It's because of what happened to her. It's all just material. It's replaceable. She's not."

'Devastating' seizures

One year ago, Brooke was in perfect health. She was fast and funny. She loved princesses. She could sing the alphabet.

Then, without warning, she had a seizure. Every muscle in Brooke's body contracted. She lost consciousness.

Then she had more.

Brian, who was never married to Brooke's mother and has sole custody, was horrified the first time he saw her seizing.

"It's heart-wrenching. It freaks you out," Brian said. "I just wanted to know why it was happening."
When a brain is functioning normally, millions of tiny electrical charges pass between nerve cells and to all parts of the body.

When someone has epilepsy, the pattern is interrupted by intense bursts of electrical energy.
Usually, these disruptions happen in one area of the brain.

In Brooke's case, nerve cells throughout the entire brain crackle with energy. She collapses because her brain overloads. "They are a devastating type of seizure," said Dr. Korwyn Williams, Brooke's epileptologist at Phoenix Children's Hospital.

Brooke spent October and November at Phoenix Children's as doctors tried to help her. They were hoping to control her seizures with medicine.

It wasn't working.

A harness and a leash

Epilepsy and seizures affect more than 3 million Americans of all ages, according to the Epilepsy Foundation.

More than 6,000 children in Arizona have the disease. In some cases, the cause is tumors or brain injuries. But in 70 percent of new cases, no cause is apparent.

Finding the right combination of drugs to control seizures is not easy. The drugs react to each other, and the body reacts to each drug.

So when Brooke went home, around Thanksgiving, her treatment was still a work in progress.

The most immediate problem for Brian and his girlfriend, Jessie Essenburg, was that she just kept collapsing. She was cutting herself on corners of tables, banging her head on the ground, chipping her teeth.

When Brian and Jessie would grab her arm to catch her, they were hurting her shoulder.

Reluctantly, they fitted her with the harness and the leash.

"I don't like it. It's a leash," Brian said. "But it works. And if it helps Brooke, then so be it."

Months after her diagnosis, Brooke's seizures were becoming more frequent.

In June, when asked if Brooke was going to get better, Dr. Williams answered simply. "I don't know."

'Like she had been shot'

Brooke's illness began to take over Brian's and Jessie's lives.

After a seizure, one of them would hold Brooke while she recovered. But the recoveries were taking longer.

She would rest in their arms with a vacant stare.

Some days a seizure blended into the recovery time, which blended into the next seizure.
"Look at Daddy, Brookie. Hey, hey, baby girl," Brian would say inches from her face. "You gotta snap out of it, baby."

Corners were taped with cardboard. Edges were covered on tables. A piece of plywood was rigged between the banisters at the top of the stairs to keep her from falling down them.

"She's a direct danger to herself without constant supervision," Brian said. "It's 24 hours. Every day."

Of all the bad days, and there were plenty, one stands out.

Brian and his father were with Brooke in front of their home.

She had not had a seizure for hours, so they removed her leash. Brooke was feeling good and acting like a little girl.

"She was running to me," Brian said, looking at the ground. "She was 10 or 15 feet away, and she was smiling and laughing and saying 'Daddy.' "

Brian opened his arms.

"Then she was just gone. It looked like she had been shot."

Brooke fell hard, face-first, onto the street. Her front teeth broke in half.

"That was, I don't know why, the saddest day of my life."

At this point, Brooke was taking Lamictal, Depakote and Topamax to control her seizures.
But she was increasingly listless and frequently confused.

The simple act of getting her to take her medicine was becoming a two-person job.

Brian and Jessie realized that they could not work and take care of Brooke.

Brian, 23, was a claims adjustor for State Farm Insurance.

Jessie, 22, was a financial-aid adviser at the University of Phoenix.

"It's not like we were working at Jack in the Box," Brian said. "I was on my way. This was my career."

First Brian quit his job, then Jessie quit hers. "I love her like she was my own kid," Jessie said.

In a matter of months, they went from a young couple with two good jobs and a healthy little girl to a couple with no professional future and no income.

No matter how much they tried, hoped or wished, Brooke was not getting better. She was getting worse.

Running out of money

Brian and Jessie were now facing new pressures.

They were feeling isolated in their home with just each other and Brooke.

They were drifting apart from their friends because they had so little time and even less money.

They also began to realize that when they were spending all of their time and energy trying to make Brooke well, it was too easy to forget that she was still a little girl.

"We need to also raise her; she's a kid," Brian said. "You can't forget that with all of this, you can't."
The couple also were facing a very practical problem. They were running out of money.

They had a few years of savings in their 401(k)s, but once they tapped that money, it went fairly quickly.

Gradually, then suddenly, they needed money to pay for groceries and gas.

Brian sold a collection of guns that he had started with his father. He also had a wall of guitars. He sold those online, too.

"You get emotionally attached to them," Brian said. "I sold my Martin acoustic. That was a great guitar."

Soon the couple were running out of things to sell.

"All through eBay," Brian said. "It's just stuff. I loved it. But what are you going to do? Now it's all gone."

Jessie's parents helped. They mailed dresses for Brooke and small amounts of cash when they could.

Brian's father provided a place to stay and would leave cash for Brian and Jessie periodically.
Brian's mother also helped by sometimes taking Brooke on weekends.

"Everybody throws down to help," Brian said. "It's a community. She's a special girl."

Through all of it, Brooke's condition did not improve.

Her condition, or perhaps her medicine, was giving her headaches that left her crying or, worse, just whimpering.

In mid-June, Dr. Williams presented Brian and Jessie a series of difficult options.

They could think about changing Brooke's diet to one very high in fats but with almost zero carbohydrates. The diet is radical and needs to be monitored full time, but there was a chance it would work.

They could change Brooke's medicines, but some of the options came with the risk of dangerous reactions.

The last option was brain surgery, which would remove the connections between the two hemispheres of Brooke's brain.

Brian and Jessie knew Brooke was nearing her limits.

So were they.

Looking for hope

The lack of progress was becoming overwhelming.

Brian and Jessie were tired and frustrated.

"This has got to get better," Brian said one afternoon with Brooke asleep on his lap. "This has got to get better. This has got to get better."

The couple decided to change Brooke's diet, but a dietitian would not be able to meet with them for weeks.

Dr. Williams continued to adjust Brooke's medications, looking for the elusive combination of drugs that would bring her seizures under control.

He had seen some initial success when Brooke started taking Lamictal. It was short-lived, but it gave him some hope.

Finally, something seemed to click.

On July 1, Brooke had just one seizure.

In the course of one day, she began to look more animated and involved. Her legs grew steady.
On July 2, Jessie and Brian quietly made a decision. That morning, they did not put on Brooke's leash.

She didn't need it.

There was not a long talk about it, Brian said. It just felt like the right decision.

"It was so great. I can't explain the feeling," Jessie said. "We went to the pet store, and she ran around looking at all the animals. It sounds small, but it was such a big deal. She was a little girl."
With an illness like this, it's hard to predict the future.

"She could easily relapse; we know that," Jessie said. "You just completely embrace the moment. I could explode from happiness."

On Tuesday of this past week, Brian began work again, as a claims adjustor at an automobile-insurance company.

Jessie will stay home with Brooke until she has been seizure-free long enough to be able to attend a day care or preschool.

Jessie already is allowing herself to think about a future when Brooke is healthy.

"Ten years from now, I promise you this," she said: "I'll think every single sacrifice was well worth it."
Brooke has started acting like a little girl.

She picks her own clothes. She picks her own movies. She asks lots of questions.

If she likes a person, she gives him a kiss - not on the cheek but on the lips. Then she laughs.

As this girl has re-emerged, Brian has realized that what he missed most of all when Brooke was sick, was Brooke.

"I was with her all the time - like, all the time - but I missed her," Brian said. "She stopped being the Brooke I knew."


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