Families with Sick Children Struggle to be Normal

March 17--It came as news none of them were expecting.

Dominic Flores of Hazleton seemed a healthy 8-year-old boy until the day he had a seizure. His family suffered an unexpected blow when doctors told them he had a serious degenerative brain disorder.

A newborn Matthew Sloan Walker was sent home from the hospital with a clean bill of health. But his mother, Freeland native Cynthia (Hadzick) Walker, felt something wasn't right with her son. Her instinct was correct. Matthew was born with a disorder that causes mental retardation and epilepsy.

Betsy Walser of Drums had barely enough time to say goodbye to her 12-year-old son, Michael Balliet. He was in perfect health one week and in hospice care the next. Doctors said it was a cancerous brain tumor.

And while she is in good health now, Amanda Kripp's parents had trouble accepting that their then-12-year-old daughter had cancer.

These families spoke to the Standard-Speaker about how their lives have -- or haven't -- changed since they were dealt the diagnoses.

Mom on a mission

One Sunday last October, Michael Balliet complained of dizziness.

Eight days later, the 12-year-old boy was dead.

"I will always wonder why. Why did he get cancer?" asked his mother, Elizabeth "Betsy" Walser of Drums.

With so little research done on Diffuse Intrinsic Pontine Glioma (DIPG) -- the brain tumor that led to Michael's sudden and unexpected death -- Betsy may never get any answers.

She intends to fight for funding to study DIPG and other pediatric cancers and recently started a tribute fund for Michael for that reason at The Cure Starts Now Foundation.

Walser and her daughter, Patricia "Patti" Balliet, 14, also are selling T-shirts and bracelets to benefit the fund -- and to remember the boy they described as energetic, happy, loving and compassionate.

Betsy unpacked a box of the fundraiser shirts in her living room, where two posterboard-size frames filled with snapshots of Michael hung on a wall. The montages were displayed at Michael's funeral. Betsy can't take them down. Not yet, she said apologetically, as she sorted shirts by size.

"It's going to take time," she said.

Working on the fundraiser, she said, has given her some direction.

"I just needed to do something. In a way it helps me feel better," she said, "but in a way it hurts, because to think of things 'in memory' of my child is painful."

The shirts are red -- Michael's favorite color -- and say "Destroy DIPG for Michael."

According to information from the American Brain Tumor Association, DIPG tumors are inoperable. The tumors are not a solid mass, but a tangle that wraps around healthy nerves, cells and the brain stem.

In Michael's case, there were no warning signs. His family saw no changes in his behavior. His sixth-grade teachers at Drums Elementary/Middle School also noticed nothing out of the ordinary.

The dizziness set in quickly. Michael, who, just days before enjoyed playing outside and running around with his buddies, was having trouble navigating.

Betsy took him to his pediatrician, who asked Michael to walk a straight line and touch his nose with his eyes closed. He couldn't do either task.

He was sent to Geisinger Wyoming Valley Medical Center for tests. Testing lasted the length of the day -- a Monday -- and Betsy knew something was "really" wrong, she said.

Doctors told her Michael had a brain tumor. A neurosurgeon and pediatric oncologist explained it wasn't any kind of tumor, but DIPG, and without treatment Michael would die within two months. With treatment, he'd likely live another nine months.

"Most of the kids who get this type of brain cancer do not live past two years" after diagnosis, she said.

By Wednesday that week, Michael needed a wheelchair, and by Friday, he could barely talk.

A doctor told Betsy that Michael needed hospice care.

"She told us that they did their testing and at this point, there was nothing they could do" to save his life, Betsy said.

Michael died on a Saturday -- Oct. 29, 2012 -- the day his first round of treatment was to start.

The treatment was a clinical trial and Betsy still wonders if it could have helped.

In the week Michael was sick, she had little time to research DIPG or its treatments. She has since learned that no advancements have been made in treating DIPG for three decades.

"Seeing these other kids who have gone through treatment, and have survived for months to a year, they go through hell," Betsy said. "It's one experimental drug after another."

Patients lose their ability to walk and talk. They eventually can no longer see, eat or breathe. But through it all, they remain cognizant -- and realize that their health is in serious decline.

Through her research, Betsy found that research for DIPG -- and other pediatric cancers -- receive very little funding.

"Sandy Hook was horrible with all those children killed. But here is this monster cancer that's out there killing thousands of children a year in this country and there is no outcry," she said.

Michael's passing continues to be difficult for Betsy and Patti.

"I don't have anyone to play with," said Patti, as she broke into sobs.

"She misses him. We both miss him terribly," Betsy said, as she circled an arm around the girl. "I feel like a piece of my heart has been ripped away since Michael died and that there is a huge hole in my chest."

With Patti's encouragement, Betsy joined a gym and the two frequently visit together. It's therapeutic for both.

"I know this has been a life-changing event for Patti and me and I need to make a new path. Where it leads to I don't know. Just taking one step at a time, one day at a time," Betsy said.

Patti and her uncle, Stuart Walser of Drums, are working on a memorial for Michael at Drums Elementary/Middle School, where Patti is in eighth grade. Patti's design includes a circle of burning bushes, chosen for the red they display in autumn. The engraved memorial will be dedicated May 16, the same day the school will hold a "Dress Down Day" to raise money for Michael's tribute fund.

A portion of the proceeds from the April 6 Little Cougars Wrestling Tournament at Hazleton Area High School will be donated to the fund. A fundraiser will also be held April 26 and 27 from 1 to 10 p.m. both days at the Sweet Frog, 2258 Highland Park Blvd., Wilkes-Barre. The frozen yogurt shop will donate 25 percent of the sales from those who present a coupon available on the Facebook page, Destroy DIPG for Michael.

To donate to the tribute fund, visit www.thecurestartsnow.org, click on the "Heroes" tab and Michael's name. For information on upcoming events, or to order a T-shirt or bracelet, visit the Facebook page "Destroy DIPG for Michael" or email Betsy at enw21@ptd.net.

"I had no idea what DIPG was until it affected Michael. I'll never forget it now," Betsy said.

Good news, bad news

To his family, he's just Dominic.

He's the doe-eyed 11-year old who loves watching cartoons and laughs when his mother asks him how many girlfriends he has on any given day.

Dominic Flores has been fighting a degenerative brain disorder for the past five years, said his mother, Yilma Flores of Hazleton. And although adrenoleukodystrophy (ALD) has changed him, his family is doing the best to keep life as normal as possible.

"We're trying not to change anything. We don't want him to think in his mind he's less than what he was," Yilma said.

But above all, she said, the family needs to recognize it will take time -- and patience -- to see Dominic through his battle.

Yilma and her husband, Carlos Flores, learned Dominic was sick after he had a seizure in 2008. Doctors linked the seizure to ALD, a disease that deteriorates the sheath that covers the nerves in the brain. There is no cure for ALD but if it's caught early enough, surgeries and medication can slow its progression, doctors told the couple.

According to information from the Adrenoleukodystrophy Foundation, those with untreated ALD usually don't live to celebrate a 12th birthday.

Soon after Dominic's seizure, doctors ordered a stem cell transplant at the University of Minnesota Amplatz Children's Hospital in Minneapolis in hopes of stunting the disease. It wasn't successful, and neither was a second transplant. In between surgeries, Dominic was given rounds of chemotherapy and radiation to weaken his immune system and increase the surgery's success.

A third stem cell transplant worked, but after months in the hospital, Dominic stopped eating. He stopped talking. Medical professionals linked his regression to the trauma of being confined to a hospital room and away from home for almost a year, Yilma said.

Doctors warned her that Dominic might never be the same.

"One neurologist out there in Minneapolis told me he wouldn't talk or eat or be able to do anything," Yilma recalled.

She didn't buy the prediction.

"I told him, 'I respect your work but you can't tell me what my son can and cannot do,'" Yilma recalled. "'I know my son is stubborn and hard-headed' -- I've always said that since he was little -- 'but you cannot tell me what he can or cannot do.'"

Soon after returning from Minneapolis in 2009, Dominic had a seizure that weakened one side of his body. Other than that episode, Yilma said she is happy with his progress.

For example, doctors removed a feeding tube after Dominic began eating again. He returned to school at Hazleton Elementary/Middle School in 2011, although he needs a nurse by his side.

"They say he is improving. He is doing good with the speeches and the therapies. He still remembers all his stuff," Yilma said. "He remembers faces. He remembers people."

And while he doesn't speak in full sentences, Yilma said he likes to sing along to songs and enjoys when someone reads him a story.

Yilma reported that an August MRI showed Dominic's ALD had not progressed. It also pointed to some cell regeneration.

"That's a good thing," Yilma noted.

With the happy news came a setback. Soon after his MRI, doctors diagnosed Dominic with two types of epilepsy. He needs medication to keep the nonviolent seizures at bay. It means his family must keep a close watch on him.

It also means Yilma's return to work might not happen.

"With his (medical) schedule and if he has a seizure in school, I have to pick him up," Yilma said. "I haven't been able to work since he was diagnosed.

"After he came back (from Minneapolis), I've been trying to go back to work, but because of going to Hershey (Penn State Hershey Medical Center), his therapies, and if he has a seizure at school, I need to be there."

Potential employers have told her they can't "accommodate her and her personal issues," she said.

"It's not a personal issue, it's my son's health," she said.

Dominic's father, Carlos, is the sole financial support.

"It can be tight (financially), but we manage," she said, noting that Dominic has medical insurance.

Yilma credited her daughters, Kimberly Flores, 16, and Ashley Flores, 12, for their help and understanding with Dominic. Both girls are honor students in the Hazleton Area School District.

"Because of what he has, I try to have them not change their lifestyles," she said. "I try to keep everything back to normal. We take him everywhere. We take him shopping, to his sister's basketball games."

Yilma hopes to become an advocate for ALD testing. She explained that the earliest ALD signs are often diagnosed as developmental or behavioral problems. It may have been the case for Dominic, who was diagnosed with attention deficit hyperactivity disorder years ago. It could've been ALD, she said.

She plans to contact state lawmakers to ask their support in making ALD screening mandatory for newborns. The state of Louisiana will soon mandate the screening.

While she wants to help others, said she doesn't feel cheated by Dominic's disorder.

"He is so wonderful and he has taught me so much about life and I am still learning," she said.

Dominic will turn 12 on Saturday and Yilma will continue to look for progress.

"Even if it's a minor thing like he bends down and starts untying his shoelaces -- I'm happy with that. I don't ask for much," she said. "It's going to take time -- a lot of time and patience. Patience is the biggest thing I have."

A second rare disease

Matthew Sloan Walker has the kind of smile that lights up a room, said his uncle, Michael Hadzick of Freeland.

"He just draws you in. He's very charming," Hadzick said.

And while the smile doesn't give it away, Matthew, 7, was born with a rare brain disorder that causes mental retardation and epilepsy. Subcortical band heterotopia affects only 35 males in the world, Hadzick said.

Because of the disorder, Matthew can't talk. He can't walk, although thanks to rigorous therapy, he is able to move his legs while in a walker.

"He'll never be able to feed himself or do all those basic life skills," said Hadzick, whose efforts to raise awareness of rare diseases helped establish National Rare Disease Day, which is celebrated each Feb. 28.

Matthew was diagnosed with a second rare disease late last year, Hadzick said.

Matthew's parents Cynthia Hadzick-Walker, a Freeland native, and Jonathan Walker of Lake Mary, Fla., began noticing that their son would be going about his usual activities when his head would suddenly drop.

Tests revealed Lennox-Gastaut Syndrome, an extremely rare disorder that causes seizures.

"Matthew has had seizures before, but they were controlled," Hadzick said. The "new" seizures are not violent but can be easily missed if he's not watched constantly.

"It was a blow to the family," Hadzick said of the diagnosis.

Neither disorder is curable and Matthew likely will need assistance for the rest of his life.

And like Matthew's brain disorder, insurance companies consider his "latest" diagnosis so rare that they won't pay for many of the therapies and treatments that could help him.

"They're not going to pay millions of dollars to research a disease that only affects 35 children. That's what we're up against," said Hadzick, who has become an advocate for rare disease research.

Despite the hardships, Hadzick said his sister, a pediatric nurse practitioner, wants life to be as normal as possible for the family, including children, Morgan, 10, and Adam, 5.

"My sister is someone who won't let anything knock her down," Hadzick said. "Even though with Matthew things can be tough, she still gives her whole family the life they need and deserve."

The family visits the beach during the summer and travels to Freeland to visit family. Matthew loves the train at Knoebels amusement park and enjoys being in the water.

"We do things and he comes right along with us. I think that contributes to his happiness," Hadzick said.

Despite his medical history, Cynthia and her husband called Matthew "perfect."

"Our family has come to realize that children with special needs are spiritual catalysts. They challenge and sometimes force us to look at ourselves. They help us accept our own imperfections and the imperfections of others," the couple posted on the Miracle4Matthew website, where Hadzick shares Matthew's story. "In that sense, Matthew is not damaged in the least. He is perfect as he is. Along with other children with disabilities, he bears witness to the diversity of the human condition and the resilience of our collective spirit."

"We are fortunate that Matthew is in our life," Hadzick added. "We wouldn't trade that in for anything. It's amazing what a little child can teach you about yourself."

Hadzick said it's "tough" knowing that his nephew is ill. He said he'll continue to fight for rare disease research and will continue to maintain his website, Miracle4Matthew.com, on which he lists fundraisers for Matthew and other events. A congressional aide found Matthew's story, which was later presented on Capitol Hill during health care reform discussions.

Matthew's story -- shared by his uncle -- also helped establish National Rare Disease Day and has put Hadzick in touch with others across the nation who are facing similar issues.

"The way I see it, if you work, or even if you don't work, you shouldn't have to struggle to pay for what a child needs," Hadzick said. "My sister and I will fight. We have and we've done it. We don't want to go down without a fight."

Hadzick may be reached at 215-837-1758 or mhadzick@yahoo.com.

No hard feelings

Amanda Kripp remembers lying in a hospital bed and hearing her mother's screams echoing in a distant hallway.

"I didn't know what was going on at the time," Amanda said.

Fourteen years later, Amanda knows what it was: the moment doctors told Kay Kripp that her 12-year-old daughter had cancer.

Amanda, now 26, heard her mother's cries as she was recuperating from what was supposed to be exploratory surgery. Doctors ended up discovering -- and removing -- a tumor from her large intestine. A biopsy revealed it was non-Hodgkins lymphoma.

"I had flu symptoms and I was stick to my stomach," Amanda said, recalling the days leading up to the surgery and diagnosis. Doctors ran tests but found nothing out of the ordinary.

A family member, who was a nurse, recommended exploratory surgery. When doctors told Kay and Amanda's father, Mike Kripp, of Hazleton, that the girl had cancer, neither broke the news to her.

"Nobody told me for a while. I overheard my dad calling family members. I heard him tell them that I was sick," Amanda said.

It wasn't until she arrived at Hershey Medical Center a few days later for chemotherapy treatments that they told her.

"I knew it was scary but I had no idea what I was about to go through. I had no idea what was in store for me because I didn't know anybody who had cancer at that point," she said.

She began chemotherapy just after Thanksgiving 1997. It was administered intravenously in 12-hour intervals over the course of three months.

"I was very sick the whole time," Amanda said.

She was homesick, too, and only able to return to her house once for a few hours on Christmas Day.

"My dad had to beg the doctors to let me go home," she said.

Back at the hospital, doctors encouraged her to meet other young patients receiving cancer treatments. Amanda felt it would be too much to handle, so she declined.

"I just wanted to stay in my room," she said.

Amanda missed months of sixth-grade classes at Arthur Street Elementary School but was able to keep up with her studies.

While she was gone, classmates held fundraisers to help her family pay for expenses not covered by insurance.

And when she returned, her hair gone from chemotherapy, the school held "Hat Day."

"So I wasn't the only person with a hat on," she explained. "I didn't wear a wig at all."

Under doctor's orders, she couldn't have lunch with other students and couldn't take gym classes until her immune system was back on track.

Her medical appointments continued, and she was regularly checked to see whether the cancer had returned.

"I would be so nervous every time I would have to go for a CAT scan and blood work," she said. She would also worry every time she'd feel a tinge of sickness, thinking that the cancer had returned.

But six years ago, doctors told her news that made her cry.

"It was probably the best moment ever for me. They said there was no chance of it ever coming back. They said my type (of cancer) was a type that couldn't come back," she said.

And as such, she no longer needs check-ups.

Amanda has advice for others -- young or old -- who are battling cancer.

"I always told anybody I knew who was sick to just have a sense of humor, and just be able to laugh and keep fighting," she said. "I laughed through my whole fight. I always found stuff that I could joke about or make something funny."

She knew it was difficult for her parents.

"I would find that my dad would go and sit in his bedroom for a while with his door shut, and I knew that that was the time to let him be by himself. He was just dealing with it," she said.

Amanda, a 2005 Hazleton Area High School graduate, said she doesn't feel cheated by cancer.

"I don't look at it as a bad thing now. I mean, I've met a lot of people. I know a lot more about it than I would if I didn't go through it," she said.

jwhalen@standardspeaker.com

Copyright 2013 - Standard-Speaker, Hazleton, Pa.