Childhood Cancer Awareness 2014

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CHILDHOOD CANCER

TUESDAY, SEPTEMBER 30, 2014

THE NORTH PLATTE TELEGRAPH

One milestone at a time for Kohen Managing family increases with stress of battling cancer Telegraph staff reports

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Blake Pelster is now in the eighth grade after battling acute lymphoblastic leukemia since 2005. He participates in many activities including sports at Wallace Public School.

Remission gives sense of relief to mom, family Four years out of treatment, Pelster is now in the eighth grade at Wallace school Telegraph staff reports When Kassie Pelster talks about her son, Blake, and his cancer diagnosis, you can hear relief in her voice when she uses the word remission. Blake Pelster had just turned 3 when, on Dec. 15, 2005, he was rushed to Great Plains Heath with a nose bleed that wouldn’t stop. The son of Matt and Kassie Pelster, Blake was diagnosed with ALL, Acute Lymphoblastic Leukemia. “I was pregnant with our second child and scheduled to deliver on Dec. 16,” Kassie said. “We ended up taking Blake to Omaha to Children’s Hospital in the middle of the night.” Three days later, Kassie gave birth to daughter Denay at Methodist Hospital in Omaha. “She was a good distraction,” Kassie said. After starting chemotherapy, Blake went into remission quickly. He did nine months of chemotherapy and then maintenance therapy for two years. He completed therapy in April 2006. “He was cleared health-wise and we were looking forward, when he relapsed in September 2006,” Kassie said. The family returned to Omaha for more treatment. “The second time was more intense,” Kassie said. “He spent more time in the hospital. He did go into

remission quickly, but it was another three years of treatment.” He spent so much time in the hospital, in fact, that Blake missed his first-grade year in school at Wallace and most of the second grade. He finished his maintenance treatment in March 2010. Now four years out of treatment, Blake is in the eighth grade at Wallace Public School. He loves sports, four-wheeling, farming and hunting. “I’m living as normal a life as everyone in my class,” Blake said. “You see him now, you would never know he was sick,” Kassie said. “You learn you have to take things day by day. They tell you it will be a threeyear process and you wonder, how are we going to get through three years of this? Some days you don’t think you can do it. Then you think, well, let’s just get past this hurdle and make sure we do this right. That’s the advice I give to parents. Don’t look at the big picture, just take it day by day.” The family received some advice from a nurse at Children’s Hospital that served them well. “She told us to go ahead and treat Blake as if he had never gotten sick,” Kassie said. “Their goal was to save his life. Our goal was to raise a respectable Please see RELIEF, Page C3

He’s very much the typical 9-month-old. He is crawling, pulling himself up on furniture, squeals when his older sister squeezes him hard and loves yogurt drops. On a recent afternoon, young Kohen Wright was at home with his mom, Katie, and his sister, Leila. While “Thomas & Friends” played on the television, Kohen was busy scattering toys across the living room floor while Katie talked about living with a child with cancer. Kohen was born five weeks premature on Nov. 6, 2013. Diagnosed with neuroblastoma, a cancer that develops from immature nerve cells, his first nine months of life have been spent in and out of Children’s Hospital in Omaha. His parents, Lance and Katie, are grateful for every milestone their son achieves, “I think it’s important that the public knows what the parents of a child with cancer faces all the time,” Katie said. The Wright’s dealt with Kohen’s premature birth, breathing problems and the repair of a hole in his heart. Then came the cancer diagnosis. He has had eight rounds of chemotherapy. “Right now, the doctors are concerned that Kohen has some sort of immune disorder,” Katie said. “He still has some tumors, but he is considered stable.” When Kohen arrived early, his parents knew he might have some breathing issues. “We were prepared for that,” Katie said. “When he couldn’t breathe on his own, they hooked him up to a ventilator.” But even with treatment, Kohen did not improve. After X-rays showed shadows, he was transported to Children’s Hospital in Omaha. “They confirmed it was neuroblastoma,” Katie said. “We had no idea that anything was seriously wrong with him.”

After Kohen finished his chemo treatment, his doctors left in his central line for blood testing and medication needed for scans. On July 27, he developed an infection in his central line. His parents took him to the emergency room at Great Plains Health, where he was admitted for treatment. “I have medical insurance through my mom for another couple of months, but Lance and neither of the kids had insurance,” Katie said. “The social workers in Omaha helped us get Medicaid for Kohen.” Kohen’s doctors in Omaha recommended that he be transferred to Omaha. Two ambulance rides and a plane ride later, he was in Omaha where eventually, doctor’s removed his central line. Recently, the couple was informed that Kohen’s latest hospitalization would not be covered by Medicaid. “With nine days of hospitalization and two ambulance rides and a plane ride, I know the bill will be six digits,” Katie said. “There is no way we can pay that.” Medicaid informed the couple that Kohen’s latest treatment was “excessive,” and Katie is spending hours on the phone, trying to deal with Medicaid. The family is in a holding period right now with Baby Kohen, Katie said. Katie had been studying nursing at North Platte Community College but dropped out after Kohen was diagnosed. She is hoping to return to finish her degree. Kohen’s struggles have affected everyone, and it has been tough on 4-yearold Leila as well, Katie said. “I like to say that I have struggled the most because I have had to watch him go through what he goes through,” Katie said. “But I have to watch her go through it too. She has a sick little brother. She has to watch us pack a bag real quick and leave, and she gets tossed between hous-

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Katie Wright, left, and baby Kohen share some smiles in this photo taken in February. Kohen is battling neuroblastoma, a cancer that develops from immature nerve cells. Kohen Wright has come a long way since he first came home from the hospital nearly one year ago. Kohen has made progress in some areas, but still has a long way to go as he battles cancer.

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es, not knowing where she will sleep that night. It’s been hard.” “She’s very sweet and I will say very well-behaved,” Katie said. “She is a typical 4-year-old. She’s his little mommy. She loves getting to help with him.” Leila has been taken out of preschool and day care due to germ concerns. Katie admits that Kohen’s illness has been a strain on the couple. “Lance and I have been married for almost two years,” she said. “I go to Omaha with Kohen and he has to stay here because he has to work. We’ve spent most of the last nine months halfway across the state from each other. Communication is hard because we get tired of talking about cancer. Now

that we are home a little more, we are kind of starting or rediscovering our relationship. “These days I am finding joy in the normal,” Katie said. “For a while I was looking forward to saying that Kohen beat cancer. Now we are fighting with this potential immune disorder and that’s another rodeo. Honestly, I am just looking forward to tomorrow. Getting ahead much further, you get disappointed. We try not to plan too far ahead.” Right now, Katie is enjoying being at home with her children and her husband and watching Kohen meet his developmental milestones. “And we are getting to live like a somewhat normal family,” she said.

Pediatric cancer in state sounds alarm $1.8 billion proposed by senator for funding of Nebraska research By LIZ MCCUE liz.mccue@nptelegraph.com

In some cases, Nebraska ranking third in the United States can be a positive thing. But when that ranking is for the number of incidences of pediatric cancer in children younger than 15 years of age, it starts to ring alarm bells for Nebraska researchers. This is one reason why Dr. Don Coulter, associate professor of pediatrics at the University of Nebraska Medical Center and pediatric oncologist at the Nebraska Medical Center and Children’s Hospital in Omaha, spoke in February in support of LB764, a bill introduced by Sen. Danielle Conrad, of Lincoln, to give $1.8 million of state funding to pediatric cancer research. Coulter hopes to use the funding, which was approved in July, as a line item in the

2014-15 Nebraska state budget to develop a center specifically for pediatric cancer research with the minds available at UNMC and Children’s Hospital. “It is really, really hard when you are dealing with a disease that is really rare,” Coulter said about getting research funds for pediatric cancer. The bill came about after Mitch Ahlschwede and Karri Shiers-Ahlschwede wrote emails to all of Nebraska’s state senators to request state support of pediatric cancer research. Their daughter, Leyna, was diagnosed with Stage 4 neuroblastoma at 18 months of age. Leyna has been pronounced cancer-free but faces new challenges after treatment. The Ahlschwedes want to help other families with children facing cancer. Mitch Ahlschwede said

he had been following the case of another girl diagnosed with cancer in Texas and state funding that was directed toward research there. “I thought, ‘Why is Nebraska not doing this?’” Ahlschwede said. “Why is Nebraska not leading the way?” Pediatric cancer research hasn’t advanced much in the past 25 years, Coulter said. Funding is difficult to get because there are fewer incidences overall. Conrad’s bill used the idea of each Nebraskan donating a dollar, which ends up at $1.8 million. She and Ahlschwede are former high school classmates, so she recognized his name in the email sent to senators. She said the statistics on high incidences of pediatric cancer in Nebraska, released from the Centers for Disease Control and Prevention in 2010, were “disturbing.” “It seemed like the time was right for state action,”

Conrad said. Coulter said with funding, he will be able to organize the personnel and equipment at UNMC and Children’s Hospital into the foundations of a pediatric cancer molecular biology and therapeutics program. Actual research wouldn’t be able to begin with this first round of funding, but Conrad said the line item could be approved for future budgets as well. Coulter said one of the areas of research is determining where pediatric cancer comes from, if there are genetic indicators or environmental factors. Neuroblastoma, for example, is solely a childhood cancer. Adults don’t get diagnosed. There are certain counties across Nebraska with higher incidence rates but no obvious environmental causes. “How do they work together? That’s really hard to determine,” Coulter said.


CHILDHOOD CANCER

THE NORTH PLATTE TELEGRAPH

TUESDAY, SEPTEMBER 30, 2014

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Strength came through faith in God By HEATHER JOHNSON hjohnson@nptelegraph.com

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Lance Oltmanns, left, and his father, Lonny, spent some bonding time in California earlier this month before Lance started college. Lance has been cancer free for two years.

Outlook on life has changed for father and son Oltmanns was 15 years old when he was diagnosed with Stage 2 Hodgkin’s lymphoma By HEATHER JOHNSON hjohnson@nptelegraph.com

It’s been more than two years since a North Platte teenager was cleared of cancer. Although physical aspects of Lance Oltmanns’ medical ordeal have vanished, his outlook on life remains changed forever. “I appreciate things a lot more than I used to,” said Lance, 18. “I’m always thankful for things now.” Oltmanns was a 15-year-old sophomore at North Platte High School when he was diagnosed with Stage 2 Hodgkin’s lymphoma, a cancer of the lymphatic system. Lance pointed out a lump above his collarbone during a fishing trip with his father, Lonny, in October 2011. Lonny immediately set up an appointment with a doctor. Lance was put through a series of tests that included an ultrasound and blood work. Ten days later, the Oltmanns were told a needle biopsy would have to be performed. Because of Lance’s fear of needles, the idea of general anesthesia was considered. Before that could happen, a chest X-ray was taken, which revealed a mass in Lance’s chest so large it blocked his heart. Within two hours, Lance was in an ambulance headed to Children’s Hospital Colorado in Aurora, Colo., where a CAT scan, PET scan, biopsy and bone marrow sampling were conducted. The scans showed the mass was pressing on his heart, a large vein to his heart and his trachea. General anesthesia was no longer an option because there was a good

chance Lance wouldn’t wake up from it. Instead, local anesthesia was used to remove bone marrow from two places in Lance’s pelvis. A chunk the size of a tennis ball was taken off the mass in his chest — not all of the mass was cancerous. The diagnosis was Hodgkin’s lymphoma, and treatment was 12 weeks of chemo followed by 14 days of radiation. Lonny and Lance drove back and forth to Colorado for the chemo. Lance’s cough disappeared the first week of treatments, and his night sweats were gone by week two. When he lost his hair as a side effect, Lance shaved his head. His father shaved his head, too, out of support. “His eyebrows and eyelashes stayed in during chemo, so he was excited about that,” Lonny said. “But then, they fell out afterward. Lance had heard hair could come back curly after treatments, so he was also excited about that. It did come back curly, but only lasted one or two cuts before it went back straight.” Radiation began in January and lasted until Feb. 14, 2012 — the day doctors proclaimed Lance cancer-free. He now returns to the hospital on an annual basis for checkups to make sure the cancer stays gone and to ensure no problems crop up in his heart and lungs as a result of the radiation. “The full impact of everything didn’t really hit us emotionally until it was all over,” Lonny said. “That’s when we were shook up — when we Please see LIFE, Page C4

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The Dodsons have always been a faith-based family. No matter the challenges thrown at them over the years, they have always found strength and perserverance in trusting the Lord. It hasn’t always been easy. Their faith was tested in October 1991. That’s when Chase Dodson had his first seizure. It was his sixth birthday, and he was packing treats for school when he fell off a chair and hit his head. Chase had two more seizures that week, both of them at school. MRI results indicated a brain tumor above his left ear, between the areas that control speech and muscle movement. “I was very angry,” Sherri said. “We had already lost our oldest child in an accident. I didn’t understand why God would give us these children then take them one by one.” Bruce, Chase’s father, had a different reaction. “I was scared,” Bruce said. “As a father, you’re supposed to be able to protect your children. It’s hard to admit there

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human being.” What the nurse said stuck with Kassie. “It was tough to do sometimes, to correct his behavior and say you can’t act that way,” she said. “In the long run, you try to raise the child you would have raised no matter what.” In the first grade when he relapsed, Blake had trouble talking about his illness. “He told me he didn’t want to be known as the kid going through chemo,” Kassie said. “But now when they talk about red blood cells in science class, he is willing to talk about it.” Dealing with cancer was the only way of life young Blake knew for the first few years of his life. “He never fought us,

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Above left: Chase Dodson was only 6 years old when he had his first surgery to remove a brain tumor. Another tumor developed when he was a senior in high school. Above right: Chase Dodson has been free of brain tumors for 10 years. He is now 28 years old. are circumstances beyond your control.” The Dodsons made arrangements to travel to The Children’s Hospital in Denver. Chase’s kindergarten teacher gave him a care package before he left, and inside was a Bible verse Chase memorized: “When I’m afraid, I trust in God.” Exactly one week after his first seizure, Chase underwent surgery to remove the tumor. His parents were warned there was a 50 percent chance

he would never speak again and a 50 percent chance he would be paralyzed. “I remember watching our otherwise healthy little boy walk down that hall with his hand in the surgeon’s,” Bruce said. “All you have is your faith at that point. I remember the surgeon said, ‘Pray for us’.” The procedure was expected to last 10-12 hours, but only took five. The surgeon reported afterward to Bruce and

Sherri that Chase was able to move his arms and legs, but wasn’t speaking. “When we went into his room, he said, ‘mom,’ and it was a huge relief,” Sherri said. “Bruce asked Chase if he remembered his Psalm, and Chase shook his head. Bruce said, ‘When,’ and Chase finished, “I’m afraid, I trust in God.” An oncologist told the

never cried,” Kassie said. “He would do what he needed to do. He might cry, but we never had to force him.” The chance of a relapse is remote but not impossible, something that Kassie says she doesn’t really think about these days. “I try to stay positive,” she said. “We knew that after his first relapse so soon after being released from treatment that the odds were about 60 percent of being cured. But research for childhood leukemia has fast-tracked and I am sure those odds are better now. Blake had a check-up in Omaha a couple weeks ago and after going in every six months, he was told not to come back for a year. Family and community support was a huge source of comfort for the family during his illness.

“At the time he was originally diagnosed, we were living in Elsie and I was working in Grant,” Kassie said. “We also had ties to the Wallace community and I am originally from Hershey. The outpouring of support from Grant to Hershey was unbelievable. When Blake relapsed, he was in school in Wallace and the community and his classmates were unbelievable. It was very humbling and heartwarming. In the past few years, Blake has slowly regained his strength. “He is gaining more confidence in himself,” Kassie said. “He showed pigs for 4-H this year and helps on the farm. He’s a typical annoying teenager. He was able to keep up with his class and is an A-B student. I think for the most part, he’s a respectable kid.”

Blake’s success in fighting cancer isn’t something he or his family will forget. “I do realize how important this is and that I could have died,” Blake said. “It does make me think twice about things.” Asked what he is looking forward to, he quickly responded, “Everything!” “Finishing the school year as a success and doing sports and having fun,” he said. Blake plans to go on to college to earn an agriculture economy degree and is hoping to earn scholarships in shooting sports or in baseball. “My grandpa, dad and I go to sporting clay shoots,” he said. “I like to hunt and fish and I like anything that goes boom and has a trigger. Most of the time, I hit what I am aiming at.”

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CHILDHOOD CANCER

TUESDAY, SEPTEMBER 30, 2014

More to healing process than just physical aspect By LIZ MCCUE liz.mccue@nptelegraph.com

The challenges faced by families with a child diagnosed with pediatric cancer don’t disappear after the rounds of chemotherapy, radiation and recovery. For older children, there is missed school. For younger children, there is adapting to new routines. For parents, there is accepting that a child has faced a deadly illness. Dr. Sean Akers, pediatric psychologist at Children’s Hospital in Omaha, likens the process of accepting a possibly terminal illness to the process of grieving — denial, anger and depression can come before people accept such a change in their life. “It’s a very individual thing,” Akers said. Patients, parents and siblings aren’t required to seek behavioral health therapy alongside cancer treatment at Children’s Hospital or the Nebraska Medical Center in Omaha. The two hospitals work together in treating pediatric cancer patients. Akers works with children still undergoing treatment, and other psychologists and psychiatrists are called in depending on the needs of the patient or for outpatient care. “We don’t want to assume anything,” Akers said. The option for in-patient and out-patient counseling is always available, though. Akers said the age of the child receiving treatment can impact the need

Contacts for support: n Pediatric Cancer Action Network

P.O. Box 22992 Lincoln, NE 68542 402-310-7331 www.pcanaction.org www.facebook.com/pediatriccanceractionnetwork karri.pcan@gmail.com n Candlelighters of Omaha Children’s Hospital — Hematology/Oncology Department 8200 Dodge St. Omaha, NE 68114 402-955-3951 jmcatee@chsomaha.org n Sammy’s Superheroes 3107 25th St. Columbus, NE 68601 402-910-7708 sammyssuperheroes.org amyevans@sammyssuperheroes.org

for treatment. Younger children don’t always understand what they’re going through but could show behavioral problems by being removed from their normal routines. Behavioral problems could also appear when children are placed back into a routine after being the center of attention among family and hospital staff. For older children, returning to school after long absences can be difficult. The challenges aren’t limited to the children undergoing treatment. Siblings, either older or younger, could be impacted by the removal of a sister or brother to the hospital, by parental attention focused on that sister or brother. Parents, too, can be affected as issues crop up in relation to treatment — how to pay for treatment, how to transport a child in rural Nebraska to doctors, how to care for other children, working when a child is sick.

Akers said there are support groups available for people who don’t want counseling. Candlelighters of Omaha offers groups hosted by Children’s Hospital staff and parents of children with pediatric cancer for parents, children and siblings. The new Pediatric Cancer Action Network, created by Mitchell Ahlschwede and Karri Shiers-Ahlschwede of Lincoln, is also available to connect families for support. “One of my goals for our organization is to be a support system to families in every community across our state, regardless of location or population,” Shiers-Ahlschwede said. The Ahlschwedes formed PCAN after their daughter, Leyna, was diagnosed with stage four neuroblastoma at 18 months. The group has over 1000 likes on Facebook and just launched a website, www.pcanaction. org.

LIFE from Page C3

thought about what could have happened. Prior to that time, we focused on the positive. There was a 90 percent success rate for his type and stage of cancer.” After radiation, Lance returned to North Platte and took a job at Menards. He didn’t rejoin his swim team until his junior year, but did continue playing the violin. He has been a member of the Sandhills Symphony Orchestra for four years, and this year, was accepted to honor orchestras at the University of Nebraska at Omaha, Hastings College and Nebraska Wesleyan University. Lance also qualified for All-State Orchestra

FAITH from Page C3

Dodsons the tumor had been a low-grade astrocytoma, but he thought all of it was gone. A week later, Chase was back in school. He went through intensive speech therapy and had to return to Denver for checkups for 10 years. After a decade of being tumor-free, doctors saw no reason for follow-ups. “During his senior year in high school, Chase asked to have one more checkup before college just to be safe,” Sherri said. “The oncologist said everything looked good, but I questioned a spot.” The spot turned out to be another tumor in the same vicinity as the previous one. It was deeper and in an area that would affect perception and rightside motor skills.

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and for the state high school swim competition. He began classes this month at the University of Nebraska — Lincoln, where he is majoring in chemical engineering. His goal is to eventually go into the medical field. “I’m not into the blood aspect, and I don’t think I could give anyone a shot,” Lance said. “I have a weak stomach but one day, while sitting in chemistry class, I realized I wouldn’t have to be a doctor. I could be a chemist and still make a difference in the field of medicine.” The mass in his chest, including the scar tissue, is gone. Lance said doctors have told him the chances that the lymphoma could return are extremely low.

Lance Oltmanns, of North Platte, started college this month at the University of Nebraska — Lincoln. He is majoring in chemical engineering with the goal of going into the field of medicine.

Chase had to have more surgery and had to tell his team roping partner to look for another header for the high school rodeo season. His partner refused to — opting instead to wait for Chase. “That became a strong motivating factor,” Bruce said. The night before surgery, Chase laid beside Sherri on her bed. “He told me, ‘Mom, surgery doesn’t always go like you want it to. I want you to know that no matter how it goes, tomorrow I will be with the Lord’,” Sherri said. “There’s no greater gift a child can give than that.” At Presbyterian/St. Luke’s Medical Center in Denver, Sherri held tight to Chase’s study Bible as she watched him, once again, head down a hall toward an operating room. She wasn’t sure who

was going to return, but the surgery went well. Six weeks later, Chase was competing with a helmet in high school rodeo. He is now 28 and has been tumor-free for 10 years. His family, however, still feels the effects of the past. “In situations like that, I think there’s some level of Post-traumatic Stress Disorder parents go through,” Bruce said. “You run on high emotions and adrenaline, and when you come down, there’s an impact.” Sherri said she felt guilty knowing her son recovered and others she saw in the hospitals didn’t. Both Bruce and Sherri credit their faith, family, friends and journaling with helping them cope. And this year, to mark the absence of tumors, they threw a praise party.

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