Amber's Dream

Children's stories

Alex didn't let a hernia and a heart defect steal his spunk

As a Medcenter One registered nurse, Jackie Keller said she always knew of the superior quality of care Medcenter One provided their patients. However, it wasn’t until her son, Alex, was born that she truly appreciated Medcenter One’s high level of caring. Alex was born with two congenital heart defects; one was tetraology of Fallot, which is four separate defects in the heart and the other was a diaphragmatic hernia on his left side, which is a hole in his diaphragm that allowed a portion of his intestines and his spleen to be pushed up into his chest cavity causing his left lung to develop to only about one fourth the average size. His condition required his immediate transfer to Minneapolis Children’s Hospital where he would remain for the first six months of his life.

Once Alex was stable enough to return home, Jackie was terrified. How could they leave the team of expert doctors and nurses who had cared for Alex since birth? How could they leave those medical professionals who knew every tiny detail of his complicated life history?

It did not take long for her fears to subside. Dr. Rafael Ocejo, a Medcenter One neonatologist and pediatrician, and the pediatric nurses were ready for Alex. They were prepared for all of his unique needs.

Dr. Ocejo and his staff continued to care for Alex throughout the next three months of hospitalization and carefully monitored his progress for six months after his discharge.

“Throughout this time, the care we received was amazing. Randi and the nurses not only took care of Alex but were caring and supportive of our entire family,” Jackie said.

“Our experience has proven that Medcenter One’s ‘commitment to caring’ is truly more than just a motto,” Jackie said.

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Anthony showed Ewing's sarcoma cancer who's boss

On Feb. 6, 2008, Anthony Bren of Dickinson was 15 and received the horrible news that he had Ewing’s Sarcoma cancer—a rare disease usually found in children. The cancer cells are found in the bone or soft tissue. Despite his own grief and sorrow, Anthony told his mom, Jeanette Bren, “It’s going to be OK. Really, it’s going to be OK” as he gave her a hug. Anthony and his mom were referred to Mayo Clinic in Rochester, Minn. Treating his cancer required 14 rounds of chemotherapy—a total of 5 days in the hospital every 18 days. His mom wondered, “how are we going to be able to get here every two weeks or do we stay here in Rochester?” Anthony’s oncologist there suggested he receive treatment at Medcenter One Children’s Hospital in Bismarck from pediatric oncologist, Dr. Beruti Serabe. That way they could have most of his chemotherapy treatments in Bismarck. Anthony’s first couple rounds of chemotherapy were done in Rochester and then they were able to come home before the next round.

During Jeanette and Anthony’s first visit to Medcenter One Children’s Hospital, they were greeted by a bubbly, friendly person named Cammie, who they said they took an instant liking to. Day by day, the Medcenter One Children’s Hospital became their family. “To watch them care for my son when he was extremely sick to his stomach, listen to him when he had a story to tell and smile every time they saw him, brings tears to my eyes just thinking and remembering those times.” Jeanette said she was touched by more than the care they provided her son. “The nurses and staff also cared for me. I needed relief and they were all there to talk with, share with, laugh with and, most importantly, eat and drink coffee with. They all made a difficult situation smoother and much easier. I know working at Medcenter One isn’t just their job, it’s their passion,” said Jeanette.

And according to Jeanette, “Anthony was right when he said, “mom, it’s going to be OK, it’s really going to be OK.”

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Siblings Josh and Elly banded together against hereditary pancreatitis

Husband and wife Beth and Mitch Steckler had only lived in Bismarck for one month in July 1999 when Mitch became very ill. After many tests, he was diagnosed with hereditary pancreatitis, which is a very rare, chronic condition that destroys the pancreas. Right after Mitch had been diagnosed with hereditary pancreatitis, their beautiful baby girl Elly was sick with multiple sinus and ear infections, asthma and stomach aches. Since they were new to Bismarck, Beth and Mitch made a list of pediatric doctors and Medcenter One’s Dr. Stephen McDonough was the first on their list.

It was very important to both parents that they find a pediatrician that was familiar with her husband’s hereditary disease in case their children inherited it. So when Beth met with Dr. McDonough, the first thing she asked him was if he was familiar with hereditary pancreatitis. Dr. McDonough in fact was very knowledgeable on the disease.

One day in October 1999, Elly was suffering with major stomach problems so Beth and Mitch brought her to the Medcenter One Emergency and Trauma Center. Originally they thought she was just having a reaction to her antibiotics; however, Beth contacted Dr. McDonough and he asked without hesitation, “Did you inform the emergency room doctor that her father has hereditary pancreatitis?” That wasn’t even a thought on her or Mitch’s mind. Elly was then tested and diagnosed with the rare hereditary disease. At that moment, Beth knew that it was divine intervention that Dr. McDonough was the first pediatrician on her list.

Elly continued to have flare-ups that increased progressively. She was hospitalized numerous times. It seemed that nothing could control the attacks or the chronic pain. Due to her reduced quality of life, the doctors at the University of Minnesota, working in collaboration with Dr. McDonough, determined that Elly needed to undergo a Whipple Auto Eyelet transplant. A healthy pancreas secretes insulin, which helps control diabetes; however, this disease was destroying her pancreas and she was now very susceptible to becoming a severe diabetic. If this transplant was successful, in which the Whipple Auto Eyelet cells are implanted in the liver, the cells would do their job from the liver.

Years passed until the couple’s son Josh was diagnosed with the same rare disease. Josh who is now seven years old has been doing fine with his hereditary pancreatitis for the most part. His disease is manageable with diet and occasional medications although recently he was hospitalized for the first time for this chronic condition.

“Dr. McDonough has been a lifeline for our entire family,” Beth said. “It becomes overwhelming, when you have two children that are chronically sick. Dr. McDonough listens to us and takes into consideration our emotional needs. He’s so great with the kids because he knows their dispositions and he takes that into account when taking care of them. In the beginning, my husband and I were filled with anxiety whenever we knew that he was going to be out of town. In the past years, he’s worked very thoroughly with the other pediatric doctors at Medcenter One, and they are all very well informed regarding the medical conditions and treatments for our kids. I can’t say enough about Medcenter One, Dr. McDonough and the nurses in the Children’s Hospital. They are all wonderful” Beth said.

According to Beth, the entire family loves Dr. McDonough. When seven-year-old Josh was asked what he thought about Dr. McDonough, he said, “I love Dr. McDonough, because he cares for us a lot. He told me that I can do anything that I think I can do.”

Elly, who is 10, said “He’s fun, smart and makes me feel better. He’s like a part of our family.”

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Together brothers Kajren and Caisen conquered separate sicknesses

Kajren Dohrmann had trouble keeping his formula down when he was a baby. After seeing a doctor who gave Kajren a couple different medications that didn’t work and then trying chiropractic medicine without success, Kajren’s mom, Kari, decided to take him to see Dr. Todd Twogood, a Medcenter One pediatrician. “When we went to see Dr. Twogood, I thought he would tell us the same thing and we would be walking out the door with more medicine to give this little baby. He actually listened to us and what our concerns were,” Kari said. “We did leave with another medicine to try, but this one worked. We had our little boy back, happy and content.”

But the story doesn’t end there. Two years ago when Kajren was four, Kari was diagnosed with a genetic heart condition. Kajren was diagnosed with the same heart condition. “I knew that the Mayo cardiologists come to Medcenter One for outreach. Dr. Twogood told me he has been working with Mayo for quite a few years now and feels confident that we could take care of things right here in Bismarck,” Kari said. Dr. Twogood was right. Kajren has been given medication to help and is doing great. Kari happily reported that “he is as active as any other 6-year-old.”

Kari’s other son, Caisen, was born with severe pulmonary hypertension which means he had high blood pressure in the arteries supplying his lungs. After he recovered, Kari said she went to Dr. Twogood as well as the neonatologists for follow-up appointments. “I was told Caisen would be as healthy as any other child and we shouldn't be concerned about anything major. They were right; Caisen is a healthy, active 3-year-old. He looks up to his big brother and they are best friends,” Kari said.

Kari wrote the following to share her gratitude for the help her boys received at Medcenter One and from Dr. Twogood.

“Both of my boys love Dr. Twogood. If we see him on a commercial or see his face in an advertisement, they get so excited. We have so many of his bio cards because each time we are at the clinic they have to have another one. Kajren loves animals and has told us that he is going to be a vet someday or a doctor like Dr. Twogood.

He has become part of our family. Whether we are there for one or the other boys being sick, he still sees them both. Whether I am calling with a question or going to the walk-in clinic or our regular appointments, we are always treated with respect and I have never felt that my concerns were ignored. It is so much easier as a parent to have great resources like Dr. Twogood and Medcenter One.

I want to thank Dr. Twogood, his staff and Medcenter One for making each and every time we are there a very special one for my boys and for the reassurance you give us as parents.”

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Landon kept severe asthma from stripping away his smile

Landon Avery Phillips was born March 21, 2003, a seemingly healthy baby boy. Within weeks, that would change. When Landon was just seven weeks old, he underwent emergency surgery for left hydronephrosis—a condition created when urine flow is blocked, causing the kidney to enlarge. Shortly after his kidney surgery, Landon’s mom, Erin Kading, noticed changes in Landon’s breathing. She said it seemed labored and sounded raspy. The tiny baby also had an audible wheeze, an alarming gurgle and a constant cough. The color of his skin varied from ashy gray to bright cherry red. “We knew something was not right,” Erin said. One month later, Landon was diagnosed with asthma.

Landon has been hospitalized at Medcenter One Children’s Hospital numerous times for asthma. His hospital stays usually require oral steroids and oxygen to help him breathe. Sometimes, Landon works so hard to breathe that he becomes dehydrated. Even a common cold can send him into respiratory distress.

“It is a very helpless feeling watching my child fight to breathe,” Erin said. Landon has to take several medications for his asthma including oral, inhaled and injected steroids and nebulizer treatments. To the family’s distress, the repetitive treatments with steroids have had adverse effects on other parts of his body. The little boy, now 6 years old, has developed several other life-threatening conditions, including adrenal insufficiency and excessive weight gain. Additionally, Landon has been diagnosed with obstructive sleep apnea and high blood pressure. Unlike other children his age, he must use a machine to help him sleep every night. Camping trips and sleepovers are not an option for this young boy.

With help of Dr. Todd Twogood, a Medcenter One pediatrician; the Medcenter One Children’s Hospital nurses and Mayo Clinic specialists, the Kadings have hope.

“We are, hopefully, gaining an edge,” Erin said. “Despite all of Landon’s medical conditions, he remains a free spirit and an inspiration to everyone around him. He is so brave. He has been through more in his six years than most adults will ever go through.”

According to Erin, without the caring support of everyone at the Medcenter One Children’s Hospital, these challenges would have been much more difficult to face.

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Levi will be on the winning team in his fight against leukemia

This pintsize whirlwind of nonstop motion could steal your heart with just one little grin. Joy is written all over his face. Four-year-old Levi Kordovsky, affectionately called Mister Man by his mom, frequently breaks out in contagious giggling. The only giveaway that Levi has leukemia is his bald head. His playfulness can fool you. “Kids are so resilient. When they’re feeling good, they just go for it,” said Sara Kordovsky, Levi’s mother.

Sara can also tell you that Levi, who also has Down syndrome, has been through quite a bit in his young life. He was diagnosed in early January 2009 with acute lymphoblastic leukemia—a cancer of the white blood cells. In late December 2008, Levi began having flu-like symptoms. At that point the blood work looked fine. However, within a couple of weeks, he developed a rash and spiked a high fever.

Levi’s pediatrician in Hettinger, Dr. Thomas Jacobsen, discovered that his platelets were now very low. “There is a higher rate of leukemia in children with Down syndrome. So, Dr. Jacobsen recommended we drive to Bismarck right away to see Medcenter One pediatric oncologist Dr. Baruti Serabe. As a result, he was a big factor in the early diagnosis of Levi’s condition,” Sara said.

Dr. Serabe specializes in the treatment of children with cancer and blood disorders. “Dr. Serabe is so knowledgeable and she always has Levi’s best interests in mind. When we first arrived he was admitted and received a transfusion. After a bone marrow biopsy and a spinal tap, we received Levi’s diagnosis of leukemia. After only a day in Bismarck, Dr. Serabe sent us to the University of Minnesota Hospital and that really got things moving,” Sara said. Levi needed to be transferred to the University of Minnesota Hospital because the treatment required was very intense and there were risks of complications due to his Down syndrome.

Adam Kordovsky, Levi’s father, spoke about the day the family went to Minneapolis. Only one parent was allowed to go on the plane. So, he and their 7-year-old son, Luke, had to fly the next day. “That was difficult. However, one of the nurses on the Medcenter One Children’s Hospital is a friend of ours. Kate Gartner went to high school with me and to college with Sara. She was allowed to go along. It helped to know there was a friend on the flight,” Sara said.

While at the University of Minnesota Hospital, Levi received a very aggressive induction phase of his treatment for leukemia. “Having Down syndrome added an extra factor. Because of the genetic differences, the treatment was especially difficult but at the same time effective. Levi is classified as a rapid early responder,” Sara said.

“One of the most difficult things for everyone in the family is giving up what you know as normal. You can’t let the situation be all-consuming,” Adam said.

Sara added, “When you have a child with special needs you learn a great deal about coping. In some ways we were better prepared to handle this. My advice to other parents facing the difficult situation of a sick child is that they should try very hard to think of them as a kid, not as what they have.”

After a month, Levi returned to Medcenter One to continue treatment. The Kordovsy family said they feel so blessed because support from family and their community has been remarkable. They are also very happy about the care they have a received at Medcenter One.

Sara has read about Amber’s Dream, a project to transform the Medcenter One Children’s Hospital. “I really like the idea of creating family suites. That will be especially nice for families who here for long periods of time,” Sara said.

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McKenzi doesn't let Guillain Barré syndrome keep her off the court

“I just want to be like my friends,” lamented 11-year-old McKenzi Wehri to her mother when Guillain Barré syndrome, a rare disorder in which the immune system attacks the nerves, stole away her childhood in March 2009. The fifth grader, normally an active participant in elementary sports and music within her home community of Mott, suddenly discovered she had no feeling in her fingers or her feet. She found herself unable to climb the stairs to her bedroom, ride her two-wheel bike around the neighborhood or even walk the halls of her school without stumbling and occasionally falling. She said it was humiliating and she was terrified.

On April 24, 2008, Dr. Twogood, referred the family to St. Mary’s Hospital in Rochester, Minn.. Arriving at 1 a.m. the next morning, McKenzi had to endure three long hours in the emergency room followed by an early morning admission into the specialty hospital and more tests, including a spinal tap. The diagnosis? McKenzi had an extremely rare form of Guillain Barré syndrome known as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). The protocol of 21 IV treatments, to be administered at varying time intervals over the course of nearly a year and a half, could be carried out on an outpatient basis at Medcenter One Children’s Hospital. McKenzi could go home.

McKenzi’s last IV therapy treatment was mid-August 2009. According to McKenzi’s mother, Kristen, Dr. Twogood is the best. “Incredible,” said Kristen in describing McKenzi’s doctor. “He is just incredible. He talks directly to her, answers her questions and even gives her advice on how she should handle her peers at school.”

The road to recovery for McKenzi will be long and difficult. She will never be cured but she has the hope of remission. She has had to relearn how to balance, jump, skip, climb stairs, ride a bike and hold a pencil. In fact, she couldn’t wait to show Dr. Twogood that she can now run, although it was a short distance. Hopeful that her fingers will regain their feeling, she is determined to return to her beloved flute music by next fall. She fully understands that her recovery is directly related to the therapy work she does as an outpatient and at home. She is very motivated to take back her life.

The make-believe setting planned for the Medcenter One Children’s Hospital, known as Amber’s Dream, is important for the children who will follow in McKenzi’s footsteps.

“For those children, it will be like stepping into another world, a world where the children are happier, a place where they can think about other things rather than being sick.” Kristen said. Her siblings and her parents are thrilled at being able to tell their story and offer their support for Amber’s Dream.

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Tabitha defeated a rare form of pneumonia

When her daughter’s blueberry-colored eyes turned gray, Lisa Reichenberg said she knew something was very wrong. The family raced the 40 miles from their home in Center to Medcenter One with 7-year-old Tabitha in the back seat. Dr. Parag Kumar, a Medcenter One pediatrician, quickly ordered an X-ray. Lisa said she could tell by the look on his face as he read the X-ray that her daughter was in trouble. Indeed, Tabitha had a rare form of pneumonia and nearly 80 percent of her lungs had already filled with fluids. An ambulance transported Tabitha and her mother to a children’s specialty hospital in Minneapolis where she was given adult-quantity doses of antibiotics for one full week. The therapy continued for six weeks after Tabitha returned home.

Less than four years later, Tabitha’s brothers and sisters came down with influenza. Tabitha was running a fever too, but no one was overly concerned because she had been healthy since her first round of pneumonia. By morning on Christmas Day, Tabitha and her mother were back at Medcenter One, under the care of her regular pediatrician, Dr. Todd Twogood. Tabitha was diagnosed with pneumonia a second time.

The next 48 hours were critical for Tabitha. The IV therapy protocol was started. Tabitha steadily improved over the course of a week until her discharge on New Year’s Eve, just one day before her New Year’s Day birthday.

On her next regular visit to the clinic, Dr. Twogood excitedly grabbed Dr. Kumar. “Do you remember Tabitha?” he exclaimed. “Look how healthy she is. Do you believe it?”

“We are so excited to hear about Amber’s Dream,” Lisa said. “We know, from Tabitha’s experiences in Minneapolis that it’s the little things that make children happy. Even though she was very sick, the child-friendly setting there made her feel like she was on vacation. Both of us are happy to know that we can help other children through our support of Amber’s Dream."

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