UI Stead Family Children's Hospital Kid Captain 2019 - End of Season Book

2019

PHOTO COURTESY OF BRIAN RAY-HAWKEYE SPORTS

KIDS’ DAY AT KINNICK

KID CAPTAINS

AIDAN KASPER August 31, 2019 Iowa vs. Miami of Ohio

JACKSON TIJERINA

CIEN CURRIE

SKYLAR HARDEE

AUBREY BUSSAN-KLUESNER

September 7, 2019 Iowa vs. Rutgers

November 9, 2019 Iowa vs. Wisconsin

September 14, 2019 Iowa vs. Iowa State

November 16, 2019 Iowa vs. Minnesota

ENZO THONGSOUM

September 28, 2019 Iowa vs. Middle Tennessee State

JEG WEETS

November 23, 2019 Iowa vs. Illinois

2019 SEASON

ANDREW MORLAN

GABBY YODER

CHARLOTTE KELLER

COOPER LEEMAN

October 5, 2019 Iowa vs. Michigan

November 29, 2019 Iowa vs. Nebraska

October 12, 2019 Iowa vs. Penn State

December 27, 2019 Iowa vs. USC

KENDRA HINES October 19, 2019 Iowa vs. Purdue

LUCY ROTH

October 26, 2019 Iowa vs. Northwestern

AIDAN KASPER

Cedar Rapids, Iowa

WATCH AIDAN’S STORY

Aidan Kasper of Cedar Rapids has undergone countless tests and medical procedures, but his spirit is unwavering.

“Imagine taking a deep breath,” Rob says. “When Aidan does that, all the soft tissue collapses back there and partially obstructs his airway.”

“He’s got a lot of inner strength,” says his dad, Rob. “I’m not sure exactly where he pulls that from, but he’s able to meet his adversity with a pretty positive attitude.”

Rob and Montyne had never heard of Pierre Robin sequence. “Like so much of Aidan’s health care moving forward, we found that we really didn’t know a lot,” Rob remembers, “but became more informed as Aidan got older and as we were introduced to more services and care here at the children’s hospital.”

Before Aidan was born, his parents had no indication their son would have any health issues, but that quickly changed.

“He didn’t come out crying,” his father recalls.

“His skin was blue.” When his condition did not improve, he was transferred to University of Iowa Stead Family Children’s Hospital.

Rob rode in an ambulance with Aidan, who was admitted to the neonatal intensive care unit (NICU). Aidan’s mother, Montyne, followed after being discharged from the local hospital where she gave birth.

“That was probably one of the hardest days of our life,” Rob remembers. “We couldn’t hold and touch Aidan as our newborn.”

Aidan was diagnosed with Pierre Robin sequence, a craniofacial abnormality that includes a smaller than normal lower jaw, a tongue placed further back than normal, and a cleft palate—an opening in the roof of the mouth. The syndrome causes breathing and eating difficulties.

The syndrome wasn’t the only medical challenge Aidan would face. Just months later, they noticed Aidan was unusually pale, and a family friend suggested he get checked. Aidan’s local pediatrician ran lab tests.

“The doctor came back to the room and says, ‘I want you to take Aidan back to Iowa City,” Rob recalls. “He said, ‘Do not stop at home, just drive straight to the ER and we will get you admitted.”

Doctors diagnosed Aidan with Diamond Blackfan anemia, a rare disorder in which a person’s bone marrow can’t make enough red blood cells, causing fatigue and shortness of breath. “There are about 600 to 700 cases in the United States today,” explains Rob. Aidan’s life has since been a series of hospital stays and so far, approximately 40 surgeries. He also has biopsies to determine how much iron is building up in his organs. His anemia is treated through red blood cell infusions, something

he’ll probably need the rest of his life. “In order for Aidan to survive, he gets packed red cells,” Rob says. “So far, I’m guessing about 250 blood infusions.”

He credits blood donors for keeping his son alive, along with the team at UI Stead Family Children’s Hospital. Rob cites the continuity of care program among those that helped his family develop an understanding of Aidan’s care plan. “They take a personal interest in your child, in your family,” he says. “I think it shows genuine caring.”

While he has hopes for the future, including becoming a veterinarian or herpetologist (a reptile/amphibian specialist), Aidan’s challenges have not only been his health.

In 2013, his mother died of metastatic breast cancer when he was just 7.

“He’s really a good example for me,” Rob says.

“Aidan demonstrates to the rest of us that you can achieve greatness and overcome challenges that you’re given.”

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Aidan demonstrates to the rest of us that you can achieve greatness and overcome challenges that you’re given.

JACKSON TIJERINA

Council Bluffs, Iowa

WATCH JACKSON’S STORY

Jackson Tijerina was born a seemingly healthy boy, but at 5 months old, he began vomiting daily and was not growing. Ongoing medical tests did not provide any conclusive answers; around his fifth birthday, Jackson began having headaches so intense he would scream in pain at night.

“They kept telling us that he had acid reflux,” says his mother, Amy. “I just kept feeling like it wasn’t right.” A brain scan finally revealed Jackson had a brain tumor called ‘pilocytic astrocytoma.’

“We knew that there was something wrong, but we just didn’t expect to hear ‘brain tumor.’” Amy recalls. The tumor wrapped around the brain stem, affecting Jackson’s vision, metabolism, balance, and learning abilities, and its proximity to his spinal cord made surgery challenging.

Doctors at his local hospital removed 90 percent of the tumor, but three months later, scans revealed Jackson’s tumor had spread throughout his brain and spine. He received chemotherapy; however, his tumor did not respond. “[A friend] referred me to University of Iowa Stead Family Children’s Hospital and told me about the pediatric neuro-oncology program, and how the hospital was at the top of the research in specifically brain tumors,” recalls Amy. Without hesitation, the family drove four hours to Iowa City.

They met with pediatric neuro-oncologist Mariko Sato, MD, PhD, who answered their questions and arranged for them to meet with the rest of the

pediatric brain tumor team—the only such team in Iowa—that same afternoon.

“Immediately, I felt relief,” remembers Amy. “Dr. Sato told us not to give up and that there is always a way.” The neuro-oncology team formed a plan while at the same time treating the family with compassion, empathy, and kindness, she recalls.

“When we walked out of here, we felt great,” says Jackson’s father, James. “We had hope on our side, and that’s what you need sometimes, just a little bit of hope.”

Part of Jackson’s treatment included placing a port in his chest to administer medications through a central line; something he eagerly shows off when asked.

“Whenever anybody talks about his port, he will lift his shirt up, and he will tell you, ‘See, I’m Iron Man,’” Amy says.

In summer 2018, Jackson’s tumor stopped responding to treatment. “Even though his tumor is quite common, his mutation makes it rare.

There are only a handful of children in the whole United States that have this type of mutation,” explains Amy. “[At our local hospital,] we were told he was given 12 months left with us. We didn’t think we had any other options. We came back to Dr. Sato, and she explained to us, ‘Don’t ever say never. Your fight is not over.’”

Jackson’s team has been able to provide the most advanced treatment options available, including

an experimental clinical trial drug that specifically targets his cancer mutation. The medication has improved Jackson’s outlook significantly.

His mutation doesn’t allow Jackson to be in the clinical trial, but his care team received special authorization.

“If it weren’t for this medication, I don’t think we would have Jackson today,” Amy says.

Funding for pediatric cancer research is important, Amy adds. “When he was diagnosed three years ago, the targeted therapy that he’s on currently didn’t exist specifically for children,” she says.

Amy also cites the importance of seeing specialists at Iowa’s only comprehensive children’s hospital. “Even though he has brain cancer, it can affect his eyesight, so we would have to see an ophthalmologist, or endocrinology for growth stimulation,” she says. “I can’t even count how many times Jackson has been in surgery for different things that are not affiliated with his brain. There’s a whole team of doctors for one type of diagnosis.”

Jackson now hopes to become a veterinarian, join the U.S. Navy Blue Angels, or be a kicker for the Iowa Hawkeyes football team.

“Once we came here and talked to our doctors, they said, ‘There’s a lot of hope out there,’” James says. “That’s the feeling we got from Iowa City: the word ‘hope.’”

That’s the feeling we got from Iowa City: the word ‘hope.’

CIEN CURRIE

Winterset, Iowa

WATCH CIEN’S STORY

Cien Currie was not meeting developmental milestones in his first few months of life. One evening, he had a seizure, and his parents took him immediately to a Des Moines hospital.

“They were giving him seizure medicines, and seizure medicines, and seizure medicines, and nothing was stopping it,” says his dad, Jacob.

“One day, they gave him a little too much.”

“All the machines started going off, and he stopped breathing,” remembers Cien’s mom, Kayle. “My dad and my brother-in-law had to carry me out of the room, I was so distraught. I remember thinking, ‘Am I going to lose this child?’”

After several weeks, when their local hospital still could not determine a cause for his seizures, Cien was transported by helicopter to University of Iowa Stead Family Children’s Hospital. By the time Jacob and Kayle arrived two hours later, pediatric neurologists had diagnosed Cien with agenesis of corpus callosum (ACC), a rare birth defect in which the middle of the brain does not fully form.

“The whole pediatric neurology team was waiting for us to walk in the room. They told us exactly what was going on, this is what they’re going to do, and this is how we’re going to treat him from here on out,” Jacob remembers. “It blew my mind how quick they knew what they were doing.”

“Cien doesn’t have as many nerve endings [in his brain] to transfer information,” Jacob says. “His brain was starting to misfire and causing the seizures.”

Cien’s care team developed a plan, including using a steroid medication that drastically reduced his seizures.

“He went from hundreds of seizures a day to two, and then a few days after that, he was down to none,” Kayle recalls.

ACC is very rare and affects each person with the disease differently. “ACC affects your eating.

It affects your vision. It affects everyday things – just simple things like learning a word,” Kayle explains. “Cien is wheelchair-bound, and cannot say words completely.”

When his seizures returned a year later, pediatric neurologists developed a new plan and put him on a special high-fat, low-carbohydrate ketogenic diet. He had a gastrostomy tube, or G-tube, inserted through his abdomen to deliver the formula directly to his stomach. He has now been seizure-free for two years.

“He’s already gained about 30 pounds, which is amazing,” Jacob says. “It ended up probably saving his life, because he was getting what his body needed.”

Another surgery addressed his scoliosis, an abnormal curvature of the spine.

“ACC affects your muscles, so his back started to curve a little bit. It got to the point where he was really hunched over,” Kayle says. “It was affecting his organs.”

“He is doing great now that he has had both those surgeries,” she adds. “He’s learned how to sit up. He can walk in his walker a couple steps, which is huge for us. He’s like a whole new kid.”

Today, Cien loves school and is known for his big smile. Both parents credit UI Stead Family Children’s Hospital.

“There’s no handbook for having a child with special needs,” says Kayle. “Each person—his neurologist, dietician, orthopedic surgeon, everybody—makes sure that we’re on the path that we need to be.”

“The quality of life they’re able to give my son means the absolute world to me and my family,” Jacob adds. “They literally saved his life. If it wasn’t for this place, I wouldn’t have the son that I have today.”

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They literally saved his life. If it wasn’t for this place, I wouldn’t have the son that I have today.

ENZO THONGSOUM

Des Moines, Iowa

WATCH ENZO’S STORY

Enzo Thongsoum was a healthy toddler, but he started having unexplained seizures at 18 months old. Enzo was in his local hospital for more than three weeks. When his condition worsened at his local hospital, he was transferred by helicopter to University of Iowa Stead Family Children’s Hospital.

Pediatric neurology specialists quickly diagnosed Enzo with anti-NMDA receptor encephalitis, a disease newly identified in 2007, in which the immune system attacks the brain.

“It was the scariest thing ever to have your baby in your arms, having a seizure. I just never felt so helpless,” recalls Enzo’s dad, Jack. At their local hospital, “they kept saying he had epilepsy, and we just knew that wasn’t it. To see your baby suffer like that, there’s no greater pain in the world.”

Once Enzo arrived at UI Stead Family Children’s Hospital, doctors had answers within minutes.

“We had a pediatric neurologist come in, Katherine Mathews, MD,” Enzo’s mom, Phanna, recalls. “She actually just looked at Enzo for about 10 minutes and told me that she thinks he has what’s called anti-NMDA receptor encephalitis. It was a pretty new illness, which was only identified in 2007, and he got diagnosed in 2012.”

“Anti-NMDA receptor encephalitis is super rare. I think Enzo was only the second case [at UI Stead Family Children’s Hospital],” adds Jack. “We’re so thankful for her, for the hospital. Your immune system is attacking the brain, it scrambles your brain. Enzo was just a toddler at that time, just

trying to put words together, so he couldn’t walk anymore, he couldn’t talk anymore.”

“Before Enzo got sick, he probably had a normal regular cold, like any other kid,” Phanna explains.

“The doctors think his body thought it was still fighting something, a virus, but it had nothing to fight off. So, instead, it started attacking the receptors in his brain.”

Enzo’s care team soon came up with a treatment plan that included steroids and chemotherapy.

“As soon as Enzo got diagnosed and we knew what we were dealing with, we had a game plan, and we knew what kind of treatments to try,” Jack recalls. “So, it was a huge relief.”

“The recovery for this illness is a pretty long journey,” Phanna adds. “Normally for someone who gets this illness, their prognosis is about 80 to 90% that they’ll be back to normal within the first year. Within the first year, Enzo didn’t get back to normal. They thought he was going to be in his wheelchair for the rest of his life, but he’s proved them wrong.”

One big improvement came in December 2016, when Enzo started walking.

“We were already three years into the illness,” Phanna says. “We did exercises where you tried to get him to stand, but we never saw anything that he was going to walk tomorrow. It just happened.

Being able to see Enzo walk again was probably one of the best days of my life.”

In addition to physical therapy, Enzo receives speech therapy in the hope that he will regain his ability to speak.

“They treat the person, not the disease, so each person is different,” Jack says of the variety of specialists Enzo sees at UI Stead Family Children’s Hospital.

“We came back quite often, and the nurses just made us feel at home,” Phanna adds. “Everybody knew Enzo’s name when we walked in. They just made us feel really comfortable.”

Today, Enzo loves spending time outdoors and being with his family.

“Enzo has his own hashtag. It’s #EnzoTheFighter,” explains Jack. “Every picture we take, that’s the hashtag we throw on there because he just doesn’t stop. He teaches you how to persevere through horrible things. He’s amazing.”

They treat the person, not the disease.

ANDREW MORLAN

Cedar Falls, Iowa

WATCH ANDREW’S STORY

Doctors discovered Andrew Morlan was in kidney failure shortly after he and his twin brother, Isaac, were born. He was rushed to University of Iowa Stead Family Children’s Hospital, where he spent two months in the Neonatal Intensive Care Unit.

Doctors determined the two had twin-to-twin transfusion syndrome, in which blood supplies of the twins become connected in the placenta.

“One twin becomes the donor and the other one the recipient of the blood,” Karen explains.

“With the lack of blood, Andrew ended up with kidney damage.”

Doctors determined Andrew needed a kidney transplant, but he was too small for surgery.

Andrew’s parents were trained in dialysis before he was discharged, using a machine that functioned as his kidneys.

“We had to weigh him in the morning, and we had to weigh him at night,” Karen recalls. “[The goal was] to get him large enough to have a kidney transplant, because you have to be a year old and weigh 20 pounds.”

“Doing dialysis at home was a huge stretch for Karen and me,” adds Andrew’s dad, Ron. “But we learned a lot really fast.”

Andrew underwent cataract surgery and other procedures. By the time he turned 1 year old, he was still too small for the transplant.

“At 12 months, he was 12 pounds. At 13 months, he was 13 pounds,” Karen remembers. “We hit the point that some really hard decisions needed to be made. The amazing nephrology staff referred him to a hospital in Minnesota, because there was a surgeon up there that had actually done a transplant on a child smaller than 20 pounds.”

“Natural antibodies will fight the cancer, but then those antibodies also attack the kidney,” explains Karen. “Andrew went into an early rejection because his anti-rejection medicines were reduced for his cancer treatment. Since the time he was 8, we’ve just been fighting alongside his amazing staff to keep his kidney in his body and keep it in there as long as we can,” Karen says.

Karen donated one of her kidneys when he was 14 months old, and Andrew started growing and learned to walk. Years later, however, he was diagnosed with post-transplant lymphoproliferative disorder, which can result in cancer in transplant patients.

Andrew received a second transplant this summer at UI Stead Family Children’s Hospital with a kidney donated by his uncle.

“To keep a transplanted kidney, we have to suppress his immune system,” Ron explains.

“It also allowed some bad cells to grow.”

“Andrew literally woke up one day, and he was snoring like crazy. His tonsils were huge,” Karen adds. “We immediately had an appointment [in Iowa City] and met with the nephrology staff.

He had surgery immediately, and then we moved into chemotherapy, reduced his kidney transplant anti-rejection medicines, and moved into IVIG (infusion therapy) to flood his system with good antibodies.”

Andrew also was diagnosed with eosinophilic esophagitis, an inflammation that damages the lining of the esophagus.

“There have been long days,” Karen says. “Andrew has missed close to or more than a year of school due to being sick and hospitalizations. What he does love, though, is coming down to the children’s hospital. I know that he would say that he feels like he’s their only patient.”

“It’s important to have access to pediatric specialists because Andrew has so many issues, and one issue can lead into another issue,” Karen adds. “They do an amazing job of communicating with each other and amazing job of collaborating.

Andrew would love to be a nurse in the future. He sees how well you can be taken care of by a nurse.”

“It honestly feels like they love me and care about me, and they’d do anything for me,” adds Andrew.

“Why would I like to be a nurse? That’s what I’ve known my whole life, so it seems natural.”

It honestly feels like they love me and care about me, and they’d do anything for me.

GABBY YODER

Kalona, Iowa

WATCH GABBY’S STORY

When Abbie Yoder went to her local doctor to learn the results of her 20-week ultrasound, she discovered there was something wrong with her baby.

“The second surgery, they take one of her major veins that comes back to the heart and hook it into one of the arteries that goes to her lungs,” explains Derek.

“The doctor told me that there was a mass on the right side of my baby’s heart,” explains Abbie.

“She thought I should go to the University of Iowa to have it looked at.”

By the time of her third heart surgery, Gabby was 4.

A follow-up fetal echocardiogram at University of Iowa Hospitals & Clinics led to a diagnosis of hypoplastic right heart syndrome, a congenital defect in which the heart’s right side is underdeveloped. This condition requires three surgeries to re-route blood to the lungs and ease the workload of the one pumping chamber.

“You can’t even describe how you feel,” Abbie says.

“Just to know you’re going to have this innocent, helpless baby. That you’re going to have to trust other people to save her life immediately.” Seven days after Gabby was born, she underwent open heart surgery at UI Stead Family Children’s Hospital.

“They put in a shunt in her heart that basically allowed the blood to get to her lungs,” her dad, Derek, recalls. “Knowing the quality of care that the children’s hospital is known for definitely helps make you feel a little bit better, knowing that she’s in good hands when she goes out that door.”

Gabby went home just seven days after her first heart surgery.

“In true ‘Gabby fashion,’ she found light in the experience,” recalls Abbie. “We gowned up, Gabby and me, and we’re walking down the hallway into the operating room, and she gets in there and everyone’s obviously gowned up.

And Gabby goes, ‘We’re all doctors.’ To her, this is a place where we can all be together, and she doesn’t have to be afraid.”

Gabby has faced other procedures, including corrective eye surgeries.

“The ophthalmology doctor always has one of her favorite songs cued up on his phone,” Derek says.

“It’s easier as a parent, because she gets excited to come. It helps offset any of the shots or any things that she may have to end up getting.”

She also was diagnosed with a condition called thrombocytopenia, a condition in which Gabby has a low platelet count.

“We see pediatric hematology here for that, because she doesn’t clot appropriately,” Abbie says. “Recently, she popped out a tooth and it bled for 45 minutes. Gabby was pretending it was a “Thriller” music video. It was just a way to turn something not fun into something hysterical.”

Gabby sees pediatric experts at the Center for Disabilities and Development at UI Stead Family Children’s Hospital. Abbie explains, “Her muscles aren’t as strong, and her balance is off quite a bit.

Doctors are exploring the cause of these symptoms.”

“We couldn’t take care of Gabby without having so many different specialists on board,” explains Abbie. “Having those people who really know the details of all her specific conditions makes a world of difference.”

Gabby loves to run and sees her future as a police officer. She also enjoys being part of the Heart Friends support group through the hospital.

“It has connected us with other families who have kids with heart defects,” Abbie says. “It has given Gabby other friends she can see at pool parties who have scars down their chest.”

Congenital heart defects require lifetime care.

“Gabby’s future is something that’s hard to think about,” explains Abbie. “There is a possibility that Gabby may need a pacemaker because her heart rate has steadily lowered. There’s always the possibility that she’ll need a heart transplant someday.”

“I think what Gabby has taught me about all of that, though, is today, it doesn’t matter,” Abbie says. “She today is the coolest kid with the biggest heart, who just is a perfect example of living life to the fullest.”

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You can’t even describe how you feel. Just to know you’re going to have this innocent, helpless baby. That you’re going to have to trust other people to save her life immediately.

KENDRA HINES

Mount Vernon, Iowa

WATCH KENDRA’S STORY

When blood tests during week 18 of Teresa Hines’ pregnancy were positive for Down syndrome, she was unfazed. “In my mind, my daughter, Kendra, would be perfect no matter what. I could not even imagine our life without her right now.”

Kendra was born seven weeks early at a hospital in Cedar Rapids. Teresa remembers, “She did have a breathing [issue] in the hospital that we could not explain. [The doctors] said it was normal, but to us, it was not normal. After we brought Kendra home, she quit breathing in the middle of the night. It was the most horrifying time of my life.

I thought we were going to lose our daughter.”

“It was very sad to see a child gasping for air,” her dad, Mickey, recalls. “I immediately called the ambulance, and they asked, ‘Where do you want to go?’ I said, ‘I want to go to the children’s hospital.’”

“We wanted to come directly to Iowa City because we knew that she would be well taken care of here,” adds Teresa. “The doctors, nurses, and staff are just phenomenal. They know their business and they take care of these children to no end.”

Kendra was rushed to University of Iowa Stead Family Children’s Hospital, where doctors diagnosed subglottic stenosis, a narrowing of the airway, and her breathing noise as stridor—a high-pitched, wheezing sound caused by an obstructed airway. She also was diagnosed with laryngomalacia, a common cause of stridor.

“You can’t breathe because you have too much skin in your throat, and it causes your throat to collapse,” Mickey explains.

“One being the softening above the voice box and one being the weakening of the cartilage below the voice box,” Teresa adds, explaining the conditions.

Pediatric otolaryngologist Deborah Kacmarynski, MD, and her team performed a surgery that widened Kendra’s airway to help her breathe normally again.

More recently, Kendra was diagnosed with tracheomalacia, a rare condition in which the cartilage of the windpipe, or trachea, is soft and floppy.

“The airway can collapse when she coughs, breathes, or even eats,” Teresa explains. “When she gets worked up about something, a lot of times she gets a coughing spell, [which] causes her trachea to collapse.”

Pediatric specialists ordered a sleep study and discovered Kendra stopped breathing an average of nine times a night. She now uses a CPAP machine at night to help her breathe.

“This hospital is heaven-sent,” Mickey says. “They have hearts of gold. They give you strength to overcome the hardest parts of what your child is going through.”

He and other family members have chromosome tattoos to reflect Kendra’s Down syndrome. “[Those with Down syndrome] have an extra chromosome; it’s called trisomy 21,” Teresa explains. “That makes them a little bit more delayed than other children. Kendra is very highly functional, so we are very lucky. In fact, I call it ‘Up syndrome’ because there’s nothing down about Kendra whatsoever.”

“There are lots of different things that can be associated with Down syndrome,” she adds.

“They can have major heart problems, bowel problems, stomach problems. Kendra has none of that. She does have hypothyroidism and has been on medications since she was 6 months old.”

The couple’s other four children are Kendra’s “biggest supporters,” Teresa says.

Kendra plays volleyball, loves to dance, and says her favorite singer is American Idol winner and Iowa native Maddie Poppe. She also enjoys cheering on the Hawkeyes.

“UI Stead Family Children’s Hospital has been our savior,” Teresa says. “I cannot even thank enough people for what they have done for our daughter.

Without this place and the people in it, our daughter may not be here today.”

I call it ‘Up syndrome’ because there’s nothing down about Kendra whatsoever.

LUCY ROTH

Iowa City, Iowa

WATCH LUCY’S STORY

Lucy Roth was a seemingly healthy 2-year-old, until her parents suspected that she had vision problems.

“We would see her playing with toys, and she would drop things,” recalls Lucy’s dad, Damien.

“She would pat around with her hands until she could find the object.”

When screenings elsewhere seemed to indicate normal vision, Lucy’s parents brought her to University of Iowa Stead Family Children’s Hospital. Pediatric ophthalmologists ordered an MRI, after which the couple was asked to meet with a neurosurgeon.

“Why would we be meeting with a neurosurgeon?

That doesn’t make any sense. We were just here for her vision,” Lucy’s mom, Heather, remembers thinking. “A neurosurgery resident pulled up the MRI images. Nothing could’ve prepared us for what we saw.”

“The MRI revealed that Lucy had a massive brain tumor that was pressing on her optic nerve,” Heather continues. “As the images came up, we saw a massive, almost softball-size, tumor.”

The family met with a pediatric oncologist and Lucy was immediately admitted to the pediatric intensive care unit to await surgery that would take place three days later.

During the 12-hour surgery, pediatric neurosurgeons removed a large amount of the tumor, but Lucy lost a significant amount of blood, leading to a stroke that paralyzed the right side of her body.

“It was an extremely difficult, dangerous surgery because the tumor was so big, it had wrapped itself around different blood vessels and was in a very difficult spot of the brain to access,” Damien says. “They had replaced every ounce of her blood in her body two times because she had lost so much blood during the surgery.”

“I just kept thinking, ‘Is this the last time I’m going to see my daughter alive?’” Heather recalls. “It was just excruciating to wait, not knowing whether our little girl would be coming back to us.”

Pathology tests revealed the brain tumor, an atypical meningioma, was cancerous. “This type of tumor usually isn’t seen in children. Lucy’s was extremely aggressive. It had been growing, basically, since she was born,” Damien explains.

Heather recalls, “[Her neurosurgeon] said he had never seen this type of tumor in someone so young in his 40 years of surgery. There was only a handful of children in the world with a similar type of tumor and none of them as big as hers.”

Lucy underwent more than two years of chemotherapy and twice-daily hormone injections to inhibit the tumor’s growth.

“We were able to manage her brain tumor until she was 6 years old,” explains Heather. “Then she had her second brain surgery, and we were so scared because of all the risks involved,” Heather says. “But her neurosurgeons did an amazing job of removing more of the tumor.”

The remaining tumor was treated with 33 consecutive days of radiation and is currently stable, though it will always need to be monitored with routine MRIs. Through physical and occupational therapies, Lucy relearned how to crawl, stand, and walk, and continues to build her strength. Heather adds, “She still struggles daily with the many side effects of her treatments and surgeries, such as chronic headaches, short-term memory loss, hormonal and growth issues, dental issues, and orthopedic issues.”

“We’ve been so thankful to live so close to a world-class children’s hospital where Lucy has access to all the specialists she needs. Over the years, she’s been seen by over a dozen departments and is still followed by most of them,” Heather adds. “We can never thank Lucy’s doctors enough for saving her life and for being so invested in her care as if she were their own child. The nurses, the child life specialists, the University of Iowa Dance Marathon students—all of them have been such an important part of Lucy’s journey. We’ve learned that getting older is a privilege and every birthday is a milestone. Every year that goes by, we can’t believe she’s here with us, and to be such a happy, positive child.”

We’ve learned that getting older is a privilege and every birthday is a milestone.

SKYLAR HARDEE

Hubbard, Iowa

WATCH SKYLAR’S STORY

During a 16-week ultrasound, doctors gave Skylar Hardee’s parents a 1% chance of their baby surviving. The couple went to four doctors in four cities before being referred to University of Iowa Stead Family Children’s Hospital.

“My husband and I were trying for 10 years to get pregnant,” says Skylar’s mom, Rita. “After three miscarriages, we finally said we’re going to take a break, and then after a couple years, we decided to try again. The next month, I was pregnant.”

The ultrasound showed no amniotic fluid, “so we knew something was wrong,” recalls Skylar’s dad, Justin. “They said that without the amniotic fluid, there was no way the baby was getting food—or would ever grow in the womb.”

Rita remembers the doctor saying, “We can barely see the baby, and that’s the reason why we can’t see a bladder. We can only see one kidney, we see multiple defects in his heart; so, you need to go see a specialist.”

“They said that, most likely, there was a chance of survival [of] zero, so at that time they asked us what we wanted to do,” Justin continues.

“They said the best bet would be to terminate pregnancy. We [said], we’re not going to do that.

We have a strong heartbeat. He hasn’t given up on us, we’re not going to give up on him.”

They went to three more doctors in three different cities before being referred to UI Stead Family Children’s Hospital.

“Iowa City was the only place that would actually help us,” Justin recalls.

Rita was scheduled for regular ultrasounds.

“Every two weeks, the ob/gyn team specialists met,” Rita says. “That was great, because every time I came in, they always had a new idea.”

At 32 weeks gestation, she went into labor. The couple drove two hours from their home in Hubbard to Iowa City, where Skylar was born. “[Neonatologist Jonathan Klein, MD] came, told me straight out to just ‘expect the unexpected, and we’ll take it one day at a time,’” Rita recalls.

Skylar was diagnosed with VACTERL association, a rare disorder that affects multiple organ systems. Those can include vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.

“Skylar has six out of the seven,” Rita says. “He had surgery in the NICU [Neonatal Intensive Care Unit] room three days after he was born.”

“They put a vesicostomy in right away,” Justin adds, referring to the opening created between his abdominal wall and bladder. “Then he had a colostomy bag.”

Skylar spent 98 days in the NICU.

“Skylar [went] home with a feeding tube and a cardiac heart monitor, and I would have to take his blood pressure for his kidney every day,” Rita recalls. “It was scary.”

“We wanted to go home, but we were also nervous,” Justin adds. “They basically gave us the support and the knowledge ...they set us up to succeed instead of fail.”

Skylar has had more than 20 surgeries and procedures, Justin says, “and all in all, he looks like a normal, healthy kid.”

Today, Skylar enjoys playing flag football and other sports with the help of a kidney brace—a shirt with pads—and wants to be a police officer.

“My son’s my world, and so this hospital means the world to me,” Justin says. “They gave me my dreams, my hopes. Since I was 18, I’ve been trying to have a son, and they made my dreams come true.”

Iowa City was the only place that would actually help us.

AUBREY BUSSAN-KLUESNER

Dyersville, Iowa

WATCH AUBREY’S STORY

Aubrey Bussan-Kluesner’s parents realized their daughter wasn’t meeting developmental and behavioral milestones, but couldn’t find answers until they reached out to University of Iowa Stead Family Children’s Hospital.

“I told them about what was going on with Aubrey, and they said there wasn’t much more that they could do for her,” Rachel recalls. “I knew I wanted to go somewhere where Aubrey could get the help she needed.”

“She didn’t typically act like [a] kid that age,” recalls her dad, Jesse. “She seemed like her behaviors were just a little abnormal.”

Finally, she reached out to UI Stead Family Children’s Hospital and set up a developmental and behavioral screening appointment for Aubrey.

Aubrey’s mom, Rachel, noticed issues when Aubrey was 4.

“I first started having some concerns about Aubrey when she would just start acting out,” Rachel remembers. “She would just have really bad outbursts, couldn’t sit still, always bouncing around, couldn’t focus on one activity at a time.”

When she started preschool, Aubrey’s teachers also expressed concerns.

“Her teacher [asked me] if she had a learning disorder or if there was something wrong with her. I didn’t know at the time,” Rachel says. “I knew she wasn’t where she was supposed to be at with her peers, but what really got to me was when her kindergarten teacher came to us during parent-teacher conferences and [said] ‘Aubrey is not where she’s supposed to be. She’s behind her peers.’ And when she showed me the graph of where her peers are and where Aubrey is, it was unbelievable. She was so far behind.”

Aubrey’s parents didn’t find answers with her local doctors.

“I knew that if she came to UI Stead Family Children’s Hospital, she’d get the best help she needed,” Rachel says. “You don’t understand unless you have a kid that’s like Aubrey how difficult it can be. I knew going in there that day that she’d get the answers she needed. She saw a whole team of doctors and they tested her. They answered our questions for us.”

Aubrey was diagnosed with a learning disorder, attention deficit hyperactivity disorder (ADHD,) oppositional defiant disorder (ODD,) mixed receptive-expressive language disorder, anxiety disorder, and speech sound disorder. “[We] felt relieved and a little more stressfree because we got a diagnosis. At least then we could try to treat it, and pinpoint it with medication,” Jesse says. “She just seems like a totally different kid. She used to just kind of start something, and she wouldn’t finish it. Now she will start a project, and she will finish it.”

“Since coming here, Aubrey has done a lot better in school—100 percent better,” Rachel adds.

“Her teachers have told me that they see a major change in Aubrey since she started coming to [Iowa City]. It is a complete turnaround, because she’s on the right medication. Without the treatment plan, she would not be where she is today.”

Her medical journey will be lifelong, but today, Aubrey enjoys riding her bike and hopes to become a veterinarian someday.

“She gets bullied sometimes, but at the end of the day, she knows that those kids don’t understand her, and she will always come back with a smile on her face,” Rachel says. “My hopes and dreams for Aubrey as she grows up is that she can become the person who she wants to be and that no one undermines her capabilities.”

We felt relieved because we got a diagnosis.

At least then we could try to treat it.

JEG WEETS

Morrison, Illinois

WATCH JEG’S STORY

Jeg Weets and his family live every day to the fullest since he was diagnosed with a rare, incurable disease.

At 2 years old, Jeg came to University of Iowa Stead Family Children’s Hospital when his local pediatrician recommended he be seen by a pediatric gastroenterologist.

“When Jeg first came to the children’s hospital, he’d been having some issues with fissures on his bottom,” recalls his dad, Brad. He and his wife initially sought answers elsewhere, but chose to travel from their home in Illinois to Iowa City, where Brad has family ties. “My mom went to school [at the University of Iowa], and I actually had open heart surgery when I was a baby. They rushed me to this hospital, and this hospital saved my life. Knowing that they saved my life, I wanted my son to come here.”

“He’d had a couple of tests done, but they decided he needed a colonoscopy,” Brad says.

“Ultimately they decided that he had Crohn’s disease, which was kind of a blow at first.”

“Crohn’s disease is a chronic disease of inflammation in his gastrointestinal tract,” explains Jeg’s mom, Jenna. “For Jeg, it’s definitely the disease that causes the most problems right now.”

His pediatric gastroenterologist noticed Jeg’s spleen was enlarged during a routine visit and pushed for answers. The family met with the pediatric genetics team—the only team of its

kind in Iowa—and through extensive testing, Jeg was diagnosed with Niemann-Pick disease type C (NPC), a rare, progressive genetic disorder in which cholesterol accumulates in body tissues, including the brain.

“Niemann-Pick disease type C is a fatal genetic disorder,” Jenna says. “Slowly, he’ll lose his functions: speech, swallowing. He’ll lose the ability to walk, and cognitive functions will diminish, along with his hearing. He’ll experience seizures, dystonia [a movement disorder in which muscles contract involuntarily] and cataplexy [sudden muscle weakness]. Ultimately, it will take his life.”

“Cholesterol goes in and cholesterol goes out through cells. With NPC, it gets trapped in the cell, and it can’t escape, and it builds up and kills cells,” Brad explains. “NPC takes a normal, happy child and slowly takes everything from them.”

Jeg receives IV infusions every four weeks at UI Stead Family Children’s Hospital and travels to Chicago every two weeks for an experimental drug, considered “compassionate use,” that is administered through a spinal tap.

“There are no FDA-approved drugs for NPC,” Jenna says. “So, we are getting this treatment and hope it will stall this disease and slow the progression and allow the medical advances to catch up, and hopefully provide him with the chance to live out a normal and highly functioning life.”

Jenna and Brad note that only 500 to 600 children worldwide have the disease.

“It’s actually very, very hard to diagnose, and a lot of times kids lose a lot of their abilities before they can diagnose it,” Brad says. “So, were it not for the Crohn’s disease and were it not for this hospital running that DNA test, we would still have no idea, and he wouldn’t be getting the treatment for it.”

Today, Jeg enjoys riding his dirt bike and says he’d like to be a “good race car driver.”

“The hardest part is not having any idea what the future holds. It’s hard because you try to have faith every day and that’s what keeps you going, but no one’s ever survived this disease. Maybe he’s the poster child for the first one to survive it,” Brad adds.

“Our family’s priorities definitely have changed since Jeg was diagnosed,” Jenna says. “We value the small things and the big, and every day is just as important as the last. And he really has given us a whole new meaning to what life is really about. When you get diagnosed with NPC – sometimes referred to as childhood Alzheimer’s – you’re told, ‘go make memories,’ and that’s exactly what we’re going to do.”

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Were it not for this hospital running that DNA test, we would still have no idea, and he wouldn’t be getting the treatment for it.

CHARLOTTE KELLER

Bellevue, Nebraska

WATCH CHARLOTTE’S STORY

At age 3, Charlotte Keller was diagnosed with a rare disease—chronic recurrent multifocal osteomyelitis (CRMO)—after experiencing severe leg pain.

“She just very adamantly started complaining about pain in her right thigh,” recalls her mom, Robin. “[One] night she screamed out in pain because her leg hurt so bad. I took her to an urgent care [clinic], where we started this incredible journey.”

A barrage of tests at their local hospital identified a large lesion through Charlotte’s pelvis and hip, and the hospital team asked Robin and her husband to run infusions for Charlotte at home.

“Twelve weeks in with her infectious disease team, and after many reactions to many different medications, her father and I said, ‘enough,’” Robin recalls. “We accepted the diagnosis of CRMO. From that point on, we had to accept all of these painful days and painful nights as our new normal, because that was now Charlotte’s new normal.”

Robin explains CRMO as a genetic autoinflammatory bone disease.

“He answered, ‘Leukemia has a cure. CRMO has a hope of remission, but there is no cure.’”

“Charlotte’s inflammatory system kind of battles with her immune system, and the end result are these lesions,” she says. “Some of the lesions have caused bone expansion or bone bulging that is absolutely debilitating.”

Still, Charlotte improved with the medical team’s advice.

Charlotte was in severe pain on the four-hour trip from their Nebraska home to their first appointment in Iowa City.

“We were in constant contact with the office because we had to keep stopping,” Robin recalls.

“The minute she was in a room having her vitals done, pediatric rheumatologist Polly Ferguson, MD, was in that room with us.”

Ferguson immediately called for further tests.

A year later, her local rheumatologist referred Charlotte to University of Iowa Stead Family Children’s Hospital.

“She stayed in the clinic that night waiting for those results,” Robin says, adding that Ferguson even cooked soup for Charlotte. “It wasn’t until she knew that our daughter was going to be medically stable that night that she went home.

From that moment on, we knew that we were in the absolute best place we could have possibly been for her.”

“He said, ‘There is someone who sees many, many children with CRMO at UI Stead Family Children’s Hospital,’” Robin remembers. “The fact that she had several patients traveling to see her was already showing us a light at the end of what we thought was going to be a very difficult tunnel to navigate.”

When additional test results came in, another doctor told the couple: “’The good news is Charlotte does not have leukemia. The bad news is Charlotte does not have leukemia.’”

“We immediately thought, ‘Why is it ever a bad thing that it was not leukemia?’” Robin recalls.

“We were not stuck on an island by ourselves anymore,” Robin says. “We were suddenly in an ocean full of knowledge, and it gave us hope.”

When Charlotte later experienced fatigue and other symptoms, she also was diagnosed with Ehlers-Danlos syndrome (EDS), a connective tissue disorder.

“Her ligaments and her tendons don’t hold her joints in place,” Robin explains. “CRMO is a one in a million diagnosis. EDS is fewer than 200,000 cases a year.” Current treatment includes infusion therapy every three months.

“It’s very important for Charlotte to be seen by a team of specialists because her diseases encompass so many different parts of her,” Robin adds. “To be able to truly treat her as a whole person, she needs that expertise. It is, hands down, the best care that our daughter could receive anywhere in our country.”

Today, Charlotte enjoys skating, swimming, and yoga.

“She is resilient, and she is just an absolute warrior,” Robin says. “She has absolutely taught me that perseverance really is a matter of perception.”

“

It is, hands down, the best care that our daughter could receive anywhere in our country.

COOPER LEEMAN

Radcliffe, Iowa

WATCH COOPER’S STORY

Cooper Leeman was a healthy 14-month-old when he experienced breathing difficulties and started vomiting frequently. His condition worsened, and his local hospital diagnosed him with dilated cardiomyopathy, a disease in which the heart does not pump blood adequately.

Cooper had been on the heart transplant list for two years, when a test in January 2017 revealed that his heart function had inexplicably improved.

While his heart improved, he was on lung support for 30 more days before another decision had to be made.

Laurel recalls receiving the news from his pediatric cardiologist.

“We talked about end-of-life care,” Laurel says.

When his heart function continued to decline, Cooper was transferred to University of Iowa Stead Family Children’s Hospital, where he was placed on the heart transplant list.

“He said, ‘I have no reason why, except, between the medication, the heart just reformed itself and his body grew into it,’” she says. “When they told us that he didn’t need a heart transplant, it was a lot to process.”

“Dilated cardiomyopathy is when the heart is too large for the body, and it doesn’t work properly,” explains Cooper’s mom, Laurel. “It affects his breathing and his energy, his appetite, just his whole body system. Their capabilities [at our local hospital] were beyond them, and they knew that we needed the experts at the University of Iowa.”

While he waited for a new heart, Cooper had a stroke during a heart procedure.

“He had stopped breathing, and they had to do five minutes of CPR,” Laurel recalls. “He got some medications to help, and his heart was able to restart on its own.”

Cooper’s care team has consistently kept the family informed, his dad, Brandon, adds.

“When they told us everything that was wrong with him, it was quite a rush of information,” Brandon recalls. “They just did a really good job expressing their concerns and always having time to listen to our concerns.”

Although he was taken off the transplant list, Cooper still had health issues.

The stroke, however, left Cooper with cerebral palsy and seizures.

“Shortly after his echocardiogram came back normal, we were referred to ENT [ear, nose, and throat] because we noticed his sleeping wasn’t great, and he just seemed to be really tired,” Laurel remembers.

“Initially, he was a walking, talking, normal healthy 14-month-old, with a vocabulary,” Laurel says.

“He basically regressed back to a newborn. He wasn’t smiling, he had zero facial expressions.”

His swallowing and vision also were affected.

Since then, Cooper’s mother says, “his brain is just having to rewire itself.”

His tonsils and adenoids were removed, but after surgery, Cooper had breathing difficulties when his lungs collapsed. An advanced form of life support called extracorporeal membrane oxygenation (ECMO) was used to pump and oxygenate Cooper’s blood outside his body, allowing his heart and lungs to rest.

“They said that we have one last option, and that was to use surfactant.” Surfactant is a liquid made by the lungs that keep the airways open. “They believe [after his operation] that he had a pulmonary edema, and it flushed all the surfactant out of his lungs. So his lungs were just sticking to each other like glue.”

Typically, surfactant is used with premature infants. Because Cooper was 4, he required a higher dose, which almost exhausted the hospital’s supply, causing his doctor to lobby for more.

“We trust his team. I can’t even count how many specialists he has, and to have them all in one facility is just awesome. We truly believe without them and their expertise and willingness to work and look outside of the box, we would not have Cooper today,” explains Laurel.

Today, Cooper loves to laugh and enjoys school.

“Cooper’s taught me to never give up,” Brandon says. “Even if all the things that could be going against you, if you keep fighting, it’ll turn around.”

“

Their capabilities [at our local hospital] were beyond them, and they knew that we needed the experts at the University of Iowa.

KID CAPTAIN Changing Medicine. Changing Kids’ Lives.®

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