Category Archives: Patient stories

Cancer patient reflects on diagnosis — 20 years later

This is part one of a four-part series written by Ted Sibley, a former Children’s patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.

Part 2: Cancer delivers another blow

Part 3: Cancer-patient-turned-doctor adds new title: Dad

Part 4: ‘I’m a cancer survivor’

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD

There are moments in life that define us, change us and shape who we are. Sometimes you can see these moments coming a mile away. You can brace yourself for the impact, the change it will have on your life, and prepare for its arrival. Other times, such moments come out of nowhere and hit you hard, like a punch in the gut. And, suddenly, you find yourself going down a different path than you thought you would, while struggling to make sense of what just happened. This first happened to me when I was 13. Twenty years later, I still feel the ripple effects.

On May 18, 1995, I was a typical teenage boy finishing seventh grade, trying to navigate both the awkward teenage years and the hallways at school. I played every sport I could and was preoccupied with a newfound attraction to girls — and hoping they didn’t notice the latest pimple to surface overnight. I looked forward to a summer filled with baseball, swimming and family vacations, just two to three weeks away.

Over the past year, I noticed a dull ache in my stomach but never gave it much thought. It wasn’t bothersome until I ate lunch. I waited out the cramps. But I started having more-frequent cramps and stomach aches. I made a daily habit out of drinking Pepto-Bismol before and after school. I didn’t tell anyone about what was happening, until one morning.

I remember waking suddenly, as if I had been struck with a baseball bat to my chest. I couldn’t breathe, and the pain was sharp and intense. It woke me from a dead sleep at about 6 a.m., and it didn’t go away. I stumbled to my parents’ room and tried to tell my dad what was happening.

“I… can’t… breathe…,” I managed to grunt before passing out in the hallway next to my parents’ bedroom.

I remember hearing my mother rush to my side and scream my name and feeling her touch my face. I remember hearing my father call 911. And I remember feeling helpless, lying there in the hallway. Although I never fully lost consciousness, I was not able to keep my eyes open, and I couldn’t move my arms or legs. Slowly and gradually, I came to and was able to sit up in the hallway when the paramedics arrived.

After the paramedics took my vital signs and I was able to stand up and eat breakfast, we determined that maybe it had been a fluke. Maybe I’d eaten bad food the previous night, or maybe I was anxious about the end of the school year. We decided to skip the emergency room and go to our local urgent care to rule out anything serious.

We told the physician my story, and he gave me a pat on the back and told me that it sounded like a virus or maybe that I had been nervous about something, but that we should get a chest X-ray, just in case. After my X-ray, I provided a urine sample. When I returned from the restroom, I passed the examination room and saw the physician talking to my father. The doctor looked very serious, and my dad had tears in his eyes. I thought to myself, “What a strange sight.” My dad rarely cried. I knew they weren’t talking about me because I felt fine.

When I entered the room, the physician started asking me a lot of strange questions. “Have you lost weight? Do you have frequent nosebleeds? Do you sweat a lot at night? Any strange aches or pains?”

I was confused about why he was suddenly asking all these questions. And why did my father look as though he were about to cry again? I kept saying “no,” until he asked me about aches and pains. After I told him about my stomach aches for the past year, he nodded his head and showed me the X-ray. It was my heart, lungs and bones. But there was something else: round balls in my lungs. And I knew from watching medical TV shows, that besides a heart, one should not have round balls in one’s chest. He sat down next to me and told me that he thought I had some type of metastatic cancer in my lungs and that I needed to go to Children’s Hospitals and Clinics of Minnesota.

The next week was a whirlwind of tests, CT scans, lab work while specialists tried to figure out what was happening. My family wanted answers; I emotionally shut down. After hearing I had cancer, I had so many thoughts and feelings. I was angry at the doctor who broke the news. Who was he? Didn’t he know that I felt fine and was really looking forward to summer baseball? I didn’t want to talk to anyone. Why would anyone know what I was going through? And why were they all being nice to me with smiles on their faces? I didn’t know them, and they didn’t know me.

subscribe_blog“Once they do the right test and find out that I don’t have cancer, I can just go back to being who I am,” I thought. I wasn’t the kid who needs chemotherapy and loses his hair. I was the strong one, and everyone else needed to figure that out.

But, truth was, I wasn’t as strong as I thought. After the tests and exploratory surgery, we held a family meeting. I had choriocarcinoma, or germ cell cancer. They believed it somehow had started in my liver and moved to my intestines, kidneys and, finally, my lungs. The largest area was the size of a softball in my liver, which was most likely what I had felt growing inside of me all the previous year. Not only did I have cancer, but I had metastatic cancer. I sat in that bed while the oncologist presented a plan to aggressively treat the tumors. When he was done, he turned to me and asked if I had any questions. After a moment, I turned to him and said, “Yes. Can you leave?”

Soon after, I started chemotherapy. Within the first couple of days, I started to feel weak and tired. I underwent chemotherapy before the anti-nausea drug Zofran existed. Every day was a struggle with constant nausea and vomiting. My tumors secreted the same hCG found in pregnant women — except at an accelerated rate. Every day, I found myself with intense food cravings, followed by horrible nausea and vomiting. I lost significant weight because I was unable to eat. All of my nutrition came through IVs, and even the smell or sight of food made me feel sick. Like other children receiving chemotherapy, my hair fell out. Once a strong and healthy 13-year-old boy, I looked as thin as a rail. My blood counts dropped with every round of chemotherapy, and I was unable to leave my hospital room for weeks and months at a time. Whenever I would get a pass to go home, I ended up with a fever, returning to the same room from which I had just been discharged.

Sibley was diagnosed with cancer in 1995 at age 13.

Sibley was diagnosed with cancer in 1995 at age 13.

Cancer had taken my childhood. All my dreams for the upcoming year quickly vanished before I had time to adjust. I went from a teenager enjoying school, sports and friends to one who was contemplating life and mortality. Was this the last year I would see my family? Was seventh grade the last time I would enjoy my friends at school? Did I just have my last Christmas morning, never to experience the joy of family togetherness again?

But, while my body was breaking down and using every bit of energy it had to fight the cancer and withstand the toxicity of chemotherapy, something else inside was changing. I decided to live what life I had left. I found joy in visits from my family and friends and looked forward to phone calls and letters. I made new friends in the physicians, nurses and techs in the oncology unit. I found myself laughing and even smiling when they were around. Instead of being angry with God about what He had done to me, I found strength, even when my body was too weak to leave the bed.

Throughout that year, my attitude changed about being a “cancer kid” — and so did the treatment results. CT scans showed the tumors were shrinking and the chemotherapy was working. My family and I could talk about future plans and family vacations that we wanted to share together, when just months earlier we avoided discussing such things. We celebrated small victories, cheered when I finished each round of chemotherapy, and found strength in our faith and each other — all while appreciating each day we had been given. At long last, it was time for my final surgery to remove the largest tumor in my liver, and within a short time I was discharged to return home for good.

The next six months were critical, and the medical team that had fought so hard to keep me alive during my treatment fought even harder to make sure there would be no recurrence of the cancer. They ordered CT scans, lab work and imaging studies nearly every week, looking for any evidence that the cancer had found another hold in my body. We discovered that although the chemotherapy had done an excellent job shrinking the tumors, it also had left scars that would not easily be undone. I was left with hearing loss, kidney damage causing high blood pressure, and severe peripheral neuropathy. I had to learn to walk again, how to hold a pencil and write again, and, eventually, how to run again.

I spent more time with physical and occupational therapists relearning body movements and coordination than I had lost from a year of chemotherapy. But, during it all, my goal was clear. I would enjoy the gift of life that I had been given and completely beat cancer. All of it. Not just the surgeries, not just the chemotherapy, not just the daily nausea and vomiting, or even the struggle to walk again. Cancer had almost taken all of it from me, and now I would get my whole life back.

Sibley excelled at football.

Sibley excelled at football in high school.

During the next five years, I eased back to full-time school. I learned to walk and write without special adaptive equipment, and my hair grew in (albeit a little different). I was able to participate in, and succeed at, high school athletics as the starting linebacker on the varsity football team. I also flourished in academics, and I had numerous offers from colleges and universities to continue my education.

I was officially labeled “cancer-free” on May 18, 2000, at the end of my senior year, five years after my cancer diagnosis. I had done it. I had beaten cancer and had my entire life to look forward to. After everything I had faced during my treatments, all that I had endured during my rehabilitation, and all the obstacles that I had overcome, nothing could stand in my way. After all, I had beaten the very thing that had brought me face-to-face with death.

Cancer had thrown its punches, but it failed to knock me out. I was done with cancer and ready to put it completely behind me. That is, until it sucker punched me again, reminding me of that fateful moment when I was 13. Cancer would not leave me as I had left it. When I least expected it, deep wounds returned to the surface.

Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.

Hearing aids expand 9-week-old boy’s world

Clockwise from bottom: Elijah Cook, born Jan. 2, mother Ahavah, sister Evelyn and father Jason (Photo courtesy of the Cook family)

Clockwise from bottom: Elijah Cook with mother Ahavah, sister Evelyn, 7, and father Jason. Elijah was born Jan. 2 with severe-profound sensorineural hearing loss. (Photo courtesy of the Cook family)

Jimmy Bellamy

After Ahavah Cook’s baby, Elijah, was diagnosed with profound hearing loss shortly after his birth, the Andover, Minn., mom thought she’d never hear sweet coos and sounds produced by her beautiful newborn.

Elijah Cook was born Jan. 2 at Mercy Hospital in Coon Rapids. Twelve hours later, he failed his newborn hearing screening. Nurses downplayed the result, reassuring Ahavah and husband Jason that it was common for babies to fail the first hearing test only to pass the 24-hour follow-up exam.

But that, and a third test with an audiologist, yielded the same result.

“We could see there was a good chance that he wouldn’t pass additional tests,” Ahavah said. Though she and Jason had been optimistic, the couple knew that hearing challenges were a possibility with their son. Both of their mothers and fathers are deaf, and Jason has no hearing in his left ear. “When Elijah came back (from the first test), we were expecting good news because we have almost a dozen nieces and nephews that have no hearing issues.”

The hearing aid Elijah wears in one of his ears, with a quarter to show scale

The hearing aid Elijah wears in and around one of his ears, with a quarter to show scale

After the three failed tests, the Cooks were referred to the developmental and rehabilitation program at Children’s Specialty Center, connected to Children’s – Minneapolis. There the Cooks met with Lori Johnson, AuD, for another hearing exam.

“We had a lot of time to ask questions,” Ahavah said, “and from that moment all of our worries went away.” Though the Cooks didn’t get the results they wanted, Ahavah said, they felt more knowledgeable about Elijah’s diagnosis, which is severe-profound sensorineural hearing loss. While it is likely genetic, upcoming tests will confirm that.

“Lori has been great. Overall, I give her a 20 out of 10,” Jason said. “She answered all of our questions and gave us more time than was allotted.”

On March 5, Johnson fit then-9-week-old Elijah with tiny hearing aids that allowed him to hear his mother — and the world — for the first time. The moment was captured on video.

“The first time I saw him blink, I had a lot of emotions,” Ahavah said. “I was trying really hard not to cry. I didn’t want him to see me cry. I was trying hard to keep it together and just talk to him.”

Since then, Elijah has been cooing, smiling and responding to the sounds made by his family, including big sister Evelyn, 7.

Elijah with his mother, Ahavah, shortly after his birth (Photo by Tres Belle Studio)

Elijah with his mother, Ahavah, shortly after his birth (Photo by Tres Belle Studio)

“The cooing is the big thing,” Jason said. “He wasn’t very talkative, but ever since he was fitted for his hearing aids he’s cooing more, he pays more attention.”

The goal for audiologists is to have infants with hearing loss fit with hearing aids when they’re a couple weeks or months old. If babies don’t pass their initial and follow-up screenings, and get referred to Children’s immediately, it’s common to be fit at 2 or 2½ months. Elijah was fitted early because of his family history and parents’ timely follow-up, Johnson said. The youngest child she has fit with hearing aids was 2 weeks old.

“The hard part with Elijah and the severity of his hearing loss is you really don’t know (if he can hear) until he can give you cues — looking around for sound, searching with his eyes,” Johnson said. “Computer technology lets us know if he should be able to hear sounds.

“Once he’s sitting up, at around 7-month age, we’ll know for certain what he’s hearing with the hearing aids on as he will be able to respond for a behavioral hearing test, and that’s true for any child with any degree of hearing loss.”


USA TODAY / KARE 11: Baby hears mom for first time


Elijah with hearing aids

Elijah was fit for hearing aids at a young age because of his family history and parents’ timely follow-up.

Early diagnosis and fitting combined with the technology and medical procedures available today — hearing aids, cochlear implants and bone conduction hearing aids — allows children with hearing loss a life with limitless possibilities.

Johnson said any child diagnosed with hearing loss and fit with hearing aids before 3 or 6 months can do anything as long as hearing-aid use is consistent.

“The big thing to take away in the case of Elijah and every other case is the earlier we can get diagnosis and family into early intervention and get started, you can have some really great outcomes,” she said. “But it’s really about the early detection piece of it.”

Jason and Ahavah said their experience growing up in the deaf community and seeing struggles will provide their son advantages. Many of their family members are fluent in American Sign Language (ASL) and are helping educate and sign to Elijah.

“Every parent wants the best for their kid. I just want to be able to equip him to handle life’s challenges,” Jason said. “I want to make sure he can overcome them and succeed.”

The Cooks encourage others with children born with hearing loss not to wait to do early invention and evaluation.

“Let other people help you because it’s overwhelming,” Ahavah said. “There are a lot of additional appointments. Get the help that you need.”

Elijah and big sister Evelyn

Elijah and big sister Evelyn

subscribe_blogSo how has that cooing been since Elijah received his hearing aids? It has been music to his mom’s ears.

“I kind of lost hope that I would get that milestone,” Ahavah said, “but it’s pretty cool that the hearing aid is able to help us bring it back.”

“That’s really the reason why I do my job; it’s for the parents who have children with a hearing loss and want their kids to develop speech and language,” Johnson said. “My goal is to give that to parents whenever possible.”

Children’s Hospitals and Clinics of Minnesota has audiology services through ear, nose, throat (ENT) and facial plastic surgery as well as the developmental rehabilitation program. Children’s has comprehensive care for hearing loss, from screenings to hearing-aid fittings to cochlear-implant surgery through follow-up audiology and speech pathology.

“Children’s Pedcast,” Episode 3: Nicole Skaro and Dr. Anne Bendel on parents’ roles on care team

Episode 3 coverDr. Anne Bendel, the director of neuro oncology at Children’s Hospitals and Clinics of Minnesota, and Nicole Skaro, the mother of Victor “Valiant Vito” Skaro, discuss the importance of establishing a strong relationship between the doctor and patient family as well as parents’ roles as members of a child’s care team. Vito was diagnosed with medulloblastoma in August 2014, when he was 11 months old. Nicole and Dr. Bendel share what questions parents should ask when facing a life-changing medical diagnosis.

Listen to “Children’s Pedcast” on iTunesPodbean, Stitcher, YouTube and Vimeo.

Children’s patient has brain tumor removed, wakes up a new person

Elizabeth Johnson Camozzi

Elizabeth Johnson Camozzi had a tumor removed from her right cerebellum in 1997 when she was 12 years old. (Photos courtesy of Elizabeth Johnson Camozzi)

Elizabeth Johnson Camozzi

I was a shy and awkward girl at 12. Sweet and uncomplaining, worried about what others thought, I was the picture of the normal “tween” identity. I also was quite sick.

Frequently, the routine was migraine, nausea and head to school after vomiting. My parents took me to see several specialists, some touting that I had allergies to chocolate, the sun, the color red. But I continued to be sick, and it seemed a natural part of my life.

There were parts of my daily routines that I believed everyone had. Every night, I would imagine hearing monsters thumping up the stairs to say goodnight to me.

Thump, thump, thump, thump.

Elizabeth with Dr. Mary Beth Dunn in 1997

Elizabeth with Dr. Mary Beth Dunn in 1997

As a musician, I would compose music to that steady thumping. During piano lessons, I would play at the same tempo, quarter note equaling 65 beats per minute. My music was always a very steady sound, driven by the thumping that I assumed everyone heard in their ears. During a math lesson in which we took our heart rates for one minute, I was confused as to why others had to hold their wrists and count what they felt for the time; I could hear my heartbeat plain as day!

After a family trip the winter of my seventh-grade year in 1996, my parents took me to get my eyes checked because I had double vision. As the eye doctor was peeking at my pupils, he paused and called an opthomologist, who referred me to a neurologist. I clearly remember the neurologist saying to her medical students, “You do not want to see this when checking your patients.” She called and scheduled me an MRI for that night, and we went straight over. Immediately after, my parents were called into a side room and quickly invited me inside. I had a pilocytic astrocytoma brain tumor that had taken nearly my entire right cerebellum. I was going to need surgery the next morning.

That night, I prayed for God’s will to be done — a hard prayer for a 12-year-old, but I knew that this was out of my hands. This brain tumor was why I was sick. Would I feel better afterwards? The doctors warned my parents that the chances of me coming out with disabilities would be high. I might lose right-arm and leg function as well as acquire a dropped eye and might not be able to function like a normal 12-year-old. My parents were beside themselves.

Elizabeth Johnson Camozzi in 2014-15

Elizabeth Johnson Camozzi in 2014-15

The next morning, we met Dr. Mary Beth Dunn, who was to be my surgeon, as well as Dr. Joanne Hilden, my oncologist. On Friday night, both neurosurgeon partners, as well as both pediatric head surgical nurses, came in for my surgery on what would not normally be a surgery night. My surgery, considered an emergency, was that afternoon, and it lasted until early morning the next day when I was wheeled into my recovery room in the pediatric ICU.

My mother waited with me until I woke up. My first memory was my mom singing “Hush, Little Baby.” I began to wake as she began the song, “Hush, little baby, don’t say a word. Mama’s going to buy you a mockingbird. If that mockingbird don’t sing…” At this point she paused and I began to remember a comedian that my brothers and I had watched who sang the same song with silly lyrics. Before she could sing any more, I chimed in with my scratchy post-surgery voice, “Mama’s going to tear off its little wing.” Between laughter and tears, my family celebrated my awakening.

I awoke a new person. Not only did I remember my family and silly TV shows, I woke up smelling new smells, seeing colors better, hearing sounds clearer. When Dr. Dunn asked how I was feeling, I responded that everything just seemed better. Without a brain tumor pressing on my ear drum and threatening my life at every heartbeat, I felt lighter and more able to perceive the world around me. I woke up a happier, livelier version of myself, and have not stopped since waking up!

The scar left behind after Elizabeth Johnson Camozzi's surgery is her most beautiful feature, she says.

Elizabeth Johnson Camozzi said the scar left behind after her surgery is one of her most beautiful features.

subscribe_blogMy recovery was quick, and within 10 days I was back at school. Having staples down the back of my head made me a bit of an oddity in middle school, and I was teased relentlessly. Children’s Hospitals and Clinics of Minnesota stepped in with a social worker to explain what I had gone through and the medical background to my teachers (and to explain why I shouldn’t play basketball with an open skull). Our relationship with Dr. Dunn and the staff at Children’s continued to grow and flourish. I spent summers at Camp Mak-A-Dream in Montana among other children who were in the throes of, or recovering from, cancer and leukemia. At any point when the doctors informed us that I could not do something, I would do it — play the piano, balance on a balance beam, memorize sonatas. I did, however, cross skydiving off of my bucket list (scuba diving, considered dangerous, was offered in the safety of camp Mak-A-Dream!).

Now 30, I owe my life to Drs. Dunn and Hilden and the staff at Children’s. I feel as if a part of me did not begin until I went into the operating room. When I see Dr. Dunn to this day (18 years later!), she still looks at my scar and smiles. A perfect line down the part line in back of my head, my scar is one of my most beautiful features; it tells a story of survival and hope.

Woman to honor late grandson at Twin Cities Marathon

Team Superstars' Robyn Steinbrueck is running for her grandson, Rowan Peterson, who died March 2012. (Photo courtesy of Robyn Steinbrueck)

Team Superstars’ Robyn Steinbrueck is running the Medtronic Twin Cities Marathon for her grandson, Rowan Peterson (pictured), who died March 2012. (Photo courtesy of Robyn Steinbrueck)

This is the first in a regular series about Team Superstars runners who will participate in the Medtronic Twin Cities Marathon on Oct. 4 on behalf of Children’s inaugural charity running team. Learn more.

Robyn Steinbrueck

What do you think of when you hear “Children’s Hospitals and Clinics of Minnesota”? To me, Children’s is a place that played a beautiful and integral part of my family’s life in March 2012.

It was a Sunday I will never forget. I was having my lunch when the phone rang. My daughter, Katie, was calling to tell me news no one wants to hear. My 21-month-old grandson, Rowan, had gone into cardiac arrest. After 35 minutes of the paramedics trying to revive him, they got his heart beating, and he was on his way to North Memorial Medical Center. After frantically driving to pick up his twin brothers, Josh and Holden, we learned that Rowan had been transferred to Children’s. I knew immediately that no matter the outcome, he would receive the best care.

As the day transpired, and we arrived at the hospital, we were hopeful but realistic. Being without oxygen or a heartbeat for that long could not be good. Our worst fears were realized when the doctors told us that indeed Rowan’s brain was badly damaged from the oxygen deprivation. The doctors and nurses were absolutely fabulous as they walked my daughter and her husband, Taylor, through the last day of Rowan’s life. They were treated with incredible compassion and respect as they made decisions that no young parents should ever have to make. As each family member came to say goodbye to Rowan, we were shown such love by the staff, especially the nurses. Their final gift to Rowan was a beautiful quilt that his body was wrapped in after he died. Even in death, the thoughtfulness of Children’s shined through. Although our family was only at Children’s for a little more than a day, the memory of their care will stay with me for a lifetime.

I began running in 2002, so after Rowan’s death, it was good therapy for me to hit the pavement. As the miles passed under my feet, I found great comfort and the “road was a good listener.” Knowing that I had increased my mileage as a way to deal with the grief and its aftermath, my brother encouraged me to run a half-marathon with him. I thought that there was no way I could do it, but I am very competitive, so I took him up on the offer. I ran two half-marathons that year, and I loved every minute of it!

Grief comes in waves, and it really hit me hard in late 2013, so I increased my running. Somewhere in all those miles, I decided that I wanted to run the Medtronic Twin Cities Marathon. Fast forward to October 2014, and as I was lining up in downtown Minneapolis, I looked up and saw Hennepin County Medical Center, the hospital where Rowan was born. Tears filled my eyes as I realized that I was actually doing this and that I had made it through this challenge. So on Oct. 5, I completed my first marathon! To say it was one of the best days of my life would be an understatement. The crowds, the course, the weather and my family all came together that day. I knew as soon as I crossed the finish line that I would do it again.

subscribe_blogOne of the most inspirational parts of the Twin Cities Marathon is the charity teams. Not only do they support each other through training and raise funds for their cause, but they are there for each other throughout the race. I knew that I had to be part of a team. When I heard about Team Superstars, there was no doubt in my mind that this was for me; what a great way to honor the memory of my grandson, Rowan, and to show support for Children’s.

So, my “Team Superstars” adventure begins. I am excited to raise funds and to be part of an awesome team. I look forward with great anticipation to Oct. 4, when I will run the Twin Cities Marathon as part of Team Superstars. I know that Rowan’s memory and spirit of Children’s will be with me the entire way.

Support your favorite Superstar’s fundraising efforts by giving today.


Wisconsin boy overcomes tumor inside heart

Doctors discovered a tumor inside the heart of Cole Eckes, 4, of Hayward, Wis., when he was an infant. (Photos courtesy of Kylah Eckes)

Doctors discovered a tumor inside the heart of Cole Eckes, 4, of Hayward, Wis., when he was an infant. (Photos courtesy of Kylah Eckes)

Kylah Eckes

Three-year-old Tara was excited to become a big sister. Cole was perfect when he was born; he had beautiful skin, bright eyes, and long fingers and toes.

He was perfect.

Little did we know, there was something imperfect about our baby boy.

When Cole was 12 weeks old, he had a funky cough, so I brought him to Essentia Health-Hayward (Wis.) Clinic to see our family physician. After reviewing the symptoms, our doctor ordered a chest X-ray to determine the problem. Of course, I cringed at the thought of my baby having pneumonia. Cole also had mild pectus excavatum — a sunken-in chest — so an X-ray would help monitor, too.

As I left the clinic, I told the receptionist that I was worried about pneumonia. In hindsight, we would have given anything for the diagnosis to have been pneumonia.

We spent most of the next 12 days at Children’s – Minneapolis, meeting people with titles we didn’t know existed. We waited for an official diagnosis and to meet someone who knew what to do. Cole underwent all kinds of tests, imaging and exams. Ultimately, the diagnosis was cardiac fibroma, a rare tumor of the heart. One day during morning rounds, we heard one of the cardiologists tell the other specialists that the main potential side effect of the mass is “sudden death.” Those words still ring loudly in my ear. Cole is only the 21st living case of this type of tumor, so there wasn’t much data to help lead the specialists. The surgeons didn’t want to perform surgery to remove the mass because of its large size — same size as his heart — and location — inside the back wall of the left ventricle. Surgery was too risky, and the tumor wasn’t impeding on the functions of the heart, so we just had to “keep an eye on it.”

Cole had surgery Feb. 8, 2011.

Cole had heart surgery Feb. 8, 2011.

At Children’s – Minneapolis, my husband, Zac, and I learned infant CPR and how to use an automated external defibrillator (AED). We received two AEDs but were terrified to bring Cole home, an uncomfortable three hours away.

Over the next five months, every nap that lasted a bit longer than normal sent my mind racing; I was scared to go in and check on Cole. During that period, we gave Cole antiarrhythmic medication every six hours and saw his electrophysiologist, Dr. Chris Carter, regularly.

On Dec. 26, 2010, when Cole was 7 months old, he experienced ventricular fibrillation, a rapid heartbeat, at home. Zac administered CPR and used our AED to put Cole’s heart back into normal rhythm. Cole was flown to Children’s that night.

He went into v-fib, again, four days later.

“Dr. Blue, fourth floor, CVCC,” the voice over the intercom said.

That was a call for our son. The staff at Children’s seemed to come out of everywhere, flooding Cole’s room with the best team for which parents could ask. Zac and I stood in the hall as they worked on Cole for 55 minutes. One of the intensivists informed us that it was time for us to make a decision: ECMO (extracorporeal membrane oxygenation), a type of life support; or end resuscitation. No one knew how Cole would respond to ECMO. There was no guarantee Cole would survive, and, if he did, everyone was unsure about the status of his cognitive functions. We couldn’t give up on him, so we chose ECMO.

For four days, Zac and I watched the staff care for Cole. All we could do was kiss his cold forehead and hold his cold little hand. Cole slowly was weaned off of ECMO, although it was discovered that he suffered numerous strokes and bleeding in the brain.

It was obvious that something needed to be done about the tumor. Surgery was scheduled for Feb. 8, 2011, Tara’s fourth birthday.

Life was an absolute roller coaster, but one thing remained constant: the care Cole received from the staff at Children’s. These people became like family to us. We trusted them to care for our son, and they did so with evident care and dedication. They were with us for the highest of highs and the lowest of lows. They stood by our sides when we looked at Cole lying in his hospital bed. We truly felt Cole was in the best hands when we went to the Ronald McDonald House, one floor below Cole’s bed, every morning for breakfast. This is where we spent time with Tara when she came to visit us with other family members.

I remember numerous conversations with doctors that put my mind at ease. I sat for nearly two hours on Cole’s couch, talking to one of the intensivists. She was able to help me understand what was happening.

Kylah and Zac Eckes with children Cole and Tara

Kylah and Zac Eckes with children Cole and Tara

On the morning of Cole’s surgery, we said goodbye to him because no one knew if he would survive surgery. Would his heart be able to function without the tumor? A large group of family members sat with us in the waiting room for eight hours. We received periodic updates from staff we had gotten to know well.

Dr. David Overman walked down the hall a little past 6 p.m. to deliver the most amazing news we could have heard: Cole made it through surgery. Not only did he survive, but he didn’t need the help of ECMO, which was a possibility had he made it through surgery.

Although surgery was over and the tumor removal was successfully, Cole wasn’t out of the woods. The next 12 hours were critical. Nurses spent the night stripping Cole’s tubes to make sure there were no blood clots; their dedication was remarkable. They weren’t just doing their jobs; they were helping a baby they cared about.

We were on our way home 10 days later. Walking out of the doors to the cardiovascular care center was bittersweet. We said goodbye to people who came to mean a great deal to us and thanked them over and over for all of the amazing things they did for Cole and our family even though “thank you” wasn’t nearly big enough to show our appreciation.

Today, Cole is 4 and in preschool, getting ready for kindergarten in the fall. He continues to beat the odds. He has fun playing with Tara and his little sister, Ayda. He loves to golf and is looking forward to start logrolling this summer. He still has an internal cardiac defibrillator (ICD) that was placed during the early part of his stay at Children’s. The ICD continuously monitors his heart rhythms and would deliver a shock if his heart were to have another episode, but we’re hopeful and optimistic that Cole will never need that type of intervention again.


From left: Siblings Tara, Ayda and Cole Eckes

subscribe_blogTara, now 8, participates in Jump Rope For Heart at her school. The annual event raises money for the American Heart Association. She raised more than $2,500 at last year’s event. She tells people about the importance of helping others and paying it forward because so many people helped us when we needed it. Her dedication to helping others landed her on the cover of Time For Kids magazine.

Cole sees his team at Children’s Heart Clinic every six months for checkups. We look forward to these visits to hear good news and to show everyone how far Cole has come. We repeatedly have heard from various staff members that Cole is a reminder to them of why they do what they do.

Holy Angels athlete refuses to let ulcerative colitis knock him down

Scott Lohan, 17, a junior at Academy of Holy Angels, returned to the ice in November after battling ulcerative colitis. (Photos courtesy of the Lohan family)

Scott Lohan, 17, a junior at Academy of Holy Angels, returned to the ice in November after battling ulcerative colitis. (Photos courtesy of the Lohan family)

Brady Gervais

“Fall down seven times. Get up eight.”

Kids are resilient. Scott Lohan is proof.

For the past year and a half, he has been in and out of the hospital and endured lengthy procedures because of ulcerative colitis, a chronic illness in which the lining of the colon becomes ulcerated and inflamed. The combination of inflammation and ulceration causes stomach pain and frequent emptying of the colon.

It’s really painful and, for an active teenager, can be embarrassing. But it hasn’t stopped Scott, 17, from living fully.

“This experience has left me a more appreciative, stronger person,” Scott said. “Day-to-day activities are seen as a gift instead of just a task.”

He was a typical teenager on the honor roll, active in sports, and social when his health went into the toilet. The summer before his sophomore year, he slept all the time. That was the first sign something was off. While sleeping throughout summer break might be normal for some teenagers, it wasn’t for Scott.

Scott began the 2013 varsity football season as a starter for the Stars but wasn't playing much by the end of fall.

Scott began the 2013 varsity football season as a starter for the Stars but wasn’t playing much by the end of fall.

When varsity football began that fall at Academy of Holy Angels, Scott was a starter. Sixty days later, he was barely playing.

But his parents weren’t worried something was seriously wrong until Scott told his mom, Leslie, that he had blood in his stool.

“Mom, is this normal?” he said.

No way, his mom said.

His parents took him to the emergency department at Children’s – St. Paul, where he had a colonoscopy and endoscopy despite normal blood-test results.

He left four days later with an initial diagnosis of ulcerative proctitis – inflammation of the rectum. Despite being on medication for the following six weeks, Scott continued having diarrhea, weight loss, fatigue and bleeding. His care team at Minnesota Gastroenterology urged him to come back to Children’s, where he was admitted again.

subscribe_blogBecause of the bleeding, he was put on Remicade, a chemotherapy treatment that helps treat ulcerative colitis, the diagnosis he ultimately received, and other diseases. He also was prescribed steroids for another six weeks.

Scott’s parents were devastated by the diagnosis, worried their active child may never return to his “normal” life again. But Scott reassured his parents, “I guess I have to just keep grinding!”

He doesn’t lose well, his parents said.

The drugs worked for a few days. Scott went home for Christmas, but he continued to lose weight and experience severe pain. That didn’t stop him from playing hockey, though. A dedicated and determined athlete, he traveled with his parents to and from games so he could sleep. Scott would tell his parents that his medicine was working just so he could play. He wanted a normal life regardless of the disease.

In January, Scott landed back at Children’s. He received a Remicade booster, but the drug didn’t stand a chance. A few weeks later, a colonoscopy and endoscopy revealed that Scott’s colon was basically gone, Leslie said.

“I can’t see my kid decline anymore,” she told his care team.

Minnesota Gastroenterology referred the family to Pediatric Surgical Associates, where Dr. Bradley Linden met with the family to discuss a colectomy. When they left, they didn’t expect to hear back for a week. In just 48 hours, they learned Scott needed surgery immediately.

On March 17, 2014, Scott underwent an eight-hour surgery to remove his colon. He recovered for four days while learning about living with an ostomy bag before going home. Within 12 hours of being released, Scott was back at Children’s with lower-abdomen pain and needed surgery again to remove a blood clot that lodged in his pelvic cavity that caused his kidneys to stop functioning.

Scott's sisters wore ostomy bags in support of their brother.

Scott’s sisters wore ostomy bags in support of their brother.

“He was a hot mess,” Leslie said.

So was she. Her son was in extreme pain. “I had a few ‘Terms of Endearment’ moments,” she said.

When Scott went back home, he was still in hell. He experienced withdrawal effects from no longer being on pain medication. He was angry and had cramps and the shakes, Leslie said.

By summer, he was doing better. He lifted weights with his teammates. He ran. He returned to the ice.

“He made sure he was going to have a normal life, as normal a life he could have with that stupid bag,” Leslie said.

In July, he underwent another procedure for a J-pouch, an internal pouch formed of the small intestine. It stores stool when there isn’t a large intestine.

Scott wears No. 27 for the Stars.

Scott wears No. 27 for the Stars.

By October the bag was removed and J-pouch connected. Scott’s drive, combined with the care and encouragement of the health care team, miraculously put him back in a high school hockey game for the Stars on Nov. 11 after spending 55 days in the hospital in 2014. Thankfully, and unlike last year, he was able to spend the holidays being comfortable and at home.

“Truly by the grace of God, he’s getting through it,” Leslie said.

Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.

Minnesota boy adopted from China born with ‘beautifully created, imperfect heart’

Tovin Kainz, 4, was born with tetralogy of Fallot, a congenital heart defect. (Photos by Kyleen Olson Photography)

Tovin Kainz, 4, was born with tetralogy of Fallot, a congenital heart defect. (Photos by Kyleen Olson Photography)

Brady Gervais

Tovin Kainz’s Chinese zodiac sign is a tiger, a sign of strength.

Born in China with a complicated congenital heart defect, strength is a trait he has demonstrated time and again. He was 3 before he was adopted and a medical team could start repairing his heart.

“Tovin has been extremely brave and courageous throughout his life’s journey; he hasn’t let his medical condition slow him down one bit. He continues to fight and never gives up!” his mom, Jennifer Kainz, of Tracy, Minn., said. “He has taught our family about being strong, both mentally and physically.”

Tovin wasn't operated on until he was adopted at age 3.

Tovin wasn’t operated on until he was adopted at age 3.

When Jason and Jennifer Kainz were preapproved to adopt Tovin, they were aware of his heart defect, tetralogy of Fallot. Unfazed by the diagnosis, they were determined to bring Tovin home to Minnesota and get him the care he needed.

“We went into the special-needs-adoption program knowing that the children on this list needed not only a family but also medical help,” Jennifer said. “Jason and I strongly believe that every child deserves a chance at life. Everyone has something medically wrong with them, but our medical conditions don’t define us.”

Whatever Tovin’s heart condition turned out to be, Jason and Jennifer knew that an amazing medical team was just more than two hours away from their home, waiting to figure out Tovin’s “beautifully created, imperfect heart,” she said. They trusted God, they said, and knew that the medical team would have the knowledge it needed to help Tovin survive this bump on the road of his life.

What Jason and Jennifer didn’t know was that Tovin’s heart condition was worse than originally expected. This sometimes happens when children with a medical condition are adopted outside of the United States, said Tovin’s cardiologist, Dr. Rodrigo Rios. The diagnosis ends up being better or worse than initially thought.

After arriving in the U.S., one of Tovin’s first stops was meeting Dr. Rios at Children’s Heart Clinic. There, tests revealed that Tovin’s heart was on the right (incorrect) side of his body, had L-transposition of the great vessels; pulmonary atresia; a ventricular septal defect; nonconfluent pulmonary arteries and a right aortic arch.

Tovin took his first assisted steps at Children’s after his first heart surgery.

Tovin took his first assisted steps at Children’s after his first heart surgery.

In other words, “he was quite sick,” Rios said. Tovin’s body was blue, a symptom of his heart disease.

A child with Tovin’s condition is frequently diagnosed prior to birth, and surgery to start repairing the heart usually is performed soon after birth, Rios said. Every surgery carries risk, and the optimal time to perform it is when the patient is healthiest and strongest.

Because Tovin was older and already had been living with his condition for three years, he wasn’t as healthy as he would have been at just a few months of age.

But Tovin is strong. He underwent his first surgery soon after arriving in the U.S. and quickly showed signs of major improvement, Rios said.

This past fall, Tovin, 4, underwent his second surgery and was back home recovering just a few days later. It’s anticipated Tovin will have another surgery when he’s older to fully repair his heart. For now, he sees Dr. Rios every six months for checkups.

Tovin lives in southwestern Minnesota with his family.

Tovin lives in southwestern Minnesota with his family.

Dr. Rios said it has been exciting to play a role in Tovin’s care because of the drastic improvement he has made.

“He’s a kid with such a tremendous personality that you just fall in love with him immediately,” Rios said.

Since Tovin arrived in Minnesota — two years ago this month — he has come a long way. When he was adopted, his development was delayed. Tovin wasn’t able to crawl, walk or verbally communicate with his family, Jennifer said.

He took his first assisted steps at Children’s after his first heart surgery, and he has made huge strides since with the help of physical and occupational therapy. Thanks to speech therapy, he has a full vocabulary today.

Tovin loves to be adventurous, farm with his uncle and grandpa and play with his tractors, Legos and trains, Jennifer said. He takes full advantage of living in rural Minnesota. He’s always on the go and defiantly doesn’t sit idly.

“Tovin will limit himself before his heart limits him,” Dr. Rios told Tovin’s parents.

subscribe_blogThe Kainz family has found ways to stay connected to Children’s outside of the hospital. In 2013, Tovin, his older sister, Addison, 6, and his parents donned superhero capes and participated in HeartBeat 5000. Jennifer hopes to run one of the Medtronic Twin Cities Marathon weekend events on behalf of Children’s in October, too.

Getting involved is their way of thanking Children’s for the care Tovin has received.

“We have so much respect for every staff member we’ve worked with at Children’s and are very thankful for the love that each team member has given to Tovin,” Jennifer said. “They’re some of his biggest cheerleaders on his road to becoming the active 4-year-old boy that he is meant to be.”

Tovin's family said he has made huge strides since coming to the U.S.

Tovin’s family said he has made huge strides since coming to the U.S.

Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.

Iron Range boy beats heart problem

Tyler LaMourea, 10, plays football, hockey and baseball. (Photos courtesy of Tara LaMourea)

Tyler LaMourea, 10, plays football, hockey and baseball. (Photos courtesy of Tara LaMourea)

Tara LaMourea

My son, Tyler LaMourea, was diagnosed with tachycardia, a faster-than-normal resting heartbeat, when he was 6 years old. When he sat at home or school, his heart suddenly went from a normal beat pattern of 65 beats per minute to 230.

Tyler could feel his heart rate change from normal to racing. He never got dizzy or fainted, but he would get pale and feel exhausted. There are things that can be done to convert a heart rate back to normal, but they never worked for Tyler. Each time he had an episode his heart rate would climb higher and remain rapid for longer periods of time.

Tyler and his nurses

Tyler and his nurses

One day, I received a call from his school’s nurse and brought him to the hospital’s emergency room, where he would get an electrocardiogram (EKG), electroencephalogram (EEG) and blood work to make sure there was nothing else abnormal. Tyler’s highest recorded heart rate was 230 beats per minute for 2½ hours before it converted on its own. We were in the emergency room when I saw a monitor go from 230 beats a minute to 175 to 65 within three beats.

On Nov. 3, 2014, Tyler, now 10, had surgery at Children’s Hospital and Clinics of Minnesota’s Minneapolis hospital. When we got to the hospital, Tyler was nervous about the surgery — we all were — but all of the people we encountered were nothing short of wonderful, from the receptionist that did our paperwork to the nurses and doctors that took care of Tyler. One of the nurses came into Tyler’s room with the items he was to wear, and in her other hand were two blankets that are donated to Children’s from which he got to choose. Tyler was shocked that he got to keep the blanket. He said the blanket was special to him and he felt better knowing it was in the operating room with him and when he woke up he had it; it was one of the sweetest things to hear from him.

When it was time for Tyler to go to surgery, as parents, my husband, Jeremy, and I were able to go into the operating room with him before it began. Once he started to fall asleep, we left and the team inserted Tyler’s IV.

subscribe_blogWe were in the waiting area, and the nurse who was in surgery with Tyler would call us to provide updates during the 2½-hour procedure. When the nurse called for the last time, she said they were able to find the nerve that caused the issue and cauterized it. To confirm the surgery was successful, the team was unable to replicate Tyler’s rapid heart rate once the nerve was cauterized, which was a relief to us.

The doctor came in to talk with Jeremy and me about the procedure and what to expect in Tyler’s recovery. We live on the Iron Range, 3½ hours from Children’s – Minneapolis, and were concerned about Tyler traveling that far. We were assured that he was going to be OK as long as he lies flat for a few hours after surgery to get the incisions to close. We got into the room after Tyler woke up and explained to him that he had to lie flat. He was excited there was a Nintendo Gamecube in the room for him to use, so he was in good shape to lie down.

We made the journey safely home, and Tyler had to rest for a few days before resuming normal activities. He’s an active boy who plays football, hockey and baseball. His surgery took place at the start of hockey, and he missed four days of practice before he returned to playing. He was sore for about two weeks, but he would say, “It isn’t too bad.”

Tyler returned to hockey after heart surgery.

Tyler returned to hockey after heart surgery.

Nearly three months after surgery, you would never know Tyler had anything done or there ever was a problem. Children’s was the best experience for which we could have asked. Everyone we encountered that day was so supportive and courteous to us. We will never forget the great experience we had as well as how great they were to Tyler before and after his surgery. We all are grateful to everyone at Children’s and couldn’t have asked for anything more. Thank you to the staff at Children’s who help make a stressful situation for families into a positive experience.

From hopelessness to triumph: Eliana’s battle with chronic pain

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Cami Vogt

Our story is not one of acute trauma or even an emergency. For some it may seem less than dramatic. But we hope our story will give courage and hope to all those other parents who cope with chronic illness in their child.

Our story is of a long journey; it tells of the amazing fortitude of one little girl, the perseverance of her siblings and the compassionate and enduring care of a team of experts.

Eliana, 8, visited Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

Eliana, 8, visits Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

We came to the pain and palliative care clinic at Children’s Hospitals and Clinics of Minnesota in January 2013 after two lonely and frustrating years of trying to find out the source of our little girl’s pain.

Eliana, then 6 years old, suffered almost constantly from severe headaches, stomach pain, deep body aches, chest pain and debilitating fatigue. We sought out every specialist we could think of, but there were no answers, and no freedom from her suffering. When our neurologist at Children’s, Elizabeth Gilles, MD, gave us the opportunity to consider this unique and groundbreaking clinic, we were skeptical. We had tried so much and were so tired. But we knew we had to try — for Eliana.

And so we found hope. That hope came from a team of experts who were willing to rally around not just Eliana, but our entire family. They showed us that they understood that chronic pain affects the entire family, not just the child. They validated her pain, our experiences and fears. They also gave us a diagnosis: chronic pain disorder.

Eliana continues to battle chronic pain and improve.

Eliana continues to battle chronic pain and improve.

But most of all, they showed us the effectiveness of what a team of specialists in pediatric pain could accomplish. At any one time, we may have up to five people from the team working with us. That lonely feeling of the past is gone; it’s amazing how much stronger you can be when you’re not alone.

We still are on this journey. Eliana has turned two whole years older since we first arrived at the clinic, which celebrated the grand opening of its new space this month. She has worked so hard and gotten so much better. But chronic pain in children is complicated and requires perseverance. The true hero in this story is our Eliana Faith, and we stand in awe of her fortitude.

None of this would have been possible without her amazing pain team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic. We are indebted to Stefan Friedrichsdorf, MDKavita Desai, Ph.D; physical therapist Andrew Warmuth, nurse Donna Eull, massage therapist Candace Linares, social worker Cindy Daughtry and receptionist Alison McQuade (our first line of defense!).

Thank you for believing in us, for partnering with us and for giving us hope. Let the journey continue — together!


About the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at Children’s – Minneapolis

Pain of any kind not only is disruptive to the life of a child, but also to the child’s family. Children’s has the largest, longest-running pain and palliative and integrative medicine program in North America. Children’s combines the best and most-appropriate pain medicines with the best integrative therapies (like massage, aroma therapy and biofeedback) to help alleviate kids’ pain. The pain clinic is made up of a diverse group of providers, including doctors, nurses, physical and massage therapists, psychologists and social workers – all of whom rally around children and their families so they can heal.