Category Archives: Patient stories

Surgery for ear tubes common for kids

Lindsey Starsky's children, daughter Margie Claire (left), 4, and son Lewis, 10 months, had ear-tubes surgeries at Children's. (Photos courtesy of Lindsey Starsky)

Lindsey Starsky’s children, daughter Margie Claire (left), 4, and son Lewis, 10 months, had ear-tubes surgeries at Children’s. (Photos courtesy of Lindsey Starsky)

Lindsey Starsky knew exactly what to expect when her 10-month-old son, Lewis, underwent surgery for ear tubes earlier this year. Starsky’s oldest child, daughter Margie Claire, had gone through the same process not long ago.

Both kids had ear tubes put in by Barbara Malone, MD, at Children’s Hospitals and Clinics of Minnesota. Dr. Malone is a pediatric otolaryngologist, which means she specializes in ear, nose and throat (ENT) care.

“Children’s was very accommodating and great with the kids,” said Starsky, who was referred to Dr. Malone through her kids’ primary pediatrician. “Child life specialists were brought in to introduce what was going to be happening.”

Every year, more than 500,000 kids receive ear tubes, making it the most common childhood surgery performed with anesthesia, according to the American Academy of Otolaryngology-Head and Neck Surgery. Of children who have tubes, 80 percent will need them once, said Dr. Malone.

Lewis

Lewis had surgery for ear tubes, just like his sister.

Reasons for ear tubes

The two primary reasons kids need ear tubes are:

  • The recurrence of middle-ear infections
  • Persistent fluid in the ear, which usually creates hearing loss

Ages for ear tubes

The two most common ages kids need ear tubes are between:

  • 15 months and 3 years (usually due to ear infections)
  • 4 and 6 years (typically due to hearing loss from fluid buildup)

What are tubes? How do they work?

There are many different types of ear tubes. Two of the major types are grommets and T-tubes.

The grommet naturally falls out in six months to two years, on average. While it’s inside, it will allow the middle ear to maintain barometric pressure to help decrease rates of infection and fluid production.

The T-tube is shaped like it sounds; it has flanges that open behind the eardrum and remains in the ear indefinitely. T-tubes commonly are used for kids who have required multiple sets of tubes or have an anatomic predisposition to prolonged Eustachian-tube dysfunction, which has been seen in kids with Down syndrome or cleft palate, according to Dr. Malone.

Fluid can be trapped behind the eardrum. The human body’s Eustachian tube — named after 16th-century anatomist Bartolomeo Eustachi — typically works by allowing air in and fluid to drain out. If the tube can’t open, fluid can’t get out, leading to an infection or hearing loss — or both. Tubes allow the fluid to drain.

subscribe_blogDetermining a need for tubes

If you have concerns about your child’s recurrent ear infections or hearing, talk to your child’s doctor. Primary care physicians will refer your child to an ENT doctor when and if they think your child is a candidate for ear tubes. Hearing also should be evaluated, Dr. Malone said.

What to expect if your child needs ear tubes

If your child is referred to an ENT who decides ear tubes is the next step, the procedure is an outpatient visit, unless combined with another medical procedure that requires a hospital stay.

“When my daughter got tubes the first time (at 8 months), it was a fast procedure. By the time I got back to my waiting room it was less than five minutes and Dr. Malone was back,” said Starsky, whose daughter needed two procedures, the second one at age 2 to remove adenoids, a mass of soft tissue behind the nasal cavity. “The second time was a little bit longer. Dr. Malone walked us through everything and had given us information to read about what to expect; it was even easier when we had to bring in Lewis.”

Typically kids are back to themselves within the same day and don’t notice the tubes in their ears aside from better hearing and fewer ear infections. Starsky said Margie Claire’s hearing and sleep improved immediately, and trips to the doctor for ear trouble no longer are a regular occurrence.

“Being at Children’s was great,” Starsky said. “If we had to do it again, we’d go back and through the whole process.”

The ‘funnest’ place in the hospital

Grace Vokaty loves the Child Life Zone at Children's — St. Paul.

Grace Vokaty loves the Child Life Zone at Children’s — St. Paul.

Grace Vokaty

When I was 7 years old, I came to Children’s – St. Paul because I had type 1 diabetes. When I was in the hospital, I was sad because there isn’t a cure for my disease. But then I was invited to visit the Child Life Zone, which was made possible by Mr. Garth Brooks and his friends at Teammates for Kids. The Zone is so fun, and now whenever I see the doctor, I tell my parents that we have to stop and play.

subscribe_blogI enjoy coloring and painting, air hockey, video games, the photo booth and lots of other stuff. I like that it’s a fun place to go while I’m at the hospital. And when I’m not feeling happy, it cheers me up.

Plus it’s nice to meet other kids like me who are patients, too. Even my parents enjoy it because I can play there while they are taking classes and learning how they can help me with my diabetes.

In November, I had the chance to meet Mr. Brooks and to tell him thank you for building the Child Life Zone. I told him that it is the “funnest” place I have ever been and that he did a really great job. It makes me happy to know that people from all over care about kids at Children’s, and I hope that when other kids go there it makes them smile.

Grace Vokaty is a patient at Children’s Hospitals and Clinics of Minnesota.

The trouble with toe walking

Casts

If there’s limited motion in the ankle and a child is consistently toe walking, he or she is put in serial casts or carbon-fiber braces.

Toe walking can seem cute, at first. But if it persists after a child is about 20 months old, it can be a problem.

Toddlers develop a heel-toe walking pattern about 20 weeks after they begin walking alone and no longer should be toe walking, said Nicole Brown, DPT. If left untreated, toe walking can lead to future injury or pain in your child.

“I think with little ones, everyone thinks it’s adorable because you don’t know if it’s causing problems,” said Sara McGrane, whose daughter, Molly, started seeing Brown when she was 5 years old.

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CHILDREN’S GRAND ROUNDS: New evidence in toe walking

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At her daughter’s checkup when she was 3, the primary care physician told her parents they needed to encourage her to stop walking on her toes, McGrane said. When she was 4, the parents were told again to keep working with Molly. It was at her visit when she was 5 that her primary care physician noticed she was toe walking and referred her to the Children’s Rehabilitation Clinic in Minnetonka.

subscribe_blog“When she was little, it was cute,” she said. “She had always been a toe walker.”

Often, Brown doesn’t see patients until they’re 6 or 7 years old. There’s a misconception that kids will grow out of toe walking, she said. Those who are seen at 2 or 3 years old have a better prognosis, and treatment time generally is shorter. She has treated patients as young as 18 months and as old as 13.

“We want to get these kids in earlier,” she said. “By the time they’re 6 or 7, they can have structural damage to their foot.”

Treatment varies and depends on the severity of the condition. If Brown can see a patient before there’s limited range of motion, she can retrain the child to resume a normal walking pattern through physical therapy, which on average lasts six months, she said.

If there’s limited motion in the ankle and the child is consistently toe walking, he or she is put in serial casts or carbon-fiber braces, she said. The serial casts are like a typical fiberglass cast for a broken leg. They’re taken off every week and put back on to accommodate the new range of motion that was achieved. Once a child’s motion improves, Brown uses ankle braces. Physical therapy also is part of the prescription and on average lasts about a year.

In Molly’s case, her heel cord was tight enough that she required bracing, McGrane said. She met with Nicole for physical therapy for about 10 months.

“We were amazed at how quickly the process went,” McGrane said. “We are big believers in the program.”

What is toe walking?

Toe walking is a diagnosis in which a person walks with bilateral toe-to-toe walking pattern. There may be a medical cause or it may be idiopathic in nature.

How does Children’s treat patients who toe walk?

  • We offer serial casting, orthotic intervention and physical therapy treatment for treatment of toe walking.
  • Serial casting has been proven to be an effective intervention for toe walkers in treatment of tight heel cords to increase the range of motion and to also weaken the heel cord muscle to allow us to retrain the child’s walking pattern.
  • Children’s and Orthotic Care Services have designed a new type of solid ankle foot orthotic that mimics serial casts for treatment of toe walking.
  • The orthotic brace is a two-pull carbon-fiber solid ankle foot orthotic. The carbon fiber on the outer shell decreases the amount of available multi-planar ankle motion, which mimics the effects of serial casting through increasing range of motion through the heel cords as well as weakening the heel cords but allows the child more flexibility in that they can take off the brace to shower or participate in certain activities.
  • After serial casting or carbon-fiber-bracing intervention has been completed, children are then placed in a two-pull plastic ankle foot orthotic to retrain their gait pattern to allow for a consistent heel-toe walking pattern.

Children’s research in toe walking

We compared outcomes in treatment of toe walking gait with carbon-fiber-orthotic intervention and serial casting. Children were enrolled in this study, and results have shown good outcomes. The research study offers financial assistance as well as a team approach in the treatment of a child’s toe-walking pattern.

Kangaroo Care a tranquil experience for parent, child

Newborn Azarias has skin-to-skin contact with his mother, Veronica Engel, as part of a Kangaroo Care exercise. May 15 is International Kangaroo Care Day.

This month, the Neonatal units in St. Paul and Minneapolis are celebrating the importance of Kangaroo Care, a technique where an infant is held skin to skin with mom or dad. Kangaroo Care promotes bonding, provides comfort for the baby and parent and has potential to improve a baby’s medical condition. In honor of International Kangaroo Care Awareness Day, May 15, a mother shares her experience holding her newborn son skin to skin.

Veronica Engel of Chippewa Falls, Wis., holds newborn son Azarias skin to skin as part of Kangaroo Care.

Veronica Engel

My husband and I found out at my 10-week ultrasound that we were having a baby boy, but we also found out that our son, Azarias, had a birth defect called gastroschisis.

Due to his condition, doctors informed me that I wouldn’t be able to hold Azarias until after his surgery. This had me worried because I was afraid of missing out on that special bonding time that you immediately have with your newborn. When he was born, I was able to put him on my chest momentarily but then he had to be rushed off in an isolette to be prepared for his stay at the hospital until the doctors could perform the surgery he needed.  He was staying in the neonatal intensive care unit (NICU) at Children’s – St. Paul, which has private rooms. I am grateful for this because it allowed me to stay in the room with him around the clock.

subscribe_blogI wasn’t able to hold him for the first week of his life due to his condition; however, I was able to hold his hands and feet or rub his head. After his surgery, I was able to hold him the next day. This was special because I got to hold him skin to skin; I held him for three hours straight. It was relaxing and soothing for both of us to be able to have this closeness, which we weren’t able to do at the beginning of his life. I continued to stay with Azarias in the NICU, and each day I would hold him once or twice using skin-to-skin – anywhere from an hour to three hours at a time.

The doctors told me that he was doing excellent for his condition. Not only was he gaining weight at a good pace, but he also was moving along quickly for what he was able to consume and digest.

When I’m holding Azarias skin to skin, I don’t even notice the time fly by; it’s such a relief to be able to help calm and comfort him just by this simple action. Kangaroo Care truly is a tranquil experience for parent and child and has helped us build a lasting bond with each other. I believe that being here and holding him skin to skin has made a difference in Azarias’ ability to recover and heal from this whole ordeal.

Coordinated care with heart

Sam and Stacey Schumann

Sam Schumann, pictured with his mother, Stacey, was born with hypoplastic left heart syndrome.

Stacey Schumann

I was 20 weeks’ pregnant when my husband and I learned that our son, Sam, had hypoplastic left heart syndrome (HLHS) — a severe heart defect. As parents, we were devastated that our child may not make it to his birth, and if he did, may not have the best life after he was born.

subscribe_blogBut Children’s Hospitals and Clinics of Minnesota calmed so many of our fears. Sam’s care team, including a pediatric cardiologist, perinatal physicians and nurses, surgeon, and many more have been with us since the beginning, helping us navigate this scary diagnosis. And every time Sam has undergone an open heart surgery — five so far, each represented by a heart on his monkey — we’ve found great comfort in his team’s extensive work with HLHS, knowing that they have been at the forefront of ways to treat this complicated condition.

By working together, our team has made our visits to Children’s better than expected. They’ve empowered us to be part of Sam’s care, and we are able to influence important decisions that have ultimately helped him feel better. I am amazed that everyone has said how grateful they are to help Sam, but I don’t think they realize how amazing they are and how grateful we are for them. They have given our son his life; they have helped us be a family.

Stacey Schumann is the mother of Children’s patient Sam Schumann.

Road to concussion recovery longer for one twin

Twin sisters Michelle and Adrianna (Photo courtesy of Karen Schlossmacher-Smith)

Twin sisters Adrianna (left) and Michelle suffered concussions 24 hours apart. Since then, Adrianna has suffered two more concussions. (Photo courtesy of Karen Schlossmacher-Smith)

In March 2013, we wrote about twin sisters Adrianna and Michelle, who suffered concussions 24 hours apart. Since that blog post appeared, Adrianna suffered second and third concussions. The girls’ mother, Karen Schlossmacher-Smith, RN, a nurse at Children’s Hospitals and Clinics of Minnesota, writes about Adrianna’s experience coping with traumatic brain injuries.

Karen Schlossmacher-Smith, RN

My daughter, Adrianna, suffered her first concussion after hitting her head on the court during a basketball game in January 2012. Two subsequent concussions led to the start of a long road of recovery, one she still is navigating with the help of Children’s Hospitals and Clinics of Minnesota and its concussion clinic.

At the time of her first concussion, before Children’s had a concussion clinic, Adrianna received a CT scan elsewhere that revealed no bleeding. She performed frequent computer baseline testing until she was cleared about six weeks later.

In January 2013, Adrianna’s head was stepped on during basketball. She experienced blurry vision and was seen by the Children’s Concussion Clinic, where she saw a physical therapist who evaluated gait, endurance and some visual/balance issues. Headaches were minimal. Once again, she was cleared to resume normal activities six weeks later after passing computer, visual and balance testing.

Adrianna’s twin sister, Michelle, followed with a concussion of her own 24 hours after Adrianna’s second had occurred. This, too, was from basketball. Michelle was seen in the ER with extreme light and noise sensitivity and slight headaches. Noise sensitivity plagued her for several weeks and altered her activities and interactions with friends. She was cleared after the same physical therapy, visual/balance and computer testing. But Michelle stopped playing basketball to avoid any further concussions from the sport and is focusing on diving, where this year she placed fifth at the state meet.

On June 25, 2014, Adrianna, who also dives and was attending a camp, smacked the water with her left-front forehead and saw stars. She rested briefly and was told to try again. She did and hit the front of her head again on the water and saw stars but performed the next day. Upon a discussion with the coach about the incident, we noted her right eye was dilated. Fifteen minutes later in the car, she appeared to be fine, with no complaint of headaches.

Shortly after the diving incident, Adrianna was hit on the left side of her face with a ball while playing lacrosse. What followed were occasional days of not feeling well but no obvious eye dilation.

In mid-July, our family took a trip to Colorado and Wyoming. Adrianna became sick immediately after activities and exercise. She was ghostly white, dizzy, nauseated, vomiting, and had extreme headaches, right-pupil dilation and couldn’t stand. She was taken to the ER, where a CT scan was done due to previous injuries. A concussion and altitude issues were examined as the severity of symptoms came on quickly. She slept for most of the next two days.

Adrianna went on to suffer from severe headaches, visual impairment, a dilated right eye, dizziness, and an abnormal gait. She entered Children’s Concussion Clinic again under Mary Koolmo, APRN, and Ann Hickson, MD, an ophthalmologist who specializes in concussions and visual impairment associations. Headaches remained severe, 24/7. She always awoke with a baseline headache of about 4, and then within an hour would be at a scale of 8-10, depending on activity. Basic medications for pain had no effect.

She began working with Katie Gehrz in occupational therapy for visual disabilities and Jenny Henrickson in physical therapy for balance and overall vestibular issues. Henrickson was astute to the drops in blood pressure, dizziness and rapid increased headaches and made a request for Adrianna to see a cardiologist.

She started taking amitriptyline, a black-box drug that was used formally for depression, seizures and headaches. An electrocardiogram (EKG) was done for baseline. She passed out within 24 hours of taking the pill. The pill was slowly advanced as the medical team didn’t think it caused this blood-pressure drop with one dose but Adrianna passed out a second time. She saw Rodrigo Rios, MD, a cardiologist for postural orthostatic tachycardia syndrome (POTS) due to rapid heart rate and passing out. Dr. Rios’ plan was to have Adrianna drink a lot of water — 80-100 ounces is the range we have heard from many in the field — increase salt intake and get to the ground if she felt like she was going to pass out. Upon a third increase, Adrianna passed out again. A side effect of this medication is low blood pressure, and there was a thought that the medication probably exacerbated her POTS. The medication required a slow withdrawal period where she had no pain control due to side effects.

She continued her eye training through Dr. Hixon and to be supported by Gehrz in OT. Gehrz worked on eye exercises, visual perceptual, memory issues and tracking. She was aware of how Adrianna became fatigued with only 5-10 minutes of activities. Adrianna’s eyes would be lively upon arrival then she would look completely drained, turn pale, and headaches increased quickly. Many days, therapy would have to include frequent breaks to try and lower her headache threshold. Sometimes Adrianna would go home and rest for a few hours then return to school.

Starting high school increased the difficulty of dealing with Adrianna’s post-concussive symptoms. She didn’t want to be separated from her friends. School staff mentioned the possibility of home-schooling; it took a lot of time and energy for staff at Adrianna’s school to understand the impact of what she was facing versus that of about 40 other kids with concussions. True visual impairment meant she couldn’t read because she couldn’t see words due to the inability to wear her contact lenses or glasses.

Only a couple of Adrianna’s friends knew she had another concussion. Sometimes it seems like everyone who suffers a blow to the head today is diagnosed with a concussion. Some have no residual symptoms after two days, some have an occasional symptom, and then there are others who are severely compromised to the point that daily activities are altered immensely.

The concussion clinic has added a person on staff to work with school districts in regard to attendance issues, as it can vary in need among students. (Long-term concussion issues can lead to depression and anxiety due to medications and loss of what previously was normal. Adrianna chose to stay involved, paced activities and knew her own limits. Overall, this, as well as having a supportive sister, is what kept her positive.)

One evening, after a routine trip to the concussion clinic, Adrianna was feeling so sick with severe headaches, she was admitted for a short stay and received IV fluids and pain medication to try and counteract the headaches. A CT scan was done to assess any changes since her previous MRI. The fluids had no effect, and the medication relief was brief. Lab results offered up low ferritin and lower vitamin D levels. She was started on some medications to increase these levels with thoughts that increased levels might help with headaches.

Adrianna is in her eighth month since her most recent concussion. Some visual improvement has occurred over the past nine months. She had surgery at Christmastime to drain and clear a mass area near her left nasal-eyebrow region. The surgery performed by Frank Rimell, MD, had its risks, but through consultation with another ear, nose and throat doctor, Barbara Malone, MD, it was felt to be in Adrianna’s best interest to go in and remove the cyst-like matter in hopes of relieving some ongoing pain.

subscribe_blogThe challenges to date: She has had 30-plus weekly occupational and physical therapy visits, and speech therapy with Melanie Gylling, who assists with strategic methods for educational learning, memory and strategic problem solving and organizational skills in daily activities.

Adrianna continues to follow monthly with ophthalmology and neurology with eye testing for visual depth and tracking. The number of missed school days has been a stressor, but she has learned to advocate for herself. Her processing skills from simple to logistical have been hindered with the third concussion. Reading is done with size-20 font, and she has worked up to 10-15 minute intervals. Her school provides notes and tests with enlarged text, but sometimes the tests are read to her. Her books are on audio, and she records notes during class. Audio is somewhat difficult to revert back to for consecutive homework assignments that might later be added by a teacher.

A neurological assessment exam was done to identify areas of learning that Adrianna may need support in educationally now and in the future, as well as in problem-solving issues more strategically in her everyday life. Simple items and tasks that once were simple now have to be re-evaluated to solve. We’re in the process of obtaining/trialing Livescribe, a pen for note taking in class. Adrianna is able to recite back three to four items in a list when asked to recall. She has not been cleared to work on computers yet, though she gets time each day to use Snapchat to communicate with friends.

Adrianna’s visual field is somewhat clear at 8-12 inches from her face. She jumps back if anything comes within this spatial area. Since having surgery, her right eye no longer is dilated as it had been for six months. She went nearly seven months without exercise, other than walking, and since has been cleared for light aerobic exercise on the treadmill and light swim stokes without her heart rate rapidly increasing.

Since using propranolol for headaches at the suggestion of Dr. Rios, Adrianna hasn’t passed out and her headaches have subsided. The million-dollar questions are: Did the mass removal stop the headaches? Does propranolol mask the headaches? And if she comes off the medicine, will headaches return, or is it a combination that turned the tide?

Adrianna has remained positive throughout this ordeal. She passed her driver’s permit test on her 15th birthday, though, unlike her sister, she hasn’t been able to drive. Adrianna knows contact sports no longer will be a daily part of her life. She has helped manage Michelle to a state diving record. Adrianna plans to manage the boys’ basketball team and track and diving teams to stay involved in the sports that once filled her schedule. Her teachers have been supportive, and she has done well in school with no decreased loads, though with extreme effort and time.

Adrianna’s friends rallied for her during surgery, and she quickly has learned how life can change, to appreciate what you have and make the most of it. Live your life, don’t just exist!

‘I’m a cancer survivor’

Ted Sibley's work as a doctor has taken him to Central and South America. (Photos courtesy of Ted Sibley)

Ted Sibley’s work as a doctor has taken him to Central and South America. (Photos courtesy of Ted Sibley)

This is part four of a four-part series written by Ted Sibley, MD, a former Children’s cancer 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 1: Cancer patient reflects on diagnosis — 20 years later

Part 2: Cancer delivers another blow

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

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.

Ted Sibley, MD

Childhood cancer survival rates are on the rise. Current estimates are that there are more than 325,000 children, teens and adults living in the United States who are survivors of childhood cancer, and each of us has a story to tell.

If we were too young to understand what was happening, our parents could tell you about the struggles they went through — their worries and tears they cried for us when we were too young and weak. Some of us have made it into adulthood, and we can tell you how cancer is something we carry with us. We are part of a collective group who faced death at a young age and now are living life in a newfound light. And we are the lucky ones. For every story like mine, there are countless children who lost their fights with cancer:

  • Children who had bright futures, energizing smiles and did nothing wrong to have lost their lives so soon
  • Children who should have grown up, graduated high school, attended college and changed the world
  • Families who are left with memories of these children
  • Parents and siblings who can tell you the brave fight their child or sibling fought and how they feel about their vacancy in the world

Much like me, they can tell you exactly when and where they were when they discovered that their young loved one had cancer. And they can tell you about their life before and after cancer crept its way into their world and changed them forever.

A younger Ted with Children's Bruce Bostrom, MD

A younger Ted with Children’s Bruce Bostrom, MD

During my time as a nursing assistant, I had the pleasure of sharing my story with patients and their families, but I also got to see firsthand the loss of a child taken from the world too soon.  Late one December, a young boy undergoing chemotherapy spent Christmas in the hospital because his blood counts were too low to go home. I spent time in his room, talking with his mother about how my roommates and I had had a very small Charlie Brown-esque tree on our table years before, but we did not have a star to place on the top. The young boy made arts and crafts to pass the time that evening, and the next day I came to work, his mother handed me a gift. He had made a star for the top of our tree. I thanked him and promised that this would be on my tree for years to come. This little boy lost his fight with cancer within a couple of months, but his small balsa wood star with yellow paint and gold trim sits atop our tree every year. It is one of the most precious things I own and reminds me of those who have lost their fight with a terrible disease.

The impact of being a cancer survivor has changed my life since I was diagnosed. The life I lead now is correlated to the experiences and person that I had become after undergoing treatment. Since my wife and I adopted our first son, I have finished medical school and residency, and I am now a practicing emergency medicine physician. I have had the opportunity to become a father two more times since our first adoption. My wife and I are parents to an Ethiopian boy along with another Colombian child, making an incredibly busy (but wonderful) family. I have become heavily involved in international medical work and am the medical director for a team that provides medical care to the indigenous people of the Amazon River. I have been able to travel extensively throughout Central and South America to work in various hospitals and clinics. I also have been allowed the opportunity to extend my medical services to countries throughout Africa and use the medical knowledge I’ve received through my training to help others on an international scale. My cancer history led me to the life I have now.

The Sibley family

The Sibley family

My wife also has been affected deeply by cancer. Though she was not directly involved in the initial effects of my therapy, she has experienced the ripple effects of my treatment. She changed the way she saw our marriage after my diagnosis of infertility. She has now become a mother who has embraced our adopted children and focused her heart and mind to be a champion for international and domestic orphan rights. She has led numerous teams to work throughout Haiti in orphanages and works endlessly for homeless children in our current city. She has volunteered our home a designated “Safe Families” house for homeless children. We provide temporary placement for various children from our area while their parents secure housing and job opportunities. We now have three sets of bunk beds in our home, countless extra sets of shoes and clothing for boys and girls, and we are just a phone call away from getting additional children who need a temporary place to stay.

Sometimes I worry that my past will strike again when I least expect it. Do you ever have a stomach ache or feel short of breath and wonder if you have a tumor in your abdomen that has now spread to your chest? Probably not. I try not to dwell on such things. But, on more than one occasion, I have taken myself in for a CT scan — just to make sure. Because germ cell cancer secretes the same hormone as a pregnant female, I will occasionally purchase a pregnancy test at the store and test my own urine. (No, not pregnant; I actually just had gastric reflux.) But with every mundane cough, body ache or pain that I experience, the thought that cancer could recur remains in the back of my mind.

This year, I turned 33 and reflected on what 20 years of cancer survivorship has meant to me. I wonder what type of person I would have been without cancer. For better or worse, my experience had substantial effects on my loved ones and me. I’m a different person today because of May 18, 1995. To my wife, I am a husband. To my parents, I am their son. To my kids, I’m their dad. I’m also a friend, brother and physician. But to those who know my history, I’m also proud to be called a cancer survivor.

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.

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

Ted Sibley, MD, has provided care for people internationally.

Ted Sibley, MD, has been a part of medical teams throughout Central and South America. (Photos courtesy of Ted Sibley)

This is part three of a four-part series written by Ted Sibley, MD, a former Children’s cancer 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 1: Cancer patient reflects on diagnosis — 20 years later

Part 2: Cancer delivers another blow

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.

Ted Sibley, MD

The next couple of months were some of the most difficult in my and Erin’s relationship. First were long nights on call, delivering babies in the labor and delivery unit, followed by a six-week rotation in pediatrics at Children’s — the same hospital where I had been a patient and had worked in the pharmacy and as a nursing assistant. Now, I was a medical student doing 30-hour on-call shifts. Still angry and wounded by the fertility diagnosis, the vigor and laughter that I used to share with the oncology families had vanished. I put on a happy face and tried to give them hope like I once had, but on the inside I was hurting.

The disease I had beaten and put behind me was now staring me in the face. Only, this time, it was different. This time, I couldn’t fight infertility with surgery and chemotherapy. My wife and I had to look inside ourselves, at our relationship, and to our strength in God. We had to accept our situation for what it was and determine if we were going to let infertility bring us down or make us stronger.

During my pediatrics rotation, we finally broke. We had attempted a couple of months of fertility treatments, with no success. The emotional price for my wife during that summer and fall had become too high. We also had exhausted our finances trying to become pregnant. At dinner one night, she decided that she had had enough. Previously, we had been involved in international medical teams and traveled throughout Central and South America.

subscribe_blog“What are we doing?” she said. “We are throwing hundreds and thousands of dollars at trying to become pregnant! We’ve seen children without parents and now we desire to be parents and cannot have biological children! Why don’t we build our family through adoption like we talked about during our medical trips?”

And so it was decided.

I attended a meeting about adoptions through Colombia. While we were too young to meet the requirements for a number of countries that adopted to the United States, we met all of the requirements of Colombia’s adoption policy because of how long we had been married. We began paperwork, home studies, background checks and psychological evaluations. We thought of ourselves as “paper pregnant” and celebrated each time we passed a part of the process. After months of meetings, paperwork and social-work visits, we finally had a set of completed paperwork to send to Colombia in application for a child. We considered this our unofficial “ultrasound,” confirming we’d be parents eventually.

Erin and Ted

Erin and Ted shortly after finding out the identity of their son, Lucas

About nine months after we started our adoption process, we attended a weekend fundraiser for our adoption agency and Colombian orphanage. We knew we were getting closer to being matched with a child and that sometimes the agency matched parents to their children at these events. Throughout the weekend, we attended a number of fundraising functions but never got any indication that there was a match. At the end of the final event, a Mass, the founder of the orphanage and the organizer of the agency both spoke about how grateful they were for the weekend’s turnout. At the end, one of them pulled out a manila envelope and read the name of the young boy pictured on it, finishing with, “And my parents are Ted and Erin Sibley.”

We were overjoyed. I called the medical school the next day and extended my vacation for an additional three weeks. We were going to be parents! All the tears, all the sorrow and all the anger were gone. My wife and I were ecstatic! A week later, we flew to Bogota, Colombia, and prepared to meet our first child the next day.

At the orphanage, we waited in the aptly named “green room,” as it is painted bright green. The walls also are covered with hundreds of pictures of children with their families, placed together by that orphanage. In that room, numerous others had met their children for the first time, and now it was our turn. A group of Colombian ladies who worked in the orphanage walked in the room with a gorgeous 3-month-old boy wearing the presentation outfit we had picked out for him. My wife and I stood up and held hands as the women who had taken loving care of our son approached us. They placed him in my arms and said, “Congratulations, Dad. You have a beautiful baby boy.”

Erin and Ted Sibley adopted their first son, Lucas, from Colombia.

New parents Erin and Ted Sibley pose for a photo after meeting their son, Lucas, for the first time.

We were a family. My wife was a mother, and I was a father. Twice, I had felt the blow of cancer in my life — both times unexpectedly. I learned that the life I had wanted, and the life I had planned, was not the life I was meant to live. I had to live with the long-term effects of what happened when I was 13 years old. I couldn’t put cancer in a box and place it on the shelf to look at occasionally. I had to learn to live with it. I was a cancer survivor, husband, medical student, soon-to-be-physician, and now — finally — a dad.

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.

Boy honors sister’s life through fundraising, head-shaving event

Brady German (right), of Bell Plaine, Minn., shaves his head annually at the St. Baldrick's Foundation's "Shave the Day" event at Children's in honor of his sister, Emma. Emma died in September, four years after being diagnosed with neuroblastoma. She was 7. (Photo courtesy of the German family)

Brady German (right), of Belle Plaine, Minn., shaves his head annually at the St. Baldrick’s Foundation’s “Shave the Day” event at Children’s and raises money for cancer research in honor of his sister, Emma. Emma passed away in September, four years after being diagnosed with neuroblastoma. She was 7. (Photo courtesy of the German family)

Emma German, of Belle Plaine, Minn., passed away in September, four years after being diagnosed with neuroblastoma. Her brother, Brady, continues to raise money for cancer research and shave his head in her honor through the St. Baldrick’s Foundation’s annual “Shave the Day” event at Children’s – Minneapolis.

Brady Gervais

In the small town of Belle Plaine, Minn., everyone knows about Emma. A “girlie girl,” Emma was diagnosed with neuroblastoma in 2010 when she was 3. She loved fashion, sparkles, makeup and accessories. The more glitter, the better. She loved to dance and sing, play piano and do arts and crafts. She and her older brother, Brady, entertained their family with weekly skits and dances.

Emma was so adored that in 2013, she was invited to be a “celebrity shaver” at a St. Baldrick’s Foundation head-shaving event at Children’s that raises money for cancer research. While watching Emma shave heads, Brady was spurred to help, too. Emma’s doctor offered to donate to St. Baldrick’s if Brady became a shavee. He agreed and then challenged his mom to donate, too. Earlier that day, his mom had received an anonymous cash gift. She donated the money for the cause.

Later that night, Brady told his mom that he wouldn’t cut his hair until the following year, when people would shave the day again for St. Baldrick’s at Children’s. As his hair grew throughout 2013 and early 2014, people commented on his long locks. Whenever they did, Brady told them that he was raising money for pediatric cancer research, his sister was undergoing cancer treatment and he wanted to help kids like Emma get much-needed medicine. He raised more than $4,000.

Emma hugs big brother Brady shortly after she helped shave his head during the 2014 St. Baldrick's Day event.

Emma hugs big brother Brady shortly after she helped shave his head during the 2014 St. Baldrick’s Day event.

After spending four years in and out of the hospital, Emma passed away Sept. 24, 2014. She was 7. But her story doesn’t end there; it lives on in her big brother. This year, after Emma’s death, Brady has aspired to do much more.

“Brady loves and misses his little sister terribly, and it hurts him SO much to do this without her,” their mom, Keriann, said. “But raising money to help fund clinical trials that can hopefully help find treatments that can save other children battling cancer is a great way to honor someone we have lost to the disease.”

Brady recruited eight of his classmates from his fourth-grade class at Oak Crest Elementary and his favorite teacher, Mr. Don Fraser, to commit to shaving their heads and raising money, too. Brady named his team “Emma’s Acorns” — a tribute to his sister and school. He tells his friends that he wants to “help the doctors and scientists find better medicines for kids with cancer so that other kids don’t have to lose a brother or sister to cancer like he did.”

Brady (in green) recruited eight classmates and his teacher to raise money for cancer research and shave their heads this year. The group has raised more than $10,000.

Brady (in green) recruited eight classmates and his teacher to raise money for cancer research and shave their heads this year. The group, “Emma’s Acorns,” has raised more than $10,000.

subscribe_blogAt the St. Baldrick’s event at Children’s on Thursday, Brady’s friends will wear pink, a color they unanimously picked to honor Emma. Their moms will wear purple, another favorite of Emma’s. So far, Brady and his friends have raised more than $10,000. And each one has told Keriann that they plan to shave their heads and raise money annually to honor Emma.

“I know that Emma is the reason Brady is doing this,” Keriann said, “and his friends are proud to support him in his efforts to raise money and awareness of the importance of funding clinical trials for pediatric cancer.”

Learn more about how you can “Shave the Day” on Thursday.

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

Cancer delivers another blow

Ted Sibley

Ted Sibley, who enrolled in medical school at the University of Minnesota in 2005, poses for a photo with his wife, Erin. (Photos courtesy of Ted Sibley)

This is part two of a four-part series written by Ted Sibley, MD, a former Children’s cancer 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 1: Cancer patient reflects on diagnosis — 20 years later

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.

Ted Sibley, MD

Cancer was now behind me, and my focus shifted to a future without oncologists, CT scans and specialists. For the first time in five years, I looked at myself not as a “cancer kid,” but rather an 18-year-old who had his whole future ahead of him. After graduating high school, I chose to attend Northwestern College (now University of Northwestern – St. Paul), where I planned to major in mathematics education and play football.

I had considered the possibility of becoming a physician. After all, my teen years had provided me an informal understanding of medicine in general. While I was in high school, I had even job shadowed a couple of the oncologists who had treated me. But I came from a family of teachers, and, at that time, I did not want to pursue a career that would require 11 extra years of education.

I enrolled in my fall 2000 coursework and started playing football. At first, I didn’t tell my teammates about my previous cancer diagnosis for fear they’d take pity on me and treat me differently. Eventually, though, I began to share my story when guys asked about the scars on my chest and abdomen from the surgeries I had undergone. To my surprise, nothing changed. I wasn’t considered the cancer survivor, just one of the guys on the team. With no special treatment, I was expected to work hard and earn everything, just like everyone else. The cancer label was gone, and I opened a new chapter in my life.

During my first semester at school, a friend mentioned he knew three girls who were headed to the store for groceries. I needed milk, and didn’t have a vehicle, so I wanted to join them. As my friend introduced me, one of the girls immediately caught my eye — a beautiful blonde with freckles, soft skin and a killer smile. She moved with a poise that was attractive and radiant. I really, really liked her.

Her name was Erin, and she was studying music education with an emphasis in vocal training. She sang with the college choir and wanted to teach elementary music. We went to the store that evening, and shortly thereafter we never left each other’s side. I found myself thinking about her, wanting to be with her, and was ecstatic when I discovered the feelings were mutual. We enjoyed each other’s company and spent hours going on walks and talking to each other. As time went on, I knew that I had to tell her about my past. I knew if we were going to have a long-term relationship that she deserved to know everything about me, and I was unsure about how she was going to react. Previously, all the girls I had dated were from my high school and knew about my cancer history. Erin was the first girl I had to tell the entire story to, and I didn’t know how she’d perceive me. Would she be OK with it? Would she pity me and not tell me? Or, would she decide it was too much to deal with and break off the relationship?

Ted and Erin met during college.

Shortly after meeting, Ted and Erin never left each other’s side.

During one of our talks, I decided I should tell her, partly out of fear that my mom would let it slip. I told her about the surgeries, chemotherapy, hair loss and the year of being unable to eat. I told her about the kidney damage and the high blood pressure, the hearing loss and nerve damage. I told her about my rehabilitation and years of therapy just to be able to walk, write and tie my own shoes. I left out no detail, and after putting it all out on the table, she simply looked at me and said, “OK.” She had no judgment or reservations. Her only question: Would my cancer history affect me having children? I strongly reassured her that, as far as I knew, I had the same odds as everyone else. After all, I was five years’ post-treatment, and no one had mentioned the possibility of infertility. Cancer was in my past, I told her, and it would not be a problem in our future.

Our relationship developed further, and we started talking about the possibility of marriage. We enjoyed discussing our dreams and life together. How many kids would we have? Would they have her freckles or my offset ears? We laughed at the fact that we both have small noses and wondered if this was a gene that we would pass on to our children. Did we want all boys, all girls, or both? I loved talking with her about our future without cancer looming in the background. We were moving forward together, and my cancer history had no place in our life.

I began to struggle with deciding on a career path. I knew that I enjoyed people and excelled in math and science. I thought mathematics education would be a great career fit, but at the end of my freshman year, I wanted something else. During one of our talks, I complained to Erin about being 19 and not knowing what to do with my life. “Why don’t you become a doctor? After all, your life experience is more unique than most others’, and you do well with math and science,” she said.

She made it sound so simple, and somehow I had been missing it. I enjoyed interacting with people, and math and science were my best subjects. Being a medical doctor incorporated all of these passions. The next year, I changed my major to pre-med and decided to transfer to the University of Minnesota to complete a biology degree. I was able to get a job as a pharmacy technician at Children’s. I made the same medications I remembered receiving as a patient just a few years earlier and even made the chemotherapeutic medications that had killed my tumors and saved my life. I had come full circle and now had the focus and drive to turn my cancer history into something good.

Ted and Erin met in college.

Ted and Erin met in college.

After working in the pharmacy for a few years, I realized I missed interacting with people. I completed a summer course to become a nursing assistant and got hired to work in the same oncology unit where I had been a patient.

During that time, I found my passion for medicine. I worked side-by-side with the same doctors and nurses who had taken care of me when I was undergoing treatment. I was able to connect with the kids and spent hours talking with the families about my treatment and time as a patient in the hospital. I was able to relate to the teenagers who were angry about what was happening to them, and I provided hope to families who had recently received a cancer diagnosis. I felt needed and important, and it fueled my desire to become a doctor. I wanted to help others, and I wanted to give something back to the medical establishment that had saved my life.

I was accepted and enrolled at the University of Minnesota Medical School in fall 2005. The next couple of years were extremely challenging, but I had already fought through cancer. I felt empowered to be in medical school. What specialty would I choose? Would I be a pediatrician?  Be a pediatric oncologist? Or, would I choose something entirely different? Did I want to be a surgeon, or maybe a radiologist?

After the first three years of classwork, clinical rotations and internships, I finally chose my specialty: emergency medicine. I loved the rush of the emergency department, the challenges every day brought, as well as the variety of patients I encountered. I treated adults, children, pregnant women and occasionally an oncology patient. I was able to incorporate all of the knowledge I learned in school and help others when they needed it most.

Prior to medical school, Erin and I became engaged, and we married in 2003. She had always wanted to start a family at a young age but understood the challenges of pre-medical studies and medical school itself. We put off having children, and instead she volunteered in our church’s nursery and enjoyed time with her sister’s children. But after two years of medical school, we were both ready to become parents. We decided to try starting a family. If we were successful, the child would be born exactly when I had accrued vacation time and could take a couple of months off with our newborn. Everything was aligning.

After a couple of months, we had no success. I spent extra time after work doing personal research in the library, looking up long-term fertility rates in patients who had had germ cell cancer — the same cancer I had — and received the type of chemotherapy that I had. I remember staying up late at night on our laptop, looking through research articles about late-term complications and the percentage of infertile patients. The numbers were reassuring. Although I realized there may be a chance that we couldn’t have biological children, I figured someone would have told me. I couldn’t remember any conversation with my oncologist or parents about infertility. After another unsuccessful month, I reassured my wife that these things take time, but I would see a urologist to be sure.

subscribe_blogAt my appointment, I remember the urologist sharing statistics about fertility among post-cancer patients. I don’t recall the details of what he said because cancer was in my past. He ordered lab tests, and I was scheduled to come back in two weeks for the results.

The next week, I came home from 30 hours on call delivering babies at the hospital and crashed in my bed. I woke in the afternoon and went to get the mail. Inside was an envelope from the University of Minnesota Department of Urology, and I quickly opened it. I expected a reminder about my follow-up appointment, but instead it was a laboratory data sheet. I saw my name and date of birth at the top, and written below in the graph were big black letters that were circled, “No Sperm Identified.” That was it. There were no other laboratory references and nothing about future appointments. I rubbed my eyes. I was drowsy and delirious from the overnight call shift. But no matter how long I looked at that paper, the words never changed.

I felt numb. Nothing prepared me for this. This wasn’t real. I had beaten cancer, and my future was healthy and strong. I was no longer the “cancer kid.” I was a medical student preparing myself for a career of saving lives and helping others live. How could this be true? And how could it come to me in such an impersonal way? Letters on a lab sheet written by a black Sharpie that turned my life upside down. This was a punch in the gut — just like when I was 13.

I didn’t tell my wife for a week. How could I? All I had was a piece of paper with my name on it and circled letters, “No Sperm Identified.” Maybe it was a mistake. After all, such a diagnosis would not be communicated by mail. “This has to be a mistake,” I kept telling myself.

A week later, I followed up with the urologist, and there had been no mistake. My laboratory specimen failed to reveal a single sperm.

“You are infertile,” the urologist said. “I’m sorry for this diagnosis.”

My stomach churned. He told me about possibilities of fertility treatments, but all I could hear were his initial words over and over again. I was unable to have biological children. My wife and I would never share the joy of having a child who looks just like us. My dreams of going to the hospital with my wife and having friends and family come see our baby were gone. I thanked the urologist and drove home to tell my wife.

She was sitting on the couch, reading a book when I returned home. She looked up and turned her head toward me, “Well, how did it go?”

I couldn’t talk. I couldn’t say anything. I started to speak, and no words came out. All I could do was shake my head, and tears started flowing. “I’m so sorry,” I eventually managed to say, showing her the test results.

We sat on the couch and cried. So many thoughts and emotions went through our minds: anger, sorrow and guilt. Cancer was supposed to be in my past, not affecting anyone else. I could deal with taking daily medications for kidney function and hypertension. I could deal with hearing loss and nerve damage. But never in my life had my cancer so greatly affected someone else. My wife was the innocent bystander, and now the scars of my past had resurfaced to wound us deeply. A piece of our future was gone. And I couldn’t do anything about it.

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.