Category Archives: Patient stories

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.

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.”

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

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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.

Former 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.

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