Author Archives: ChildrensMN

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.

9 things to know about Lyme disease and other tick-transmitted diseases

Most of the time, ticks are just nuisance pests, but the bites of some species can cause serious illnesses. (iStock photo)

Most of the time, ticks are just nuisance pests, but the bites of some species can cause serious illnesses. (iStock photo)

May, appropriately, is Lyme Disease Awareness Month. When the weather turns nice, Minnesotans aren’t the only ones who emerge from hiding. Ticks come out, too, looking for their next meal. Most of the time, ticks are just nuisance pests, but the bites of some species can cause serious illnesses.

Follow these reminders to help prevent Lyme Disease and other tick-transmitted diseases:

  • Highest risk for tick-transmitted diseases generally is mid-May through mid-July but can stretch longer into the summer.
  • Wear tick repellant containing permethrin on clothing. Other effective repellents include products containing up to 30 percent DEET (diethyltolumide).
  • Walk in the center of the trail to avoid picking up ticks from grass and brush.
  • Wear light-colored long-sleeved shirts and long pants. Tucking your pants into the tops of your socks or boots creates a “tick barrier.” Light-colored clothing makes it easier to see ticks.
  • Check for ticks frequently and remove them promptly. Remember to check the hairline and behind the ears and points of clothing constriction (behind knees, waist line, arm pits, etc.).
  • subscribe_blogRemove by using a tweezers to grasp the tick by the head close to the skin and pulling the tick outward slowly and steadily. Do not squeeze the tick. Use an antiseptic on the bite site after removal.
  • If you live near the woods or in an area with ticks, maintain your property: keep your lawn mowed short, remove leaves and clear the brush around your house and at the edges of the yard, keep children’s playsets or swing-sets in a sunny and dry area of the yard, and make a landscape barrier (such as a 3-foot-wide border of wood chips) between your lawn and the woods.
  • Topical tick repellants are available for dogs and cats, and a vaccine to prevent Lyme disease is available for dogs. Check with your veterinarian to determine the best option.
  • Check dogs or cats for ticks before allowing them inside. For more information about tick-transmitted diseases, visit the Minnesota Department of Health and Centers for Disease Control and Prevention.

For more information about insect repellents and children, visit the American Academy of Pediatrics’ Healthy Children website.

Allergies in full swing in spring; asthma a year-round concern

Although allergies can develop at any age, they most commonly show up during childhood or early adulthood.

Winter exits, spring enters, and with it come irritants in the environment that can trigger allergies in children and adults. In the U.S. alone, more than 50 million people (1 in 5) are affected by allergies — which are caused by an overactive immune system — according to the American Academy of Pediatrics.

Allergies in springtime often are a trigger for asthma — May is National Asthma and Allergy Awareness Month — but asthma is a year-round concern for children, said Gigi Chawla, MD, Children’s senior medical director of primary care. Keeping refills for controller and rescue medications, especially with traveling, outings and school, up to date is important. Parents should ensure they’re making asthma checkups with their clinicians, at least yearly, in order to keep kids happy, healthy and under control.

Allergies and asthma are the most common chronic diseases among children in the U.S., according to the AAP. Many aspects of allergies, eczema and asthma are not fully understood. But advances in the diagnosis and treatment of these disorders are helping millions of sufferers.

subscribe_blogWhat are allergies?

Many people mistakenly use the word “allergy” to refer to a disease or almost any unpleasant or adverse reaction. In reality, allergies are reactions that usually are caused by an overactive immune system. These reactions can occur in a variety of organs in the body, resulting in diseases such as asthma, hay fever and eczema.

Your immune system is made up of a number of different cells that come from organs throughout the body — principally bone marrow, the thymus gland, and a network of lymph nodes and lymph tissue scattered throughout the body, including the spleen, gastrointestinal tract, tonsils, and the adenoid (an olive-shaped structure that is located at the top of the throat behind the nose).

Normally, it’s the immune system that protects the body against disease by searching out and destroying foreign invaders, such as viruses and bacteria. In an allergic reaction, the immune system overreacts and goes into action against a normally harmless substance, such as pollen or animal dander. These allergy provoking substances are called “allergens.”

Allergy symptoms for ear, nose, throat and mouth

  • Red, teary or itchy eyes
  • Puffiness around the eyes
  • Sneezing
  • Runny nose
  • Itchy nose, nose rubbing
  • Postnasal drip
  • Nasal swelling and congestion
  • Itchy ear canals
  • Itching of the mouth and throat

Lungs

  • Hacking dry cough or cough that produces clear mucus
  • Wheezing (noisy breathing)
  • Feeling of tightness in the chest
  • Low exercise tolerance
  • Rapid breathing; shortness of breath

Skin

  • Eczema (patches of itchy, red skin rash)
  • Hives (welts)

Miscellaneous

  • Headache
  • Feelings of restlessness, irritability
  • Excessive fatigue

Where does asthma fit?

Although allergies can trigger asthma and asthma often is associated with allergies, they are two different things. In simple terms, asthma is a chronic condition originating in the lungs, whereas allergies describe reactions that originate in the immune system and can affect many organs, including the lungs. Many different substances and circumstances can trigger an asthma attack—exercise, exposure to cold air, a viral infection, air pollution, noxious fumes, tobacco smoke, and for many asthma sufferers, a host of allergens. In fact, about 80% of children with asthma also have allergies. Although allergies are important in triggering asthma, severe asthma exacerbations are often set off by the good old common cold virus, totally unrelated to allergy.

In the summertime, exercise and humidity often are triggers. In late summer-early fall, ragweed is a trigger. Come fall, weather changes and back-to-school exposure to illness can be a trigger for asthma exacerbation, and illness is the usual culprit in the winter.

Source: Guide to Your Child’s Allergies and Asthma (Copyright © 2011 American Academy of Pediatrics)

Tanning turmoil: Why getting ‘bronzed’ is hazardous to teen health

For teens, one visit to a tanning bed increases the risk of squamous cell carcinoma by 67 percent. (iStock photo)

Gigi Chawla, MD

Every spring, many of us weary from a long winter head south to warmer climes; teens across the country attend prom with their sweethearts. And what do kids tend to do before events like these?

Hit the tanning salon.

Looking “pasty white” in a swimsuit or a new dress just won’t do, right? Think again.

Gigi Chawla, MD

Gigi Chawla, MD

Here’s a brief warning to help dispel the myth of “getting a base tan” before these events. Or ever.

Currently, 35 percent of 17-year-old girls in the U.S. are using tanning beds and 55 percent of college-aged kids have used one at least once.

In 2014, the Star Tribune reported “a third of white 11th-grade Minnesota girls have tanned indoors in the past year, according to a state survey … and more than half of them used sun beds, sunlamps or tanning booths at least 10 times in a recent 12-month period.”

What isn’t immediately clear to our kids is that during a tanning-bed session they may receive up to 12 times the ultraviolet (UV) exposure as they receive being outside in the natural sunlight. This UV radiation exposure from tanning beds is dangerous and linked to three types of skin cancer: melanoma, basal cell carcinoma and squamous cell carcinoma.

Here’s the potential damage that one tanning-bed session can cause a teen:

  • The risk of developing melanoma increases by 20 percent.
  • The risk of developing basal cell carcinoma increases by 29 percent.
  • The risk of squamous cell carcinoma increases by 67 percent

subscribe_blogFor people younger than 35 using a tanning bed, the lifetime risk of developing skin cancer of any type increases by 74 percent.

Specifically, it increases the lifetime risk of:

  • Melanoma by 75 percent
  • Basal cell carcinoma by 150 percent
  • Squamous cell carcinoma by a whopping 250 percent

Moreover, skin cancer now is the leading form of cancer in 25- to 29-year-olds.

Another startling fact: More skin cancer cases arise from tanning-bed use than lung cancer cases do from smoking; yet, in our culture, bronzed skin is seen as a form of beauty.

Some advice to parents: Remember to reinforce to your teens that they are beautiful or handsome no matter the shade of their skin. What’s important is what’s inside. I like to think that we live in an era in which we can look past skin color, where we are not judged by skin color and we should not see beauty based on skin color.

It’s time to remind your kids to “go with your own natural glow.”

Gigi Chawla, MD, is a pediatrician, hospitalist and the Senior Medical Director of Primary Care at Children’s Hospitals and Clinics of Minnesota. Her areas of interest are the care of complex special needs patients, premature infants, ventilator dependent children and care of hospitalized patients.

Sources: The Skin Cancer Foundation, U.S. Food and Drug Administration, Centers for Disease Control and Prevention

 

5 things you may not know about music therapy

Erinn Frees (right), a music therapist at Children’s, tells us five things you may not know about music therapy. At left is music therapist Kim Arter.

In honor of Music Therapy Week, music therapist Erinn Frees gives us a look at her job at Children’s Hospitals and Clinics of Minnesota.subscribe_blog

Stepping onto the Children’s elevators each day, guitars on our backs and instruments in hand, we tend to draw comments from fellow riders. They range from the typical “You must be the entertainment” to “Do you actually play all those instruments?” to “I wish I had your job.”

Although explaining the ins and outs of music therapy isn’t always possible by the time one of us gets off on the fourth floor, we do usually manage to smile and say, “I’m one of the music therapists.” After being in this field for almost seven years, I find that this doesn’t always provide a lot of clarification. So in no particular order, here are five things that you might not know about music therapy:

1. Music therapy isn’t just for fun. Don’t get me wrong, music therapy usually is funWhat kid or teen doesn’t enjoy music, especially when they get to play along on a shaker or fancy electronic drum set?  However, a casual observer may not notice that a music therapist has goals for each patient he/she works with, ranging from giving a 3-year-old an effective means of emotional expression when he doesn’t have the words, to giving a 15-year-old relaxation strategies using music during a procedure, to motivating a 10-year-old to get out of bed.  The point of music therapy is that we are using the musical experience as a means of reaching a non-musical goal.

2. A child doesn’t need to be a musician or have musical experience to benefit from music therapy. Our goal as music therapists is not to teach kids how to play an instrument, or sing better, or dazzle everyone with their harmonica stylings. Therefore, the child doesn’t need to be musical to benefit from music therapy. Even patients who are sedated can benefit from music therapy, as music therapy can lower heart rate and blood pressure, as well as increase oxygen saturations. Patients who are able to participate on a more active level can play drums, shakers, xylophones and even a special type of harp with little to no previous musical experience.  A music therapist may use teaching the guitar as a way to improve the child’s fine motor skills, or having a child blow through the harmonica as a way to encourage deep breathing, but learning skills on these instruments is never the goal of the session.

3. We always use patient-preferred music. Music therapists use music from all genres to effect positive changes in the patients we work with.  We wouldn’t use “Old MacDonald” in a session with a 16-year-old (unless he or she requested it!) and we probably wouldn’t use a song from the 1920s with a 5-year-old. One of the first things music therapists ask when getting to know a new patient is what kind of music the he or she prefers.  We then work to accomplish our goals using this or similar music. We can’t promise to know every song, (we’re not human jukeboxes!) but we can always use recorded music or find a similar song if need be.

4. Music therapists are not just musicians waiting to make our big break on “American Idol.” Across the board, the music therapists I know went into the field because they want to use their passion for music to make a difference in people’s lives. We went to school for four or six years to do exactly what we do: music therapy. We spent six full months doing an unpaid music therapy internship and worked hard for the jobs we have. Although some music therapists perform outside of their day jobs, we are not performing when we are working with patients. Just listening to us sing is not likely to accomplish very many therapeutic goals!

5. We don’t just sing and play instruments. We do a lot of singing and instrument play with kids, this is true. However, we also work with kids doing songwriting (for emotional expression, processing, or a way to “tell your story”), lyric discussion (again to process emotions, facilitate coping, or put a new perspective on problems), music-assisted relaxation, procedural support, recording, and CD compilation.

So let’s go back to the elevator, so we can finish those conversations:

“You must be the entertainment!” – No, I’m not a performer. I do get to spend the day making great music with courageous, insightful and amazing kids, though!

“Do you actually play all those instruments?” Yes, I can… but I’d rather have the kids playing them!

“I wish I had your job!” – Yes, it is a wonderful and rewarding profession, and I wouldn’t want to be doing anything else!

4 ways to monitor your kids’ social media use

Use social media to help your kids develop self-control habits. (iStock photo)

Maggie Sonnek

If Jennifer Soucheray had a Twitter handle, it probably would be something clever like @JentheMamaHen or @MrsSouchRocks. But this third-grade teacher and mom of three teens doesn’t have a Twitter account.

Or Instagram.

Or Snapchat.

But her three kids do. So, she and her husband, Paul, have had to find ways to monitor their social media use without being, “like, totes uncool.”

I asked Soucheray, along with a few others, to share a few of their tips and best practices when it comes to kids and social media. Here’s what they had to say:

1. Use social media to help your kids develop self-control habits

Whether it’s texting, tweeting or using Facebook, these parents tout the benefits of putting limits in place early. According to the Soucheray household, texting and Twitter are the most common ways their kids communicate digitally.

“We know their phones are lifelines to their friends,” Soucheray said. “They need these tools otherwise they’ll be ostracized. But as parents you have to develop parameters for what’s acceptable use.”

One way these parents have put boundaries in place? All devices are turned in to Mom and Dad before bedtime.

2. Validate kids every day, offline

Soucheray, who taught middle school for 12 years, says it’s extremely important to validate your kids every day. She said that’s one reason why Facebook and other social media tools are so popular — because we’re all looking to be validated. (Author’s note: Not going to lie; there have been times that I’ve fallen into this trap and checked in on a status update or picture I posted to see how many “likes” it has received. And when the number is higher or the comments are positive, for some reason, I feel a little better.)

“If a kid doesn’t hear she’s pretty or smart by someone who cares about her, she’s going to look for that somewhere else,” Soucheray said.

Dr. Robyn Silverman, a child-teen-development specialist and body-image expert, agrees.

“Teens are defining themselves during adolescence,” she wrote on her blog. “They are figuring out where they fit into their social world and hoping that others look at them favorably.”

Soucheray and Silverman say it’s important to talk about your kids’ true gifts.

“Make sure your children understand that their strengths — such as their kind heart, conscious nature or musical ability — are recognized,” Silverman said, “and really make a difference.”

subscribe_blog3. Use the tools for good

One thing that surprised me as I chatted with parents and teachers is: Kids are using social media more than just a platform to post “selfies.” They’re also using it as a homework-helper.

Dan Willaert, a geometry and AP statistics teacher and Cretin-Derham Hall wrestling coach, tweets out reminders and practice problems to his followers on a regular basis.

“I’ll write out a problem, snap a picture and then tweet it,” Willaert said. He has a Twitter account for wrestling, too, and often sends updates about tournaments, schedule changes and snow days.

4. Be present

Soucheray admits she doesn’t have the right answer or the perfect balance for monitoring tweets and texts, but her one piece of advice is something all parents can take with them. And that’s simply to be present.

“Dig in and be there with them… be in the moment,” she said.

Maybe someday @JentheMamaHen will tweet out that advice to her followers. But for now, she has papers to grade and dinner to make. Her Twitter days will have to wait.

Maggie Sonnek is a writer, blogger, lover-of-outdoors and mama to two young kiddos. When she’s not kissing boo-boos or cutting up someone’s food, she likes to beat her husband at Scrabble.

‘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.

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.