Author Archives: ChildrensMN

Minnesota House and Senate compromise leads to health care investments

(Photo courtesy of State of Minnesota)

The House and Senate passed — and the governor signed — a bill that most in the health and human services committee probably would give a “B-” grade. (Photo courtesy of State of Minnesota)

Kelly Wolfe

The beginning of every legislative session is a bit like the first day of school. Everyone is excited to see friends they haven’t seen in a while and generally people are optimistic that this year will be even better than the last, and 2015 was no different.

Kelly Wolfe is public policy director at Children's Hospitals and Clinics of Minnesota.

Kelly Wolfe is public policy director at Children’s Hospitals and Clinics of Minnesota.

With a $2 billion surplus and no legislators up for re-election, the legislative session was set up to be a successful one. Hopes were high that additional investments in education and health and human services would be made, our roads and bridges would be fixed, and the legislative session would end seamlessly on time.

But just as the new school year feeling is quickly tarnished by a fallout with a friend or a bad grade, the political and philosophical differences that quickly emerged this legislative session put a damper on the optimism. So despite having plenty of money with which to work, dueling priorities over tax cuts, transportation funding, and investments in early childhood education created an improbable solution.

As it relates to Children’s priorities, the massive gulf in approaches to spending on health and human services between the House (a proposed $1 billion cut) and Senate (a $340 million increase) created significant uncertainty for hospitals, nursing homes, mental health providers and many other service agencies. After several weeks of little movement, negotiators agreed to a bill with just one week to go. In keeping with the quirky nature of this year’s legislative session, they crafted a bill that cut $300 million from health and human services but still managed to put significant investments into the health system, including:

  • Payment parity for telemedicine visits, an approach that has tremendous potential for  keeping families closer to home to receive their care
  • An additional $52 million for child protection services that will create a more robust system of accountability to keep children safe
  • Additional medical education funding that will help train more pediatric residents and fellows
  • More than $40 million investment in our mental health system — a long-overdue and much-needed investment for Minnesota children and families
  • Funding for evidence-based home visiting programs that will help children ages 0-2 receive the best possible start in life

subscribe_blogSo, despite the difficulty of reaching a compromise, the House and Senate passed — and the governor signed — a bill that most in the health and human services committee probably would give a “B-” grade; not a bad way to end the year.

For others, though, they’re heading into “summer school” (special session) largely due to the governor’s veto of the education bill. Legislators and the governor will have until July 1 to reach an agreement to avoid a partial state shutdown. The good news is that these are hardworking people who care about our state and have no interest in getting an “F” from the people of Minnesota.

Kelly Wolfe is public policy director at Children’s Hospitals and Clinics of Minnesota.

Mental health is a part of overall well-being

We move through the world as a unique, integrated, whole person. And so do the children for whom we care. (iStock photo)

We move through the world as a unique, integrated, whole person. And so do the children for whom we care. (iStock photo)

Mike Troy, Ph.D, LP

Mike Troy, Ph.D,

Mike Troy, Ph.D,

It’s good that we devote a month — May — to mental health. Through these efforts, the community works to build greater awareness about mental health, break down stigma and lend support and hope to those who deal with mental-health issues in their lives. Yet, I find myself hoping for a time when we don’t have a special month for mental health.

Why would a clinical psychologist who is encouraged by the progress that has been made in mental-health awareness over the course of his long career hope for that? Let me start to answer this way: In which month do we recognize medical health?

Obviously, there is no such month. And the reason is that society doesn’t need to be convinced that our physical health is tied to our overall well-being. We assume that flu will lead to missed time at school or work; we know that cancer will require treatment; and we recognize that continued lack of treatment of high blood pressure could result in a stroke or heart attack. And yet despite equally compelling evidence, we often fail to recognize that emotional and behavioral problems have a direct and profound impact on current and future well-being.

Indeed, our health care systems continue to be organized in ways that imply that we move through the world with separate identities — one physical and one psychological, with divided systems of care. But this division is artificial. In reality, we move through the world as a unique, integrated, whole person. And so do the children for whom we care.

While we have much more work to do, at Children’s we recognize that mental health care is health care. This understanding is being validated by a growing body of research that speaks to the powerful interaction of biological, psychological and social factors on the developing brain, gene expression and overall health. We know, for example, that significant and sustained adversity early in life contributes to a wide range of behavioral, learning and health problems throughout development. And there’s an abundance of scientific evidence linking behavioral disorders of childhood to poor physical health throughout the lifespan. Consequently, monitoring risk and responding with appropriate evaluation and treatment for emotional, behavioral and developmental problems is as important as it is for medical problems.

subscribe_blogThis is why we’re grateful that more than 4,000 families during the past year have turned to Children’s for help when confronted with the challenge of understanding and treating mental-health problems such as anxiety, depression, autism spectrum disorder and ADHD. Additionally, Children’s supports our mental-health professionals as they work to bridge psychological and physical health while working as members of clinical teams ranging from the feeding clinic to the hematology/oncology clinic.

While society still has a long way to go, I am hopeful that increasingly we are viewing and valuing mental health in a more enlightened way. Seldom am I met with skepticism when I speak to a medical audience about the impact of mental health on overall health. The pediatric health care industry is investing in more intensive and robust screening methods to identify potential issues earlier, as well as advancing models for delivering care that integrate mental- and behavioral-health services into medical settings.

I embrace this momentum, while also recognizing that much more work needs to be done before we no longer need a single month devoted to mental health. What will that look like? Children who struggle, for example, with depression will be treated with the same understanding, compassion, and support as those with cancer. Health care systems and insurers will view physical- and mental-health services as equal contributors to the developmental well-being of all of our community’s youth. And families will be able to access mental-health services as readily as any other essential health care services.

In the meantime, I join with others in recognizing this month as an opportunity to shine a light on mental health and a way of letting the children and families we see every day know that they have our support.

Mike Troy, Ph.D, LP, is the medical director of Behavioral Health Services at Children’s Hospitals and Clinics of Minnesota.

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.