Category Archives: Featured

Children’s at the Capitol: A simple test can save a child’s life

Since the newborn-screening program began, more than 5,000 children have been saved. (iStock photo / Getty Images)

Every parent hopes and dreams for a happy, healthy child. Unfortunately, those dreams don’t always come true. Sometimes children are born with serious conditions that impact their health, but if caught early, many can be treated and the severity lessened. Since the newborn-screening program began, more than 5,000 children have been saved; children like Zak and Ella. Thanks to newborn screening, Ella was diagnosed early with Cystic Fibrosis (CF) and because the blood spots and test results were saved, doctors were also able to diagnose her older brother with CF when he became sick.

The Newborn Screening Program tests newborns between 24-48 hours after birth for more than 50 rare, life-threatening disorders; disorders that if left untreated, can result in illness, physical disabilities, learning and developmental disabilities, hearing loss or even death. Yet early treatment and diagnosis, medications, and/or changes in diet can prevent or lessen the impact of most of these health problems.

Two years ago, changes were made to the program that drastically altered the amount of time blood spots and test results could be retained. Now, after only 71 days parents and providers no longer have access to blood spots, despite the fact that testing can often take up to six months or longer to confirm a diagnosis. After two years, parents have no access to data (unless they make a special request) and therefore lose the ability to access that critical information for the purposes of retroactive investigation or sibling comparisons. And lastly, these changes mean that the department of health cannot use de-identified information for research to create new life-saving tests.

This year, legislation is being proposed to return Minnesota’s Newborn Screening program back to the nation-leading one it once was. House File 2526/Senate File 2047 would allow parents to store their children’s blood spots and test results indefinitely, preserving access to the life-saving information they need. We owe it to our kids, their parents and our communities to strengthen programs that can be used to not only save lives but to protect those in the generations to come.

Until further legislative changes take place, parents can request to have their blood spots and test results retained for a longer period of time on the Minnesota Department of Health website.

Take action!

You can help restore Minnesota’s Newborn Screening Program to its nation-leading status by calling members of the Senate Judiciary committee by Thursday, March 20th, 2014 at 5 p.m. and asking for their support of the Newborn Screening bill, H.F. 2526/S.F. 2047.

Calling is easy and it just takes a minute! (Phone numbers below). If you are a constituent of the person you call, make sure to let them know! Look up your legislators and compare them to the list below. Here is a sample of what you can say:

———

Hello,

My name is [your name] and I am calling to ask for Representative [last name]’s/Senator [last name]’s support of the Newborn screening bill, H.F. 2526/S.F. 2047.

This bill will allow parents and families to have access to the newborn screening spots and test results for a longer period of time, allowing for follow-up care re-analyses and sibling comparisons. I support this bill because it will help all children have the best chance for a healthy start in life. I hope [Legislator’s name] will support it as well, by voting in favor when the bill is heard in committee.

Thank you!

Once you call committee members, send a note to Katie Rojas-Jahn at [email protected] to let us know you took action. 

Here’s who to call:

Senate Judiciary committee members

Chair: Senator Ron Latz 651-297-8065

Vice Chair: Senator Barb Goodwin 651-296-4334

Senator Warren Limmer 651-296-2159

Senator Bobby Joe Champion 651-296-9246

Senator Dan D. Hall 651-296-5975

Senator Kathy Sheran 651-296-6153

Senator Kari Dziedzic 651-296-7809

Senator Scott J. Newman 651-296-4131

Five Question Friday: Danielle Horgen

March is Brain Injury Awareness Month, and to recognize it, we chose to highlight Danielle Horgen, PA-C, of Neurosurgery at Children’s. She took some time to talk about her work with patients and life outside of Children’s.

Danielle Horgen, PA-C, has been in Neurosurgery at Children's since October 2013.

How long have you worked at Children’s?

I started working in Neurosurgery in October 2013.  I love working with children and their families and am so happy to be a part of the care provided at Children’s Hospital.

Describe your role.

I am a physician assistant in the Neurosurgery department. We have a great team consisting of three neurosurgeons, three nurse practitioners and one physician assistant. We all work together to make sure our patients receive quality care. My role is to interview and examine patients, order and interpret images, prescribe medications and provide education to patients and their families in both clinic and inpatient settings. I get to see many of these children in consultation, first-assist in their surgeries and manage their care during the hospital stay and follow-up visits. It is very rewarding to be present throughout the entire process!

Do you have a favorite memory from working at Children’s?

It’s difficult to pick a favorite memory. We see some pretty amazing kids, all with unique stories and experiences, and certainly their own little personalities that are so fun to work with! I’ve been told some great jokes, participated in dance parties with nurses and patients on the floor and received some motivational speeches from some pretty inspiring kids. I once got a lesson from a little boy with a brain tumor about being happy and staying positive. Although this field has its share of difficult times, I feel that it’s an honor to be able to guide a family through these moments.

How do you spend your time outside of work?

I have been married to my husband, Darin, for eight years, and we have a chocolate Lab named Casey. I love spending my time with these two! We also have great families in Iowa and Minnesota, including 10 nieces and nephews that we love dearly and see as often as we can.

What’s one interesting fact about you?

I played tennis, softball, gymnastics and volleyball growing up. During my senior year of high school, my tennis team won the state championship in Iowa. (It probably didn’t hurt that the two top ranked players in the state played on my team, too). Despite this, my husband, who never played tennis, still can beat me almost every time.

Sleep health in children

Teaching kids to fall asleep on their own at the beginning of the night without your presence is an important skill for them to learn. (iStock photo / Getty Images)

By Karen Johnson, RN, CNP

Getting enough sleep is essential for your child’s growth and health. Studies show that many children don’t get enough sleep each night. This can result in behavioral problems, mood swings and poor school performance. A lack of sleep also can cause problems with memory, concentration and problem solving.

Occasional bouts of sleeplessness or restless nights are normal for kids as their bodies and brains develop, and the tips below can help you ensure your kids are getting enough rest.

But sometimes your child may not be getting enough sleep due to a sleep disorder. One of the most common sleep disorders in children is Obstructive Sleep Apnea (OSA). Signs of OSA in children are loud snoring, restless sleep, gasping and hyperactivity when awake. Risk factors for having OSA in children are having enlarged tonsils or adenoids, being overweight or certain other genetic or health disorders. Speak with your child’s health care provider if you think that your child might have OSA.

Here are some tips for helping your kids get a good night’s sleep:

Create a soothing and regular routine for sleep: A routine can help your child get ready for bed much easier. Studies show that children who have a bedtime routine wake up fewer times during the night. The bedtime routine should be the same every night, such as reading one book and singing one song, not lasting more than 15 to 20 minutes.

Maintain a consistent bedtime and wake time: Keeping the wake time and bedtime the same, even on weekends and vacations, is important to help maintain circadian rhythm.

Be conscious of light and darkness: Both are very influential in sleep-wake cycles. Bright light in the morning is influential in setting the circadian rhythm and helping children wake easier. Opening the curtains in the morning to let in the sunlight is the most powerful source of light; artificial light can be helpful as well. Dim the lights in the evening prior to the bedtime routine to cue your child’s internal clock that it’s time for sleep.

Keep electronics out of the bedroom: The light from televisions, computer screens, video games and mobile devices like cellphones can prevent your child from sleeping. It’s best to turn off all electronics at least one hour before bedtime, and in their place, do a calming activity such as reading or coloring.

Naps are important: Younger children need regular and predictable naps during the day. When your child is napping only once a day, don’t let him or her nap late into the afternoon, as this will interfere with the child’s ability to fall asleep at the regular bedtime.

Teach your child how to self-soothe: At an early age, put your child into his or her crib or bed when he or she is drowsy but still awake. Teaching kids to fall asleep on their own at the beginning of the night without your presence is an important skill for them to learn. Children naturally wake two to six times a night, and if they do not know how to self-soothe, they will cry to alert you that they are awake. Not only does that disrupt their sleep, but yours as well.

No caffeine allowed: Caffeine is not recommended for kids, but if you allow your child any, make sure it is before 3 p.m., as it can delay the onset of sleep at bedtime.

Consistency is key to success: Be patient and persistent, as the investment is well worth it when your child is sleeping better.

Make sleep a priority for your child and family: Teach your child about the importance of sleep by being a good role model in your own sleep habits.

Karen Johnson, RN, PNP, is a nurse in the Children’s Sleep Center at Children’s Hospitals and Clinics of Minnesota. Her interest in pediatric sleep medicine stems from her passion to assist children in improving their sleep. She views sleep as a necessary function so that children can be alert, focus in school, reach their learning potential and have energy to play and be kids.

The Children’s Sleep Center is one of the only pediatric-centered programs in the region and one of only a handful that is nationally accredited by the American Academy of Sleep Medicine.

Girl Scout Day at Children’s – Minneapolis

Children's is hosting Girl Scout Day on March 29.

Are you the parent of a Girl Scout or the leader of a troop? If so, mark your calendar for Girl Scout Day at Children’s – Minneapolis 10 a.m. to noon Saturday, March 29.

We’re excited to be hosting our second Girl Scout Day at Children’s to bring troops together and honor their generosity and hard work for Children’s patients and their families. An exciting day of celebration will include Children’s speakers, a tour of the hospital’s public spaces, a few fun activity stations and a photo booth with Children’s mascot, Twinkle!

To learn more about Girl Scout Day, register your troop or learn about ways your troop can make a difference, contact Maggie Overman at [email protected].

NOTE: Space for this event is limited and registrations are taken on a first-come, first-serve basis, so sign up today.

Signs and symptoms of a concussion

(iStock photo / Getty Images)

March is Brain Injury Awareness Month. As part of that, we’re sharing some concussion safety tips.

What is a concussion?

A concussion is a type of traumatic brain injury caused by a blow to the head or body. Symptoms can show up right after the injury or may not be noticed until hours or days later.

Signs and symptoms to watch for:

  • Headache or dizziness
  • Drowsiness or sleepiness
  • Focus or concentration problems
  • Blurry or double vision
  • Balance or coordination problems
  • Disorientation or mental confusion
  • Memory loss
  • Slowed thinking or speech
  • Blank or vacant look
  • Loss of consciousness
What to do if your child displays concussion symptoms:
  • Immediately remove your child from activity
  • Seek medical attention
  • Tell your child’s coach or teacher
Children’s Concussion Clinic

651-220-5230
8 a.m. to 4:30 p.m. Monday-Friday

Children’s Specialty Center (ground floor)
2530 Chicago Ave. S.
Minneapolis, MN 55404

Garden View (third floor)
347 N. Smith Ave., Suite 300
St. Paul, MN 55102

Five Question Friday: Bobbie Carroll

Patient safety is our top priority at Children’s. In recognition of National Patient Safety Awareness Week, Bobbie Carroll, RN, MHA, and our senior director of patient safety and clinical informatics, shares how we’re working to maintain the highest standards of safety and quality for our patients and their families. 

Bobbie Carroll, RN, MHA, is senior director of patient safety and clinical informatics at Children's.

How long have you worked at Children’s?

I have worked for Children’s 12 years.

Describe your role.

I am a registered nurse, and during my clinical career I worked in general pediatrics in the hospital and clinic settings. My interest and career moved into informatics when working on a project to help translate medical terminology for computer programmers when they were starting to develop electronic medical records. In time I started working as a project manager with a consulting firm, working on a variety of projects, which introduced me to Children’s. I started here working on a project converting our organization’s electronic systems onto our electronic medical record. During this project and after, Children’s recognized the value of informatics to assure we look at the clinical workflow and partner with staff as we develop, design and introduce technology at the bedside. Patient-safety opportunities are at the forefront of our efforts. Using technology wisely can help our organization in our pursuit of zero patient harm. I am fortunate to have the opportunity in leading our organization’s informatics team as well as patient-safety efforts.

It’s National Patient Safety Awareness Week. What kind of things does Children’s do to make sure we are providing a safe environment for our patients?

We partner with our employees to support a culture of safety at Children’s and reduce patient harm. Some of the ways we do this is learning about our stories and events reported by our employees through our safety learning reporting (SLR) process. Our Quality and Safety team reviews every SLR that is submitted and look for system gaps and opportunities that we can address to reduce the potential for error. This is a very powerful tool in assuring we have a pulse on the care we provide our patients.

Children’s was the first pediatric hospital in the U.S. to use a closed-loop medication-administration system using two-way communication between infusion pumps and the electronic medical record. The system has helped us avert potential medical errors and has advanced patient safety throughout the hospital.

Across Children’s, we also focus our attention on hospital-acquired conditions such as adverse drug events, hospital-acquired infections, pressure ulcers, patient falls and other preventable harm events. We also work with staff on the creative ideas they have to prevent harm in their care areas.

When you were a kid, what did you want to be when you grew up?

I really wanted to be an airline “stewardess” back in the day! Now they are referred to as airline attendants and, while I respect their work, the position doesn’t seem near as glamorous as it did when I was a little girl.

How do you spend your time outside of work?

I am pretty low-key outside of work and love spending time at home. I am somewhat of a “foodie,” so I like trying new recipes out on friends and family. I also like to plan our various vacation locations to experience new places. I have three beautiful granddaughters that I enjoy spending time with who constantly remind me about the important things in life.

 

Henry’s story: More than a little bump on the head

Bruce and Amy Friedman appear with seven of their nine children, including 2-year-old Henry, in the family's 2013 Christmas card. (Photos courtesy of Bruce and Amy Friedman)

By Bruce and Amy Friedman

We took six of our nine children from our home in Omaha, Neb., to Minneapolis on Dec. 20 to visit their eldest brother, Ricky, who had taken a position in Minnesota. We were excited to see Ricky, do some last-minute Christmas shopping at the Mall of America and spend some good family time together.

After a long day at the mall, which included a visit with Santa Claus, we decided to head back to the hotel before meeting Ricky for dinner.

Our 2-year-old son, Henry, fell asleep in his car seat almost immediately en route to the hotel. We decided to wake him and take him to the pool, as he adores the water, pools, spas and baths.

Henry Friedman, 2, followed Santa Claus at the Mall of America in Bloomington, Minn.

Henry was excited to be at the pool with his brothers and sisters. He had been sitting on his daddy’s lap for a few minutes in the hot tub but clearly wanted to return to the pool where his brothers were playing. 

Bruce lifted Henry out of the spa, and, as he was getting out behind Henry, we watched Henry take two steps on the hard, slippery floor and his legs went out from under him, like someone had yanked a rug out from under his feet. It all happened as if in slow motion.

Boom. Boom. Boom.

Bottom. Shoulder. Head.

We were at his side in an instant. Henry never lost consciousness but was angry and scared. He cried. Bruce picked him up, consoled him and inspected every inch of his body — no marks, bumps, scratches or bruising.

Since he missed most of his afternoon nap, we decided to take him up to the room and let him rest before dinner. About 45 minutes later, we woke him up. He was cranky, but he walked, talked, ate and acted relatively normal, but he was agitated and tired.  Reluctantly, we decided to let him nap again rather than go out to eat.

About 20 minutes into his second nap, Henry broke out in a cold sweat. Bruce decided to rouse him but was unable to get him completely aware. He tried running a bath to see if that would wake him; we saw no reaction.

A light bulb went off. We realized that something major could be wrong. Bruce placed Henry on the bed and pulled his eyelid up. Henry’s right pupil was dilated. Bruce grabbed his cellphone and turned on a flashlight to see if Henry’s eye would react to the light.

Nothing.

Amy had left to pick up pizzas, so our daughter called her to tell her that something was wrong with Henry and that we needed to get to the hospital immediately. She was back in the entryway waiting when we raced Henry downstairs. Amy held him in the backseat of the car while Bruce jumped into the driver’s seat and set the GPS for the Minneapolis campus of Children’s Hospitals and Clinics of Minnesota, about 10 miles from the hotel. 

Henry is intubated in the pediatric intensive care unit (PICU) at Children's — Minneapolis in this December 2013 photo.

Along the way, Amy kept a close eye on Henry. He wasn’t fully conscious but was breathing.

Halfway to the hospital, Henry started to posture; his legs became stiff and rigid. When we arrived at what we thought was Children’s, we followed the signs to the Emergency Department, but unknowingly ended up in the ED of Abbott Northwestern Hospital on the same block.

We were whisked into a room and several people worked to stabilize Henry and assess his condition. Almost immediately, the ED physician said that he needed to go to Children’s and that an ambulance would take us there. They notified Children’s to assemble their trauma team.

Once at the Children’s ED, we met the neurosurgeon, Walter Galicich, MD, almost immediately. He told us that a CT scan and surgery were absolutely required to save Henry’s life.

Things moved fast from there. We followed Henry and the team from the ED to the CT scanner and then to the surgical area. The doors closed, and we were left in the waiting area; it was out of our hands. It was amazing that only minutes earlier we were just arriving in the ED.

After surgery, Dr. Galicich was guarded with his prognosis, simply saying we have to see how Henry comes out of it the next morning. What was clear was that Dr. Galicich and the quick work of the whole team at Children’s had saved our child’s life. We knew at this point that Henry would survive the injury, but we wondered if he would wake up, recognize Mommy and Daddy, speak, laugh, or even be able to walk. 

Henry smiles at his father, Bruce, while recovering at Children's — Minneapolis.

The next morning, in the pediatric intensive care unit (PICU), Henry was taken off of the medication that kept him sedated overnight and extubated. We were ecstatic when he cried and moved his extremities. That excitement gave way to more wondering. Could he see us? Would he recognize us? Would he sit up, walk and talk again? Day after day, Henry began picking up those basic life functions that the injury temporarily had taken from him.

Henry spent nine days recovering at Children’s. And each step brought excitement — then wonder — as to what he’d do next. All along the way we had wonderful nurses, doctors and staff share our joy, strive to make Henry comfortable.

Members of the various teams — including the trauma and neurological teams — answered our many questions day after day. They were patient with us and loving and caring with Henry. It wasn’t an easy job, either — dealing with parents who had almost lost their 2-year-old, and Henry, who was angry, hurting and scared.

Soon, Henry began to sit up on his own in a wagon, lift his sippy cup to his mouth and was saying “Mommy” and “Daddy.” We were able to transfer him ourselves to a pediatric rehabilitation hospital in Lincoln, Neb., on Dec. 30.

Henry spent 23 days there, but he’s home now and continuing to make progress. We are hopeful he will make a full recovery.

A CT scan shows nearly one-third of Henry's skull filled with blood, causing severe pressure on his brain.

The day before we left Children’s, Dr. Galicich came by to see Henry. He was happy to see how well Henry was doing and amazed at the recovery he had made. At that time, he told us how serious the injury was — when Henry fell and hit his head, it caused an epidural hematoma, a brain bleed. Nearly a third of his skull had filled with blood, causing severe pressure on his brain. It’s quite unlikely that an adult would have survived the injury, and we probably were mere minutes away from losing Henry.

In addition to the wonderful care they gave Henry, the staff at Children’s took the time to assure us that there were presents in his room on Christmas morning, and that we, his parents, had a place to stay in the hospital or nearby. They reminded us to take care of ourselves (get enough sleep and enough to eat) so that we were able to take care of Henry.

Our family is tremendously indebted to the doctors, nurses and all of the staff members at Children’s. Thank God that this facility was close, that a neurosurgeon was in the hospital when we arrived and that everyone there knew how to provide our child with the best possible care.

———

What to do in the event of a traumatic brain injury

According to Meysam Kebriaei, MD, a pediatric neurosurgeon at Children’s, if your child experiences any kind of head trauma, keep an eye out for the following signs and symptoms: 

  • Loss of consciousness
  • Progressive and worsening headache
  • Lethargy or fatigue
  • Vomiting
  • Increased irritability
  • Post-traumatic seizures
  • Post-traumatic memory loss
  • Unequal pupils
  • Weakness on one side of the face or body

Should you notice any of them, it’s best to bring your child in for an evaluation by a medical professional.

Children’s at the Capitol: Child health and wellbeing a big focus this year

(Kristin Marz, kristinized / Flckr)

Briefcases and business suits are lining the halls of the Capitol once again as the legislature reconvened for the 2014 session this week. The governor and legislative leaders have been promising a shorter, more focused session, but with all 134 house members and the governor up for re-election in November, legislators will be working on legislative successes they can take back to their districts.

This year, Children’s will be supporting several policies that impact the health of kids in our state.

School lunches
Recently, the internet exploded with stories about a school in Utah that was denying children lunches who couldn’t pay their lunch bill. Not only were they refusing to feed the children but they were throwing lunches away right in front of them. Unfortunately, amidst the uproar and outrage we learned that many schools in Minnesota do the same. A recent report from Legal Aid showed that 15 percent of Minnesota school districts report that their policies allow lunchroom staff to refuse hot meals to students who can’t pay.

As the state’s leading provider of health care for children, we know this is unacceptable. Children need food to grow and to learn. And they shouldn’t be punished or stigmatized because their family has limited resources or because someone forgot to pay a bill.

Children’s is part of a coalition working to put a stop to this practice and will advocate providing all students with access to a healthy school lunch. With an estimated cost to the state of $3.5 million, the costs of not providing children with adequate nutrition are far greater.

Newborn screening
Since its inception over 50 years ago, Minnesota’s newborn screening program has saved the lives of over 5,000 babies. But once a nation-leading program, recent legislative changes have begun to put Minnesota children at risk.

Between 24-48 hours after birth, blood is taken from a baby’s heel and tested for over 50 congenital conditions including cystic fibrosis and sickle cell disease; conditions that often are asymptomatic at birth but that once detected can be treated. Prior to 2013, the test results and data were stored so that at any time they could be accessed for additional testing. Unfortunately, in 2013, changes were made so that test results and blood spots would be destroyed after two years and 71 days, respectively. This means that millions of children’s results are now being destroyed.

We will be working to restore the newborn screening program to ensure that parents and children have the option and ability to save their test results for future use. You can read the stories of just a few of the children that have been saved by the program.

Mandatory flu vaccines for health care providers
This flu season, Children’s has seen over 520 confirmed cases of the flu. For some patients, it’s a quick diagnosis and visit. For others, it can mean an overnight stay, admission to our ICU, or even requiring ECMO (heart-lung bypass) treatment. Children and those with immune-suppressed systems are the most vulnerable, and for a very small few, they may never survive.

We know that a hospital should be the place where people and children go when they are sick, not to become sick. Being protected from the influenza virus is one small but important step in doing that, so Children’s is supporting a bill that would make flu vaccines mandatory for health care providers.

The good news is that Children’s is already a leader among hospitals. Ninety-three percent of our employees receive their vaccination. But we can do better and so can many other hospitals.

Early childhood education scholarships
Healthy children are learning children. Research shows that investment in high-quality early childhood education improves health outcomes, socio-economic status and school achievement. Every year, over 50 percent of new kindergartners are not prepared with the skills necessary to succeed in school.  As a result, many children lag behind their peers never able to catch up.

Our health care providers know how crucial education and developmental opportunities are for children ages 0-5. That is why we have joined MinneMinds, a coalition of non-profits, education organizations, health care providers, and businesses, that are devoted to assuring access to high-quality early education programs for our early learners most in need.

Photo by Kristin Marz (ristinized on Flckr)

Five Question Friday: Tanya Bailey, MD

Tanya Bailey, MD, has had some interesting jobs before she became a pediatrician at Children’s. Learn more about how she found her calling to become a doctor in this week’s Five Question Friday profile.

Describe your role. I have been a pediatrician in the Minneapolis General Pediatric Clinic since July 2012. I work full time in the clinic and also see newborn infants at the Mother Baby Center.

What drew you to Children’s? I didn’t come into medicine via a traditional path. In fact, it wasn’t even on my radar until I was almost 30 years old. Neither of my parents went to college and I don’t think a lot was expected of me academically, though the expectation that I work hard was always there. I had my first job at age 12, was employed most of the time after that, and supported myself in my late teens. I had many different jobs in my life before becoming a doctor: berry picker, cook, office assistant, accountant, gardener, Zamboni driver, resident assistant, personal care attendant, teacher’s aide and lab tech, to name a few. I was really proud at one point to say that I had a license to drive both a Zamboni and a Bobcat skid steer loader. I’ve lived in four different states across the northern part of the U.S. and my most unusual living situation was when I lived in a cabin with no running water and an outhouse when I was in college in Alaska.

What do you love most about your job? When I began looking for a job after my pediatric residency, I knew I wanted to work in a city with a diverse patient population and to have the opportunity to take care of patients in both inpatient and outpatient settings. I was initially looking to move back to the West Coast where I grew up, but told myself that if a position ever opened up at Children’s I would apply. I had enjoyed my time here as a Child Life volunteer before I started medical school and also had two wonderful rotations at the hospital as a medical student. I very much admired and was inspired by the physicians I worked with as a student and always thought they’d make great colleagues (I was right, by the way). I enjoyed the general environment at the hospital with the focus on children and their families and the diversity of the patients and the community. Now that I’m here, I love the variety that every day brings. I am never bored and I get to work with great colleagues, patients, and families. I enjoy developing relationships with families, watching their children grow up, and taking care of subsequent children.

How do you spend your time outside of work? Outside of work I enjoy working on home improvement projects both in the house and in the yard, reading (I love young adult and teen novels and get many great recommendations from my patients), cooking, and I’ve recently taken up soccer.

If you weren’t working in medicine, what do you think you’d be doing? If I wasn’t in medicine, I think I would be doing something involving gardening or cooking. I’m not sure, though. That’s what I’d do now because those are things I enjoy as hobbies. I’m not certain what I’d be doing if I’d never pursued medicine. I’d need a job that kept me busy, was challenging, and didn’t involve spending too much time sitting in one place or in too many meetings.

Gavin’s story: An update by Nicole Pierson


By: Nicole Pierson

As we approach Gavin’s 17th surgery, we do so with sadness, hope, determination and caution

Gavin Pierson is a 7-year-old patient at Children’s Hospitals and Clinics of Minnesota. His journey began on April 7, 2012 after an unexpected brain tumor diagnosis. Gavin is a tough, brave boy with hopes and dreams. These dreams start with one day winning the battle against his brain tumor, who he has named Joe Bully.

Gavin’s journey has been filled with countless ups and downs. Last year, we hit an “up” when Gavin was granted compassionate use of a drug called Palbociclib, which is made by Pfizer. He’s the only child in the U.S. using the medicine, and it has stopped the progress of his fast-growing, benign tumor.

Then in October, Gavin was the first patient in the Upper Midwest to undergo a laser ablation surgery at Children’s for his brain tumor. He’s the only person in the country to have a mature teratoma successfully ablated with this laser technology.

After the procedure, Gavin did well and quickly bounced back. He was on the mend and doing well until Nov. 20, when we brought him into the ER. Gavin had complained of tingly feelings in his arm and leg along with sudden speech problems. The right side of his face was paralyzed, and he suddenly couldn’t speak coherently. Once in St. Paul, a CT scan showed no abnormalities, and Gavin was admitted overnight. The next morning, an MRI showed a serious and extensive blood clot in many veins in his head. The clot could have caused a stroke, bleeding, coma or death. He was put on blood thinners and remained hospitalized for almost two weeks.

Gavin was tested for a blood disorder that might be causing the clots, but nothing was found. The clot is not believed to be a result of the laser procedure, but instead has become a separate hurdle that has developed slowly over time. Given that this clot is the second Gavin’s had in two years, he will likely be on blood thinners for a long time.

After gaining strength, energy and improving his physical abilities, Gavin required steroid treatment to decrease the blood clot swelling. While the steroids are necessary, they have so many negative side effects, including weight gain, muscle weakness and mood change.

As we fast-forward to today, we’re thrilled to share that Gavin has improved significantly and is ready to continue his battle against Joe Bully with another laser ablation procedure. This amazing technology allows the surgeon to repeat treatments without a limit. Our hope is that this surgery will knock the bully down further than before. Of course, our hope is that it will eliminate the last of Gavin’s brain tumor, but there are no promises. Gavin’s medical team can’t guarantee this will be the last as Gavin is the first for so many things.

Although it would be nice to have a predictable disease, having options and hope is better than the alternative. A year ago, our hope was slipping away. Today, we have a medicine and a surgical technique that complement each other. And we are thankful for the amazing care Gavin has had and continues to receive at Children’s.

If you can believe it, Gavin is excited for surgery. He wants to win this epic battle against Joe Bully and he has an amazing army supporting him. He inspires everyone around him, and he has inspired us as his parents to fight harder even when it seemed we had no options left. He’s overcome obstacles that only superheroes could have toppled and he’s amazed his doctors and care team over and over again. Gavin’s inspiration drives all of us to continue fighting and never give up.

As we approach Gavin’s 17th surgery today, we do so with sadness, hope, determination and caution. Sadness because we never imagined this life for our son – who was perfectly healthy for almost six years; hope that this procedure will cure him and give hope to other families in the present and future; determination to beat Joe Bully; and caution because we have to tread carefully on this journey, making all the right moves and not losing sight of our goal.

This is our story. Thank you for being a part of it.