Category Archives: Philanthropy

Five Question Friday: Tami Koth and Morgan Koth

In honor of Nurses Week and Mother’s Day, we’re bringing you a double feature Five Question Friday. Meet Tami Koth, RN and assistant nurse manager on the seventh floor in Minneapolis, and her daughter, Morgan Koth, who works in the Children’s Foundation.

Tami Koth, RN, and daughter Morgan are Children's employees.

How long have you worked at Children’s?

Tami: I’ve worked here for 28 years.

Morgan: I have worked at Children’s for one year. Before my time in the Foundation, I worked as an intern in Genetics during my senior year of college and logged countless hours as a Children’s volunteer starting in 2002.

Describe your role at Children’s.

Tami: I am a nurse and assistant nurse manager on seventh floor, where we see both medical/surgical patients as well as hematology/oncology patients.

Morgan: As a corporate development associate for the foundation, my job is to help our corporate donors engage their organizations, employees and customers to support the patients and families of Children’s. When people band together, they can do amazing things and I love seeing that magic happen with our corporate groups.

Tami, why did you decide to go into nursing?

I was hospitalized a few times as a child. My last hospitalizations actually took place at Children’s in Minneapolis. I saw what the staff was able to provide to sick children and thought if I ever became a nurse I wanted to end up back here! My mother was a nurse and this directly influenced my decision to go into nursing.

Morgan, did your mom’s career influence your decision to work at Children’s? Absolutely. When I was in elementary school, she brought me to Children’s for “Take Your Child to Work Day” where I got to experience some of Children’s magic. Starting in the summer I was 13, I came in every Tuesday to volunteer at the hospital while my mom worked her shift. She inspired me with how thoughtful she was with patient families and the kids. For a long time, I wasn’t sure what my role would be at Children’s, but I knew early on that I wanted to be like my mom.

What do you love most about your job?

Tami: The greatest part of my job is in my role as assistant nurse manager. I gain leadership opportunities and also have my days providing patient care to our medical/surgical and hematology/oncology population; it is a great balance. Actually, one of my new favorite parts of my job is getting to have lunch with my daughter!

Morgan: My favorite moments are in the rare opportunities I get to meet with patient families at corporate events. Seeing the joy of the kids and their parents who are able to have fun and simply be a family makes this the best job in the world, hands down.

How do you spend your time outside of work?

Tami: I enjoy spending time with my husband and friends; one of our favorite summertime activities is attending outdoor concerts at the Minnesota Zoo.

Morgan: I love to stay active. You can often find me running around Minneapolis training for a few races this year. I also love to cook and try new foods, plan the next trip and enjoy the simple things with my friends and family.

Children’s Star Gala raises nearly $2.1 million

More than $2 million was raised at the 23rd annual Children's Star Gala on Saturday, April 5, 2014.

The 23rd annual Children’s Star Gala was held Saturday at The Depot Minneapolis. Nearly 1,100 guests joined us for an evening of inspiring stories, dinner, dancing and silent and live auctions.

Thanks to the support of generous sponsors, donors, attendees and volunteers, we raised nearly $2.1 million for the Midwest Fetal Care Center. Their generosity will help us expand our fetal care program – allowing us to detect, diagnose and treat babies before they are born. This sometimes results in operating on a baby while he or she still is in the mother’s womb – imagine the possibilities.

Visit our archived live blog to get a glimpse of the evening, or watch this segment on KARE 11 which showcases 9-year-old Children’s patient Cecilia performing “Let It Go” from the movie “Frozen.”

Over the next couple weeks, we’ll introduce you to patients and families that shared their stories at the event. Stay tuned for some inspiring videos and stories!

Live blog: Star Gala

Children’s Star Gala is a spectacular evening of inspiring stories, dinner, dancing and silent and live auctions that raises more than $2 million annually – making it one of the five largest fundraising events in the Twin Cities. This year, funds from the 23rd annual event will support the Midwest Fetal Care Center. Thanks to advances in fetal medicine, we are able to detect, diagnose and treat potential problems before a baby is born, including, when necessary, fetal surgery. With your support, we will become one of only five advanced fetal care centers in the U.S. Imagine the possibilities.

Gavin’s story: An epic battle against Joe Bully

Gavin is just one of the many brave kids that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Gavin. Scroll to the bottom to watch an interview with the Piersons.

If you’ve ever wanted to meet a superhero, look no further than Gavin Pierson.

For the past year and a half, Gavin has been in the fight of and for his life, taking on a brain tumor that he nicknamed Joe Bully. 

In his latest battle, Gavin, 7, was the first person in the country with a mature teratoma to undergo Visualase MRI-guided surgery to incinerate his tumor. The surgery represented the most significant development in Gavin’s case. For the first time, his neurosurgeon, Dr. Joseph Petronio, discovered that Joe Bully had a weak spot. But the victory felt short lived. Gavin recently went home after spending about two weeks at Children’s for a blood clot in his brain unrelated to the surgery.

“Gavin’s nemesis is Joe Bully. He bravely goes into procedures, scans, and surgeries knowing it is part of the fight,” said his mom, Nicole Pierson. “Superheroes have to look fear in the face and overcome it despite the difficulties that arise. Gavin’s journey has not been without complications. Yet every time a new roadblock comes up, he knocks it down. He tells us every day, ‘I will never give up the fight, and I will win.’”

A villain is born

His epic battle began at a birthday party.

In a matter of just days, Gavin went from being a normal, healthy boy going to gymnastics and playing sports to struggling with double vision and having trouble looking directly at others. At his sister’s seventh birthday party, Gavin’s dad, Steve, asked his wife’s aunt, a pediatrician, to look at Gavin. Armed with a flashlight, she examined Gavin’s eyes. Seconds later, she suggested Steve and Nicole take their son to the emergency department at Children’s Hospitals and Clinics of Minnesota.

During the drive to Children’s, Nicole recalled that she and Steve were worried. They knew something was wrong with Gavin and feared he could go blind.

“I remember us saying, like literally looking at each other and saying, ‘Gavin loves this world so much and nature and science, and oh my gosh, what if he couldn’t see it.’”

Hours later, it would be Steve and Nicole who were blindsided.

Two physicians performed tracking tests on Gavin before order a CT scan. The family stayed in the emergency department following the tests. They were still there when a physician and surgeon returned to talk with Steve and Nicole. Steve could tell by the expressions on their faces that they didn’t have good news, he said.

“I kind of wish at that moment, it was like fast, and I was like can we just press pause because I’m not ready to hear what you have to say.  Unfortunately you don’t get to press pause, and that’s the thing about illness,” Nicole said.

It appeared Gavin had a brain tumor about the size of a golf ball, the physicians said.

Steve didn’t hear past tumor. “It was still ringing in my head that they just said my son has a tumor in his brain,” he said.

The Pierson family

The saga continues

In addition to the tumor, Gavin had developed hydrocephalous – fluid on the brain. He needed immediate surgery to place an EVD to drain the fluid. Following surgery, Gavin was admitted into the pediatric intensive care unit (PICU), where he spent the next eight days while his parents, along with a team of specialists, determined a course of action.

A biopsy indicated Gavin had a mature teratoma, a benign tumor. But his alpha-fetoprotein level was heightened, a potential red flag for cancer. Gavin needed to undergo chemotherapy for five months.

During treatments, Gavin watched as many movies as he wanted, played games, watched The Dude in Star Studio. It was like a hotel for him, Nicole said.

“From the beginning, he wasn’t scared of anything. He just felt like, ‘Alright, well, they’re going to fix me, and I’m going to fight and big deal. Move on,” Nicole said. “He just seemed like it was nothing. It was just a breeze for him.”

A few months into treatment, an MRI showed the tumor had doubled its original size. At the same time, results from Gavin’s blood test showed there was no cancer in his body.

The cancer was gone, but the Piersons and Gavin’s doctors had a growing problem on their hands, his tumor. Because it was benign, neither chemotherapy nor radiation would obliterate it. Gavin needed surgery.

On June 21, 2012, Gavin underwent his first of three craniotomies in six weeks to reduce the tumor. Complications quickly followed. He developed a blood clot, then needed a Hickman and two shunts. It was one issue after another.

In November, Gavin had his fourth craniotomy. Dr. Petronio, his neurosurgeon, was making headway. The tumor was shrinking.

But Gavin couldn’t undergo craniotomies forever. His oncologist, Dr. Kris Ann Schultz, reached out to Pfizer about an experimental drug that had only been used in adults. She asked for compassionate use, allowing Gavin, the first child, to try it. Pfizer declined.

It wasn’t all bad news that month. During the summer, Gavin had developed agnosia, in which Gavin couldn’t process words he heard. His family learned sign language – about 200 signs – which Gavin picked up quickly and still remembers.

Nicole recalls the first day Gavin heard words again. She was at home, on family leave, with Gavin and his brother, Gage, and she was talking to Gage in the front room of their home. She told him to put on his shoes because they were going to the library. Gavin ran into the room, “Mom, I heard you say library,” he said.

Tears.

November and December were good months for the Pierson family.  Gavin continued to recover from the fourth craniotomy. But around Christmas 2012, he started leaning to one side again. Nicole knew something was wrong. On Christmas Day, she called Dr. Petronio. Two days later, Gavin had an MRI, which showed the tumor had grown.

This is not Gavin’s fate

Gavin’s favorite hero is Batman. He doesn’t have a super power. His power is that he can do what no human can do. Gavin needed someone like Batman.

On Jan. 7, 2013, Dr. Petronio told Steve and Nicole that Gavin likely only had a few months to live. Craniotomies every few weeks and months weren’t going to cut it. They needed another weapon.

Nicole and Steve became desperate. Dr. Schultz contacted Pfizer again. Meanwhile, the Piersons reached out to local media and created a petition on Change.org, anything that might sway the drug company to grant Gavin use of the experimental drug, Palbociclib, which had only been used in clinical trials in adults.

“When the standard approach isn’t working, you have to work hard to find a better answer. There are new treatments being developed all the time and it’s our job to try to match those emerging technologies to the patients who will benefit from them,” Dr. Schultz said.

The day before Gavin’s fifth craniotomy, the company agreed to discuss Gavin’s case at their compassionate use meeting.

“As the parent, you are supposed to make things better…and you just look at how sweet he is and you just, you know, we just felt like, oh my gosh, we just can’t give up,” Nicole said. “This is not his fate, and we were willing to go anywhere at that point and do anything.”

So was Gavin’s care team.

Gavin underwent his fifth craniotomy. Unlike the previous ones, he didn’t bounce back quickly. He needed therapy. It was six weeks before he could walk again.

There had to be a better answer.

Be strong and brave

It came while Gavin recovered from the craniotomy. Pfizer agreed to compassionate use, and Dr. Petronio found a laser that could potentially help destroy the tumor. For the first time in a long time, the outlook was good.

Gavin has been taking Palbociclib since he was approved for it last winter, and it has helped stabilize the tumor. And, the MRI-guided laser surgery in October helped decrease the size of the tumor.

His parents have never given up in their fight for Gavin.

“We have to keep pushing forward because, I’m telling you, it has not been easy.  I want it to be easier for other families,” Nicole said.  “I don’t want another kid to have to have five craniotomies before we have a drug that works or before we have a laser.”

The surgery, guided by MRI images, allowed precise targeting and was minimally invasive. Two days after the surgery, Gavin was back home trick-or-treating with his brother and sister.

He is so sweet to everyone he meets.  He has never made an enemy.  He is here for a higher purpose.  He is going to do great things in his life,” Steve said. “I want to make sure he gets the chance to do that, and that’s why, I think, one of the big reasons we keep pushing because every kid deserves a chance.”

Read a recap of his surgery.

 

Noelle’s story: Overcoming a food allergy scare, one year later

 

Ask Noelle Dilley for her favorite song, and she’ll tell you it’s “The Climb.” It’s a song about struggle and overcoming. About never giving up in the face of adversity.

Noelle knows an uphill battle. A year ago, she experienced her own when she suffered a major allergic reaction and walked the line between life and death.

She was at a church picnic when the 11-year-old licked the frosting of a safe-looking cupcake. But it contained peanut butter – the one ingredient she can’t have. She’s severely allergic. Just one lick landed Noelle at Children’s Hospitals and Clinics of Minnesota where she spent 31 harrowing days fighting for her life. She ultimately recovered, thanks to the excellent care she received, a community of staff, friends and family who never left her side and the power of prayer.

“She is a miracle,” said her mom, Renae Zaeska.

Noelle went into cardiac arrest and CPR was performed. Her heart started pumping again, but her lungs were so inflamed and full of mucous that she was unable to use them. During her first night, her lungs moved less air than a premature baby’s would. She was ultimately put on ECMO (extracorporeal membrane oxygenation), a technique that provides cardiac and lung support to patients whose heart and lungs are severely distressed.

She underwent surgery, endured numerous procedures including a bronchoscopy and was tested time and time again as she recovered.

But, recover she did. After a month in the hospital, she went home, where she continued physical, occupational and speech therapy. Within months, Noelle was playing basketball again.

While she continues to go to therapy for neurological damage – she has short-term memory loss – she is almost 100 percent recovered.

“She progressed so fast,” said her dad, Dewy Zaeska.

Noelle returned home to a school and community that have taken several measures to help her avoid another allergic reaction.  She eats at a peanut-free table and has her own computer at school. Her classroom is wiped down every day. Her school has also implemented a grab-and-go plan should the unthinkable happen.

Earlier this month, the president signed a bill that offers a financial incentive to states if schools stockpile epinephrine, considered the first-line treatment those with severe allergies.

Noelle’s parents have taken measures of their own. Last year, they avoided family gatherings during the holidays, unwilling to take any risks around food. They seldom go to restaurants. Noelle also takes Xolair, a treatment to reduce the sensitivity to allergens, every two weeks.

Though Noelle may seem back to normal, her family will never recover from the scare.

 “They told us you will probably never get over this, and I see why,” Dewy said.

When Renae has a bad day, she goes home and immediately hugs her daughter.

Noelle created a photo journal from her hospitalization to help understand what happened to her. While she was sedated most of the time at Children’s, she remembers aspects, some more vividly than others. She worked closely with a music therapist while she regained strength and would like to become a music therapist one day.

The family continues to make the 90-minute trek to Children’s for follow-up care. Every time, they want to thank Noelle’s team of doctors.

“How we feel about that whole system…it’s out of this world,” Renae said. “It’s an A+ team.”

Read the original story we published last year about Noelle.

Noelle is just one of the many brave kids that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Noelle.

Five Question Friday: Jesse Stremcha

Give to the Max Day — Minnesota’s day of generosity – is just around the corner on Nov. 14. So, there’s no better time to interview Jesse Stremcha, who’s played a huge role in leading our online giving efforts, than now.

What is a typical day like for you at Children’s? Busy!  Lot’s of emails, lots of meetings, lots of work all trying to get the community excited about investing in Children’s success and the health of Minnesota kids.

What fires you up most and brings you back to Children’s, day after day? We have a great mission.  I know every day I get to work with smart, driven people to support that mission.  That…and…a good workout and a great cup of coffee in the morning.

Why is philanthropy important? I think we all have an urge to help others.  Philanthropy is one important mechanism for doing that.  I love this quote from Jimmy Buffett, “Some of it’s magic, some of it’s tragic, but I’ve good life all the while.”  I feel really lucky to do the work I do and have the opportunities I have and I make sure I can help others have “some of the magic.”  I give to organizations that make that happen in ways I can’t alone.

You’re helping support our Give to the Max Day efforts. Why should people support Children’s on GTMD? Give to the Max Day is an awe-inspiring day of generosity: More than 53,000 donors giving over $16.3 million to more than 4,300 nonprofits IN ONE DAY. WOW! I think people should give just to be part of something so amazing and so special to Minnesota.

If that’s still not enough, there’s great reasons to support Children’s:

1.  We do lots of stuff — Child Life, Sibling Play, Pet Therapy, Music Therapy and on and on– that makes Children’s a special place for kids.  Donors pay for that.

2.  We don’t turn kids away. One in three kids we see needs financial assistance of some kind.

3.  We provide some of the best care in the world in some of the best facilities in the world because donors invest in great health for kids.

We know you’re huge into biking. Where is your favorite place to go for a ride? I’m no good at favorites. I love to ride lots of different places. I think every trail and ride has a charm of its own. My ‘bread and butter’ ride is the River Road loop between the Ford and Franklin bridges. I also consider Lebanon Hills my “home” mountain bike trail, but I love Murphy-Hanrahan and Cayuna Lakes, too. I’ve recently discovered gravel riding and love to cruise the back roads around my hometown of Northfield, Minn.

Photo challenge: Color your support for Children’s for Give to the Max Day!

 

Color your support for Children’s for Give to the Max Day (Nov. 14) — the Great Minnesota Give Together — starting Nov. 7. Upload a photo corresponding with each day’s chosen color to Facebook, Twitter or Instagram and use the hashtag #childrensmngtmd. We will use all submitted photos to create a mosaic to be revealed on Give to the Max Day. In addition, we’ll randomly draw a different participant each day to win a poster of the mosaic.

 

You can also support Children’s by donating on Give to the Max Day! Like to plan ahead? Donations can be scheduled prior to Nov. 14.

Honoring Kayleen’s last wish

Kayleen Larson will forever be 9 years old.

Earlier this year, Kayleen passed away from leukemia. But, her life continues to be celebrated. On Sept. 16, neighbors, friends and the Children’s family came together at Children’s in Minneapolis to honor what would have been her 10th birthday – and her last wish.

She was a huge fan of Star Studio and the Dude, and she asked that every year on her birthday, her family stock Star Studio’s shelves with toys for patients. Toys arrived by the truckload on her special day. 

“Kayleen liked to have fun, and we liked to have fun together,” the Dude said 

The tradition started a year ago. When Kayleen turned 9, she asked for prizes for patients instead of presents for herself.

“We’re not done. This will go on,” the Dude said.

Thee Viking World Order will host its home opener party in honor of Kayleen on Friday and will collect gifts. Learn more here about the event.

Support Caring for Kayleen Legacy: Fight Like A Girl.

Watch friends and family sing “Happy Birthday” to Kayleen.

 

Five Question Friday: Ingrid Arnold

If I were president of the hospital, I would send every patient a volunteer. — patient sibling

Meet Ingrid Arnold, volunteer coordinator at Children’s Hospitals and Clinics of Minnesota.

Ingrid Arnold

What is your day in Volunteer Services like at Children’s? Though there are some daily tasks (providing volunteers with assignments, managing our department’s social media channels, planning our next recognition event or training new volunteers), each day brings its own variety–which I love. During volunteer interviews, I always ask the applicants why they chose Children’s. Some come in with a definite reason–for example, brother was a patient here–while others find their reason during their volunteer journey. I know that I’ve done my job when volunteers take pride in having chosen Children’s as the recipient of their time and talents, and when they truly live and understand our mission of providing the best care to our patients and families. We have unit coordinators, nurses, child life specialists, doctors, and volunteer coordinators (smile) who were all once Children’s volunteers. That speaks volumes!

What drew you to Children’s? Children’s is such an incredible place. To nurture my love of kids and healthcare, I volunteered on the Children’s Minneapolis campus throughout high school. I knew after my first shift that I wanted to work here when I finished college. The staff at Children’s share a common goal: to get kids better. Who wouldn’t want to be a part of that? We all have a role and work together to provide kids with the best medical care, emotional support, and developmental experiences possible. At Children’s we don’t just repair a cut or perform an appendectomy… we blow bubbles during an exam, provide healing through massage and music therapy, and have skilled volunteers to offer families a break!

What do you love most about working here? I have the pleasure of talking about Children’s and the incredible work that we do on a daily basis, whether in a volunteer interview, while training on the inpatient units, or at an orientation session. Giving back to the community is so important, and not only do I believe this, but Children’s does, too; I take great pride in that. I experience the act of volunteerism on a daily basis, and take pleasure in practicing it in my daily life. I enjoy helping at Children’s events, whether it be teaching kids about endurance at the Cystic Fibrosis Relay for Life Walk, serving lunch in the Ronald McDonald House, or talking about the services that we provide at the Baby Steps 3K. The opportunity to be a part of a kid getting well and leaving Children’s with a smile is the icing on the cake.

Do you have a favorite Children’s memory? As cheesy as it sounds, I make a rewarding memory every day–though there are a few that I will always remember. On one occasion, I spoke with a nurse who requested a volunteer for a baby whose parents needed to return to work; they were devastated to have to leave their baby. I introduced Mom to a wonderful volunteer, and watched Mom transition the baby from her arms to the volunteer’s. Mom left, wiped her eyes, put her hand on my shoulders and said, “Thank you.” She knew that her daughter was not only receiving the best medical care, but that she would be in the arms of a volunteer until Mom returned to the hospital after work.

When you were little, what did you want to be when you grew up? When I was little, I wanted to be a pediatrician. I have always had a passion for working with kids and have been intrigued by healthcare. I remember watching ER weekly with my dad, and being glued to the TV for Rescue 911 and other emergency medicine type shows. As I grew up, the fevers, sutures and needles became less appealing (much easier when pretending on dolls as a little girl), but my passion for helping others and interacting with kids remained. I am thrilled that these passions led me to Children’s!

Five Question Friday: Elin Neugebauer

 

Meet Elin Neugebauer, a health unit coordinator, at Children’s Hospitals and Clinics of Minnesota.

What drew you to Children’s? When my daughter was born with a congenital heart defect, my life changed in numerous ways. I have a degree in communication studies, and I wanted to begin advocating for children. Health care does not start and stop in the patient room, and Children’s is an amazing example of complete patient and family care. We are involved in the community in a variety of ways, and I was drawn to Children’s because of how much I wanted to be involved in our various programs.

Elin Neugebauer

What do you love most about Children’s? I love how Children’s encourages and provides opportunities to become involved with our families and patients outside of our daily department. Through our Making Safe Simple events, fundraisers like HeartBeat 5000, and various groups that assist with community events, education, advocacy, and policy, I have had the opportunity to be involved with Children’s in an incredibly enriching way. It has been wonderful to work with children and families in fun learning environments, and to receive additional education and training for myself on how we can improve children’s health care.

On June 22, you’ll participate in the HeartBeat 5000. Can you tell us about your team and why you’re participating? My daughter’s team is Seven of Hearts and this will be our second year at HeartBeat, first as a team. I chose that name because her first heart surgery was on July 7. Last year it was just her and I who ran in the event. I decorated the jogging stroller with hearts and pushed her while I ran. It was amazing to see all the teams gathered together, sharing stories about their heart kids, and advocating for congenital heart defect awareness and research. I was also greatly impressed with all the informational booths at HeartBeat,  and I came away with a lot of helpful information and new friends. This year Maija and I will be running with a team of eight people. Every step of the event, each connection made, they are all so important to the heart community. We are advocating for our children and spreading awareness of the most common birth defect.

If you could travel anywhere in the world, where would it be? Since I was a little girl, I have wanted to travel to Norway, Sweden, and Denmark. I grew up celebrating various Scandinavian holidays, enjoying special foods, and surrounded by numerous photos and traditional decorations. The fjords in Norway and the coastline and Nyhavn canal in Denmark are at the top of my list for sites to see.

Is there a staff member you’d like to see featured in Five Question Friday? Send your suggestion to Brady, social media specialist, at Brady.Gervais@ChildrensMN.org.