Category Archives: Philanthropy

Meet Julia

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Julia

Age: 8

Hometown: Elk River

When she was 5 years old, Julia was taken to Children’s after her mom discovered she was turning blue and feeling extra-tired. He lungs collapsed, and doctors discovered that Julia has a rare asthma, triggered by viruses.

When Julia grows up, she wants to be a veterinarian so she can take care of cute animals.

She likes practically everything about Children’s, so she’s raising $1,000 annually for the next five years to help other kids.

First-year nonprofit raises more than $62,000 for Children’s pain clinic

From left: Betsy Grams, CycleHealth executive director; Andrew Warmuth, Children's physical therapist; Kristina Swenson, CycleHealth Kid Advisory Panel leader; and Tony Schiller, CycleHealth chief motivator, pose for a photo Monday, Nov. 17, 2014, during an awards banquet to recognize the $62,800 CycleHealth raised for Children's Hospitals and Clinics of Minnesota.

From left: Betsy Grams, CycleHealth executive director; Andrew Warmuth, Children’s physical therapist; Kristina Swenson, CycleHealth Kid Advisory Panel leader; and Tony Schiller, CycleHealth chief motivator, pose for a photo Monday, Nov. 17, 2014, during an awards banquet to recognize the $62,800 CycleHealth raised for Children’s Hospitals and Clinics of Minnesota.

The new pain clinic at Children’s Hospitals and Clinics of Minnesota is the beneficiary of a generous group of kids.

CycleHealth, a first-year, Minnesota-based nonprofit, raised $62,800 with its first annual BreakAway Kids Tri at Lake Elmo Park Reserve in August. Four hundred forty-six kids competed in the triathlon (swim, bike, run), with 126 children raising money for Children’s.

Members of CycleHealth’s Kid Advisory Panel, which is comprised of the group’s top fundraisers, chose Children’s as its charity partner. A check was presented to Children’s for the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at an awards banquet Monday night in Minneapolis.

Q4_mighty_buttonThe clinic, named after late Aveda founder Horst Rechelbacher and his wife and business partner, who donated $1.5 million for the project, is scheduled to open in January at Children’s – Minneapolis.

“We wanted to be involved in a local venture,” Tony Schiller, chief motivator for CycleHealth, said of his organization. “The premise was that we’d go out and ask corporate sponsors and friends in the community to help create a new cycle of health in America by impacting kids and motivating them to do lifelong sports like running, biking, swimming – and raising money for charities. It’s not just about crossing a finish line, but serving.”

There are three spokes to the CycleHealth mission wheel: attitude, adventure and significance. Attitude represents the importance of how you think; adventure incorporates fun with fitness; and significance stresses that kids can inspire communities to solve big problems.

“We want to promote a love for sport and movement and to be healthy, as well as a kindness of heart and serving kids,” Schiller said.

Zack Novak, 11, of Minneapolis, participated in the first annual CycleHealth BreakAway Kids Tri and raised money for Children's.

Zack Novak, 11, of Minneapolis, participated in the first annual CycleHealth BreakAway Kids Tri and raised money for Children’s.

“The part that’s unique and attractive about CycleHealth is they believe in the power of kids,” said Jenna Weidner, 16, of Minnetonka, who raised $3,200 and has been fundraising for various charities since she was 8. “A lot of people are afraid to bring kids into it because of the perceived chaos, but kids are an untapped group with a lot of potential.”

CycleHealth plans to run educational, fitness and motivational programs through world-class, adventure-based events that benefit a charitable partner. Goals for the 2015 event to support the clinic include significant increases in overall participants, fundraising kids, and dollars raised.

“It was an incredible experience. Even if you didn’t win the race, it felt like you did,” said Zack Novak, 11, of Minneapolis, who raised more than $1,600 and is a member of the Kid Advisory Panel. “You feel like you did something for a purpose.”

Follow CycleHealth on Facebook, Twitter and Instagram.

Meet Abbey

When Abbey, 6, grows up, she wants to be a ballet dancer because being a ballet dancer would be awesome (OR because she’s great at turning and leaping).

When Abbey, 6, grows up, she wants to be a ballet dancer because being a ballet dancer would be awesome (OR because she’s great at turning and leaping).

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Abbey

Age: 6

Hometown: Minneapolis

Born five weeks early and with myriad medical issues, Abbey has been a patient at Children’s since birth. At age 4, she underwent open heart surgery to correct a potential life-threatening defect. She continues to visit our rehab clinic on a regular basis.

When Abbey grows up, she wants to be a ballet dancer because being a ballet dancer would be awesome (OR because she’s great at turning and leaping).

Abbey loves everything about Children’s, especially the rehab gyms where she has gotten to know several of the therapists and staff.

Meet Abbey, future ballerina from Children’s of Minnesota on Vimeo.

Garth Brooks visits Child Life Zone in St. Paul

Country singer Garth Brooks holds a child during his visit at the Child Life Zone at Children's – St. Paul on Friday, Nov. 7, 2014. (Photo by Ali Hogan / Alberta Lu Photography)

Country singer Garth Brooks holds a child during his visit at the Child Life Zone at Children’s – St. Paul on Friday, Nov. 7, 2014. (Ali Hogan / Alberta Lu Photography)

Q4_mighty_buttonGarth Brooks was a hit during his visit to Children’s Hospitals and Clinics of Minnesota’s St. Paul hospital Friday. The country music superstar, who is in the middle of an 11-day, 11-show stay in the Twin Cities, signed autographs, posed for photos and visited with patients and their families to celebrate the opening of the Child Life Zone, an in-hospital play center for patients and their siblings.

Brooks stopped by patient rooms and visited with families and nursing staff before being greeted by a parade of fans that lined his walk to the Child Life Zone. Other celebrities on hand for the event included Minnesota Vikings tight end Kyle Rudolph, Pro Football Hall of Famer Anthony Munoz, former Minnesota Wild center Wes Walz, Minnesota Lynx guard Lindsay Whalen and boxer Caleb Truax.

PHOTO GALLERY: Garth Brooks visits Children’s – St. Paul

The Child Life Zone at Children’s – St. Paul is one of 11 zones in children’s hospitals across the U.S. and opened in February. The first Child Life Zone was founded in Dallas in 2002 by Pro Football Hall of Fame quarterback Troy Aikman. Brooks co-founded Teammates for Kids in 1999.

VIDEO: There’s something for everybody at the Child Life Zone

Minnesota Vikings tight end Kyle Rudolph (center) and Garth Brooks are greeted by fans on the third floor at Children's – St. Paul.

Minnesota Vikings tight end Kyle Rudolph (center) and Garth Brooks are greeted by fans on the third floor at Children’s – St. Paul. (Ali Hogan / Alberta Lu Photography)

Meet Elijah

Elijah loves to come to Children’s because his friends (doctors, nurses and respiratory staff) are great, and he also really likes riding the elevators.

Elijah loves to come to Children’s because his friends (doctors, nurses and respiratory staff) are great, and he also really likes riding the elevators.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Elijah

Age: 9

Hometown: Elk River

Elijah has been diagnosed with Shwachman-Diamond syndrome. He has been to Children’s on multiple occasions, and received care in the pediatric intensive care unit (PICU), cancer and blood disorders clinics, emergency department and much more.

When Elijah grows up, he wants to be a “money man” so he can buy M&M’s for everyone, or maybe an astronaut or a doctor because they are awesome.

Elijah loves to come to Children’s because his friends (doctors, nurses and respiratory staff) are great, and he also really likes riding the elevators.

Meet Brooklyn

When Brooklyn grows up, she wants to be a teacher.

When Brooklyn grows up, she wants to be a teacher.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Brooklyn

Age: 6

Hometown: Minneapolis

Brooklyn receives treatment at Children’s for acute lymphoblastic leukemia (ALL), a type of childhood cancer.

When Brooklyn grows up, she wants to be a teacher.

When at Children’s, Brooklyn loves the fun staff who help her get through the hard parts. She loves working on art projects with the child life team and sharing her stories with her “team.”

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.