Category Archives: Philanthropy

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.

A green thumb with a healing touch

Leonard Gloeb, master gardener, has been providing horticulture therapy at Children's - St. Paul for 27 years.

After a bad experience with tonsillectomy as a child, Leonard Gloeb had an aversion to hospitals. Lucky for him – and lucky for Children’s – Leonard got over his fear. For the past 27 years, Leonard has been volunteering his time and talents as a master gardener to provide horticulture therapy to our patients and their families in St. Paul.

Horticulture therapy is the purposeful use of plants and plant-related acts to promote health and wellness for all people. Its use dates back to ancient times, and today, it is widely accepted as a beneficial and effective therapy to help build and improve cognitive, physical, psychological and social skills.

Leonard visits Children’s  twice a week to perform a variety of plant-related therapy activities with patients. The program he has helped develop, called “My Little Green Friends,” consists of 35 different activities, including planting, seed art and aromatherapy, to engage patients in the healing benefits of working with and/or enjoying plants. In the past, Leonard maintained the Children’s greenhouse and now donates plants he grows in his personal greenhouse for his activities with patients.

“The project started as a way for me to get in my volunteer hours required for the master gardener program,” says Leonard. “But it has turned into a real passion and a commitment to the children.”

With more than 15,135 volunteer hours now under his belt, Leonard is a familiar face at the St. Paul campus. He works closely with the Child Life team to schedule his visits in the pediatric intensive care unit (PICU) and surgery playrooms, third and fourth floor inpatient units, the short stay unit and the epilepsy unit.

“Leonard brings a lot of smiles to the kids he visits,” says Tom Marsolais, child life associate. “He’s a kind and gentle man, and the kids pick up on his calming influence. The horticulture therapy he does with them is a good distraction during their time at the hospital and provides a learning experience for them to discover more about plants and nature.”

Leonard has seen his work come full circle, with some former patients now returning as parents who still have the plants he gave to them years ago. Those, and some of the stories that stand out the most, are Leonard’s “little miracles” – the examples of how horticulture therapy has improved the care or life of a child.

“One of my favorite success stories came after a planting activity with a group of children in a playroom,” Leonard recalls. “A little boy picked up his potted plant, turned to his mother and said ‘Look mom, my plant.’ It didn’t seem like a big deal at the time, but I found out later that those were the first words he had spoken since coming to the hospital five days before. It was a tremendous impact with little effort on my part. One time, a doctor told me that the work I was doing was more important than his,” he continues. “I thought he was crazy at the time, but after seeing events like that one, I realized that what I was doing really does make a difference.”

Throughout the years, patient families have asked Leonard if he gets paid for the work he does. “I tell them ‘I get paid more than any CEO.’ Even if I wasn’t a master gardener, I’d still be here. It’s one of the most rewarding projects there is.”

 

 

Five Question Friday: Margie Nelson

You’re an annual giving officer at Children’s. What does that job involve? My title is annual giving officer, a position on the annual fund raising team working with donors who give gifts to the hospital for the first time or every year, usually in the $1-$1,000 range. Specifically, my job is to work as a patient family representative from the Foundation. Eighty percent of gifts to hospitals come from families who have had a patient experience. I visit families while they are at Children’s and thank them for their past support, report their stories for our giving blog and stewardship reports and connect families to events and hospital programs of interest. I am helping to build a culture of generosity throughout the hospital by assisting physicians and nurses when they encounter the families who want to give back to Children’s after a powerful experience.

Margie puts a tattoo on a child at the HeartBeat 5000.

Your position allows you to develop unique relationships with families. What do you love most about getting to work with families every day? My children don’t live at home anymore, so I love the opportunity to visit with children and families of all ages and learn about their lives, their schools, how they are feeling and what they love to do when they are not at Children’s. Parents who I see in and around the hospital are genuinely surprised to be thanked in person for past donations and support to Children’s. I think they feel a powerful relationship to the hospital when they are recognized, and it feels great to be the person bringing this to them at a time of great worry and stress.

What drew you to nonprofit work and, specifically, Children’s? I have volunteered at nonprofits since college, when I was an EMT for my home town fire department. Giving back to communities and causes is a family value shared and enjoyed among generations in my family. I feel privileged to be able to build a career in a non-profit or service organization like Children’s as it is easy to put your heart and soul into the mission and work. While working in an underserved children’s non-profit educational organization, I started as a volunteer on an Integrative Medicine Task Force at Children’s and was recommended for the Foundation job a few years later. It is a perfect fit!

What do you think makes Children’s, Children’s? The big things like the people (outstanding doctors and nurses) and the beautiful buildings and then the little things like the kids and the extras; music and pet therapy, hugs, art, games, understanding (child and family services.)

What has been your favorite memory to date working here? The families who have lost children often come back to give gifts so that other families have an easier time. I have learned from them and grown into a better person in the light of their healing generosity.

 

Former Children’s patient lands dream job, gives back

By Andrew McIlree

Christina Ledin is more than a talented young professional establishing her career. The 26- year-old woman has already discovered her capacity to live with purpose and to help others through one of her earliest childhood experiences – as a cancer survivor at Children’s Hospitals and Clinics of Minnesota.

Ledin recalls getting repeatedly sick to her stomach just before her second birthday. Her skin turned yellow, and she wouldn’t eat. Her pediatrician sent her to Children’s, where doctors discovered a Wilms’ tumor, the size of a grapefruit, on her left kidney. Treatment began immediately.

In her memory, the healing journey at Children’s wasn’t as scary as it could have been, thanks to the skills and personalities of the Cancer and Blood Disorders team, Ledin said, noting that Dr. Bruce Bostrom had a Cookie Monster doll in his office that she enjoyed. Her parents, too, appreciated the dedication of her doctors and nurses.

“My dad would see Dr. Margaret Heisel Kurth in my room, going over paperwork at 11:30 at night,” Ledin said. “And then he would see her in that same spot in the early morning. The team never stopped taking care of their patients.”

With the help of surgery and chemotherapy, her tumor was gone, Ledin said. She’s been in remission ever since. She’s proud and grateful for surviving such an ordeal at an early age, and she was able to live a normal childhood in Plymouth, Minn. Ledin later went on to earn a bachelor’s degree in health care management at Concordia College in Moorhead, Minn.

Now her life has come full circle.

“Where I wanted to work my whole life was at Children’s,” she said. “But I never thought I’d be lucky enough to work for Children’s Foundation right out of college.”

Ledin, already employed at her dream job, went a giant leap further by making an estate gift to Children’s in early 2012. The Richard, Pamela, Katherine, and Christina Ledin Family Endowment will support the Cancer and Blood Disorders program at Children’s by providing it money and resources for years to come.

“Children’s saved my life, and we as a patient family were helped in different ways,” she said. “That level of care is due to people’s generosity, and I don’t have to wait until I’m older to think about making a difference for other families.”

As Ledin credits her healing journey at Children’s for playing a strong role in the formation of her life’s passions and values, the young woman often finds herself reflecting on moments as a child spent with her Cancer and Blood Disorders care team.

“The one thing I miss the most about my Dr. Heisel Kurth checkup visits,” she said, “is her cleaning my ears.”

 

Giving on Give to the Max Day

Today, Children’s Hospitals and Clinics of Minnesota is participating in Give to the Max Day – Minnesota’s day of philanthropy. Over the next 24 hours, we hope to raise more than $100,000 for our patients and families.

We’re a national leader in advancing the health of children, innovating and delivering family-centered care of exceptional quality. But we can’t do it without you.

  • During the first half of 2012 alone, there’s been $7.4 million in generosity at work.
  • 100 percent of your donations help kids. Every cent is kid spent.

When you give big today, we hope you don’t forget the little guys. To donate, please visit childrensMN.org/max.

Throughout the day starting at 7 a.m., we’ll aim to keep you updated on our fundraising progress. We hope you follow along here. You can also follow us on Twitter or Facebook.