Category Archives: Patient stories

Living with congenital heart disease: One man’s “game plan”

Matt Ames is a 30-year-old from Minneapolis, Minn. He is a small business owner. He is a camp counselor. He is a self-proclaimed “freak athlete.” And, born with a congenital heart defect, Matt is also an adult being treated at a children’s hospital.

Matt was born with levo-Transposition of the great arteries. Today, several open heart surgeries and two pacemakers later, Matt is still a patient at Children’s Hospitals and Clinics of Minnesota – the largest pediatric cardiovascular program in the Upper Midwest and recognized by U.S. News & World Report as one of the best children’s hospitals in the nation for cardiovascular care – and continues to receive treatment at the same facility, by the same nationally-renowned medical team, as when he was born.

“It’s eye-opening what they can do now,” says Matt. “Not so long ago I would have been considered lucky to be alive. Yet today, more and more children are able to survive this condition and go on to lead healthy, full lives. Technology and newfound disciplines have come so far.”

Until only recently, infants born with congenital heart defects weren’t expected to live past their teens. About 1 in 100 kids are born with a heart defect, but thanks to the advances made in congenital cardiac surgery, many are growing into adulthood.

“In the last year alone we had upwards of 250 patients in the clinic, and many of them were just like Matt – adults that were treated as children for congenital heart defects. It’s great to see so many of them living healthy, active lives,” said Dr. Chris Carter, pediatric cardiologist, Children’s Heart Clinic.

“In addition to caring for thousands of pediatric heart patients each year, what makes Children’s special is that we have a dedicated team of doctors to work with adult patients. It’s an incredible, growing field, and our specialists are some of the best-equipped to treat and care for hearts of all ages and sizes. In fact, one of our oldest patient is in his 70’s!”

As founder and owner of MN Pro Paintball, Matt does not allow his heart to define him. A company he launched upon graduating from high school, he has since grown the business to include a 200-acre outdoor paintball park in Lakeville, retail stores in Burnsville and Minnetonka, as well as an online store. He was also named the 2012 Minnesota Young Entrepreneur of the Year by the U.S. Small Business Administration.

Matt also does not forget how fortunate he is. Upon receiving a pacemaker transplant in 2008, Matt decided he wanted to give back to Children’s. Thus, the Challenge for Children’s (C4C) Big Game was born. Since the first annual event more than five years ago, a charity paintball event that has grown from 200 players to more than 700, MN Pro Paintball has raised more than $140,000 for the cardiac unit at Children’s.

“Being born with a congenital heart defect is often a heartbreaking diagnosis for parents,” adds Matt. “And undoubtedly for the child, it can be a challenging road to travel. Fortunately for me, and for so many others like me, there are places like Children’s and excellent medical support systems to help us succeed along that road.”

Matt gives a first hand account of his journey and shares more about the Challenge for Children’s Big Game here

Hearts of thanks: A note to the epilepsy unit at Children’s – St. Paul

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

We choose Children’s for the mix of services we can utilize for our son with multiple health care needs. This week, I want to say thank you to the nurses in the Epilepsy Unit. Sam has been inpatient for several different rounds of testing and to start the Ketogenic diet. As we started the diet, there was a steep learning curve for us as Sam’s chefs.  Our nurse, Pat, took extra time to sit and answer questions, to share ideas about what other families had done, helped us prep the food, and then watched while we learned how to do it on our own. She made sure we were ready to handle the transition from full support in the hospital to independent management at home. It wasn’t a dramatic moment, but it was at a period of time when so much was changing for Sam in terms of medications, he was having frequent trouble with pneumonia, and his overall health status was deteriorating. I felt overwhelmed and adding in more new requirements to Sam’s care regimen was daunting. The support from the nurses, and Pat in particular, made that transition easier and empowered me to feel more confident about continuing to care for Sam at home. Thank you for caring when we needed your help and supporting us when we were learning something new.

I also want to say thank you to the many people who smiled at us, greeted us, asked if we needed help, or gave us directions along the way. Many of you were housekeeping staff, maintenance staff, or in other non-medical positions. I want you to know your kindness is appreciated in addition to the hard work you put into making sure the needs of patients and families are being met.

Thank you for your commitment to kids, for your kindness, and for sharing your time and expertise to care for my son.

–Stacey Jenkins

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.

Hearts of thanks: Maisy’s story

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

Dear PICU staff,

Imagine a young girl without a family by her side, when she was fighting for her life…facing one surgery after surgery another, alone. And then imagine a staff who took this little girl under their wing and gave her the compassionate and quality care she deserved. And then picture this same girl who is 6 years old now. Who, after 28 surgeries, a pacemaker placement and countless other procedures and hospital stays…imagine this same little girl filled with confidence, charisma and abounding enthusiasm and love to give. This is our daughter Maisy… who joined our family through adoption after living two years of her life without a forever family. Because of the love and quality care that Maisy received at the hospital, she is thriving, happy and ready to take on the world. I don’t believe that she would have a future as bright if she had not received such excellent and nurturing care. To you, we give you a heart of thanks!

– Julie Martindale

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.

Hearts of thanks: A micro-preemie’s journey

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

Samantha turns 7 this week. She is a big girl who loves ice skating and dinosaurs, but she started out as a 1 pound micro-preemie in the Children’s NICU.

Thank you Nurse Marcy for caring for Sam at her most fragile and for showing us how to change diapers on our tiny, tiny baby. Thank you Nurse Mary, Nurse Heather and Nurse Peg for being our constants in our topsy-turvy 128-day NICU stay. You juggled schedules to be with us on scary days and called in to support us when you couldn’t be there.Your patience, advocacy and love helped us through the hardest time of our lives.

We are forever grateful.

– Michelle Jackman

Sam as a micro-preemie in the NICU and today playing hockey.

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.

Hearts of thanks: A letter to nurse Sara

Children’s Family Advisory Council has designated this week as Hearts of Thanks week as a way to say thank you and recognize all Children’s staff for the difference they make to them during their experiences in our hospitals and clinics. This week we’ll share some of the letters and stories from families about how our staff has been there to lend a helping a hand, a shoulder to cry on or an encouraging word during some of the most difficult times in their lives. On behalf of the Family Advisory Council, thank you to all of our team members for all you do to brighten the days, and the lives, of our patient families.

Thank you Sara – you touched our lives

Aug. 19, 1996, was the day that changed our lives forever. This was the day my husband, Tom, started a new job, and we all were so excited. You see, this job was the one that made it possible for me to quit my job to stay home with our three young children, Zachary (5), Cody (2 ½) and Hannah (10 months). The plan was for him to spend his first week in Boston training and meeting customers.

Aug. 19, 1996, was also the day I had scheduled to take Zachary in to see the doctor. Something wasn’t right and I wanted him seen. He was incredibly tired and cranky. He also looked very pale standing next to Cody, his summer-suntanned little brother. Plus, he had these pesky little bruises on his legs that I couldn’t figure out (I later learned these are called petechiae – a result of a low platelet count).

4:00 appointment. 4:30 blood draw. 5:00 cancer diagnosis, and by 6:00 p.m. we were already a “Children’s Family”. Tom was paged at a Red Sox game at Fenway Park to receive the phone call from his brother that Zach had leukemia and we were at the hospital.

It was a long, lonely night sitting in the hospital watching my beautiful boy sleep all the while knowing that Tom was alone in his hotel room in Boston, dealing with his grief alone because he was not able to catch a flight home until the morning.

The sun came up – a new day. That morning Zach and I met Sara Gernbacher. She walked into Zach’s room and introduced herself. She told us she would be Zach’s primary nurse.  This was the beginning of a very long road, and little did I know at that time, what an important role this person would have in our lives. She became more than Zach’s nurse; she was our guide, our comforter, our information source, our gentle spirited friend, and Zachary trusted her completely. She truly was part of our inner circle, and we are so thankful she came into our lives.

I’d like to share with you a few wonderful magical Sara memories…

Throughout Zachary’s treatment, she always took the time to talk one-on-one with him, listening intently to everything he had to say. She made him feel like there was no one more important than him. One memory stands out in my mind: one day that we were in clinic, Zach was very upset about getting a shot in his leg. He would have nothing to do with it. He hid under a table in the exam room. Sara crawled under the table with him, and just sat with him. She calmed him, reassured him. Within a few minutes she had his permission to move forward with the shot – right there under the table. Magic!

Later in Zach’s treatment, Sara shared great news with us. She was pregnant with her second child. We were thrilled for her, but also secretly wondered how we’d get through treatment without her. She assured us that her substitute would take great care of Zach, which she did. One day in clinic during Sara’s maternity leave, she surprised us by showing up at Zach’s appointment. She stopped in to see Zach, and to show him her new baby. It brings tears to my eyes to type this, remembering the tender moment shared between Sara and Zach as he said hello to her new baby girl.  

Over the course of our clinic visits, we discovered that Sara’s parents owned property on the same lake in Annandale that Zachary’s grandparents did. The Annandale 4th of July parade was an annual event for our family, and Sara’s too. Every year, Sara made a point to find us and say hello to Zach and our entire family. By this time, Zach was off treatment, so we especially looked forward to seeing her and her growing family.

These stories all took place several years ago. Zach is now 23 years old, and only comes to clinic once per year for his long-term follow up appointments. Sara, however, hasn’t stopped caring. Last January, Zach and I were in for his long term follow up appointment. We didn’t expect to see anyone we knew, since we had a late appointment – 5:00 p.m. As we were waiting to be seen, someone very special quietly slips into the room to say hello. It was Sara, and we all hugged – such a sweet surprise.

So here we sit, 14 years past treatment. We are thankful EVERY day for the wonderful care our son received at Children’s, and we feel truly blessed that Sara Gernbacher was a part of that treatment plan. Thank you Sara – we’re so grateful to you!

– Amy Bigot

Do you have a Children’s employee or team you’d like to thank? Share your message in the comments.

Zachary, New Year’s Eve 1996

Sara introduces Zach to Marit, her new baby girl.

Zachary today.

Share your photos during the flu prevention photo challenge

Flu season is now widespread in Minnesota and across the country. The Kohl’s Cares and Children’s Flu Prevention Project wants to know how you and your family are fighting the flu. You are invited to participate in the Flu Prevention Photo Challenge to show us how.

Here is how to participate:

1.) Snap a photo of you and/or your family fighting the flu. Examples include:

  • Getting a flu vaccine
  • Washing your hands
  • Covering your cough
  • Showing off your “I got vaccinated” sticker

2.) Post your photo on Twitter, Facebook or Instagram using #fighttheflumn

The challenge will run from Monday, Jan. 27 – Friday, Jan. 31. During that time, we encourage you to submit as many photos as you like. On Friday, we will choose, at random, five people who will each receive a Kohl’s gift card.

Good luck and happy snapping!

Gavin Pierson to ‘Lead the Team’

Gavin Pierson, 7, and his neurosurgeon, Dr. Joseph Petronio

In April 2012, Gavin Pierson was diagnosed with a brain tumor that he has since nicknamed Joe Bully.

Gavin, 7, has undergone chemo therapy, numerous craniotomies and, most recently, MRI-guided laser surgery to help obliterate the tumor. He also takes numerous drugs, and he is the only child in the country to receive the clinical trial drug, Palbociclib.

He’s in the second grade and loves math. In his spare time, he plays games, watches movies and visits with his family and friends. Before he was diagnosed, he was a gymnast and played T-ball. And, until his recent surgery, he ran and played football. With the help of his care team and loved ones, he’s trying to return to those fun activities.

“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.’”

We welcome Gavin and his family as he leads the Vikings onto the field before their Sunday match-up against the Detroit Lions.

Gavin Leads The Vikings Onto The Field   Gavin With Viktor the Viking   Gavin Hi-Fives Viktor the Viking

Katie’s story: Kindness can be its own special medicine

By Veronica Stoltz

If you‘ve ever stood by your child’s bedside hoping and praying that he or she will recover, you may have made a few bargains with “The Universe.”  Mine included a vow to pay close attention to the kindness extended to our family during my daughter’s lengthy hospitalization and a pledge to find ways to personally give back. 

My daughter, Katie, was born 15 weeks prematurely, weighing just 1 pound. She was incredibly fragile and her condition was precarious. She was ventilator dependent and developed a blood stream infection. At one point, a doctor warned us, her condition “could quickly become incompatible with life.”

Gratefully, Katie was no more ready to leave this life, than we were ready to part with her. She fought hard and overcame a host of complications. These included bronchopulmonary dysplasia, pulmonary hypertension and chronic lung disease. She also required laser eye surgery for severe retinopathy of prematurity. She needed 21 blood transfusions and was given paralytics with sedation to prevent her from using her precious energy for anything other than sustaining life.

But thanks to the attentive and expert care she received at Children’s Hospitals and Clinics of Minnesota, she became stronger each and every day of her 99-day hospitalization. And when she weighed just a whiff over 5 pounds, she was able to come home to our grateful family on Easter Sunday in 2009.

Now, four-and-a-half years later, Katie is a perfectly healthy little girl. She loves all things pink, “Hello Kitty,” and sparkly—and finding all three at once is nirvana! She loves to run, do somersaults, and work on her cartwheel techniques on the sidelines of her big brothers’ football games.

This fall, she will start kindergarten.  She will learn that the letter “X” is for X-ray, and be able to show her class one of her own. She will have an atypical baby picture to put on her “All about Me” poster, and she may bring some interesting hospital stuff for show-and-tell. But she will speak of all of these things in the past tense. Because Children’s helped her conquer challenges and realize her potential.  So now she can focus on more important things….like glitter and finger paint.

During the time when I truly didn’t know if my daughter was going to live or die, I felt like a live electrical wire which had been stripped of all of its insulation. I was ultra-sensitive to everything around me.  I was easily confused, worried, and overwhelmed. But I was also easily touched, amazed, and deeply moved.

Put very simply, I was extremely vulnerable. Most patients and their families are.

That’s why little things make such a big difference.

We are so grateful that our child and our family were not just “treated” at Children’s but “lovingly cared for.” There’s a big difference.

That’s why we’ve found ways to personally give back, and it has been one of the greatest experiences of our lives. It has strengthened and unified our family tremendously.

Giving back has helped us feel like we didn’t just go through a difficult medical experience, but that we allowed that experience to pass through us; transforming who we are and the value we now place on the things that matter most: love, family, life, and health.

Hardship is a great clarifier. So is service.

Compassion is contagious. It is the only thing Children’s infection control efforts can’t touch. Once you have felt its impact, you are smitten. You know that the smile you helped to bring to a child’s face is part of what is helping him or her to feel empowered to heal, and you want to be part of that anyway you can.

I give to Children’s partially because of my immense gratitude for Katie’s presence in our family, and partially because I know first-hand that “kindness” is its own kind of special medicine.

 

Katie is just one of the many fighters 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 Katie. 

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.