Category Archives: Patient stories

Family thankful for care infant daughter received at Children’s

Khloe Marincel spent six weeks at the Infant Care Center in Minneapolis. (Photos courtesy of the Marincel family)

Khloe Marincel of Rice Lake, Wis., and her family spent six weeks at the Infant Care Center in Minneapolis. (Photos courtesy of the Marincel family)

The following is a letter to Children’s Hospitals and Clinics of Minnesota from Jason and Beth Marincel, father and mother of patient Khloe Marincel, and Kyri, Khloe’s sister.

Dear Children’s,

I am writing to you on behalf of our family’s outstanding experience we had while our infant daughter, Khloe, was hospitalized at Children’s Hospitals and Clinics of Minnesota’s Infant Care Center (ICC) in Minneapolis from July 9 to Aug. 16. Typically a lot of people wouldn’t consider a six-week hospital stay as a pleasant experience; however, to our family, this stay couldn’t have been any better except the fact we were split apart.

When this journey began July 9, we could say this was the scariest thing we have had to encounter as a family. Within a few hours of arriving in the Emergency Department, a solution was found to Khloe’s issue, and we immediately were comforted by several nurses and doctors that Khloe was in the best place.

Even though Khloe couldn’t get into surgery until July 11, we knew your staff was doing as much as it could to make sure our family’s needs were met. Prior to surgery, your staff thoroughly explained the procedure and recovery process for Khloe. As parents not knowing what to expect, we found that their explanation of the surgery very comforting and gave us confidence about the type of care Khloe would be receiving at your hospital.

Q4_mighty_buttonKhloe’s recovery time seemed to take forever due to a few setbacks. But, even when there was a setback, your staff was on top of it and already had a plan of action to take to get her quickly back on the path to recovery. When these setbacks seemed to get us down, your staff reassured us that these setbacks weren’t anything major and Khloe would be back on track before we know it.

There wasn’t a day that went by where a nurse didn’t ask what we needed or a surgeon didn’t clarify/explain Khloe’s progress. When it came time for Khloe to be discharged, we felt it was a bittersweet moment. We were excited the moment had finally arrived, but Beth had to fight herself from crying because of the extraordinary hospitality and service we received during Khloe’s stay. Your staff was professional and friendly and knew exactly how to make us feel welcome and at “home” even though we were two hours from our home and family in Rice Lake, Wis.

This kind of experience wouldn’t be easy for any family, but if a family were given a choice of where their child can receive the best service, we would definitely direct them your way! We are truly grateful for all your staff did to make us feel welcome in this chapter of our lives and the dedication they provided Khloe to make her stronger!  We are proud to inform all of you that Khloe weighs little more than 9 pounds (a number we hadn’t seen yet!), back to rolling over (as she did before being admitted) and smiling and talking more than ever! She has had one emergency room visit since she has been home, but only for an ear infection as a result of teething, another sign of getting much stronger! Our family would have no idea where we would be today if you didn’t provide your absolute best care to our daughter! (And Kyri would have no idea what she would be doing without her sister!)

Thank you so much!

Jason, Beth and Kyri Marincel

P.S. The members of the Geek Squad provide amazing customer service and have provided our family with many memories that enlightened our stay at Children’s Hospital. They have no idea how much their positive attitudes and generosity mean to families in your facility. Sometimes a highlight of my day would be those five pictures I was able to print. They may think it is a simple act of kindness, but it’s the whole world to most in your facility!

Children’s preemie returns as intern

Kathryn Marxen was born at 25 weeks in 1989, weighing 1 pound, 6 ounces. She is 1 week old in this photo. (Photos courtesy of Kathryn Marxen)

Kathryn Marxen was born at 25 weeks in 1989, weighing 1 pound, 6 ounces. She is 1 week old in this photo. (Photos courtesy of Kathryn Marxen)

By Jimmy Bellamy

Kathryn Marxen’s life has come full circle. Children’s Hospitals and Clinics of Minnesota is where it all began for the 25-year-old occupational therapy intern.

Underdeveloped lungs and vision problems were just some of doctors’ and Kathryn’s family’s concerns.

Underdeveloped lungs and vision problems were just some of doctors’ and Kathryn’s family’s concerns.

Born premature at 25 weeks at Abbott Northwestern Hospital in Minneapolis, fragile 1-pound, 6-ounce infant Kathryn immediately was brought next door to Children’s where she spent her first 10 weeks on a ventilator, refusing to give in to the obstacles an early entrance into the world can create.

Underdeveloped lungs and vision problems, including a detached retina, were just some of doctors’ and Kathryn’s family’s concerns. Later she would be diagnosed with retinopathy of prematurity (ROP) – abnormal blood vessel development in the eye. Eating became difficult, too, for tiny Kathryn, who could wear her father’s wedding ring as a bracelet, so a gastronomy tube was required for feeding.

Q4_mighty_buttonWhile staying in the neonatal intensive care unit, her organs began to fail. Kathryn said when things looked grim, her mom and dad stayed at her side and her dad would read to her, and it seemed to help.

“Dr. Ronald Hoekstra came by and said, ‘Whatever you’re doing, keep doing it,’ ” Kathryn said she was told. “It was that connection of a parent’s voice.”

Doctors performed a patent ductus arteriosus ligation to close the ductus arteriosus in Kathryn’s heart, cryosurgery on her eyes to stop the progression of ROP, gave her lung-surfactant medication, and a scleral buckle to reattach the retina in her right eye in – a surgery that was fairly new in 1989.

At 6 months, after a couple in-and-out stays, Kathryn was ready to go home for good. She continued to go to Children’s for follow-up visits until she and family moved to Beavercreek, Ore., when she was 8 years old.

Kathryn has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Kathryn has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Sight and double vision has been a hurdle through the years – her left eye is 20/70 while there isn’t much visibility in her right – but it hasn’t plagued her existence; she refuses to allow it to stop her. Kathryn enjoys the outdoors, including hiking and rock climbing. She has competitively ridden horses since age 9 and took her horse to the U.S. nationals for Arabians and dressage.

Kathryn received a master's of science in occupational therapy from the University of Puget Sound in Tacoma, Wash., in May.

Kathryn received a master’s of science in occupational therapy from the University of Puget Sound in Tacoma, Wash., in May.

In college, Kathryn received a bachelor’s degree from Colorado State University in equine science and master’s of science in occupational therapy from University of Puget Sound in Tacoma, Wash. She began her internship at Children’s rehabilitation clinics in September.

She also speaks to groups of high school students with disabilities and other organizations, sharing her unique story, challenges and positive, optimistic view.

“At first, I was pretty embarrassed of my story and not as comfortable sharing it,” Kathryn said. “As I grew up and got more comfortable and familiar with it, I started to realize the power of those experiences as a premature infant, even though I don’t remember them. I can connect with people through my story and provide hope.”

When she was a kid, Kathryn didn’t want to be different and refused to use magnifiers to help her sight. It wasn’t until a low-vision high school teacher told her she could be even more successful with the right tools. Kathryn realized she could do just as well as others, if not better, and that built confidence.

Her difficult start to life, she said, helped her become brave; it’s what she credits with landing her a teaching-assistant position under famed animal scientist Dr. Temple Grandin at Colorado State and her internship at Children’s.

“It’s one of those things where if you don’t ask, you don’t know,” Kathryn said. “If there’s something I want to go do, I just ask the questions that I need to ask.”

Kathryn as a child

Kathryn as a child

Some of Kathryn’s highlights as an intern include observing occupational therapists at the NICU follow-up clinic, where she got a chance to speak with Dr. Hoekstra and Lois Gilmore, who cared for Kathryn as a preemie, and walking into the waiting room on her first day to see brochures for and work done with the animal-assisted therapy program.

She has a strong interest in working as an OT in the NICU.

“It would be awesome to be at Children’s to bring things even more full circle if I held a position in the NICU, but I could see myself doing that anywhere,” Kathryn said. “That’s my long-term goal; it takes quite a bit of continuing education because it’s an advanced area of practice.”

Kathryn said having the perspective of a patient can be used to help others in a similar position.

“I realize how my story and experiences can provide that hope for the families going through that,” she said. “I can tell them, ‘You guys will overcome this.’ ”

Jimmy Bellamy is the social media specialist at Children’s Hospitals and Clinics of Minnesota.

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.

New mom reflects on her premature birth

Kirsten DesMarais was born at 28 weeks in 1988, weighing 2 pounds, 14 ounces.

Kirsten DesMarais was born at 28 weeks in 1988, weighing 2 pounds, 14 ounces.

Her pregnancy  and now, motherhood  gives Kirsten DesMarais perspective on what her parents experienced when she was born prematurely.

Kirsten DesMarais and husband Phillip welcomed daughter Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor.

Kirsten DesMarais and husband Phillip welcomed daughter Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor.

DesMarais, 26, was born at 28 weeks at Abbott Northwestern Hospital in Minneapolis. Her early arrival came as a surprise. Her mom was at the hospital for testing when a nurse told her she wouldn’t be leaving until she gave birth. The next day, DesMarais arrived, weighing 2 pounds, 14 ounces.

In an interview before the recent birth of her daughter, Lena Caroline, DesMarais said, “Even though I’ve been pregnant for over eight months, it’s still unreal that there’s going to be a baby to come out of this. It gives me a greater appreciation for what my parents and other parents went through having a baby so early.”

DesMarais and her husband, Phillip, welcomed Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor. Lena weighed approximately 7 pounds and was 20 inches long.

“I felt like we had extra time to mentally and physically prepare,” DesMarais said. “I couldn’t imagine having a baby three months early and not having any of that preparation for your first child.”

She also was able to hold and feed her daughter right away  experiences for which her mom had to wait. Becoming a mom is the “coolest, most-overwhelming thing ever; overwhelming in a good way,” DesMarais said.

Q4_mighty_button“Everyone tells you to sleep when they sleep, but all you want to do is look at them. You can see them changing right in front of you,” she said. “I feel like I can see her growing every time I look at her.”

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive, as she has. Becoming a mom seemed like the right time.

“As young as I could understand, any time anyone talked about a baby they would talk about how I was born so little and that I was so lucky to get the care I did,” DesMarais said, adding that it was a miracle she survived being born so early 26 years ago.

Thanks to medical advances, new state-of-the-art facilities like The Mother Baby Center and philanthropy, outcomes for premature babies continue to improve since DesMarais was born.

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive.

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive.

November is Prematurity Awareness Month. Learn more.

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.

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.”

Spotlight shines on Midwest Fetal Care Center

Ian Kempel was born with an omphalocele. His story was featured on the TV show "The Doctors." You can see more about Ian and his parents, Leah and Todd, on The Mother Baby Center's Great Beginnings blog. (Photo by Jessica Person / First Day Photo)

Ian Kempel was born with an omphalocele. His story was featured on the TV show “The Doctors.” You can see more about Ian and his parents, Leah and Todd, on The Mother Baby Center’s Great Beginnings blog. (Photo by Jessica Person / First Day Photo)

Our partner, The Mother Baby Center, and its blog, Great Beginnings, are in the middle of hosting four weeks’ worth of unique patient stories from the Midwest Fetal Care Center.

Go on journeys with four remarkable families who have faced and overcome adversity under rare circumstances.

After summer off, Gavin faces next challenge with a smile

Gavin Pierson, 8, who underwent his third Visualase procedure for a brain tumor Oct. 23, smiles before school earlier this fall. (Photos courtesy of the Pierson family)

Gavin Pierson, 8, who underwent his third Visualase procedure for a brain tumor Oct. 23, smiles before school earlier this fall. (Photos courtesy of the Pierson family)

Less than 48 hours after surgery, Gavin spent part of his weekend jumping in a pile of leaves.

Less than 48 hours after surgery, Gavin spent part of his weekend jumping in a pile of leaves. Below: Gavin and sister Grace play in the leaves.

By Nicole Pierson

It has been eight months since Gavin has been in the hospital. Yes, you read that right, eight whole months. This has allowed for an amazing time of healing and the opportunity for Gavin to focus on so much more than his brain tumor. He spent his summer vacation doing things that 8-year-olds should do, like playing baseball for The Miracle League!

He also took advantage of his grandma’s pool and learned a few new tricks. He is now a pro at swimming in the deep end, doing cannonballs and flips underwater (both forward and backward, he would point out). As a family, we had bonfires, went canoeing and buried treasure at Pancake Island during our Fourth of July celebration.

Gavin and Grace PiersonAfter two years filled with nearly constant appointments, scans and procedures, we decided to take the summer off and provide Gavin with a much-needed reprieve. He desperately needed the break. Because he is medically stable and doing well, Gavin’s medical team agreed that giving him a summer away would be good. When considering his treatment, I am so thankful that Gavin’s team understands the whole child and that they realize medicine comes in many forms.

Throughout his time off, Gavin stayed on Palbociclib, a targeted therapy which is in pill form. At the end of August, he had a 3T MRI and PET scan to look closely at the tumor and help his medical team plan for his next ablation surgery. The MRI showed stability of Joe Bully, with no urgent concerns. From that appointment, we set up his third laser ablation procedure, which took place this past Thursday with Dr. Joseph Petronio. Less than 48 hours post-op, Gavin had tons of energy with minimal soreness. He felt so good he spent the weekend playing in a leaf pile, surfing the Web and challenging his little brother, Gage, to games on Xbox; his ability to bounce back is a testament to how minimally invasive the Visualase procedure is on its patients!

Gavin (left) and brother Gage play video games days after Gavin's surgery.

Gavin (left) and brother Gage play video games days after Gavin’s surgery.

Four days after surgery and Gavin is back at school today, and that is music to our ears. Due to his tumor and multiple surgeries, Gavin previously had lost the ability to read. Only a year ago, he had to relearn letters. But today is different. Now, Gavin is attending school full time as a third-grader at Ramsey Elementary, and he continues to make huge gains in reading and spelling. On the day of the surgery, he was spelling the words from his spelling test. This weekend, he read his Spider-Man chapter book.

Subscribe to MightyGavin’s doing well in math, too, scoring high in data and geometry. After missing 17 months of school and undergoing multiple brain surgeries, this is something to celebrate! Gavin’s strength in fighting Joe Bully is allowing him to fight all of the other side effects as well. He amazes us every day.

With Gavin’s third laser ablation surgery now securely behind us, we are relieved, but we still have so many mixed emotions. We know that we have to keep fighting, yet we have enjoyed his summer off so much that we are hesitant to re-enter a schedule full of procedures rather than swim dates. As always, we keep marching on. General Gavin is ready for the next phase of this battle. His soldiers are behind him, but he is leading the army.

Gavin checks out some toys on the Internet.

Gavin checks out some toys on the Internet.

Nicole Pierson of Ramsey, Minn., is the mother of 8-year-old Gavin Pierson, who is the first child in the U.S. with a mature teratoma brain tumor to undergo Visualase laser treatment.

Wisconsin girl hasn’t slowed 6 years after cancer diagnosis

Vanessa Achterhof was diagnosed with type 2 Wilms’ tumor six years ago in December, and since has had one of her kidneys removed.

Vanessa Achterhof, of Baldwin, Wis., continues to have checkups every six months at Children’s to monitor her kidney.

Vanessa Achterhof, of Baldwin, Wis., continues to have checkups every six months at Children’s to monitor her kidney.

The 15-year-old from Baldwin, Wis., had 18 weeks of chemotherapy followed by physical therapy. She continues to have checkups every six months at Children’s with Dr. Kris Ann Schultzto monitor her kidney.

Vanessa said three of her favorite nurses at Children’s helped her through the life-changing experience.

“Linda always makes my day and tells me I was one heck of a strong girl. She would always tell me how beautiful I was, even with no hair,” Vanessa said. “To this day, she remembers me and can still put a big smile on my face.

“Jody the social worker is a wonderful person as well. She was always so pleasant and talked to all of us. She had wonderful ideas to help us out and made our whole family feel special.There is one other nurse that I will never forget. I was in Children’s on Christmas Eve night and had a night nurse who told me I was a strong young girl who could push through anything. She was also a cancer survivor of Wilms’ tumor, and if she made it through it, she said I could, too. Unfortunately, we never got her name.”

Cancer hasn’t slowed Vanessa down – now or in planning for the future.

Subscribe to Mighty“I am involved in basketball, volleyball and 4H,” Vanessa said. “I love to show cattle, be a part of our home farm as much as I can and hang out with my friends.”

She is considering being a social worker, working with cancer patients.

“I would love to make their day, play games with them and make them feel special,” Vanessa said. She also wants to go into something to do with animals, specifically cows. She loves the outdoors and spending time on her father’s farm.

Even though Vanessa has been through a lot, she has emerged through it all a caring person with a heart of gold to help anyone in need.