Category Archives: Patient stories

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.”

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.

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.

Burnsville boy tops cancer, ready to take on kindergarten

With cancer in the past, Nolan Luther is ready for kindergarten at Sioux Trail Elementary School in Burnsville.

With cancer in the past, Nolan Luther is ready for kindergarten at Sioux Trail Elementary School in Burnsville.

Nolan Luther was diagnosed with rhabdomyosarcoma, a cancerous tumor of the muscles, on June 3, 2013.

He finished chemo in March and will have quarterly scans for the next two years before they become less frequent. He may undergo surgery to help reanimate the left side of his face. The tumor damaged Nolan’s facial nerve.

Nolan Luther

Nolan finished chemo in March and will have quarterly scans for the next two years before they become less frequent.

With cancer in the past, Nolan is ready for kindergarten at Sioux Trail Elementary School in Burnsville.

“Nolan is very curious. He asks about 400 questions a day,” his parents, Tara and Kevin, said. “He is a sensitive kid and shy at first, but once he is comfortable he is incredibly confident. Towards the end of treatment, Nolan would often direct his nurses on what type of drugs he should have and how they should administer his shots and access his port.”

School won’t be the only thing on his mind. Nolan loves soccer and gymnastics. This summer, he has been able to do more of both activities. He also is good with Legos. The Luthers recently put together a 1,200-piece Millennium Falcon from “Star Wars,” and Nolan did the majority of it by himself.

Subscribe to MightyNolan’s parents are thankful for the care throughout his treatment.

“The care Nolan received at Children’s was really top notch,” Kevin said. “We felt so confident and comfortable that Dr. Kris Ann Schultz was doing everything possible to ensure the best outcome for Nolan. We appreciated the long-term focus and proactive attention that Children’s provided. They started physical therapy early to give Nolan the best chance for a quick physical recovery.

“As crazy as it sounds to some people, we consider ourselves lucky. Maybe not in the normal sense, but lucky that we fell into this journey at Children’s and we found ourselves with an amazing team of specialists – not just the doctors, but nurses, physical therapists, social workers and child life specialists – that were able to provide fantastic care and support. We are fortunate to benefit from the experience of patients who have gone before us and the research that has gone into pediatric cancers.”

3-year-old aspiring ballerina stays busy despite cancer

Lydia Fisher is in the maintenance phase of treatment.

Lydia Fisher is in the maintenance phase of treatment.

All Lydia Fisher talks about is ballet.

The 3-year-old girl probably will get to take ballet, adding to her already busy list of activities which includes swimming lessons and gymnastics – all normal things for a friendly, outgoing little girl.

“She’s just really an active 3-year-old. When you meet her on the street, you’d have no idea she’s undergoing chemotherapy,” her mother, Jane Fisher, said. “She’s such a trooper.”

Lydia 1Like most families, Lydia’s cancer diagnosis caught her parents, Jane and Jeremy Fisher, off guard.

“She was diagnosed with acute lymphoblastic leukemia (ALL) on her second birthday,“ Jane said. “She had been sick with fevers and aches for 14 days before our pediatrician said we should get worked up at Children’s Hospital. We were admitted, and a couple days later it was confirmed that Lydia had ALL after a bone marrow biopsy was completed. You never really think that you are going to be ‘that family.’ Like others, we’ve tried to face it head-on.”

Jane, who works at Children’s Hospital in another department, and her family always knew it was a wonderful place for families to be treated. But seeing it from the other side of the fence has been eye-opening for Lydia’s parents.

Subscribe to Mighty“The whole staff is amazing,” Jeremy said. “From the doctors on down to the housekeeping staff, everyone is so good at their jobs. Everyone stops to visit with us, support us and make sure we are doing well. Many of them aren’t even caring for Lydia. Everyone gets that same treatment; we appreciate it.”

Lydia is seen at the Minneapolis campus, and her primary oncologist is Kris Ann Schultz, MD. Lydia is in the maintenance phase of treatment. Her family anticipates she’ll complete treatment in September 2015.

“This past year, I think we’ve really settled into (cancer) just being part of our life and being part of our family,” Jane said. “We try not to make it be the center of everything. We try to make her childhood as normal as it can be.”