Category Archives: Patient stories

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.”

Leukemia hasn’t slowed energetic Ike

Ike Yarmon is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016.

Ike Yarmon is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016.

A child’s birthday should be fun and carefree. But just three days before Ike Yarmon turned 5 last year, his family got mind-blowing news: Ike had cancer.

At first, it seemed like Ike had a run-of-the-mill ear infection. Then, he developed a rash all over his body. It originally was thought to be a reaction to amoxicillin to treat his ear infection. During each visit, Ike’s pediatrician had his blood drawn, which indicated alarming white blood cell counts. It could be leukemia, his pediatrician said, but Ike didn’t have any other symptoms.

After continued declining white blood cell counts and a stubborn rash, his pediatrician recommended Ike’s parents, Chelsea and Chad Yarmon, take Ike to the emergency department at Children’s Hospitals and Clinics of Minnesota.

Ike’s lab results perplexed the emergency department staff. Due to the possibility of having a serious viral infection, Ike saw Children’s infectious disease specialists. Further blood tests didn’t reveal a virus or inflammatory disease. Three days later, Ike underwent a bone marrow aspiration, which showed Ike had B-ALL leukemia.

Subscribe to MightyIke’s diagnosis has been life-changing for his family. It has shown them the “true meaning of living,” given them more purpose and brought them closer, Chelsea said.

“We fight so these children no longer have to endure these horrible treatments and so that no parent ever has to hear the life-altering words of ‘your child has cancer,’ ” Chelsea said.

Ike is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016. While his family counts the days until treatment is over, it hasn’t kept him from playing hockey and baseball, being outside and playing with his sisters and spending time with his family. He’s full of energy.

“We feel incredibly lucky and blessed that, even though Ike has cancer, he was diagnosed with a highly curable form and is handling his treatments like a true champ,” Chelsea said. “We know that his prognosis could be in a much different place, and for that we are truly grateful.”

Wisconsin girl perseveres through cancer relapse

Reagan completed her initial treatment April 1.

Reagan Robertson, of Frederic, Wis., completed her initial treatment April 1.

Like most little girls, Reagan Robertson of Frederic, Wis., has a healthy list of her favorite things. Not surprisingly, Disney princesses and baby dolls rank high on her list. But you can also add dance parties, horses, puppies, kitties, fingernail polish and bike rides with her dad to that list.

A brave, sweet girl, Reagan already has been through a lot in her young life.

It was Oct. 17, 2013, when doctors first mentioned “leukemia” to her parents, Alison Lake and Allen Robertson. When a subsequent bone marrow biopsy didn’t confirm the disease, the Robertsons stayed in the hospital for eight days while the doctors tried to pinpoint her exact condition. Eventually, the Robertsons were sent home with “pre-leukemia” until Nov. 8, when acute myeloid leukemia was confirmed.

Subscribe to MightyReagan completed her initial treatment April 1 (four rounds of chemotherapy with each round averaging 25 days inpatient and 12 days at home). Then, on May 16, she relapsed. She had an additional two rounds of chemo. If these rounds of chemo put her into remission, she’ll be getting a bone marrow transplant, hopefully, this month.

Alison is appreciative of the care they receive from Dr. Jawhar Rawwas and the staff at Children’s.

“I feel like the oncology team cares for Reagan,” she said. “When she relapsed, they were upset for us. The doctors and nurses are very attentive and do a good job in every aspect of care.”

Reagan’s lengthy hospital stays have had an impact on her. Alison figures Reagan will be a nurse when she grows up since she regularly helps the nurses do vitals, does dressing changes on her stuffed animals and takes alcohol wipes and cleans the lines. She always helps flush her g-tube and even refers to herself as “baby nurse.”

Reagan is a fighter and up to the challenges ahead of her.

“When she’s feeling good and not in the hospital, she is an absolute joy to be around,” Alison said. “She’s so happy and smiling and funny. She can be a tad grumpy in the hospital and sometimes people don’t really get to see her true nature. She is our ‘Rea of Sunshine.’ ”

Elk River teen siblings share cancer stories

Siblings Aaron (left) and Abby Dwyer of Elk River were diagnosed with cancer four years apart.

Siblings Aaron (left) and Abby Dwyer of Elk River were diagnosed with cancer four years apart.

Abby Dwyer, who was featured at this year’s Pine Tree Apple Tennis Classic, is a wonderful young adult who faced cancer head-on after being diagnosed with Philadelphia chromosome positive ALL leukemia almost five years ago.

Abby has been off treatment for two years and is doing well after undergoing a double knee replacement when she was 14 because chemotherapy treatments destroyed her knees.

Abby, a sophomore at Elk River High School, where she plays the saxophone in the band, enjoys participating in pep rallies. She has one brother, Aaron, who later was diagnosed with cancer, and one sister, Allison. Her parents are Tim and Terri Dwyer.

“The staff at Children’s – Minneapolis have been amazing with her treatment,” Terri said. “It is because of Dr. Joanna Perkins, her primary doctor; Dr. Bruce Bostrom and many others that we have our Abby here today with us. Abby’s treatment was very intense for 20 months. We are so grateful for the support and care that the nurses in the hospital and in clinic have given to Abby.”

Abby’s favorite nurse at Children’s was Erin Ryan, RN, because she showed so much compassion to Abby during her difficult treatment. Abby is quick to note that there were many nurses that impacted her care and made her many nights in the hospital more bearable and fun.

Abby loves the outdoors, especially mountains, and to attend camps, which she has done three times this summer.

Spend time with Abby and you’ll see that she is a kind and independent person who loves to be around children. She’s always looking out for others and offering of herself with her servant’s heart. She loves to hang out with friends, play games and watch TV. Abby has an infectious laugh and positive attitude that follow her.

Abby wants to be a nurse or a child life specialist in the future as a way to give back to her community for all of the things that were given to her.

Subscribe to MightyAfter watching sister battle cancer, Aaron Dwyer faces fight of his own

Aaron Dwyer, who saw his sister, Abby, battle cancer, was diagnosed with stage 3 T-cell lymphoma on Dec. 13, 2013, four years after his sister’s cancer diagnosis.

Aaron has 1½ years of treatment remaining. In spite of it being a tough road, he has handled it well by trying to stay positive and keep his faith.

“The Children’s staff has been amazing to Aaron. They welcomed him in and have taken incredible care of him during his treatment,” his mother, Terri Dwyer, said. Aaron’s primary doctor, Joanna Perkins, MD, was there for Abby’s treatment, too. “Aaron has had a couple tough points in his treatment, but the staff stepped in and truly gave Aaron the support and encouragement he needed. We could not have made it through it all without the caring team at Children’s.”

The Elk River High School senior plays the trumpet in the band and two jazz bands.

When pressed, Aaron admitted that two nurses are his favorite. John is his favorite nurse at clinic because the two share many of the same interests, and Leah is his favorite nurse in the hospital because she always makes him laugh and they joke around, which makes his stays a bit more bearable.

Aaron wants to go into the banking as a career. He’s already had a taste of it at his job as a bank teller, and he enjoys it.

Outside of work and school, Aaron is busy. He likes to spend his free time cooking new and delicious recipes. He also enjoys hanging out with friends and playing games, riding four-wheelers, running and spending time at home. But that’s not all. He also enjoys playing piano, listening to country music, hunting, target practice, camping with his family and hiking.

Like his sisters, Abby and Allison, Aaron is a kind and giving person who always has a smile on his face. He’s a hard worker with a great attitude about life and a great sense of humor.

Cancer survivor, bone marrow recipient aspires to be doctor

Maddie Travers, a seventh-grader, lives in Scandia, Minn.

Maddie Travers, a seventh-grader, lives in Scandia, Minn.

Look up the words “tough,” “fighter” and “loved,” and wherever they intersect, there is sure to be a picture of Maddie Travers.

Maddie was diagnosed with ALL leukemia on Dec. 7, 2011. As her mother, Nikki, noted, “It was the worst day of our lives.”

Since that day, Maddie has battled to get to where she is now. She had two CNS relapses. At that point, her only option was a bone marrow transplant. But she had an infection and was admitted to the intensive care unit for 14 days over Christmas, with five of those days on life support. She had her transplant in April this year.

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Maddie received a bone marrow transplant in April.

She did well at first but then came down with a series of infections. After 96 days in the hospital, Maddie was released to go home on IV antibiotics.

”We can’t wait to get back to all the wonderful people at Children’s. We miss them so much,” Nikki said. “Maddie is seen by Dr. Bruce Bostrom. He has been so wonderful to us throughout all of this. He texts me so I can ask him questions. Dr. Bostrom and Maddie’s favorite nurse, Liz, would come over to the hospital to see her even when she was on life support. Dr. Bostrom would text me when Maddie was really sick and let me know that he knew what was going on and that he was there if I needed him. That really meant so much to both of us.”

Today, Maddie and the Travers family are looking ahead. Maddie, a seventh-grader, lives in Scandia and will be home schooled as she continues to recover from her bone marrow transplant.

Maddie wants to be a doctor when she grows up due to her firsthand experience in hospitals and “never give up” attitude.

Boy battles brain tumor, congenital heart disease

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart.

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart.

To say the Jones family has had their share of devastation would be an understatement.

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart. Eight years later, he was diagnosed with cancer.

In December 2013, Dylan became unresponsive at school in Illinois. He regained consciousness within a minute and was talking by the time school staff called his mother, Elizabeth Jones. He seemed OK, but everyone agreed that he needed to be seen by a doctor, so his mom drove him to a nearby emergency room.

Calm quickly turned into fear.

“It wasn’t until we got to the emergency room and they did a CT scan that it was all a shock to us,” Elizabeth said.

Dylan had a medulloblastoma, a fast-growing, high-grade brain tumor. He underwent surgery to remove the tumor, leaving him wheelchair bound and legally blind. After surgery, he was taken by air transport to Children’s Hospitals and Clinics of Minnesota to continue care close to extended family.

He underwent six weeks of radiation and chemotherapy. In April, he started another round of chemo that’s scheduled to end this month.

Subscribe to MightyDylan’s case is unique, and he requires a lot of attention when he’s hospitalized, Elizabeth said. But the nurses don’t mind. He’s such a charmer that they “fight” over him, she said.

“I can’t ask for better doctors. I can’t ask for better staff,” Elizabeth said.

Since starting chemotherapy, the hospital has become like a second home. The past four months have felt like the longest of Elizabeth’s life, she said.

Between his brain tumor and congenital heart disease, Dylan has suffered a lot in his short life.

“If I could take his place, I would. We fight, though. He’s a fighter,” Elizabeth said. “For all he has been through, he still continues to put a smile on his face, no matter what.”