Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Pediatrics

June 25th, 2016

‘How’d We Get So Lucky?’ — Proton Beam Therapy Available at the Right Time for Jackson

By SharingMayoClinic SharingMayoClinic

Proton beam therapy was available at the right time for Jackson Fisher.

For two weeks, 14-year-old Jackson Fisher was plagued by headaches, double-vision, nausea and weight loss. His parents, Michelle and Patrick Fisher, weren’t sure what was wrong. But when Jackson came home one evening completely exhausted after lacrosse practice, they decided it was time to find out what was going on. The next day, they took Jackson to the emergency room.

What doctors found during that ER visit triggered a series of events the Fishers never could have anticipated and that eventually led the family to Mayo Clinic’s Proton Beam Therapy Program, where Jackson received treatment for a brain tumor.

“Every single person we’ve met at Mayo Clinic has been amazing, and we feel like we were meant to meet them,” says Michelle. “His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second guessed his care. Being at Mayo Clinic has been the most positive experience of our lives.”

Turning to the experts

When Jackson first went to the ER in his hometown of Des Moines, Iowa, doctors there ordered a CT scan. The scan revealed a large mass in his brain. Due to the severity of his condition, Jackson was immediately flown via air ambulance to Mayo Clinic in Rochester, Minnesota. The next day he had surgery to relieve pressure in his brain. His care team also ordered a biopsy of the tumor to find out if it was cancer.

“We told his neurosurgeon, Dr. Daniels [David Daniels, M.D., Ph.D.], and oncologist, Dr. Rao [Amulya Nageswara Rao, M.B.B.S.], ‘Whatever you need to do, do it,’” Michelle and Patrick say. “It’s Mayo Clinic. We brought him to the experts to help him.”


"His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second-guessed his care." - Michelle Fisher


The morning after surgery, Jackson was able to get up and walk. A day after that, he and his family went back home. But his medical odyssey was far from over. Based on the biopsy results, Jackson was diagnosed with a mixed germ cell tumor that had both cancerous and noncancerous cells.

“His doctors were happy about the diagnosis and told us they have a lot of experience with the tumor type, which responds well to chemotherapy,” says Michelle.

Taking a novel approach

JacksonFisher500Because not all of the cancer could be removed with surgery, Jackson had 18 weeks of chemotherapy, first at Mayo Clinic and then at his hometown hospital. Although the chemotherapy was effective, Jackson’s Mayo Clinic doctors wanted to further reduce the tumor size.

Ideally, they would have operated on it, but the tumor location made surgery too risky. So the family met with Nadia Laack, M.D., a radiation oncologist, who recommended proton beam therapy, a highly targeted type of radiation therapy. Jackson completed seven weeks of proton beam therapy of his spine and brain, a treatment that became available at Mayo Clinic's Rochester campus in June 2015.

“How’d we get so lucky?” asks Michelle. “Proton beam therapy was available at Mayo just in time for my child. Otherwise, we’d have had to relocate across the country, which would have been a huge stress. We were able to drive the three hours home on weekends during his treatment.”

Getting back to life as usual

Jackson, a high school freshman, Skyped with school during his treatment and returned to classes when it was over. Now he’s excited to be back to his normal life, playing lacrosse and basketball, hanging out with friends, and spending time with his brother and his pets.

“Jackson has a life-threatening brain tumor, but other than his hair loss, you wouldn’t know he has cancer,” says Michelle. “We’re extremely fortunate that we could go to Mayo Clinic, and we will forever be indebted to his doctors and everyone else who cared for him.”

Even though Jackson has finished his treatment at Mayo Clinic, the Fisher family’s ties to Mayo Clinic remain strong.

“We’re really going to miss Randy McKeeman, the child-life specialist, and Nancy Heinzelman, the patient experience coordinator, in the Proton Beam Therapy Program,” says Michelle. “We instantly bonded with them. They’re so genuine and charismatic and truly are exactly where they should be to help children through this process. We’ll go back to visit even when we don’t have to because we made fast friends and will miss so many people.”


HELPFUL LINKS

 

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Tags: Dr. Amulya Nageswara Rao, Dr David Daniels, Dr Nadia Laack, Nancy Heinzelman, Proton Beam Therapy, Randy McKeeman


May 29th, 2016

Limb Lengthening and Regeneration Clinic Offers Hope for Amarachi

By SharingMayoClinic SharingMayoClinic

Amarachi talks about her experience with Blount's disease. Just six months ago, every step for Amarachi Austin-Okoh was filled with pain. The 11-year-old from Nigeria had enough trouble walking. Things like running, playing tag or playing basketball seemed like a dream. But now they're things she can look forward to, thanks to a life-changing trip to Mayo Clinic.

Amarachi has a condition called Blount's disease. Her mother, Modesther Austin-Okoh, says the family discovered the condition with Amarachi was just two years old.

Todd Milbrandt, M.D., an orthopedic surgeon at Mayo Clinic Children's Center, describes Blount's disease as "a failure of the growth plate to grow on the inside of the knee, specifically, the top part of the tibia." In Amarachi's case, her disease progressed to the point where she had severely bowed legs.

"We wish we could have seen her walk and be like other children," her mother says. "We were always crying for her."  Read the rest of this entry »

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Tags: Blount's Disease, Dr S Andrew Sems, Dr Todd Milbrandt, Limb Lengthening, Mayo Clinic Children's Center, orthopedic surgery


March 4th, 2016

Hope for ‘Happy, Healthy Life’ Thanks to Answers for ‘Never Seen Before’ Problems

By SharingMayoClinic SharingMayoClinic

Mallory Henthorn's family found hope for a rare condition at Mayo Clinic.

Written by Bethany Henthorn

Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS – omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. After Mallory’s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System – Red Cedar in Menomonie.

We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth. This monitoring involved several tests, ultrasounds and appointments. Mallory was born at 38 weeks' gestation at Mayo Clinic Hospital, Methodist Campus, on Oct. 19, 2014.

The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. It was explained that Mallory’s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect.

Mallory spent her first 83 days at Mayo Clinic. Most days were in the Neonatal Intensive Care Unit, but the last few weeks were on the general pediatric floor.  Read the rest of this entry »

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Tags: Cloacal Exstrophy, labor and delivery, Maternal Fetal Medicine, Mayo Clinic Children's Center, NICU, Obstetrics and Gynecology, OEIS, Patient Stories, Prenatal Monitoring


February 19th, 2016

Many Hands Make Hopeful Work for Nielsen Boys

By SharingMayoClinic SharingMayoClinic

NielsenFamily805"There is something wrong" are words no expectant parent ever wants to hear. And for Ryan and Kathy Nielsen, they came just 20 weeks into Kathy's first pregnancy. The couple was eagerly awaiting the arrival of their child and had been busy getting their home ready. Then, doctors diagnosed their unborn son, Aaron, with congenital diaphragmatic hernia during Kathy's 20-week ultrasound. After the shock wore off, the couple began a search for answers that ultimately led them to Mayo Clinic's Rochester campus.

"We debated on a number of facilities after Aaron's diagnosis, but we ended up coming to Mayo, because they offered an ECMO (heart and lung machine) as part of his treatment if he were to need it," Kathy says. "The other medical facilities did not."  Read the rest of this entry »

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Tags: Be the Match, bone marrow transplant, Dr Shakila Khan, Neonatal Intensive Care, transplant, Wiskott-Aldrich syndrome


October 30th, 2015

Putting Kieran’s Heart Back Where it Belongs

By Hoyt Finnamore HoytFinnamore

Baby Kieran is health today thanks to pediatric heart surgery at Mayo Clinic.Caitlin Veitz never takes for granted just how special her daughter Kieran is. “She’s laid back, happy, wonderful,” Caitlin says.

The circumstances around her birth, however, were not as serene.

At her 20-week ultrasound, Caitlin learned her baby's heart was not where it was supposed to be and that it had developed outside of the chest wall. The condition, called ectopia cordis, is "one of the, if not the, most rare congenital heart defects,” according to Joseph Dearani, M.D., a Mayo Clinic pediatric cardiac surgeon.

“We didn’t have any idea that anything like that could happen," says Caitlin. "It was scary. The odds were stacked against her.”  Read the rest of this entry »

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Tags: Cardiac Surgery, Congenital Heart Defect, Dr Joseph Dearani, Ectopia Cordis, Mayo Clinic Children's Center, 3d printing, Cardiology, Dr Carl Rose, Dr Christopher Moir, Dr Jane Matsumoto, Obstetrics, Pediatrics, Radiology


October 22nd, 2015

Rallying Around ‘Jack’ – Buying Time for 11-Year-Old Who Touched the Hearts of His Care Team

By Uma Thangaraj uthangaraj

Jack and his family with Jack's care teamHe melts hearts with his infectious smile, cheerful attitude and frequent magic tricks.

But the slogan on Haonan Jiang's T-shirt, which reads "Tough as Nails," is a more accurate summation of his spirit, and the fight he and his family have been waging.

The 11-year-old from Beijing, China, prefers to be called "Jack." He is suffering from what is known as an anaplastic astrocytoma, a grade 3 malignant tumor, according to his doctors at Mayo Clinic. The typical survival rate after diagnosis is one to three years.

Jack's parents, Ben and Lili Jiang, had promised him a trip to see America when he finished primary school. But instead of sightseeing, their focus is now on Jack and doing anything possible to stop, or at least slow, his deteriorating and deadly condition. Read the rest of this entry »

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Tags: anaplastic astrocytoma, Cancer, Dr Amulya NageswaraRao, Dr Nadia Laack, Dr Sherilyn Driscoll, Mayo Clinic Children's Center


August 31st, 2015

Mother Gives Daughter the Gift of Life … Twice

By Hoyt Finnamore HoytFinnamore

Addie Sylvester's personality has blossomed since her transplant. At 27 weeks into her pregnancy with twins, Amber Sylvester went to Mayo Clinic with her husband, Mike, for an ultrasound test and received news that no parent wants to hear. One of the babies was in trouble. She had enlarged kidneys, no amniotic fluid around her body, and fluid in her abdomen. She would likely not survive until birth. Even if she did survive, doctors said she would likely not live long enough to receive a transplant.

Amber remembers that appointment clearly. “The tech asked me if my water broke,” she says. “When I saw the concern on her face, I knew that something was not right. All I can remember is crying hysterically.”  Read the rest of this entry »

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Tags: Dr Mikel Prieto, kidney transplant, Living Donor Transplant, Mayo Clinic Children's Center, Mayo Clinic Transplant Center


June 26th, 2015

From Patient to Physician

By Hoyt Finnamore HoytFinnamore

Dr. Brandon Phillips with a young patient. Dr. Brandon Lane Phillips' experience as a patient and a student at Mayo Clinic influences his own practice of medicine today

As a pediatric cardiology fellow at Mayo Clinic, Dr. Brandon Lane Phillips cared for a number of children from Mongolia who had congenital heart defects. Before they went into surgery, he would take a photo of their hands next to his on a white piece of paper. He would do the same again after surgery and before they returned home.

The difference was striking. "In the pictures before heart surgery, you could clearly see a blue cast to their skin. After surgery, the blue was gone," he says. "That really hit home for me."

It made an impact because Dr. Phillips is not only a physician who specializes in pediatric cardiology, he's also been a pediatric cardiology patient.

"Many of the kids who came to us from Mongolia had the same heart defect I did: tetralogy of Fallot," he says. "They were often close to their teenage years and had never undergone surgery. These children were usually quite blue. They couldn't walk very far. It was a glimpse of what would have happened to me without the medical attention I received.  Read the rest of this entry »

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Tags: Mayo Clinic Graduate School of Medicine, Pediatric Cardiology, Pulmonary Valve Surgery, Tetralogy of Fallot


June 12th, 2015

Spina Bifida Won’t Slow Down Ty Wiberg

By Hoyt Finnamore HoytFinnamore

Ty Wiberg received his black belt in karate this past spring, despite mobility challenges caused by spina bifida. If everyone else can do it, why can’t I?

If Ty Wiberg, a 13-year-old from Chippewa Falls, Wisconsin, has one guiding principle in life, that might be the one.

The Chippewa Falls Middle School student has undergone 16 surgeries, walks with braces and uses a wheelchair for distance. Ty was born with spina bifida, a spinal cord malformation. He also suffers from hydrocephalus, a buildup of fluid in the brain for which a tube-like shunt drains excess fluid. And he has limited sensation from the knees down, among other issues.

Not that any of that is slowing him down.

Ty mono-skis, distance races with his wheelchair, scuba dives, plays wheelchair basketball, swims and does karate. This past winter, he spent a week at a downhill ski camp in Colorado for kids with disabilities and injured veterans. This spring, he recently received his black belt in karate.  Read the rest of this entry »

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Tags: Dr Jane Byrd, Dr Sherilyn Driscoll, Physical Medicine and Rehabilitation, Spina Bifida, Spina Bifida Clinic


April 15th, 2015

Roman’s Road to a Second Birthday

By Hoyt Finnamore HoytFinnamore

Anna Ryabova and Oleg Pecherskii, with their sons, Sergei and Roman.Faced with losing their newborn son, Anna and Oleg, searched far and wide for an answer. They found it and a new birthday for their son at Mayo Clinic.

After an ultrasound at 32 weeks into her pregnancy, Anna Ryabova, along with her husband, Oleg Pecherskii, faced a grim prognosis for their unborn son.

"The doctors in Russia told us his kidneys were very small, that they had not developed according to his gestational age, and that he would likely die within five days of his birth," Anna says.

But Roman miraculously survived, and on the 10th day, he was moved to one of Moscow children's hospital, where there was a nephrology department.

There, a nephrologist told to Anna and Oleg that Roman's condition would lead to a number of disabilities: he would have difficulty walking, as well as problems with his hearing, vision and mental development. Oleg asked doctors there about kidney transplant as a possibility for Roman. They answered that it was not a good idea and that children under five years had little chance of survival, in Russia especially. Instead, doctors suggested peritoneal dialysis.

"Nevertheless, we did not lose hope and were determined to do everything for our little son to get him out of disease. We staunchly believed in the best, and today we can say that our grit was rewarded by our very active and cheerful boy," Anna says.  Read the rest of this entry »

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Tags: Dr James Gloor, Dr Mikel Prieto, kidney transplant, Mayo Clinic Transplant Center


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