Category Archives: News

Volunteers needed for Minnesota State Fair

Want a free ticket to the Minnesota State Fair?

We’re looking for fun volunteers to help staff our Making Safe Simple booth. We have four interactive stations: helmet safety, car safety, household safety and water safety. All volunteers receive free entry to the fair and a T-shirt.

There still are several volunteer spots available — Labor Day weekend is our greatest need for champion volunteers:

Subscribe to MightySaturday, Aug. 30

  • 5-8:30 p.m.

Sunday, Aug. 31

  • 2-5:30 p.m.
  • 5-8:30 p.m.

Monday, Sept. 1

  • 2-5:30 p.m.
  • 5-8:30 p.m.

Encourage your family and friends to volunteer, too!  Please note that volunteers must be 18 years or older. To sign up, please contact Ana Nugent at Ana.Nugent@childrensmn.org. We hope to see you at the fair!

Laser in action: See how Gavin’s tumor met its match

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children's – St. Paul on Monday, June 16, 2014.

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children’s – St. Paul on Monday, June 16, 2014.

In the two years since Gavin Pierson’s brain tumor, which he calls “Joe Bully,” was discovered, he has undergone 17 surgeries. A combination of craniotomies and the Pfizer drug, palbociclib, had been managing the growth of Joe Bully, but not decreasing its size. Gavin and his family were growing tired and frustrated with invasive surgeries, and Gavin wasn’t bouncing back as well as they hoped.

Enter Visualase.

Visualase is a laser used for neurosurgery and is guided by MRI images to precisely target areas of the brain that were previously thought inoperable. After making a 3-centimeter incision, Joseph Petronio, MD, and his team guided a small laser fiber directly to Gavin’s tumor. Children’s is the only pediatric hospital in the Midwest using Visualase, and Gavin is the only patient in the country to use this technology to treat a mature teratoma brain tumor.

Learn more about how Dr. Joseph Petronio used the Visualase laser:

Subscribe to MightyNot only did this technology target and dissolve a significant portion of Gavin’s tumor, it’s also prohibiting re-growth – stopping Joe Bully in its tracks. The laser is so targeted that the brain tissue surrounding the tumor was unharmed, making for a quick recovery. Within 12 hours, Gavin was sitting up, eating and laughing with his siblings and parents. Gavin went home the next day and was back to school within four days.

These types of minimally invasive surgeries have incredible benefits for Children’s patients. Since obtaining Visualase in October 2013, Children’s has treated patients as young as 12 months for epilepsy and other types of brain tumors. Tools like Visualase are making tumors we once thought were inoperable – operable.

Gavin vs. Joe Bully: First-of-its-kind laser surgery shrinks tumor by more than 40 percent

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

If you’ve been following 8-year-old Gavin Pierson’s story, you know he and his family have been through a lot. In 2012, Gavin was diagnosed with a mature teratoma brain tumor.

Since then, he has undergone numerous craniotomies and he and his family have dealt with big drug companies to fight his brain tumor, which Gavin refers to as “Joe Bully.” Unfortunately, Joe Bully is a particularly tough tumor, located in an area that is difficult to operate on and comprised of hard, “concrete-like” tissue. While Gavin’s prior treatments made progress, Joe Bully kept growing back.

give_gavin_blogBut it appears that Gavin’s neurosurgeon, Joseph Petronio, MD, may have found Joe Bully’s weak spot. Over the past eight months, Gavin has undergone two Visualase laser surgeries, an MRI-guided procedure designed to incinerate the tumor. He’s the first patient with a mature teratoma to ever use Visualase – and it may have stopped Joe Bully in its tracks.

Children’s and the family also successfully petitioned pharmaceutical company Pfizer to grant Gavin access to an experimental drug, palbociclib, to help control the tumor’s growth. Gavin is the youngest patient to use palbo.

We’re happy to announce that a recent MRI scan showed Gavin’s formerly peach-sized tumor has shrunk more than 40 percent. Even better? There are no signs of regrowth.

Gavin’s courage and strength inspire us every day. Thank you, Gavin, and congratulations.

Learn more about Gavin’s story and surgery:

Tech Spotlight: A look at Visualase, a minimally invasive laser surgery system

Visualase's workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment.

Visualase’s workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment.

Gavin Pierson, now 8, of Ramsey, Minnesota, underwent two Visualase procedures in October and February.

Gavin Pierson, now 8, of Ramsey, Minnesota, underwent two Visualase procedures in October and February.

The story of Gavin Pierson, the 8-year-old Ramsey, Minnesota, boy battling a brain tumor, includes a number of key players: his doctors, parents, siblings and care team, and the thousands of people who have followed his two-year fight against the aptly nicknamed “Joe Bully.”

But one of Gavin’s most important allies doesn’t have a degree, voice or personal Facebook page.

Visualase, an MRI-guided, minimally invasive laser system, has been the Kryptonite to Gavin’s tumor since he became the first person with a mature teratoma brain tumor to undergo the procedure. His first laser surgery took place on Oct. 29, 2013, at Children’s Hospitals and Clinics of Minnesota and his second four months later on Feb. 20, 2014.

“There are many things that make this procedure unique. One is the use of MRI, which allows us to monitor the temperature of both the tumor and the normal brain during the laser treatment,” said Joseph Petronio, MD, medical director of pediatric neurosurgery at Children’s and the doctor who led Gavin’s Visualase procedures. “The composition of (Gavin’s) tumor is unusual, including elements of bone and skin that makes it conduct heat very broadly. By being able to monitor temperature that closely, we are able to target the tumor more precisely without damaging other tissue.”

Founded in 2005, Visualase, Inc.’s system is a minimally invasive laser procedure that allows surgeons to pinpoint and treat lesions and tumors with extreme precision.

So, how does Visualase work?

  • Visualase Cooled Laser Applicator System: The system features a disposable fiber optic catheter with a built-in cooling mechanism that prevents overheating near the surface of the applicator. This laser catheter is placed through a small opening in the scalp and skull and into the center of a tumor using advanced MRI technology. Laser energy is then used to heat the tumor carefully. The system was engineered to allow for the use of higher laser powers to destroy tumors with shorter exposure times.
  • Laser generator: The generator produces light energy that is used to thermally ablate, or destroy, soft tissue.
  • Workstation: The workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment. It also provides on-screen visuals of the tissue as it turns into a solid or semi-solid state. Because of the in-depth monitoring, the procedure results in a high level of precision and control.
  • Temperature: The time it takes to destroy parts of the tumor depends on the temperature of the laser. When set to 113-140 degrees Fahrenheit, tumor cells eventually get destroyed. Cells and tissue are destroyed immediately when the laser is between 140-212 degrees. Anything above 212 degrees, though, can cause water in the tissue and areas inside a cell to vaporize, and leads to ruptured cells and tissue components.
  • According to Visualase, once soft tissue is destroyed, or ablated, it is considered non-viable and is reabsorbed, leaving little evidence that a tumor or burn existed.

After getting its start in treating liver and prostate problems, the Visualase Thermal Therapy Subscribe to MightySystem was cleared by the Food and Drug Administration in 2007 for the ablation of soft tissue in neurosurgery. Visualase’s first minimally invasive neurosurgical procedures were performed in 2006 in Paris as part of a study for treating brain tumors.

The Visualase laser system is in use at more than 40 hospitals, nationwide, including 15 pediatric hospitals. In pediatric patients, including at Children’s Hospitals and Clinics of Minnesota, Visualase has also been used to address brain lesions that cause epilepsy.

“What’s exciting to me is the path this technology opens to areas of the brain that were closed to us before,” said Petronio. “To think we could reach a day when the term ‘inoperable brain tumor’ in children is obsolete is extraordinary.”

Source: visualaseinc.com

The road to recovery: Pediatric cancer services

Each year, close to 12,500 children in the U.S. are diagnosed with cancer. Among them who live in the Upper Midwest, more than 70 percent are treated by Children’s Hospitals and Clinics of Minnesota. This week we shared Jenna Carnes’ cancer journey on Twin Cities Moms Blog. Jenna is one of many teens we see in Children’s Cancer and Blood Disorders Clinic each week, and just like every pediatric cancer patient, her journey is a unique one.

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

“Like all of our patients, we want Jenna to still be a kid and not to have to grow up too quickly because of the disease she’s dealing with,” said Dr. Joanna Perkins, Jenna’s treating physician in the Cancer and Blood Disorders Clinic at Children’s. “With the suite of treatment options we offer, Jenna’s been able to get back to being a normal teen.”

Beginning with the Child Life department, Jenna utilized many of Children’s support services to help her in her healing journey. From how to talk about cancer with her friends at school to going to surprise Minnesota Twins baseball games with her family, Jenna said her child life specialists made each day that she was at the hospital just a little easier. This was a welcome relief for her family.

“What makes Children’s different than any other hospital are the services we offer that go above and beyond standard inpatient care,” said Dr. Perkins. “From the supportive care – ranging from physical therapy, psychology and nutrition specialists, music therapy, massage and pain and palliative care – to special events geared towards the whole family, we try to make the time kids and families have to spend in the hospital as good as it can be. A lot of kids appreciate the simple things, too – big TVs and video games.”

In addition to Children’s in-house services, many patients (including Jenna) go to Camp Courage in Maple Lake, Minn., to “just be a kid” for a week each summer. The camp also provides patients’ families with a much-needed break. With Children’s staff physicians and nurses, onsite, to administer medication and keep close watch on their patients, patients and their siblings take part in time-honored camp traditions and let loose for the week.

“Kids of all ages are there, and we’re all going through something really similar,” said Jenna. “There are no strange looks.”

As Jenna and her family prepare to celebrate the end of her chemotherapy treatments, Jenna’s care team at Children’s will be by her side, cheering her on at her end-of-treatment party on June 12. Soon, Jenna will be a part of Children’s Destination STAR (Surveillance and Testing After Recovery) Clinic, which assists her with the transition to life after cancer therapy. She’ll work with Children’s Health and Wellness Team, consisting of staff members from oncology, nutrition services, physical therapy, psychology and child life, as well as her primary care physician for wellness visits to make sure the cancer does not return.

“Going to the hospital for cancer treatments will never be fun,” said Jenna. “But, I’m honestly going to miss coming to Children’s – it’s almost become a second home.”

Visit Children’s Hospitals and Clinics’ Cancer and Blood Disorders Clinic for more information. Children’s first annual Shine Bright Bash on Sept. 13 is to celebrate and support the advancements in pediatric cancer and blood disorder care.

NBC News: Sharing the story of Children’s cancer and blood disorders expertise

Michael and Megan Flynn with sons Andrew, 7 months, and Thomas, 5, and daughter Olivia, 3 (Photo by Julie Ratkovich Simply Bliss Photography)

NBC News shared the story and collective work of Children’s Hospitals and Clinics of Minnesota’s blood and cancer disorders team, including Dr. Kris Ann Schultz, Dr. Yoav Messinger, Gretchen Williams, CCRP, and Anne Harris, MPH, among others, who have led the way in enabling the early detection and effective treatment of children in families affected by rare genetic cancers.

via NBC News: One rare cancer leads to another: Cancer registry saves baby’s life

In 2009, while trying to understand pleuropulmonary blastoma (or PPB, a rare early childhood lung cancer), researchers leveraging data from Children’s International Pleuropulmonary Blastoma (PPB) Registry uncovered an unexpected cause: a mutation in DICER1, a master controller gene that helps regulate other genes. By leveraging those learnings and coupling it with new data from the International Ovarian and Testicular Stromal (OTST) Registry – a “sister” registry of the International PPB Registry – Children’s has recently discovered that the DICER1 gene mutation may underlie many additional rare childhood genetic cancers and could tell us something fundamental about how most cancers arise.

Children’s presented its promising findings this weekend at the American Society of Clinical Oncology (ASCO) Annual Meeting, advancing the potential for early diagnosis and proactive treatment of children in families affected by PPB, as well as other rare genetic cancers such as certain ovarian, nose, eye and thyroid tumors.

With the establishment of the International PPB Registry in 1988 and the International OTST Registry in 2011, Children’s, along with our partners, have become the world’s leading experts on how to care for children with PPB and other cancers marked by the DICER1 genetic defect. As a result, PPB could be among the first cancers routinely curable before it progresses to a deadly form.

Children’s work and ability to follow the science continues to be made possibly entirely by philanthropy, including the St. Baldrick’s Foundation and the Pine Tree Apple Tennis Classic.

Congratulations to the Children’s cancer and blood disorders team!  Thank you for your commitment and your amazing, groundbreaking work.

Trustworthy: Vaccines have earned that title

Two doses of measles-mumps-rubella vaccine will prevent measles in 99 percent of those vaccinated.

By Patsy Stinchfield, PNP

The confirmation of 83 cases of measles in Ohio this month and the recent quick diagnosis of a 19-month-old with measles in Minneapolis, Minnesota’s first case of measles this year, brought a timely reminder that the potentially deadly virus has not been eradicated and of the importance of vaccination. Having just wrapped World Immunization Week and National Infant Immunization Week, the importance of immunization is as great as ever.

In fact, the U.S. Centers for Disease Control and Prevention reported today that the 288 cases of measles in the country so far this year are the highest since 2000. The number of cases reported this year is the highest for the first five months of a year since 1994.

I worry that the numbers are a sign of growing credibility for a small band of celebrities and others who have thrown up an online smoke screen of fear of vaccines against measles, whooping cough and other common childhood diseases.

If even a relatively small percentage of Americans buy into this criticism, it would be disastrous. Measles, one of the most contagious airborne diseases, can be extremely serious, leading in rare cases to pneumonia and fatal brain infections. Infants too young to be vaccinated particularly are at risk.

We’re fortunate that the child in Minnesota, who actually had one of two measles shots and apparently contracted the disease during a visit to India, was diagnosed within minutes at Children’s – Minneapolis. Because the alert medical team picked up the symptoms so quickly, only 16 potentially exposed people had to be notified after the child was quarantined.

Three years ago, as many as 700 contacts had to be reached for some patients during an outbreak at Children’s.

What’s most frustrating is that it’s all so unnecessary.

The virus hasn’t changed all that much. It’s not like the HIV virus, constantly mutating. No; with measles the culprit purely is social – a breakdown in trust of medical experts whose longtime vaccine advocacy made measles and other common childhood infections a footnote.

Fear-mongering online vaccine critics are not winning, in a classical political sense. Thankfully, more than 90 percent of parents still trust their health care providers and nationally recommended vaccines. If they didn’t, we would see frequent headlines about deaths from measles, whooping cough and other diseases.

However, the remaining 10 percent of parents are hesitant, have vague fears and wonder who to trust. They routinely hear or read vehement vaccine bashing in social media circles, which feeds fear and denial – and new outbreaks. New York City and Orange County, Calif., currently are dealing with measles outbreaks.

Measles is so highly contagious that just passing through a clinic waiting room two hours after someone with measles has been there can expose an unvaccinated newborn, which may be devastating.

We all must protect the vulnerable in our community by forming a protective barrier of our own vaccination. That’s a simple point seemingly lost on the peddlers of myth and pseudoscience who have infected too many parents with baseless fear of vaccines that protect their own children and the community at large.

Parents should trust health care professionals who urge vaccination on schedule. At Children’s, we speak from experience. We have seen children die or become permanently impaired from vaccine-preventable disease. Ask our specialists how many unvaccinated, critically ill children they have cared for, and they would answer “too many to count.” And how many they’ve seen with severe vaccine side effect? You’ll get a blank stare, or “I don’t recall any; maybe one at most.”

We have seen children with measles on a ventilator, fighting for their lives. That’s a bitter sight when you recognize that two doses of measles-mumps-rubella vaccine will prevent measles in 99 percent of those vaccinated. There’s no contest between the benefits of vaccines and their extremely rare risks.

Before the measles vaccine was developed in the 1960s, there were 2.6 million measles-related deaths per year worldwide. In 2012, that number was down to 122,000, mostly in children younger than 5 in parts of the world where vaccines are scarce or their parents refuse to allow vaccination. The point is that we can’t afford to let our guard down in the U.S. or elsewhere. In a global society measles is a mere plane ride away for the unprotected.

The safe, effective and trustworthy action for infants, children, adolescents and adults is to get vaccinated on time for all recommended vaccine-preventable diseases.

Aside from sanitary drinking water, vaccines remain the safest, most-life-saving medical intervention we have to protect our children.

Patsy Stinchfield, PNP, is the director of Infection Prevention and Control and the Children’s Immunization Project at Children’s Hospitals and Clinics of Minnesota.

Allergies in full swing in spring

Although allergies can develop at any age, they most commonly show up during childhood or early adulthood.

Winter exits, spring enters, and with it come irritants in the environment that can trigger allergies in children and adults.

In the U.S., more than 50 million people (1 in 5) are affected by allergies, which are caused by an overactive immune system, according to the American Academy of Pediatrics.

 

 

Cities 97′s Paul Fletcher to host Baby Steps 3K

Paul Fletcher of Cities 97 will be the emcee for Baby Steps 3K walk and party, taking place on Saturday, May 31, at the Minnesota State Fairgrounds. Paul and his wife, Spencer, their family and friends will walk in honor of their daughter, Elsie, who was born with Hirschsprung’s disease and continues to receive care at Children’s. All proceeds from Baby Steps 3K will go to support the neonatal program. Learn more about or register for Baby Steps 3K.

In 2013, Paul and Spencer shared their story about Elsie and the care they received at Children’s and the Ronald McDonald House:

Photo gallery: 2013 Baby Steps 3K

Minnesota spring means ticks, health risks

Deer ticks are tiny – about the size of a pencil tip – and brown-black in color. Wood ticks are larger and do not carry Lyme disease.

Erin Fritz, RN, CNP

The snow has now melted and the temperatures are rising, allowing our energy and activities to bring us outdoors. Spring weather brings sprouting trees, blooming flowers – and creepy crawly ticks that lurk in the woods, grass and marshy areas.

Whether you are heading up north to the cabin or playing in your backyard, ticks may be present and a tick bite may occur. Due to the extreme seasonal temperature changes and high humidity, Minnesota has a lot of ticks and high rates of tick-borne illness such as Lyme disease, and the risk remains high. Lyme disease is an infection caused by bacteria that is carried by some deer ticks. Deer ticks are tiny – about the size of a pencil tip – and brown-black in color. Wood ticks are larger and do not carry Lyme disease.

Prevention

Playing outdoors increases the risk of encountering a tick, but there are ways to prevent a tick from attaching and biting. The American Academy of Pediatrics recommends the following for tick and Lyme disease prevention:

  • Cover arms and legs by wearing long-sleeved shirts and pants tucked into socks
  • Wear a hat to cover hair
  • Wear light-colored clothing in order to see ticks more clearly
  • Wear enclosed shoes, use insect repellent with DEET
  • Stay on cleared trails whenever possible
  • Routinely check for ticks immediately after coming indoors

When you find a tick

Most ticks are noticed when crawling around on clothing or skin and easily can be removed by taking it off before it attaches to the body. If a tick already has attached, removal is rather easy and should be removed as soon as possible. While prompt removal is important to decrease the risk of developing Lyme disease, be aware that most medical experts agree that the tick must be attached for at least 24-36 hours before Lyme disease is transmitted.

In order to remove the tick:

  • Simply grasp the tick with a tweezers as close to the skin as possible
  • Without squeezing the tick’s body, slowly pull the tick away from the skin
  • Clean the bitten area with soap and water
  • Apply an antiseptic ointment

Be on the lookout

After tick removal, it’s important to monitor the site for expanding redness that might suggest a “bull’s eye” rash. This particular rash can be the first and most obvious sign of Lyme disease.  The rash usually doesn’t cause other symptoms, but burning or itching is a possibility. Further examination by a health care professional is needed if there is a bull’s eye rash, headaches, chills, fever, fatigue or muscle aches. If Lyme disease is suspected, a health care professional probably will prescribe an oral antibiotic for treatment. There’s no benefit in testing for Lyme disease at the time of the tick bite; even people that become infected will not have a positive blood test until approximately two to six weeks after the infection post-tick bite. Early identification and treatment is important to reduce the risk of worsening illness.

While ticks and tick-borne illness easily can be overlooked, prevention is vital. This is the time of year to take full advantage of the long-awaited summer. Get outside and play safely.

Erin Fritz is a certified nurse practitioner at Children’s Hospitals and Clinics of Minnesota.