Category Archives: Technology and innovation

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

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.

Child free of seizures after laser procedure

Jack Healy, seen with his family, including his mother, Shannon, had a rare, benign tumor called a hypothalamic hamartoma.

By Shannon Healy

Our sweet baby boy, Jack, was born Oct. 18, 2012. When he was only a few weeks old, we started noticing he was having “episodes.” His body would tense up and he would scream like he was in pain. These continued to worsen as he got older and got to the point where he would wake up with them every time he tried to go to sleep. He also began having episodes where he would appear to be laughing but still looked terrified and in pain.

For months, we sought out different specialists to try to diagnose our baby’s episodes. Finally, in April 2013, we were referred to the neuroscience program inside the St. Paul campus of Children’s Hospitals and Clinics of Minnesota. Still unsure of what his episodes were, the staff began following him closely and keeping a close eye on his other symptoms (a large head and low muscle tone).

In August 2013, Jack had an MRI on his brain. Within days, we had a diagnosis: Jack had a tumor on his hypothalamus and his “episodes” were gelastic and dacrystic seizures associated with the tumor. This time was so overwhelming for us, but we finally knew what Jack was battling.

Jack was prescribed a few different seizure medications, but his seizures continued to worsen. At the peak, he was having up to 15 seizures per day; more severe and longer in duration than when he first started having them. They were taking a toll on Jack and our family. He has two older sisters who adore him, and they would get extremely upset every time he would have one of his “fits,” as they called them.

It seemed like the seizures were affecting every aspect of Jack’s life and development. He began refusing all solid foods and would take only bottles of milk. His seizures constantly would interrupt his sleep. He was having severe delays in his gross motor development and also was falling behind in his speech. Defeat and hopelessness were setting in for us.

After watching the tumor for three months, the neurology team at Children’s was able to confirm that Jack had a rare, benign tumor called a hypothalamic hamartoma. We were told that these tumors occur in only one in 1 million people, often appearing in young children. According to Meysam Kebriaei, MD, Children’s neurosurgeon, that number could be underestimated since hypothalamic hamartomas can be missed without high-resolution MRIs.

In December, we met with Dr. Kebriaei, who discussed a new surgical procedure called Visualase, an MRI-guided, minimally invasive laser procedure. He thought Jack would be a great candidate.

Jack would be the first patient at Children’s with a hypothalamic hamartoma to undergo a Visualase procedure. We were thrilled to have this option available to us and made our decision to proceed before we left the clinic that day.

We also learned that Children’s is the only institution in the Midwest to perform Visualase ablation for hypothalamic hamartomas. Dr. Kebriaei explained that Visualase would allow him to treat Jack’s tumor in such a way that will minimize the risk and decrease his recovery time, when compared to the standard, open surgical procedure. 

Jack had seven seizures the morning of his surgery.

Jack’s surgery was scheduled for Jan. 10. He had seven seizures the morning of his surgery; a strange reassurance to us that we had made the right decision. The surgery took the entire day and we were updated by Children’s staff throughout the process. We never left the waiting room.

At the end of the day, Dr. Kebriaei told us that the surgery had gone perfectly. The tumor had been completely disconnected from Jack’s brain. We spent two nights in Children’s ICU with Jack and, amazingly, he was seizure-free.

After going home, Jack experienced an unexpected drop in his sodium level, which required a readmission to Children’s. He spent 2½ weeks in the hospital, where he continued to receive extraordinary care and, in spite of this complication, continued to be free of his debilitating seizures.

It has been almost four months since Jack’s surgery, and he has not had any seizures. It still is hard to believe, considering he had these seizures daily for 15 months. Sometimes, I still expect him to be having one when he starts laughing, but then I realize that he is laughing because he’s so happy!

Jack has been seizure-free since undergoing the Visualase treatment.

With the seizures gone, we now are able to focus on Jack’s development. He is having therapy multiple times each week, and we already are seeing progress in his eating, speech, motor skills and sleep patterns. Just within the past week, Jack has been standing, walking and pushing toys through our kitchen. We are hopeful these parts of Jack’s life only will continue to improve.

This surgery has been life changing for us. We learned later that Jack is one of only 50 people in the country who have undergone Visualase ablation for a hypothalamic hamartoma. After months of feeling grief and hopelessness, we have a renewed hope that our sweet boy is going to have a healthy and happy life. As Dr. Kebriaei told us at Jack’s last appointment, “He’s about ready to take off.”

The neuroscience program at Children’s Hospitals and Clinics of Minnesota unites hundreds of experts in a common mission. We care for more neurology patients, more brain tumor patients and more epilepsy patients than any other hospital in the region. And we do it with some of the most advanced treatments and technologies available today.

Doctor teaches patient’s third-grade class about science of sound, hearing

Leah Tygum, MD (back row, left), visited the third-grade classroom of patient Sophia Nelson (middle row, second from left) at Redtail Ridge Elementary School in Savage to talk about the science of sound and hearing.

Working together was the spark that started a fire of learning and understanding for a class of third-grade students this winter. A collaborative project between staff at the St. Paul campus of Children’s Hospitals and Clinics of Minnesota and Redtail Ridge Elementary School in Savage helped students learn about the science of sound and hearing while creating a lifelong lesson that went well beyond the typical third-grade science curriculum.

“What’s that thing in your ear?” is a question Redtail Ridge third-grade student Sophia Nelson often has heard from classmates. Diagnosed at age 6 with moderate to severe hearing loss in her left ear, Sophia has worn a hearing aid for the past two years, and it has raised questions from several curious friends during that time.

Third-grade teacher Stacy Kodada (left) takes a turn using a small stethoscope placed to Sophia Nelson’s hearing aid.

This winter, when Sophia’s classroom teacher, Stacy Kodada, introduced a science curriculum that included studying the physics of sound, Kodada and Sophia connected about inviting Sophia’s audiologist, Leah Tygum, MD, to visit with Sophia’s classmates. Dr. Tygum, affectionately referred to as “Dr. Leah” by Sophia, has helped transform Sophia’s hearing-loss journey from one that began at diagnosis with fear and concern to one that now is characterized by empowerment and confidence. Since first meeting Sophia, Dr. Tygum has helped provide Sophia with resources to help her – and fellow students – better understand what some might consider Sophia’s “disability.” When invited by Kodada to visit with the third-graders, Dr. Tygum seized the opportunity to help Sophia better educate her classmates on hearing loss and hearing aids.

Prior to the on-site visit, students shared their questions about hearing loss and hearing aids with Sophia and her teacher. Their questions were honest, at times simple, and revealing in terms of a young child’s understanding of those who suffer hearing loss. Students posed several questions, including:

  • What happens inside the ear when you can’t hear?
  • How do you get the sound from the hearing aid into the eardrum into the brain?
  • How do you make a hearing aid?
  • How do you know if you need a hearing aid?

Sophia Nelson (left) had Leah Tygum, MD, visit her third-grade classroom at Redtail Ridge Elementary School in Savage.

On the day of her visit, Dr. Tygum was greeted by a room of students buzzing with excitement and questions. She facilitated more than 90 minutes of hands-on, interactive learning about hearing. Attempting to address all questions, she talked about the science of hearing, what goes wrong with hearing loss and how hearing aids work for those who need them. Using Sophia as a teaching partner, Dr. Tygum took the lesson well beyond Q&A, leading students through a variety of engaging learning activities. Dr. Tygum made a mold of Sophia’s inner ear while the students watched, just as she would do in her office to properly fit a hearing aid. To increase involvement, she then gave students their own individual balls of molding material so they could feel how it hardens into a shape in minutes.

To help make the hearing aid even more “real world” and understandable, the children were each given the chance to use a small hearing aid stethoscope which allowed them to hear sounds in the classroom the way Sophia does when she wears her aid. The exercise proved popular. After listening, children raced back into line in hopes of getting a second chance.

The classroom learning experience helped students understand the science of sound and hearing, but for Kodada it went beyond that.

“Having Dr. Leah come to the classroom allowed the students a different insight into others with hearing disabilities,” Kodada said. “The hands-on experience and real-life demonstration is a wonderful way for students to learn and then be able to apply it to their own life situations.”

While Sophia will probably continue to get questions throughout her life about her hearing loss, she’s certain that none of this year’s classmates will ever ask again “what’s that thing in your ear?”

Photo gallery: Leah Tygum, MD, visits third-grade class at Redtail Ridge Elementary School in Savage (Photos by Michael Nelson)

 

Not on Twitter? How to stay on top of your kids’ social media use

 

Use social media to help your kids develop self-control habits. (iStock photo / Getty Images)

Guest post by Maggie Sonnek

If Jennifer Soucheray had a Twitter handle, it probably would be something clever like @JentheMamaHen or @MrsSouchRocks. But this third-grade teacher and mom of three teens doesn’t have a Twitter account.

Or Instagram.

Or Snapchat.

But her three kids do. So, she and her husband, Paul, have had to find ways to monitor their social media use without being, “like, totes uncool.”

I asked Soucheray, along with a few others, to share a few of their tips and best practices when it comes to kids and social media. Here’s what they had to say:

1. Use social media to help your kids develop self-control habits

Whether it’s texting, tweeting or using Facebook these parents tout the benefits of putting limits in place early. According to the Soucheray household, texting and Twitter are where it’s at. Pew Research backs this up: teen Twitter use is at 24 percent – a significant jump from 16 percent in 2011.

“We know their phones are lifelines to their friends,” Soucheray said. “They need these tools otherwise they’ll be ostracized. But as parents you have to develop parameters for what’s acceptable use.”

One way these parents have put boundaries in place? All devices are turned in to Mom and Dad before bedtime.

2. Validate kids every day, offline

Soucheray, who taught middle school for 12 years, says it’s extremely important to validate your kids every day. She said that’s one reason why Facebook and other social media tools are so popular – because we’re all looking to be validated. (Author’s note: Not going to lie; there have been times that I’ve fallen into this trap and checked in on a status update or picture I posted to see how many “likes” it’s received. And when the number is higher or the comments are positive, for some reason, I feel a little better.)

“If a kid doesn’t hear she’s pretty or smart by someone who cares about her, she’s going to look for that somewhere else,” Soucheray said.

Dr. Robyn Silverman, a child-teen development specialist and body-image expert agrees.

“Teens are defining themselves during adolescence,” she writes on her blog. “They are figuring out where they fit into their social world and hoping that others look at them favorably.”

Soucheray and Silverman say it’s important to talk about your kids’ true gifts.

“Make sure your children understand that their strengths – such as their kind heart, conscious nature or musical ability – are recognized,” Silverman said, “and really make a difference.”

3. Use the tools for good

One thing that surprised me as I chatted with parents and teachers is that: Kids are using social media more than just a platform to post “selfies.” They’re also using it as a homework-helper.

Dan Willaert, a geometry and AP statistics teacher and Cretin-Derham Hall wrestling coach, tweets out reminders and practice problems to his followers on a regular basis.

“I’ll write out a problem, snap a picture and then tweet it,” Willaert said. He has a Twitter account for wrestling, too, and often sends updates about tournaments, schedule changes and snow days.

4. Be present

Soucheray admits she doesn’t have the right answer or the perfect balance for monitoring tweets and texts, but her one piece of advice is something all parents can take with them. And that’s simply to be present.

“Dig in and be there with them…be in the moment,” she said.

Maybe someday @JentheMamaHen will tweet out that advice to her followers. But for now, she has papers to grade and dinner to make. Her Twitter days will have to wait.

What solutions have you found to monitor your kids social media use? Share in the comments.

Maggie Sonnek is a writer, blogger, lover-of-outdoors and momma to two young kiddos. When she’s not kissing boo-boos or cutting up someone’s food, she likes to beat her husband at Scrabble.

The importance of play – for kids and adults

Hands-on play, where a child uses his or her imagination and ideas to self-discover, creates the best learning environment. (iStock photo / Getty Images)

By Jeri Kayser

When people try and remember the name of my profession, child life specialist, they often shorten it to “play lady.” That used to bug me when I was a young professional and ready to solve all of the world’s problems, but now I recognize the compliment. We breathe, drink and eat to stay alive – we play to bring forth a reason for all of that effort. Play is how we learn about our world, practice that knowledge and foster our sense of well-being and personal joy; it’s an honor to promote play in the world of health care, but it’s not without its challenges.

One current challenge is tied to the hot topic in popular culture about the value of gaming devices. Is playing a game on a smartphone when you’re 2 years old considered quality play? Short answer: No. The Academy of Pediatrics recommends no screen time for kids 2 and younger and only one to two hours a day for older children. The core aspect of the definition of “play” is that it’s self-directive. You’re deciding what you’re going to do with whatever you’re interacting with. One of the problems with electronic games is that game designers have done most of that for you.

Your toddler recognizes the status that phone holds, and it works for a bit to keep a child distracted from the fact that he or she is in the hospital or in a long checkout line at the grocery store.

So what can we use to help guide our decisions to promote healthy play? A great way to look at this is similar to how we all work to promote healthy choices for our diet. Potato chips are fine for an occasional treat, but we wouldn’t want to eat them all the time. If we did, we’d feel awful. Video games kind of are the junk food of play. The more the play requires from the child, the better the value and healthier the choice.

I notice this in the hospital when I come into a room to meet with a family about what to expect with surgery. People often are busy with an electronic device, but as soon as we start to talk, the interest is there to engage and the devices get turned off. When I bring a toy or some arts and crafts activities, kids always gravitate towards that; they want what they need.

I used to work in a summer daycare program for school-aged kids. We would spend the morning on a field trip and the afternoon at a beach. The director wanted us to provide structured activities for the kids in the afternoon, but we quickly learned that the combination of water, sand and friends led to a more-creative, imaginative and enriched play than anything with which we could have come up. Hands-on play, where a child uses his or her imagination and ideas to self-discover, creates the best learning environment.

I heard an interesting story on public radio on my long commute home. At the electronic show in Austin, Texas, at the South by Southwest conference, the big news at the conference was the “Maker Movement,” stressing the importance of hands-on play to promote understanding of how our world works. They interviewed an inventor, Ayah Bdeir, who created a toy of electronic bits that fit together with magnets, creating circuits. With this process, you can make all kinds of fun things. He explained the value of this explorative play by stating, “We need to remember that we are all makers and touching things with our hands is powerful and inspiring.”

In another century, another scientist noted the same thing. Albert Einstein declared, “Play is the highest form of research.”

Self-directed play offers the healthiest value for our play “diet,” and this extends throughout our lives. We all need to play. As I wrote this, I overheard a conversation between two anesthesiologists talking about how they used play to help them cope with life stressors. One likes his guitar, while the other enjoys making remote-control helicopters.

This important fact, one of the highest forms of self-care, needs to be part of the planning of how we provide health care. Play is important for all age groups, not just those adorable preschoolers. We need to incorporate this in everything we do, for teens, parents and staff.

Late Irish playwright George Bernard Shaw said it best: “We don’t stop playing because we grow old; we grow old because we stop playing.”

Jeri Kayser is a child life specialist at Children’s Hospitals and Clinics of Minnesota.

Recap: MRI-guided laser ablates Gavin’s tumor

Even superheroes don’t always win the first round in a fight.

But, 7-year-old Gavin Pierson came out ahead this week. Gavin, who has a brain tumor that he nicknamed Joe Bully, underwent Visualase MRI-guided laser surgery on Oct. 29. He is the first person in the country with a mature teratoma to have the surgery.

Nothing has come easy for Gavin, who has endured five craniotomies, chemotherapy and countless drugs since his diagnosis a year and a half ago. That included the MRI-guided laser surgery, in which it took two attempts before his tumor could be ablated. But, Gavin had an army on his side. Led by Dr. Joseph Petronio, a team of neurosurgeons, radiologists, nurses and our partners set out to fight Joe Bully.

Here’s a synopsis of how Joe Bully went down:

At approximately 8:09 a.m., Gavin was transported to the OR for sedation.

Bone-in fiducials were placed at approximately 8:46 a.m. A fiducial is an object placed in the field of view of an imaging system and appears in the image produced to provide a point of reference.

Gavin was taken to CT for scans at about 9:05 a.m. and returned to the OR around 9:30 a.m.

With the help of Dr. Richard Patterson, Dr. Petronio began mapping out a plan for placing small flexible laser probes to the intended target area – the tumor.

Around 10:26 a.m., Dr. Petronio created two burr holes before placing the probes.

About 30 minutes later, Dr. Petronio removed Gavin’s shunt, which was unrelated to the Visualase procedure.

Gavin was taken around 11:18 a.m. to MRI for additional scans. The MRI allows the physician to precisely monitor treatment using special Visualase software.

However, Gavin’s tumor deflected the probes. Ablation was halted.

The probes were removed, and skin fiducials were placed to for additional scans.

Gavin’s determined team took him back to the OR, where Dr. Petronio mapped out a new plan and entry point for another probe.

At approximately 3:39 p.m., Gavin was wheeled back to MRI.

About 45 minutes later, the team started ablation, in which laser light heated and destroyed the target area. Temperature maps showed the team the extent of the tissue being destroyed.

Pow! A significant portion of the tumor – an area that Dr. Petronio was unable to reach during craniotomies – was incinerated! Equally significant was the way the lesion responded to Visualase. Because of the type of tumor and its biology (relatively low blood perfusion), the laser distributed the heat extensively and the thermal distribution corresponded nicely to the shape of the tumor and the tumor/normal brain interface, Dr. Petronio said.

“To me, this represents perhaps the most significant development in Gavin’s case, in that we found, perhaps for the first time, that ‘Joe Bully’ has a weak spot, or an Achilles’ heel,” Petronio said. “I’m really encouraged about what we will be able to do with future ablations.”

By 3 p.m. on Oct. 30, Gavin was on his way home – less than 24 hours after surgery.

If you haven’t been following Gavin’s story, catch up here.

Gavin’s story: Fighting his villain with a laser

Gavin Pierson takes on Joe Bully

If this were a comic, Joe Bully would be the villain. A villain that’s about to go D-O-W-N, according to Gavin Pierson.

Joe Bully is the rare tumor inside 7-year-old Gavin’s brain.  But on Oct. 29, with the help of Dr. Joseph Petronio and his latest weapon – an MRI-guided laser – Joe Bully is going to be annihilated, vaporized, defeated.

“It’s a one-two punch,” Petronio has said of the laser, which is complemented by an experimental drug Gavin takes.

Petronio and Gavin’s family started vying for the laser last winter. The laser uses heat and MRI imaging to kill brain tumors. It has already been used successfully on a young Children’s patient with epilepsy. The saga to reach this day has been long, and not without plenty of ups and downs – like the experience of any superhero.

A villain is born

The story began a year and a half ago.

In a matter of just days, Gavin went from being a normal, healthy boy going to gymnastics and playing sports to struggling with double vision and having trouble looking directly at others. At his sister’s seventh birthday party, Gavin’s dad, Steve, asked his wife’s aunt, a pediatrician, to look at Gavin. Armed with a flashlight, she examined Gavin’s eyes. Seconds later, she suggested Steve and Nicole take their son to the emergency department at Children’s Hospitals and Clinics of Minnesota.

During the drive to Children’s, Nicole recalled that she and Steve were worried. They knew something was wrong with Gavin and feared he could go blind.

“I remember us saying, like literally looking at each other and saying, ‘Gavin loves this world so much and nature and science, and oh my gosh, what if he couldn’t see it.’”

Hours later, it would be Steve and Nicole who were blindsided.

Two physicians performed tracking tests on Gavin before order a CT scan. The family stayed in the emergency department following the tests. They were still there when a physician and surgeon returned to talk with Steve and Nicole. Steve could tell by the expressions on their faces that they didn’t have good news, he said.

“I kind of wish at that moment, it was like fast, and I was like can we just press pause because I’m not ready to hear what you have to say.  Unfortunately you don’t get to press pause, and that’s the thing about illness,” Nicole said.

It appeared Gavin had a brain tumor about the size of a golf ball, the physicians said.

Steve didn’t hear past tumor. “It was still ringing in my head that they just said my son has a tumor in his brain,” he said.

The saga continues

In addition to the tumor, Gavin had developed hydrocephalous – fluid on the brain. He needed immediate surgery to place an EVD to drain the fluid. Following surgery, Gavin was admitted into the pediatric intensive care unit (PICU), where he spent the next eight days while his parents, along with a team of specialists, determined a course of action.

A biopsy indicated Gavin had a mature teratoma, a benign tumor. But his alpha-fetoprotein level was heightened, a potential red flag for cancer. Gavin needed to undergo chemotherapy for five months.

During treatments, Gavin watched as many movies as he wanted, played games, watched The Dude in Star Studio. It was like a hotel for him, Nicole said.

“From the beginning, he wasn’t scared of anything. He just felt like, ‘Alright, well, they’re going to fix me, and I’m going to fight and big deal. Move on,” Nicole said. “He just seemed like it was nothing. It was just a breeze for him.”

A few months into treatment, an MRI showed the tumor had doubled its original size. At the same time, results from Gavin’s blood test showed there was no cancer in his body.

The cancer was gone, but the Piersons and Gavin’s doctors had a growing problem on their hands, his tumor. Because it was benign, neither chemotherapy nor radiation would obliterate it. Gavin needed surgery.

On June 21, 2012, Gavin underwent his first of three craniotomies in six weeks to reduce the tumor. Complications quickly followed. He developed a blood clot, then needed a Hickman and two shunts. It was one issue after another.

In November, Gavin had his fourth craniotomy. Dr. Petronio, his neurosurgeon, was making headway. The tumor was shrinking.

But Gavin couldn’t undergo craniotomies forever. His oncologist, Dr. Kris Ann Schultz, reached out to Pfizer about an experimental drug that had only been used in adults. She asked for compassionate use, allowing Gavin, the first child, to try it. Pfizer declined.

It wasn’t all bad news that month. During the summer, Gavin had developed agnosia, in which Gavin couldn’t process words he heard. His family learned sign language – about 200 signs – which Gavin picked up quickly and still remembers.

Nicole recalls the first day Gavin heard words again. She was at home, on family leave, with Gavin and his brother, Gage, and she was talking to Gage in the front room of their home. She told him to put on his shoes because they were going to the library. Gavin ran into the room, “Mom, I heard you say library,” he said.

Tears.

November and December were good months for the Pierson family.  Gavin continued to recover from the fourth craniotomy. But around Christmas 2012, he started leaning to one side again. Nicole knew something was wrong. On Christmas Day, she called Dr. Petronio. Two days later, Gavin had an MRI, which showed the tumor had grown.

This is not Gavin’s fate

Gavin’s favorite hero is Batman. He doesn’t have a super power. His power is that he can do what no human can do. Gavin needed someone like Batman.

On Jan. 7, 2013, Dr. Petronio told Steve and Nicole that Gavin likely only had a few months to live. Craniotomies every few weeks and months weren’t going to cut it. They needed another weapon.

Nicole and Steve became desperate. Dr. Schultz contacted Pfizer again. Meanwhile, the Piersons reached out to local media and created a petition on Change.org, anything that might sway the drug company to grant Gavin use of the experimental drug, Palbociclib, which had only been used in clinical trials in adults.

“When the standard approach isn’t working, you have to work hard to find a better answer. There are new treatments being developed all the time and it’s our job to try to match those emerging technologies to the patients who will benefit from them,” Dr. Schultz said.

The day before Gavin’s fifth craniotomy, the company agreed to discuss Gavin’s case at their compassionate use meeting.

“As the parent, you are supposed to make things better…and you just look at how sweet he is and you just, you know, we just felt like, oh my gosh, we just can’t give up,” Nicole said. “This is not his fate, and we were willing to go anywhere at that point and do anything.”

So was Gavin’s care team.

Gavin underwent his fifth craniotomy. Unlike the previous ones, he didn’t bounce back quickly. He needed therapy. It was six weeks before he could walk again.

There had to be a better answer.

Be strong and brave

It came while Gavin recovered from the craniotomy. Pfizer agreed to compassionate use, and Dr. Petronio found a laser that could potentially help destroy the tumor. For the first time in a long time, the outlook was good.

Gavin has been taking Palbociclib since he was approved for it last winter, and it has helped stabilize the tumor. The MRI-guided laser surgery will help decrease the size of the tumor.

His parents have never given up in their fight for Gavin.

“We have to keep pushing forward because, I’m telling you, it has not been easy.  I want it to be easier for other families,” Nicole said.  “I don’t want another kid to have to have five craniotomies before we have a drug that works or before we have a laser.”

The surgery, guided by MRI images, allows precise targeting. It’s also minimally invasive. Unlike previous surgeries, it’s expected Gavin will only have to spend a day or two overnight in the hospital.

He is so sweet to everyone he meets.  He has never made an enemy.  He is here for a higher purpose.  He is going to do great things in his life,” Steve said. “I want to make sure he gets the chance to do that, and that’s why, I think, one of the big reasons we keep pushing because every kid deserves a chance.”