Monthly Archives: October 2013

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.

Recipe: Spaghetti squash crumble

If you’re looking for an alternative to mashed potatoes or roasted veggies, you gotta try this spaghetti squash crumble. It’s the ultimate, sweet-and-savory fall side dish that just screams comfort food. The yellow winter squash is also low in calories and packed with nutrients, such as beta-carotene and fiber. — Andrew Zimmern

Photo by Madeleine Hill

Ingredients

Squash filling

  • 2 medium sized spaghetti squash
  • 1/3 cup minced parsley
  • 1 tablespoon fresh thyme leaves
  • 1 stick butter
  • 1 pinch ground nutmeg
  • 1/4 teaspoon ground cinnamon
  • Pinch ground allspice
  • Pinch ground ginger
  • 1/4 cup minced shallots
  • 3 minced garlic cloves
  • 1 cup diced tomato, drained

Crumble topping

  • 2 cups fresh bread crumbs
  • 1 stick salted butter, melted
  • 2/3 cup ground Pecorino Romano
  • 1/4 cup brown sugar
  • 1/3 cup thinly sliced almonds, lightly toasted

Instructions

Servings: 8 to 10
Total Time: 2 hrs 45 min

Preheat the oven to 325 degrees.

Halve the spaghetti squash and remove the seeds. Place on a large shallow baking dish or sheet pan, and season with salt and pepper. Roast the squash, flesh side up, for 90 minutes.

After the squash are cool enough to handle, scrape the flesh into a large mixing bowl with a fork.

Sauté the shallots and garlic in 2 tablespoon of the butter until translucent, about 5 minutes. Stir that mixture into the spaghetti squash.

Melt the remaining 6 tablespoons of butter, and pour into the squash. Then, add all the herbs, spices and tomato. Fold together. Season with salt and pepper and reserve.

In a separate mixing bowl combine one stick of melted butter, the bread crumbs, cheese, almonds and the brown sugar.

Place the squash mixture in a large oval or rectangular baking dish and sprinkle the ‘crumble’ over the top.

Cover loosely in aluminum foil and bake for 25 minutes at 325 degrees.

Remove the foil and raise the temperature to 425 degrees. Cook until ‘crumble’ is crispy, roughly an additional 25 minutes.

 

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.”

Robby Kruger to ‘Lead the Team’ at Vikings game

When Robby Kruger was 1-and-a-half years old, his parents realized something was amiss with how his legs were growing – one grew faster than the other. At the ages of 4 and 9, he underwent bone lengthening operations to correct the condition. Robby broke his other leg this summer while playing a friendly game of kickball, which is when his doctors discovered he had osteomyelitis, an infection in the bone. He faces another series of surgeries before reaching adulthood.

Robby, now 12, is a seventh-grader who enjoys playing baseball and football. He and his family have enjoyed the care they have received at Children’s Hospitals and Clinics of Minnesota and are extremely proud of the adversity he’s overcome. We welcome the Kruger family as Robby leads the team in Sunday’s game against the Green Bay Packers!

Five Question Friday: Abby Davis

Meet Abby Davis, a member of our chaplaincy team!

Abby Davis

How long have you worked at Children’s? I started at Children’s in 1996 as a chaplain resident through Abbott Northwestern Hospital.  I came from Boston for a short-term residency program, but I have now been here for 17 years! I have been assigned to the NICU and ICC the whole 17 years. I spent four years in cancer and blood disorders and various other units, but I am currently assigned to NICU, ICC and the Eating Disorders inpatient unit.

What drew you to chaplaincy? At my liberal arts college in Maine, I was studying religion and Spanish.  One summer, I was interpreting Spanish at Massachusetts General Hospital.  As the patients and I made small talk, they asked what I was studying. When I said religion, the patients would talk about their faith, either that their faith was the one thing carrying them through their hospitalization or else that they were struggling with their faith amidst their suffering.  I was drawn to listening to and supporting people as they explored their faith during difficult times. My pastor mom was the person who suggested hospital chaplaincy. It has been a perfect fit.

What do you love most about your job? I love having REAL conversations with people.  Sometimes these conversations are painful for patients and families, and sometimes they are joyful.  It is important to me to support people during difficult times, be with them in the struggle as well as help them feel some hope and/or peace.  Also, I love that I am able to work with people from many different faith backgrounds, whether they are “religious” or “spiritual,” both or unsure where they stand!  I appreciate the diverse cultures that we work with at Children’s and that I still get to speak Spanish! I could not be more grateful for the other chaplains, Dee, Hal, Sherry, Brian and all of the on-call chaplains. We have an amazing group in the chaplaincy department! We give each other good support, and we have a lot of fun.

When you were a kid, what did you want to be when you grew up? When I was a kid, I wanted to be a dog trainer, an actress or a singer! I still don’t have a dog, but I do coordinate the Children’s staff choir. We sing at various Children’s events and services. Let me know if you want to join us!

If you could travel anywhere in the world, where would it be and why? My husband and I enjoy low budget backpacking for travel. I lived in Guatemala, and my husband and I took a year off to backpack three months in New Zealand/Australia, seven months in Asia and two months in southern Africa! Now that we have three kids, we go mostly to New England to visit my family. I would love to go to the Galapagos Islands, Machu Picchu, and other parts of South America or simply see more of Europe. In an instant, I would return to my favorite places: Guatemala, Nepal, Laos, Swaziland or New Zealand!

 

 

Live chat on bullying with the Star Tribune

 

It’s hard to go a day without reading or hearing about someone being bullied. Earlier this month, two young girls in Florida were arrested after allegedly harassing a classmate who ultimately committed suicide. The story made national headlines. 

It’s national bullying prevention month, and we can’t think of a better time to talk about this important issue. Join us and local experts on Monday, Oct. 28, at noon for an hour-long discussion on bullying. We’ll talk about defining bullying, the difference between bullying and healthy peer-to-peer conflict, signs a child may be involved in bullying, what parents can do when their child is bullying others and what kids and families can do to raise awareness.

To participate, visit the Star Tribune. You can also sign up for a reminder.

The following individuals will be on hand to answer your questions:

  • Dr. Mike Troy, Medical director, behavioral health services, Children’s Hospitals and Clinics of Minnesota
  • Kelly Wolfe, Senior advocacy and health policy specialist, Children’s Hospitals and Clinics of Minnesota
  • Julie Hertzog, Director, PACER’s National Bullying Prevention Center
  • Christina Wagner, high school student and activist

This summer, Children’s released a white paper on bullying.

When is it bullying?

Classroom bullyingIt’s bullying prevention month, so you may be hearing a lot about the problem of bullying and how to address it. But what exactly is bullying? It turns out that defining this problem is not as easy as it might seem.

Bullying, defined

Perhaps the most commonly used definition is one offered by Dan Olweus, a psychology professor from Norway and one of the world’s leading experts on the subject.

According to Olweus, “Bullying is when someone repeatedly and on purpose says or does mean or hurtful things to another person who has a hard time defending himself or herself.”1

The definition may not say it all

The Olweus definition is a sound starting point for discussions on bullying, but other experts have pointed out some grey areas that require attention when determining if a child is involved in bullying behavior:

  • On purpose or not? Some bullies may be too young to know exactly what they are doing and why. In such cases, the bullying may not be done “on purpose,” but it may be bullying nonetheless.
  • Was that a joke? A child may perceive a remark as “bullying” when it was intended to be a joke, especially in the case of cyberbullying, where there are no facial cues to help interpret the intention of the remark.
  • Who’s in charge? Sometimes bullying takes place between kids of equal standing, which may be especially common in cyberbullying.
  • Kids with mental health conditions. Children who suffer from pre-existing mental health issues, such as depression, or are used to being bullied, may be predisposed to assume a negative intent behind a comment or action that isn’t there.2

Normal conflict vs. bullying

Spectrum of conflict infrographic

Click image to view full-size version

Conflict is an inevitable part of human association and resolving conflict constructively, rather than destructively, is a critical skill set that children begin to develop even as infants. The infographic at right (click for a full size version) is a guide to help us consider whether a conflict has crossed into “bullying territory.”3

While parents and teachers can help children learn how to successfully resolve conflict, most children need to learn conflict resolution skills on their own through experience. Aside from problem-solving, one of the most critical conflict resolution skills is for children to know when they can resolve the conflict on their own and when they need help from others.4

Learning to use problem-solving skills to resolve conflict is associated with:

  • Increased achievement
  • Motivation to learn and improve
  • Higher-level reasoning
  • Healthy social and cognitive development
  • Enriched relationships
  • Clarified self-image
  • Increased self-confidence
  • Resilience in the face of adversity5

On the other hand, the inability to successfully resolve conflict often leads to aggression and violence.

How to tell the difference between bullying and healthy conflict

Drawing a distinction between bullying and day-to-day conflict isn’t always easy, said Emily P. Chapman, MD, medical director of Children’s Hospitals and Clinics of Minnesota hospitalist program.

“If a child teases a good buddy, it can be in fun,” Dr. Chapman said. “If trust isn’t there, it could be intimidating or alienating, and that is bullying. It’s also likely to be bullying if there is mismatched stature between the ‘teaser’ and the ‘teased’ — older versus younger, popular versus not so popular.”

“Learning how to handle and resolve conflict is important to a child’s psychosocial development,” Dr. Troy said. “If we as parents or other responsible adults constantly intervene to help resolve these conflicts, then we may hinder rather than help the children involved. Bullying is different — it is outside the normal range of conflict, and it can be very harmful if not stopped.”

For more tips on how to address bullying check out this blog entry, or visit our resources page at ChildrensMN.org/bullying.

Notes:

[1] The Olweus Bullying Prevention Program, U.S., 2011.

[2] Dempsey AG, Storch EA. Psychopathology and Health Problems Affecting Involvement in Bullying. Preventing and Treating Bullying and Victimization (2010), Oxford University Press: 107-131.

[3] Broadbear BC, Broadbear JT. Development of Conflict Resolution Skills in Infancy and Early Childhood. The International Electronic Journal of Health Education (2000);3(4):284-290.

[4] ibid.

[5] Johnson DW, Johnson R. Why violence prevention programs don’t work and what does. Educational Leadership (1995);52(5): 63-67.

Recipe: Root vegetable salad with orange-tarragon vinaigrette

When the weather starts to take a chilly turn, I get excited about fall flavors. These earthy root vegetables pair well with the citrusy orange-tarragon vinaigrette, a combo that the whole family can get into. The veggies in this salad are nutritional powerhouses – beets are high in folate, manganese and potassium, rutabaga packs in the Vitamin C and just one carrot has more than 200 percent of your daily requirement of Vitamin A. — Andrew Zimmern

Photograph by Madeleine Hill

Ingredient List

  • 4 medium sized beets
  • 1 medium sized rutabaga
  • 6 medium sized carrots (about one pound)
  • 1 red onion
  • 1 bunch red radishes
  • 4 tablespoons olive oil
  • 3 tablespoons minced chives
  • 1/3 cup toasted sliced almonds
  • 2 oranges, peeled and segmented (cut into ‘filets’ free of their connective tissue)

Orange-Tarragon Vinaigrette

  • 1/4 cup fresh squeezed orange juice
  • 3 tablespoons tarragon vinegar
  • 2 tablespoons fresh tarragon leaves
  • 2 tablespoons dijon mustard (if you have tarragon mustard even better!)
  • 1 tablespoon honey
  • 1 tablespoon grated fresh ginger
  • Zest of 1 orange
  • 1/2 cup olive oil

Instructions

Servings: 4
Total Time: 1 hr 40 min

Root vegetable salad

Preheat the oven to 375 degrees.

Place the whole beets on a cookie sheet and roast at 375 degrees for about an hour, or until just tender.

While the beets are roasting, peel the rutabaga and carrots. Slice them into batons, roughly 1 1/2 inches long and 1/4-inch square. Brush with some olive oil, season with salt and pepper. Set aside.

When the beets are tender, remove them from the oven and let cool. Once cool, peel and cut each beet into eight wedges.

Heat the oven to 475 degrees.

Roast the carrots and rutabaga on a flat cookie sheet for 12 to 15 minutes, or until tender, at 475 degrees.

Cut the onion into eighths leaving the root end intact. Brush with olive oil and roast for 20 minutes at 475 degrees.

While the onions are roasting, slice the radishes into paper-thin slices on a vegetable slicer or mandoline.

Arrange the rutabaga, beets, onion, carrots, oranges and radishes divided onto 4 plates.

Garnish with the chives and toasted almond slices (feta cheese or shaved ricotta salata makes a nice addition as well).

Serve, passing the vinaigrette at the table.

Orange-Tarragon Vinaigrette

Whisk all of the ingredients together to combine. Season with sea salt and serve. Save any extra dressing to use on green salads or veggies later in the week!

 

Taylor Lieber to “Lead the Team” at Vikings game

Credit: Kathy King Photography for the Gold Hope Project

Taylor Lieber’s world was filled with collecting giraffes, composing songs, playing volleyball and other sports, and conducting science experiments.

But, at 15, her world was turned upside down. She was diagnosed with Ewing’s sarcoma, a bone cancer that presented in her sphenoid sinus, which is incredibly rare. Fifteen rounds of chemotherapy and 31 proton radiation treatments later, Taylor is cancer-free.

On Sunday, Taylor, 16, will represent Children’s Hospitals and Clinics of Minnesota and lead the Vikings onto the field before they face the Carolina Panthers. Children’s is the proud sponsor of the Mini Vikings Kids Club, and at each home game a Children’s patient like Taylor gets to lead the team.

Taylor is raising money in order to donate supplies for other teen patients, especially those with extended stays, on the seventh floor (cancer and blood disorders floor) at Children’s.

“She has friends at Children’s – Minneapolis who are still fighting and friends who have lost their battle with pediatric cancers,” said her mom, Lauren Lieber.

Taylor is a junior at Edina High School. She wants to work in pediatric oncology.

We welcome Taylor and her family to this week’s “Lead the Team” event.

Five Question Friday: Richard Holcomb

It’s Five Question Friday! Meet Richard Holcomb, our Welcome Center supervisor.

How long have you worked at Children’s? Since June of 2012 – a year and a half. 

What drew you to Children’s? A friend, Kendall Munson, convinced me that I would like working at Children’s, and he was correct.
What brings you back to Children’s, day after day? The staff and the children. I work with kind and compassionate people. The culture is positive and accepts that we are human and make mistakes, and most staff, I know work, diligently to provide the best service and care possible. Sometimes when my office door is open, a child will say hello as she/he is passing in the hallway. Or you will get to have a brief interaction with a family – these always remind me why we are here and how wonderful our patients are.
If you could travel anywhere in the world, where would it be and why? Almost too difficult to answer, as I would travel most anywhere. New Zealand, Nepal, West Africa and anywhere in Europe again.
When you’re not at work, how do you spend your time? Bicycling, swimming, workout at the gym, reading, traveling.