Author Archives: Brady.Gervais

Influenza is now widespread in Minnesota. Here’s what you need to know.

By Patsy Stinchfield, MS, CPNP

Patsy is a pediatric nurse practitioner in infectious disease and the director of infection prevention and The Children’s Immunization Project at Children’s Hospitals and Clinics of Minnesota.

Update

Influenza is now “widespread” in 35 states, including Minnesota.

There is still time to get vaccinated if you and your family have not yet done so.

To learn more about how Children’s is helping prevent the spread of influenza in the community, click on over to www.childrensMN.org/flu.

This post originally appeared on the Mighty Blog on Jan. 2.

As of Jan. 2, 2014, the Minnesota Department of Health has declared influenza “widespread” across the state, the highest designation level. Over the past two weeks, influenza cases at Children’s have more than doubled, however they still remain below where they were at this time last year. Now that influenza has arrived, it’s likely that it will remain in full swing in Minnesota for the next two months.

So what can you do? The No. 1 way to prevent the flu is to get vaccinated. And it’s not too late. Anyone 6 months of age and older who has not received their flu vaccine should do so now. Most clinics and pharmacies are still vaccinating and have a good supply of vaccine. The most common influenza strain we’re seeing is the H1N1 strain which is contained in this year’s vaccine. In addition to getting the vaccine, we also recommend frequent hand washing and avoiding touching your eyes, nose or mouth prior to washing your hands to help prevent the spread of illness.

If the flu has already reached your house, here are few helpful tips for caring for your child while they’re ill.

What’s the difference between the cold and the flu and how can I tell?

Sometimes it’s hard to know whether a child has a cold or the flu because she may cough, have a runny nose, sore throat and fatigue with both. However with the flu, a child tends to have a high fever which comes on more suddenly and may include severe fatigue and body aches. Colds tend to come on more gradually, and many kids may feel well enough to keep playing and going to school with a cold. Clinics may use a rapid nose swab test to determine if someone has influenza.

What should I do if I suspect influenza?

Most cases of influenza are mild and can be managed at home with rest, plenty of fluids, and fever-reducing medicines. Tender-loving care is good medicine, too. Most over-the-counter “cough and cold” medicines do not help a sick child get better faster and won’t have much effect on influenza. Sometimes, the flu can make a child very ill and a visit to the clinic or emergency room is necessary.

When should I take my child to the emergency department?

Take your child to be checked if they have difficulty breathing (fast, grunt-sounding, noisy breathing or small breaths), if their color looks bad (pale or bluish), if they aren’t drinking fluids often or urinating at least once every eight hours, or if they just aren’t themselves and you’re worried. Signs of dehydration are dry lips, sunken eyes, sleepiness or crankiness. Children who seem like they’re getting better and then suddenly get worse should be taken to the Emergency Department immediately. This could mean they have another infection such as pneumonia in addition to the flu.

What are the best ways to get my child’s fever down when she has the flu?

Fever is one of the tools our immune system uses to kill germs. However, children with high fever can feel quite miserable, get crabby, have trouble waking up and may drink less fluids causing dehydration. If you can’t keep the fever down with a fever-reducing medicine such as Tylenol or ibuprofen, then the child should be taken to the clinic or emergency department.

Is there anything else I can do to help make my child more comfortable?

You can keep your child home from day care, school, sports or other activities and have them rest early in their illness until they show signs of getting back to “their normal.” If your child doesn’t want to eat regular meals, don’t insist, but do make sure they drink small amounts of fluids every hour to prevent dehydration.

Is there anything I can do to help my child recover more quickly?

There is an anti-viral medicine called Tamiflu that can be given to children as young as 2 weeks of age. This is used if the child is hospitalized with moderate or severe influenza or if the child is outpatient but at higher risk for complications from influenza. These would be children with immune system problems or neurological, pulmonary, or metabolic underlying conditions. Tamiflu works best if given in the first two days of illness which can cut the severity and number of days of illness in half.

How long will my child be contagious?

Influenza is most contagious the day before symptoms present through about day four of illness. Your child should stay home from school during this time. After viral illnesses, kids can have lingering muscle or body aches and really do need time to rest and recover before rushing back to school. They can often pick up other viruses easily and may have a lingering cough as their airway heals. Depending on the severity of the flu, this may be a few days to a few weeks. Most kids recover within a week. Remember that many schools require that your child be fever-free (without the help of medicines) for one to two days before returning to school or day care.

Staying safe on the go: winter travel tips

Here in Minnesota, Gov. Mark Dayton just announced that all of Minnesota’s public schools would be closed Monday, Jan. 6. Why? The coldest temperatures in a decade are forecast to descend on much of Minnesota. Lows are expected to reach minus 30 degrees with wind chills predicted as low as minus 50 degrees in some parts of the state.

If you and your family have to venture out into the cold over the next few days, here are some great tips, compiled by Children’s Injury Prevention team.

Before You Go:

Pack a winter survival kit.

The Minnesota Department of Public Safety recommends keeping the following items in your car at all times during the winter months:

  • Metal coffee can, candles, and matches to melt snow for drinking water
  • Brightly-colored bandana or fabric and/or a whistle to alert others of your location
  • Pencil/Paper – or even some crayons and games to keep kids occupied
  • First Aid Kit
  • A battery-powered or crank-powered light; replace batteries yearly
  • Large plastic bags and safety pins to keep your feet dry and insulated
  • Snacks such as energy bars or other non-perishable foods

When possible, drivers should also make room in their vehicles for a shovel, extra warm clothes, jumper cables, tow chains, blanket or sleeping bag, and a container of sand, salt, or cat litter for traction.

Dial 511, visit www.511mn.org, or download MN DOT’s 511 app to your smart phone to check road conditions before you go, and always call ahead to your destination so someone knows when to expect you.

If you do get stranded, don’t panic. Stay with your car and don’t keep it running if your exhaust pipe isn’t totally clear of snow.  If you do keep the car running, open a window slightly to reduce your family’s risk of carbon monoxide poisoning.

Lastly, COMPLETELY clean off all of your windows of snow and ice before you drive.

On the Road:

Keeping your family safe while on the road in icy and wet conditions takes a little extra planning. The Minnesota Department of Transportation recommends the following tips when you’re behind the wheel:

  • Turn on your headlights and ALWAYS wear your seat belt
  • Turn off your cruise control – if you hit a patch of ice, your cruise control will cause your wheels to spin faster, putting you in higher danger of losing control of your vehicle
  • Stay at least 5 car lengths back, and be aware of snow plows as they turn frequently, sometimes with little or no warning
  • Be comfortable with your vehicle’s braking system; never pump anti-lock brakes; instead, apply firm pressure and steer in the direction you want to go
  • Using a lower gear can help slow your car down
  • Make turns as square as possible; reducing the length of the arc on turns can prevent your car from sliding around corners

At your Destination:

As you and your family get out of the car, be aware of traffic passing nearby and be aware of the conditions under your feet. Assume there’s ice underneath the snow and take precautions so you don’t fall.

  • Point your feet out slightly like a penguin to increase your center of gravity
  • Bend your legs and walk flat-footed
  • Keep your hands out of your pockets; your arms can be used to help keep your balance
  • If you do fall, try landing on your side or bottom and don’t brace your fall with your knees, wrists, or neck; relax your muscles as you fall to reduce injury

And if you’re planning on going on frozen water, please stay safe and understand the conditions of the ice.  The DNR has great tips on what to consider if you’re headed out on the lakes.

Minnesota Department of Natural Resources

Check out these links on other winter driving and safety tips:

MN Department of Transportation

Minnesota Safety Council

MN Department of Homeland Security and Emergency Management

Gavin Pierson to ‘Lead the Team’

Gavin Pierson, 7, and his neurosurgeon, Dr. Joseph Petronio

In April 2012, Gavin Pierson was diagnosed with a brain tumor that he has since nicknamed Joe Bully.

Gavin, 7, has undergone chemo therapy, numerous craniotomies and, most recently, MRI-guided laser surgery to help obliterate the tumor. He also takes numerous drugs, and he is the only child in the country to receive the clinical trial drug, Palbociclib.

He’s in the second grade and loves math. In his spare time, he plays games, watches movies and visits with his family and friends. Before he was diagnosed, he was a gymnast and played T-ball. And, until his recent surgery, he ran and played football. With the help of his care team and loved ones, he’s trying to return to those fun activities.

“Gavin’s nemesis is Joe Bully. He bravely goes into procedures, scans, and surgeries knowing it is part of the fight,” said his mom, Nicole Pierson. “Superheroes have to look fear in the face and overcome it despite the difficulties that arise. Gavin’s journey has not been without complications. Yet every time a new roadblock comes up, he knocks it down. He tells us every day, ‘I will never give up the fight, and I will win.’”

We welcome Gavin and his family as he leads the Vikings onto the field before their Sunday match-up against the Detroit Lions.

Gavin Leads The Vikings Onto The Field   Gavin With Viktor the Viking   Gavin Hi-Fives Viktor the Viking

Five Question Friday: Jennifer Lissick

Jenniefer Lissick - Five Question Friday

Jenniefer Lissick

Meet Jennifer Lissick, a member of our pharmacy team!

How long have you worked at Children’s?  I started at Children’s in 2010 as a pharmacy resident and then was hired on as a staff pharmacist in 2011.

Describe your work at Children’s. I recently started a new position as the pharmacist for the Hemophilia Treatment Center.  My role is still evolving but in general I monitor and manage treatment for patients with bleeding or clotting disorders as part of the multidisciplinary team in the clinic.  

Why did you become a pharmacist?I have always liked math and science.  I wanted to be part of the health care team and work with patients as well as other providers.  I also find it fascinating to understand how drugs work in the body to improve disease states and promote wellness.

What do you love most about your job?  Working with kids and the wonderful community of coworkers that strive to improve care for each patient everyday.

How do you spend your time outside of work? I like to enjoy the outdoors, travel to warm places, cheer on Minnesota sports teams and spend quality time with my friends and family.  The last  five and a half months have been pretty busy as my husband and I had our first child, so most of my free time is spent with my adorable baby girl Whitney these days.

Mexican Hot Chocolate

This spiced Mexican-style hot chocolate is so easy to make at home, and a thousand times more delicious than pre-packaged Swiss Miss. There’s nothing better than a mug of hot chocolate during the holidays – it’s decadent, rich, comfort in a cup that warms you up from the inside out. You can serve this wintery beverage on its own, or top it with marshmallows or whipped cream. – Andrew Zimmern

Photo by Madeleine Hill

Ingredient list

  • 10 ounces semisweet chocolate, chopped fine
  • 2 teaspoons ground cinnamon
  • 1/2 teaspoon natural almond extract
  • 1/2 vanilla bean, split
  • 1 pinch nutmeg
  • 1 pinch allspice
  • 1 quart milk

Instructions

Total Time: 15 minutes
Servings: Roughly 4 cups

Bring milk to a simmer in a large saucepan over medium low heat.

Whisk in the remaining ingredients until chocolate is melted and milk is frothy.

 

Katie’s story: Kindness can be its own special medicine

By Veronica Stoltz

If you‘ve ever stood by your child’s bedside hoping and praying that he or she will recover, you may have made a few bargains with “The Universe.”  Mine included a vow to pay close attention to the kindness extended to our family during my daughter’s lengthy hospitalization and a pledge to find ways to personally give back. 

My daughter, Katie, was born 15 weeks prematurely, weighing just 1 pound. She was incredibly fragile and her condition was precarious. She was ventilator dependent and developed a blood stream infection. At one point, a doctor warned us, her condition “could quickly become incompatible with life.”

Gratefully, Katie was no more ready to leave this life, than we were ready to part with her. She fought hard and overcame a host of complications. These included bronchopulmonary dysplasia, pulmonary hypertension and chronic lung disease. She also required laser eye surgery for severe retinopathy of prematurity. She needed 21 blood transfusions and was given paralytics with sedation to prevent her from using her precious energy for anything other than sustaining life.

But thanks to the attentive and expert care she received at Children’s Hospitals and Clinics of Minnesota, she became stronger each and every day of her 99-day hospitalization. And when she weighed just a whiff over 5 pounds, she was able to come home to our grateful family on Easter Sunday in 2009.

Now, four-and-a-half years later, Katie is a perfectly healthy little girl. She loves all things pink, “Hello Kitty,” and sparkly—and finding all three at once is nirvana! She loves to run, do somersaults, and work on her cartwheel techniques on the sidelines of her big brothers’ football games.

This fall, she will start kindergarten.  She will learn that the letter “X” is for X-ray, and be able to show her class one of her own. She will have an atypical baby picture to put on her “All about Me” poster, and she may bring some interesting hospital stuff for show-and-tell. But she will speak of all of these things in the past tense. Because Children’s helped her conquer challenges and realize her potential.  So now she can focus on more important things….like glitter and finger paint.

During the time when I truly didn’t know if my daughter was going to live or die, I felt like a live electrical wire which had been stripped of all of its insulation. I was ultra-sensitive to everything around me.  I was easily confused, worried, and overwhelmed. But I was also easily touched, amazed, and deeply moved.

Put very simply, I was extremely vulnerable. Most patients and their families are.

That’s why little things make such a big difference.

We are so grateful that our child and our family were not just “treated” at Children’s but “lovingly cared for.” There’s a big difference.

That’s why we’ve found ways to personally give back, and it has been one of the greatest experiences of our lives. It has strengthened and unified our family tremendously.

Giving back has helped us feel like we didn’t just go through a difficult medical experience, but that we allowed that experience to pass through us; transforming who we are and the value we now place on the things that matter most: love, family, life, and health.

Hardship is a great clarifier. So is service.

Compassion is contagious. It is the only thing Children’s infection control efforts can’t touch. Once you have felt its impact, you are smitten. You know that the smile you helped to bring to a child’s face is part of what is helping him or her to feel empowered to heal, and you want to be part of that anyway you can.

I give to Children’s partially because of my immense gratitude for Katie’s presence in our family, and partially because I know first-hand that “kindness” is its own kind of special medicine.

 

Katie is just one of the many fighters that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Katie. 

Can Christmas trees cause an allergic reaction?

Dr. Molly Martyn

By Molly Martyn, MD

While the sight and smell of a live Christmas tree is part of the holiday season for many, trees can also trigger allergies.  Common symptoms include sneezing, sniffling, itchy nose and eyes, and dry cough.

Pine, fir, and spruce allergies are relatively uncommon, but do exist.  More frequently, people react to the dust and mold that live Christmas trees carry.

For children with pine/fir or mold allergies, a live indoor Christmas tree is not a good option.  Instead, families may choose to decorate an outdoor tree or to buy an artificial Christmas tree.

Artificial trees should be wiped down with a damp cloth prior to use as they can accumulate dust and mold during storage.  If your family decorates a live tree, give it a good shake outdoors prior to bringing it into your home to help dislodge dust and mold spores (some tree lots will do this for you).  In drier climates, trees can be hosed down and allowed to dry prior to bringing them indoors, something harder to do in cold, snowy Minnesota.

If you are concerned that your child is experiencing allergy symptoms related to a Christmas tree, talk to their primary care provider. They can help discuss next steps in diagnosis and management.

For more information about winter and holiday-related allergies, the American Academy of Asthma, Allergy, and Immunology is a great resource.

Recipe: Grandma’s meatloaf

If you’re on the fence about meatloaf, this recipe will certainly change your mind. With three different ground meats and a salty, smoky touch of bacon, this recipe has a rich, complex flavor profile that’s hard to beat. The whole family will love this hearty meal, and the delicious meatloaf sandwich leftovers you’ll be serving the rest of the week. — Andrew Zimmern

Photo by Madeleine Hill

Ingredient list

  • 1 pound ground beef
  • 1 pound ground veal
  • 1 pound ground pork
  • 1 tablespoon butter
  • 1 large onion minced
  • 3 ribs minced celery
  • 8 ounces frozen spinach, blanched and drained very well
  • 2 pinches nutmeg
  • 1 cup chopped tomato
  • 2 cups bread crumbs
  • 1/4 cup milk
  • 2 eggs beaten
  • 1 tablespoon salt
  • 4 tablespoons tomato paste
  • 2 slices bacon

Instructions

Total Time: 2 hrs 45 min
Servings: 6 to 8

Preheat the oven to 300 degrees.

Place the butter in a large sauté pan over high heat.

Add the onion, spinach, celery, nutmeg and tomato and cook until soft and glassy and all liquids are evaporated.

In a large mixing bowl, combine all of the sautéed veggies with the milk, bread crumbs, eggs, nutmeg and ground meats.

Mix well and season with the salt and freshly ground black pepper.

Place one whole slice of bacon in a large rectangular loaf pan (a 5-by-10 inch loaf pan works well).

Add the meats all in one motion, making sure to create a rounded, smooth top.

Spread tomato paste over the top. Place second piece of bacon over the paste.

Put the loaf pan into a 300-degree oven for 2 hours.

Remove the meatloaf and let cool for 15 minutes before slicing and serving.

Why our experience with influenza has made getting vaccinated a priority

Guest post by Samara Postuma

I’d always been a little indifferent toward flu shots. Of course, when I was pregnant I got vaccinated and always made sure my kids got vaccinated. But, it was “when we get to the clinic, we’ll get it done” versus “we really need to get the vaccine” sort of attitude.

That is until this past winter. On New Year’s Day, my sweet little 4-year-old spiked a fever and started on a downhill health spiral, and I realized the flu shot was a lot more important than I’d ever imagined.

After a late night with friends celebrating the new year, my daughter Evelyn was tired, lethargic and feverish. We thought nothing of it seeing as she’d been up so late, eating treats and having fun. She fell asleep several times throughout the day, which was extremely out of the norm for her. She had a cold but let’s be honest, when don’t preschool aged kids have some signs of a cold going on. 

That night, her fever reached 103 degrees and because that was higher than what a typical fever for her, I had a feeling we’d be visiting the doctor soon. The next day, we arrived at the pediatrician’s office with a fever of 104, along with many other post-holiday sick families. After running through her symptoms and checking her out, her doctor tested for influenza.

“Well, what do you mean? She had the flu shot.” I remember asking. And that’s when I learned that even if you get immunized, it’s still possible to get the flu. However, it may not be as bad as it would have been without the immunization.

Did you know that according to the Centers for Disease Control and Prevention there are many different influenza viruses that circulate each year? The flu shot protects against the three or four viruses that research suggests will be most common. I can’t imagine being involved in that kind of research and how hard it would be to predict what the varying strains may be.

Unfortunately, there are still cases where people get infected despite being vaccinated and Evelyn was likely one of them as she was diagnosed with Influenza B.

She spent the next several days very, very sick. At times, her fever spiked to 105 even on the Tamiflu prescription she was given, in addition to alternating ibuprofen and acetaminophen. She slept on the couch for days on end, and we pumped her full of fluids and tried to get her to eat anything fearing dehydration. It was a very scary time not knowing if her fever would continue to climb, especially during the evenings. She ended up missing over a week of her preschool.

In our case, catching her symptoms somewhat early and starting a prescription of Tamiflu, in addition to being vaccinated, helped what could have been an even more serious illness and higher fever, which was scary enough.

This year, getting vaccinated was on top of our fall checklist. Even though Evelyn became ill last winter, knowing and having watched her fight i, I would never want to risk having our family unprotected when there’s something available to help prevent influenza.

Samara Postuma is a freelance writer. Her five kids range in age from 7 months to almost 15. When she is not busy driving kids to school and activities, taking care of baby or teaching her second grader, she writes and works in social media. She blogs athttp://simplicityinthesuburbs.com. She can also be found on Twitter.

Gavin’s story: An epic battle against Joe Bully

Gavin is just one of the many brave kids that Children’s is proud to care for each year, and we couldn’t do it without your support. Your donation helps us provide Minnesota’s kids with some of the best medical care in the world. From surgeries big and small, to cancer care, to innovative pain management techniques, nobody treats kids like we do. Thank you for your support today, and helping kids just like Gavin. Scroll to the bottom to watch an interview with the Piersons.

If you’ve ever wanted to meet a superhero, look no further than Gavin Pierson.

For the past year and a half, Gavin has been in the fight of and for his life, taking on a brain tumor that he nicknamed Joe Bully. 

In his latest battle, Gavin, 7, was the first person in the country with a mature teratoma to undergo Visualase MRI-guided surgery to incinerate his tumor. The surgery represented the most significant development in Gavin’s case. For the first time, his neurosurgeon, Dr. Joseph Petronio, discovered that Joe Bully had a weak spot. But the victory felt short lived. Gavin recently went home after spending about two weeks at Children’s for a blood clot in his brain unrelated to the surgery.

“Gavin’s nemesis is Joe Bully. He bravely goes into procedures, scans, and surgeries knowing it is part of the fight,” said his mom, Nicole Pierson. “Superheroes have to look fear in the face and overcome it despite the difficulties that arise. Gavin’s journey has not been without complications. Yet every time a new roadblock comes up, he knocks it down. He tells us every day, ‘I will never give up the fight, and I will win.’”

A villain is born

His epic battle began at a birthday party.

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 Pierson family

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. And, the MRI-guided laser surgery in October helped 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, allowed precise targeting and was minimally invasive. Two days after the surgery, Gavin was back home trick-or-treating with his brother and sister.

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.”

Read a recap of his surgery.