Category Archives: Patient Stories

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.

 

Noelle’s story: Overcoming a food allergy scare, one year later

 

Ask Noelle Dilley for her favorite song, and she’ll tell you it’s “The Climb.” It’s a song about struggle and overcoming. About never giving up in the face of adversity.

Noelle knows an uphill battle. A year ago, she experienced her own when she suffered a major allergic reaction and walked the line between life and death.

She was at a church picnic when the 11-year-old licked the frosting of a safe-looking cupcake. But it contained peanut butter – the one ingredient she can’t have. She’s severely allergic. Just one lick landed Noelle at Children’s Hospitals and Clinics of Minnesota where she spent 31 harrowing days fighting for her life. She ultimately recovered, thanks to the excellent care she received, a community of staff, friends and family who never left her side and the power of prayer.

“She is a miracle,” said her mom, Renae Zaeska.

Noelle went into cardiac arrest and CPR was performed. Her heart started pumping again, but her lungs were so inflamed and full of mucous that she was unable to use them. During her first night, her lungs moved less air than a premature baby’s would. She was ultimately put on ECMO (extracorporeal membrane oxygenation), a technique that provides cardiac and lung support to patients whose heart and lungs are severely distressed.

She underwent surgery, endured numerous procedures including a bronchoscopy and was tested time and time again as she recovered.

But, recover she did. After a month in the hospital, she went home, where she continued physical, occupational and speech therapy. Within months, Noelle was playing basketball again.

While she continues to go to therapy for neurological damage – she has short-term memory loss – she is almost 100 percent recovered.

“She progressed so fast,” said her dad, Dewy Zaeska.

Noelle returned home to a school and community that have taken several measures to help her avoid another allergic reaction.  She eats at a peanut-free table and has her own computer at school. Her classroom is wiped down every day. Her school has also implemented a grab-and-go plan should the unthinkable happen.

Earlier this month, the president signed a bill that offers a financial incentive to states if schools stockpile epinephrine, considered the first-line treatment those with severe allergies.

Noelle’s parents have taken measures of their own. Last year, they avoided family gatherings during the holidays, unwilling to take any risks around food. They seldom go to restaurants. Noelle also takes Xolair, a treatment to reduce the sensitivity to allergens, every two weeks.

Though Noelle may seem back to normal, her family will never recover from the scare.

 “They told us you will probably never get over this, and I see why,” Dewy said.

When Renae has a bad day, she goes home and immediately hugs her daughter.

Noelle created a photo journal from her hospitalization to help understand what happened to her. While she was sedated most of the time at Children’s, she remembers aspects, some more vividly than others. She worked closely with a music therapist while she regained strength and would like to become a music therapist one day.

The family continues to make the 90-minute trek to Children’s for follow-up care. Every time, they want to thank Noelle’s team of doctors.

“How we feel about that whole system…it’s out of this world,” Renae said. “It’s an A+ team.”

Read the original story we published last year about Noelle.

Noelle 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 Noelle.

Trevor Eder-Zdechlik to ‘Lead the Team’ at Vikings game

Just a month ago, 14-year-old Trevor Eder-Zdechlik was diagnosed with chronic myelogenous leukemia (CML). It’s a cancer of the bone marrow and blood. While it’s rare for kids to have CML, there are some effective oral chemotherapy options available, and his treatment plan is already underway, his parents said. The hope is that Trevor responds well and can avoid future procedures such as a bone marrow transplant.

“The reality is that there is no cure, and he’ll likely have to remain on these drugs for the rest of his life. Trevor’s positive attitude about beating CML is an inspiration to all of us,” his parents said.

Trevor plays football, basketball and baseball. When he’s not playing sports, he’s watching them. He is also an honor student.

We welcome Trevor and his family as he leads the Vikings onto the field before their match-up Thursday evening against the Washington Redskins.

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.”

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!

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.

The road to a cystic fibrosis diagnosis for Kyra

By Amy Schwanz

My daughter, Kyra, was diagnosed with cystic fibrosis (CF) in September 2004 when she was 3 months old. She was diagnosed through a sweat test done at Children’s Hospitals and Clinics of Minnesota in St. Paul. It was Kyra’s “failure to thrive” that prompted the sweat test. Since other possible causes of her inability to gain weight were ruled out, it was the natural next step/test. After Kyra’s pediatrician gave Mark and me the test results and diagnosis, he comforted us, explained the disease at a high level, and informed us that we were fortunate to live near two excellent CF Care Centers. He also immediately scheduled an appointment for Kyra at Children’s Respiratory and Critical Care Specialists (one of those two excellent care centers).

Mark, Kyra and I met Cindy Brady and Sandy Landvik at Children’s Respiratory and Critical Care Specialists (CRCCS) the morning after Kyra’s sweat test and diagnosis. That first visit, Mark and I were educated about CF, and Kyra had a physical exam. Specifically, Cindy explained the genetics behind the disease and how CF impacts different areas of the body. This helped us understand how the disease resulted in Kyra’s failure to thrive. At that first visit, we were given the option of having Kyra be an inpatient at Children’s in Minneapolis for a few days for testing and education, or for Kyra to continue as an outpatient, which meant we would come back to the clinic/hospital every few days for testing and education, spread out over a few weeks. Since we had another young daughter at home, we elected for the outpatient option. We brought Kyra to CRCCS quite frequently. At first it was every few days and then the time between visits extended as Kyra became healthier, with the visits happening weekly, and, finally, monthly. Although this happened nine years ago, I can still recall how patient, comforting, and reassuring the entire CRCCS staff was with us during those first visits. It was a very difficult time for us, but it would have been much worse without the support and care of the CRCCS staff.

Following the treatment plan prescribed by CRCCS, Kyra VERY rapidly gained weight and finally looked like a healthy baby with pink chubby cheeks. She also didn’t cry as often, slept better, and became a much happier baby. This change literally happened in days; it was amazing!  Over the course of the first few months, Kyra had several diagnostic tests done (chest X-ray, blood work, etc.) to determine her health status. Although these tests were important, more vital was for Mark and I to learn how to care for Kyra. It is not easy to care for a child with CF and it takes a lot of time to learn it all.  We learned the how and why of everything we did for Kyra – from pancreatic enzyme replacements to bronchial drainage techniques. We also worked with all of the CF care team members associated with Children’s to get the specific information about respiratory care, nutrition, etc.

Over the past nine years, our family has fallen into the routine of life with CF. Kyra has certainly had some ups and downs, as is to be expected with a chronic life-limiting illness. But, for the most part she has remained very healthy, and Mark and I are successfully managing the many challenges–medications, respiratory treatments, clinic visits, school health plans, travel considerations and medical bills. Kyra continues to have appointments four times per year at CRCCS, with one of those being her “CF annual visit” where we meet with the entire CF care team. Over our many visits to the clinic and Kyra’s one inpatient procedure (sinus surgery) in 2009, we have become very familiar with Children’s and CRCCS. I cannot say that every interaction at the hospital and clinic over the years has been perfect, but I can say that from the office staff, to surgical staff, and certainly to our great CF care team, I am frequently impressed with the level of care Kyra receives. The CF care team works closely with us to do what’s best for Kyra.

In 2004 when Kyra was born, CF newborn screening was not being done in Minnesota. On one hand, I wish that Kyra would have had the screening and been diagnosed at birth so that she would not have had such a rough start to her life. However, on the other hand, while Kyra’s diagnosis was devastating, it was also somewhat of a relief for us— to finally determine what was causing her inability to gain weight and to be able to “fix” the problem and see an improvement in her health. I think of the parents whose newborns are diagnosed, they must not have that sense of relief that we did and I think that would make the diagnosis more difficult. But, those parents also do not have to go through the first few months of their child’s life wondering why they won’t gain weight and they can get started on treatments right away, improving their outcome. I empathize with parents whose children are diagnosed with CF – at birth or later in life –because no matter when the child is diagnosed, it is a devastating diagnosis. It is a challenging road they will travel. Fortunately, with Children’s CF care team, they will, like us, have an excellent medical support system to help us along that road.

 

 

 

A lifetime of love for baby Nora

By David Hlavac

My wife and I are now members of that exclusive club that nobody wants to join: Parents who have lost a child. But through our grief, the staff at Children’s neonatal intensive care unit (NICU) made a terrible experience a little bit less unbearable by focusing first on the comfort of our newborn daughter, then on our family’s emotional health and well-being.

At 30 weeks gestation, we realized there might be some issues with our daughter — there were “soft markers” for some sort of genetic anomaly, but without further tests we couldn’t be certain about her prognosis.

At 35 weeks, we had a scheduled c-section delivery and our daughter, Eleanor Theresa, was born. She weighed just over 3 pounds. After I cut the cord, I heard a faint cry, then silence. The doctors whisked our daughter to an adjoining exam room, and when the nurse opened the door to say, “We need the father.” That was when I realized this story wouldn’t have a happy ending. In my mind, I remember thinking,” Please let her live — please let it be Down Syndrome or something…anything that isn’t a death sentence.” But when the neonatologist said he suspected our daughter had Trisomy 18, I knew we would be saying our goodbyes to Baby Nora very soon.

Once I broke the news to my wife, who was still on the operating table, I sat down with a neonatal nurse who explained a few possible scenarios to me. She did not sugar-coat things, but she was warm and understanding — a perfect balance that (in hindsight) probably prevented me from a rollercoaster ride of emotions.  It is hard to reconcile the joy you feel as a new parent with the grief of knowing your child is not going to survive, but our nurse emphasized how lucky we were that our daughter was born alive, and how we should make the most of our time with her. So while my wife recovered from her surgery, I camped out in the NICU and crammed a lifetime of love into my daughter’s brief life.

The NICU nurses didn’t look upon me with pity, and they didn’t question me when I asked to hold my daughter. They simply told me they were there to help however they could. Despite being on a ventilator, they gently moved Nora out of her isolette and placed her in my arms. I rocked her and sang to her, holding her tiny body skin-to-skin the way I had done with my surviving children when they were first born. It gave me the fleeting feeling that everything was normal and just for a moment, I simply felt like a proud dad again.

Before it came time to take her off the ventilator, the nurses prepared an array of keepsakes for u– plaster-cast footprints, a lock of hair and a photo session with Now I Lay Me Down To Sleep. They connected us with a social worker who helped prepare us for the overwhelming grief that was welling up inside our hearts. They encouraged us to bring our families — including our surviving children — to the NICU so they could all meet Nora. Each of these activities are now etched in our memories as milestones in our daughter’s short life, and we are so grateful for the entire NICU staff at Children’s for making those remembrances possible and giving us an honest, non-judgmental and compassionate experience. Despite our grief, we will always remember the care the nurses, doctors and social workers at Children’s Hospitals and Clinics of Minnesota showed for our family. Just as we will never forget Nora, we will never forget their love and respect.

This post was originally published via Share Your Story. Do you have a story, too? Upload it here.

Jeffrey Steffensen to ‘Lead The Team’ at Vikings game

Jeffrey Steffensen

As the proud sponsor of the Mini Vikings Kids Club, at each home Vikings game, a Children’s Hospitals and Clinics of Minnesota patient “Leads The Team.” This week, sixth-grader Jeffrey Steffensen is leading the team onto the field before the Vikings face-off with the Cleveland Browns.

Jeffrey was diagnosed with Crohn’s disease when he was 6 years old and has battled pneumonia 23 times. His claim to fame? He once conned a nurse into thinking he only drank flavored water.

He’s the youngest of five children and is the “trooper” in the family. He loves listening to music, playing on his X-Box, fishing and drawing. His favorite Viking is running back Adrian Peterson.

We welcome Jeffrey and his family to this week’s “Lead The Team” event.