Archive for the ‘Patient Stories’ Category

« Older Entries
Newer Entries »

Former Children’s patient lands dream job, gives back

Monday, December 10th, 2012

By Andrew McIlree

Christina Ledin is more than a talented young professional establishing her career. The 26- year-old woman has already discovered her capacity to live with purpose and to help others through one of her earliest childhood experiences – as a cancer survivor at Children’s Hospitals and Clinics of Minnesota.

Ledin recalls getting repeatedly sick to her stomach just before her second birthday. Her skin turned yellow, and she wouldn’t eat. Her pediatrician sent her to Children’s, where doctors discovered a Wilms’ tumor, the size of a grapefruit, on her left kidney. Treatment began immediately.

In her memory, the healing journey at Children’s wasn’t as scary as it could have been, thanks to the skills and personalities of the Cancer and Blood Disorders team, Ledin said, noting that Dr. Bruce Bostrom had a Cookie Monster doll in his office that she enjoyed. Her parents, too, appreciated the dedication of her doctors and nurses.

“My dad would see Dr. Margaret Heisel Kurth in my room, going over paperwork at 11:30 at night,” Ledin said. “And then he would see her in that same spot in the early morning. The team never stopped taking care of their patients.”

With the help of surgery and chemotherapy, her tumor was gone, Ledin said. She’s been in remission ever since. She’s proud and grateful for surviving such an ordeal at an early age, and she was able to live a normal childhood in Plymouth, Minn. Ledin later went on to earn a bachelor’s degree in health care management at Concordia College in Moorhead, Minn.

Now her life has come full circle.

“Where I wanted to work my whole life was at Children’s,” she said. “But I never thought I’d be lucky enough to work for Children’s Foundation right out of college.”

Ledin, already employed at her dream job, went a giant leap further by making an estate gift to Children’s in early 2012. The Richard, Pamela, Katherine, and Christina Ledin Family Endowment will support the Cancer and Blood Disorders program at Children’s by providing it money and resources for years to come.

“Children’s saved my life, and we as a patient family were helped in different ways,” she said. “That level of care is due to people’s generosity, and I don’t have to wait until I’m older to think about making a difference for other families.”

As Ledin credits her healing journey at Children’s for playing a strong role in the formation of her life’s passions and values, the young woman often finds herself reflecting on moments as a child spent with her Cancer and Blood Disorders care team.

“The one thing I miss the most about my Dr. Heisel Kurth checkup visits,” she said, “is her cleaning my ears.”

 

Posted in Foundation, Patient Stories | 1 Comment »

Will’s story: Back from the bench

Wednesday, November 21st, 2012

When Will Cohen learned he had a benign tumor on his lower spine last January, the 15-year-old was more concerned about missing his basketball season than having to undergo a three-and-a-half hour surgery to remove the mass.

Playing sports was everything to him.

But Cohen – a three-sport athlete and freshman at the time – thought if he applied his same hard-working, can-do attitude on the basketball court to his new diagnosis and his surgery, he wouldn’t be benched for long.

“I learned that you must think positively. When I thought positively, I felt more positive results would come,” he said. “Thinking negatively doesn’t do you any good at all. It just makes you sadder about what happened.”

Time-out

When Will started feeling pain in his lower back, hips and legs, he thought he was having growing pains. So did the adults around him. He stayed active and continued playing sports, kept up with his daily routine and attended school.

But, the pain got worse. Much worse. Will couldn’t sleep. He couldn’t ride in a car without experiencing jolting pain.

“I gotta do something about this. Something is not right,” he thought. “It’s not just growing pains.”

His gut was right. Will had an MRI and within two hours of his test, his parents got the kind of call every parent dreads from his doctor. The MRI showed a mass.

“His doctor knew she was looking at something that was not normal,” said Bob Cohen, Will’s dad. “It was about the worst moment.”

The family huddled in Will’s parents’ room, where they told him about the tumor.

“We knew he had a tumor, but we didn’t know what kind. It was a shock,” Bob said.

Will, however, remained calm, he says. “I just faced (the news),” he said.

Within hours, Will and his parents were at Children’s Hospitals and Clinics of Minnesota, where they met with Will’s surgeon, Dr. Mahmoud Nagib. He put his hand on Will and looked at the family, Bob said. He had good news for the family: The tumor was benign, but it needed to be removed.

“That was obviously a big relief, but we knew at the same time we were in for quite a road,” Bob said.

That night, life continued as normally as it could for the Cohen family. They attended a Timberwolves game as planned.

Days later, Will played his first and last basketball game of the season before surgery.

The final score

After eight days in the hospital, Will went home. He missed six weeks of school while he recovered and rehabilitated. Through hard work and dedication, Will was still able to earn the Outstanding Academic Achievement award at Hopkins North Junior High School.

Determined to play sports as soon as possible, Will spent three to four days a week working with a therapist at Lifetime Fitness to re-gain his strength and mobility. He lifted weights and ran on the treadmill when his doctor cleared him.

“I just kept thinking about basketball and soccer and Ultimate Frisbee, and that’s all I wanted to do,” he said. “I knew I’d have to work hard to get my speed and stamina back.”

By May, Will was cleared to play competitive Ultimate Frisbee. When he came home after a game with bloodied arms from diving for disks, it was a proud moment for Bob.

Will was back – and better than ever.

“I felt like I could jump higher and run faster. I felt I got more athletic after my surgery,” Will said.

It’s been almost a year since Will’s surgery, and his determination has carried him further than he first imagined it could.  Not only was Will one of only four sophomores to be selected for the varsity Ultimate Frisbee team, he was also elected by his soccer teammates to be a co-captain of the 10th-grade team.

His full recovery didn’t surprise Hopkins High School Ultimate Frisbee head coach Erin Mirocha.

“He’s patient and disciplined, and he’d rather make the right decision than force something to happen (in the game),” she said.

Says his dad, “He’s more mentally strong and determined than I ever thought any kid or most adults could be.”

Will is a first-year member of Children’s Youth Advisory Council

Posted in Patient Stories | 1 Comment »

The Windschitl preemies: ‘Ours for the lovin’

Thursday, November 15th, 2012

By Sara and Nick Windschitl

Sara and Nick are the new parents of twins Bryn and Nora, who were born at 27 weeks.

When we heard that November was Prematurity Awareness Month, we thought, “Wow—people need a month to be aware of prematurity?” People who don’t have preemies probably never think about prematurity (unless they had a preemie Cabbage Patch doll like I did when I was 5), and people who do never STOP thinking about preemies. I know Sara and I haven’t! In June, the two of us wrapped up our school years. I said goodbye to my kindergartners, Sara said goodbye to her third-graders, and we jumped excitedly into a summer of Expecting Twins.

Sara prepared herself for getting huge, I started putting cribs together and we oscillated between excitement, disbelief and freak-out moments. At our 19-week ultrasound, we learned that Sara’s body might not want to hold these babies in as long as they needed to fully cook, and at 22 weeks she was sentenced to Hospitalized Bed Rest—her greatest pregnancy fear.

Five weeks later, the babes had had enough and decided to grace us with their tiny presences at 27 weeks. If you know anything about preemies, you know that 28 weeks is kind of the “safety zone” when it comes to avoiding a laundry list of long-term health issues, but despite Sara’s attempt to keep her legs crossed as tight as she could, the girls chose Aug. 6 as their birthday.

It was scary for us to know we had 27-weekers. Bryn weighed 1 pound, 4 ounces, and Nora weighed 2 pounds. But they were breathing on their own just a few short hours after birth and showing us their fighting spirits. This, along with the prayers being poured out from our friends and family (and strangers!), gave us an overwhelming sense of peace and calm. We also knew that at Children’s Hospitals and Clinics of Minnesota, we were in one of the best places in the world for preemies (yeah, we Googled that, too). The doctors and nurses that we encountered at Children’s were incredible. Each had skills that very few people in the world possess—the ability to not only care for these micro babies but also to work with parents who are scared yet extremely protective of the little lives they created.

Fast forward a month, and the girls were ready to move into the Infant Care Center at Children’s, where we continued to receive great individualized care. They moved into a class of “feeders and growers” with minor hiccups here and there—breathing issues, a hernia surgery, feeding struggles. There were days we just wanted to stick them in our pockets and make a run for it, get them home and start our new normal. After three months in the hospital, all we wanted was to tuck our girls in ourselves and read them a bedtime story without the constant background music of the monitors or to make farting noises on their bellies without wires getting in the way. That’s what every dad wants to do, right?

(As we write this, we are going on Day 98 in the hospital and are preparing to bring our girls home the following day!) What we’ve waited for so long now seems like the most daunting and scary thing we could ever do. We are keenly aware of our blessings these last 98 days, as having 27-week-old twins could have had a lot more downs than ups, but here we are, ready to bring home a 5 ½ pound baby and a 7 ½ pound baby—both healthy and ready to keep their parents from ever sleeping again!

Fast forward another 24 hours and these beautiful girls are home, where Sara and I are doing the normal parenting things, like checking to make sure they are breathing at 3:31 am.  Yep, these girls are healthy!  They are no longer those little translucent red nugget preemies that blessed this world in August.  They are real, wireless, peeing, pooping, crying, smiling, wide-eyed (only at 3:31 in the morning) babies.  Yes, we still need to be very cautious with these girls.  No, we won’t be taking them to the store.  We won’t be able to have many visitors.  We will be hand-washing and “foaming in” so frequently that a person outside of Preemie Land would say, “You MUST be OCD.”  I guess Children’s did one heck of a job on us because, as all parents of preemies know, we need to be!

Just like Sara’s pregnancy, the future is scary and unknown, but thanks to Children’s, we have babies who are breathing, growing and finally ours for the lovin’.

 

 

Posted in NICU, Patient Stories | 9 Comments »

Alannah: A girl with heart

Tuesday, October 9th, 2012

Alannah Gillis Photo: Shari Fleming

God doesn’t give me more than I can handle.

That’s what 7-year-old Alannah Gillis said when she found out she had Stage IV neuroblastoma. And that’s what she had printed on custom rubber wristbands. Wristbands that she went on to sell in an effort to raise money for the Star Studio at Children’s Hospitals and Clinics of Minnesota. That act of kindness would prove to be the first of many for this amazing and generous young girl.

“I like to be nice,” Alannah said.

Through treatment, which has subsequently stripped Alannah’s head bald, prevented her from riding a bike because of low blood counts and kept her from enjoying first grade while she spends extended periods hospitalized, Alannah is thinking of others first.

“She is just beyond thoughtful. The word ‘thoughtful’ doesn’t even cover it,” said her mom, Angela Peterson.

A mother’s persistence

Alannah’s diagnosis didn’t come easily, or quickly.

At the end of the school year, she came home one day complaining about leg pain, Peterson said. Her eyes were ashen underneath. Instead of playing outdoors on the trampoline or riding her bike, she was inside using the family’s gaming system.

“It was like she never slept. She was always tired,” Peterson said. “This was not my child.”

Alannah dared The Dude from the Star Studio to bungee jump at the Minnesota State Fair. He accepted the challenge.

So began Peterson’s quest for answers. Alannah saw three different providers who had different diagnoses. None were cancer.

The first treated Alannah for a bladder infection. The second said she had anemia and recommended supplements and to return in six weeks to be re-tested.

Peterson wasn’t convinced. She took Alannah to a third provider and asked her – mom to mom – to figure out what was wrong. A series of blood tests indicated Alannah’s blood counts “were out of whack,” Peterson said.

They were told to go to Children’s – more than two hours away from their Wisconsin home – stat. After a series of tests, Peterson got the answer she needed but no mother wants for her daughter. She had cancer.

“Knowing is so much better than having questions,” Peterson said.

Alannah has retained her sense of humor through it all.

While Vicki Schaefers, Alannah’s nurse practitioner, talked with Peterson about the need for a blood transfusion, Alannah quipped, “You do know I am highly allergic to platelets!”

She has “intelligence that belies her age,” Schaefers said.

Acts of kindness

In the weeks since learning she has cancer, a community where many hadn’t heard the word neuroblastoma has rallied around Alannah, Peterson said.

On Sept. 22 – the day after Alannah’s seventh birthday – three casinos in her county raised approximately $98,000 to help pay for medical bills, a car for Peterson because she doesn’t have one, and a trip for Alannah’s family, Peterson said.

Approximately $20,000 will go to a county program for holiday gifts for children, Peterson said. Alannah insisted.

Alannah Gillis Photo: Shari Fleming

“Since her diagnosis, she has received more things than she could have imagined, but it has not changed her attitude toward others. She thinks of them first and foremost,” Schaefers said. “She is all about giving back, and this is only the beginning. She is an inspiration to all of us, and we will talk about her for years to come!”

A few days after the benefit, good news was in store for Alannah.

She returned to Children’s for a bone marrow biopsy and more chemo. During her stay, she got her biopsy results. Fifteen percent of Alannah’s cells were cancerous, down from 100 percent when she was diagnosed, Peterson said.

“The best news yet,” Peterson said.

Hours within getting the news, Alannah sat in her hospital bed awaiting more medicine. Her face was painted in shades of pink, purple, green and gold to resemble her favorite animal – a cat.

The warm, lovable, funny little girl got serious for a moment.

“I wish I knew why this happened,” she said.

No one knows, Peterson answered.

“It’s one thing when it’s happening to an adult who’s lived a long life; it’s another when it’s happening to a child who’s just beginning their life,” Peterson said.

That’s why they’ve agreed to participate in research that might help other kids and create better outcomes, Peterson said.

It’s yet another act of kindness.

“She has the biggest heart of any kid and adult I know,” Peterson said.

Posted in Cancer and Blood Disorders, Patient Stories | 16 Comments »

Noelle’s story: The danger of one bite

Friday, September 28th, 2012

Noelle Dilley

Noelle Dilley knew the moment she bit into what looked like a chocolate cupcake it was contaminated. Tears streamed down her face as she ran to her mom.

The cupcake had peanut butter in it. Noelle, 10, is severely allergic to peanuts.

She and her family were at a church picnic. The cupcake looked tempting. It would be for most 10-year-old kids. Who would have thought it contained the one ingredient Noelle can’t have.

Noelle was tested and diagnosed with a peanut allergy – among other allergies – when she was around 3 years old after suffering a reaction to a small amount of peanut butter, said her mom, Renae Zaeska. The Atwater, Minn., family was told that with every peanut exposure, the reaction would be worse than the previous one for Noelle.

When Noelle was 5, one bite of a Butterfinger turned into a helicopter ride and a five-day stay at St. Cloud Hospital.

This reaction would be worse, Zaeska thought.

Noelle’s mouth started to burn. He ears ached. Her stomach hurt. On this day – of all days – Zaeska didn’t have Noelle’s EpiPen.

She grabbed Noelle and sped to the emergency room at Meeker Memorial Hospital in Litchfield, Minn. By the time they got there, Noelle’s eyes had started to swell and she began to wheeze. The medical team used an EpiPen and steroids. But Noelle needed additional care.

For the second time in her life, she traveled in a helicopter. She was taken to Children’s Hospitals and Clinics of Minnesota where she spent 31 harrowing days.

At Children’s, Noelle went into cardiac arrest and CPR was performed. Her heart started pumping again, but her lungs were so inflamed and full of mucous she was unable to use them. 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 bronchoscopy and was tested time and time again as she recovered.

“After this whole accident, I’m terrified…I pray to God that we never have to go through this again,” Zaeska said. “I wish I could put a bubble around her.”

“For four minutes, she was gone,” she said.

Now, Noelle and her family – who were able to stay at the Ronald McDonald House inside Children’s during the hospitalization– are home, where they belong.

“In the PICU at Children’s, we all have been privileged to care for Noelle and adore her family.  To see her so desperately ill, knowing that her heart and lungs stopped working, to help rescue her from her critical illness, then to see her walk out of this hospital is indescribable. This is exactly why we embrace caring for children,” said Dr. Ken Maslonka, PICU medical director.

The fifth-grader has been home since Sept. 19. She’s working with a tutor at home and continuing physical, occupational and speech therapy before returning to school for half-days.

Noelle’s school has taken various precautions to help protect her and students with food allergies, Zaeska said.

School staff has eliminated peanuts and peanut products in the food served to children, Zaeska said. They’ve created a peanut-free zone for Noelle at lunch. They’ve also added a wash basin where kids can wash their hands before entering the classroom.

The school can’t limit what parents send with their kids, however, Zaeska said.

Noelle’s parents read labels, know which companies use peanuts in food process, and check out which restaurants are “safe” and take steps to prevent cross-contamination.

Their days of dining outside the home will be fewer since Noelle’s hospitalization.

“We’ve told Noelle that we won’t eat out like we used to,” Zaeska said.

According to the Food Allergy and Anaphylaxis Network (FAAN), nearly 6 million or 8 percent of children have food allergies. Peanuts are a top food allergen.

“The best advice for families with severe food allergies is: know to the best of your ability what your child is allergic to, always be prepared for an acute allergic reaction every moment of every day, do your best to keep your child in a safe environment away from the offending allergens at home, school, restaurants,” Maslonka said.

You can read more about Noelle on CaringBridge.

 

Posted in Allergies, Patient Stories, PICU | 6 Comments »

Racing for kids who can’t

Thursday, August 16th, 2012

Gunnar Nelson is one of Mitch's All-Stars

On Saturday, 1,200 kids ages 7 to 17 will test their athleticism and race for kids who can’t at the MiracleKids Triathlon at Lake Ann in Chanhassen, Minn.

It was just two weeks ago that friends and family of 9-year-old Gunnar Nelson, an oncology patient at Children’s Hospitals and Clinics of Minnesota, toed the same line at Lake Nokomis in an effort to raise money for families of cancer patients. The races, two of the largest kids triathlons in the world, are organized by the Miracles of Mitch Foundation (MOMF), and Gunnar is one of “Mitch’s All-Stars.”

MOMF was formed by Steve and Becky Chepokas in memory of their son Mitch, and grew from a “pinky swear” between Mitch and his dad to continue helping kids going through cancer treatment. Mitch was 9 when he lost his battle with cancer.  MOMF provides financial and quality-of-life support to hundreds of families of children being treated for cancer in Minnesota.

Gunnar was diagnosed with Acute Lymphoblastic Leukemia in March 2011. His diagnosis came after he woke up with intense hip pain, developed persistent fevers and experienced general achiness that worsened, said his mom, Kelly Nelson.

His brother, 11-year-old Ryley, and his cousin competed in the Lake Nokomis event and raised money in his honor, Nelson said.

“Seeing how ambitious some of the kids were to complete the event and raise large amounts of money shows me kids are really doing amazing things to help other kids,” Nelson said.

That’s what the MiracleKids Triathlon and the MOMF organization are all about. And it inspires us. We at Children’s are proud to be the annual medical partner for the Lake Nokomis event.

”The MiracleKids Triathlons, ‘kids racing for kids who can’t’, not only support children going through cancer treatment, but also promote healthy lifestyle choices for all children in the battle against obesity – a top priority of Children’s,” said Dr. Joanna Perkins, a physician in Children’s Cancer and Blood Disorders Clinic.

Since its beginning in 2004, the MOMF has served hundreds of children with cancer and their families, Perkins said.  Their financial grant enables families to make house payments, utility payments, and other expenses, when parents are unable to work due to their child’s illness. They also sponsor many quality-of-life programs, including our annual Mitch’s All-Star Camp.  Children’s partnership with MOMF is an integral piece of helping our kids with cancer and their families along their journey.

Gunnar is currently in the maintenance phase of cancer treatment, Nelson said. He’ll continue treatment through September 2013. He takes chemo nightly.

Of her family, she said, “We go through a lot, but there’s always someone who’s been through even more.”

Gunnar has been a champion from the start, she said. “We call him a warrior,” she said.

Thanks to MOMF, warriors like Gunnar and their siblings get to attend Mitch’s All-Star Camp at Camp Courage in Maple Lake, Minn. During the camp, medical professionals from Children’s provide medical care and lead educational programming for the kids.

“I am proud to be part of Children’s and because of Children’s connection with the Miracles of Mitch Foundation, our lives have been brightened in this dark journey,” Nelson said.

Posted in Cancer and Blood Disorders, Patient Stories | No Comments »

Family Advocacy Day: A Q&A with the Johnstons

Wednesday, August 1st, 2012

John, Nancy, Mike and Emma Johnston recently traveled to Washington, D.C., for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings children’s hospitals patients and their families to tell their stories to lawmakers on Capitol Hill. In 2011, Mike, a Children’s patient, was diagnosed with a cancerous Germinoma tumor.

Upon his family’s return from a whirlwind tour of our nation’s capital, John answered a few questions about his family’s experience participating in Family Advocacy Day.

Mike, Emma, John and Nancy met Sen. Al Franken during Family Advocacy Day.

Q: Why did you share your story on Capitol Hill?

A: We shared our story because it was important for our legislators to put a face with a budget line item.  Our family does not want any other child to suffer waiting to receive care. We as a nation can’t afford to balance our budget on the backs of children.

Q: Do you think your story caught lawmakers’ attention?

A: Our story was very compelling. We had to wait for Mike to see a specialist for several months before we were ultimately told to go to Children’s.  Every legislator we spoke with agreed that this was unacceptable.  It is important for them to see the human impact of budget changes or cuts.

Q: What kind of reception did you get from the Minnesota delegation?

A: The Minnesota delegation was wonderful.  The four specific legislators we met with were; Reps. Betty McCollum and Eric Paulsen and Sens. Al Franken and Amy Klobuchar.  They were all up on the issues and understood our dilemma as parents.  They all agreed that this is an extremely important issue, and they vowed to keep up the fight.  The staffers we met also gave us ample time to share our story.  Rep. Paulsen commented on the trading card Mike gave him, so it was very important to leave something behind with our lawmakers.

Q: In addition to taking in the incredible sights of Washington, D.C., did you take anything away from your experience?

A: For our family, it was amazing to see how our government actually works.  It is very inspiring to know that a single family can make a difference in public policy. We’re a family that gives back to our community and have already offered our services at the state level.  We must stand up for children since they are our future. We know all too well the importance of excellent, timely care.  With any cuts to these programs, lives can be at risk.  We met so many wonderful people at Family Advocacy Day and would strongly urge others to do the same.  Our lives have been forever changed in a very positive way because of the role we were able to play.

John blogged before his family traveled to Washington, D.C. To read that post, click here. 

Posted in Advocacy, Cancer and Blood Disorders, Patient Stories | No Comments »

A mom’s story: My baby’s delivery included a ‘high-speed footrace’

Monday, July 30th, 2012

This is a guest post by Veronica Stoltz, who delivered Katherine 15 weeks early at Abbott Northwestern Hospital. Katherine was taken via tunnel to Children’s Hospitals and Clinics of Minnesota, where she remained for 99 days. Today, Katherine is a healthy 3-year-old who has three big brothers at home.

Stoltz Family

I never expected my baby’s delivery to include a high-speed footrace under a major metropolitan thoroughfare just minutes after her birth. But that is exactly what happened following our daughter’s premature birth on the morning of Jan. 3, 2009.

Our daughter, Katherine, was still 15 weeks away from her due date when it was discovered that the amount of amniotic fluid surrounding her had become dangerously low. My care team decided that I should stay overnight at Abbott Northwestern Hospital for observation.

At about 2 a.m., I was situated in my hospital room with monitors and encouraged to get some rest. My husband went home to be with our other three children overnight. However, as soon as he returned home, he heard the phone ringing. With fear in my voice, I said, “I think you’d better come back. The doctors and nurses don’t like what they’re seeing.”

He made the 20-minute return trip to the hospital and arrived on the floor in a panic—but he was too late. The medical team had just delivered our daughter via emergency C-section in order to save her life. A nurse threw him a pair of scrubs and told him to join us in the delivery room.

At the time of her birth, our teeny, tiny daughter weighed 470 grams and was 11 inches long. She looked like a featherless bird that had fallen out of its nest. I was whisked away to a recovery room while tears streamed down my face as I lay helplessly still in the middle of the biggest tornado my little family had ever experienced.

Meanwhile, my husband went to be by our daughter’s side. He watched as the neonatal transfer team frantically worked to stabilize her enough to move her. Moving her to Children’s was the only way she would be able to continue to get the life-saving treatments she required.

Katherine Stoltz

A medical team of neonatal doctors and nurses ran alongside her isolette through a half-mile underground tunnel that connected Children’s and Abbott Northwestern and admitted her into Children’s Neonatal Intensive Care Unit (NICU).

My husband accompanied the team in his socks, trying to keep up and avoid tripping on his ill-fitting scrubs. He remained with my daughter as long as possible and tried to learn all he could about her condition and chances of survival before returning to Abbott Northwestern to check on me.

The two most important girls in his life were in separate hospitals – each with significant needs. He desperately wanted to be a comforting presence to each of us. He traveled the underground tunnel several times during the next few days until I was well enough to be discharged and join him full time at Children’s.

Thanks to The Mother Baby Center opening this winter, families who find themselves in situations similar to ours will no longer be separated from one another. Babies will be delivered just down the hall in a top-notch facility with a world-class neonatal team ready to care for them 24/7 if it’s needed.

We spent 99 days at Children’s before our daughter was well enough to be discharged and join her three big brothers at home. I am unabashedly proud of the fact that I was able to be by her side each and every day she was hospitalized. Even though I was unable to care for her in a traditional way, I knew she recognized and found comfort in my voice, my touch, my smell, and my presence.

Being able to do nothing more than hold her precious little hand through the small holes on the side of the isolette will always be one of the most sacred moments of my life. As she was clinging to life, it was imperative for her to know she had somebody who desperately loved her clinging right back.

Thank you, Children’s and Abbott Northwestern, for your innovative and incredible new partnership and facility. You are giving  families what they need the most in times of crisis…each other.

Learn more about The Mother Baby Center at http://www.TheMotherBabyCenter.org. You can also visit our Facebook page here.

Posted in Family Stories, Patient Stories, The Mother Baby Center | No Comments »

Family gives back with Bags of Smiles

Wednesday, July 25th, 2012

Editor’s note: In an earlier version of this post, Dr. Rustad’s first name was misstated. It is Dr. Dave Rustad. 

This is a guest post by Aric and Kristen Burma, parents of 2-year-old Zachary Burma, a patient at Children’s Hospitals and Clinics of Minnesota.

Zac Burma shows off his silly bands.

Just before Zac turned 1, he came down with a high fever that we initially thought was teething. But it didn’t go away. His pediatrician ordered an X-ray, which showed a spot on Zac’s lung. Worried he might have pneumonia, his doctor sent us to Children’s.

After taking antibiotics, Zac began feeling better. However, as we celebrated Zac’s first birthday, the spot remained. Zac underwent a CAT scan. Before we even pulled out of the parking lot after the test, we received a call from our pediatrician that we needed to return to Children’s to see an oncologist.

We returned and met Dr. Nancy McAllister, who delivered scary news that our perfect and healthy young son needed surgery to remove a tumor. She assured us that it was completely treatable.

Dr. Dave Rustad performed the surgery and removed the entire mass, which was a Stage I Neuroblastoma. Fortunately, no cancer cells had spread and the tumor was completely removed.

Everyone at Children’s treated us so kindly. Our most memorable experience was when Kelly, a nurse in the Pediatric Intensive Care Unit (PICU), visited Zac when he woke after being sedated so she could see him smile. He had been sedated when she was his nurse. All the doctors, nurses and staff are the most amazing people we have met, and we’re truly thankful!

After our experience, we knew we had to give back. We sold raffle tickets at work to raise money to make “Bags of Smiles” – filled with games, arts and crafts, toys and more for kids who are being treated in the Cancer and Blood Disorders Clinic. Our mission is to provide children battling cancer and other serious illnesses a chance to be a kid and smile.

On Aug. 18, we’ll host our first golf tournament to raise money for Children’s patients and Bags of Smiles. Please visit www.bagsofsmiles.org to learn more.

Posted in Foundation, Patient Stories | No Comments »

The Johnston family goes to Washington

Tuesday, July 17th, 2012

This is a guest post by John Johnston, dad to patient Mike Johnston, who was diagnosed with a tumor in 2011. His family will be in Washington, D.C., next week for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings patients from children’s hospitals and their families to tell their stories to lawmakers on Captiol Hill.

The Johnstons

On April 18, 2011, we took our 13-year-old son Mike to Children’s in St Paul. That day, our family began receiving treatment from Children’s. It turned out that Mike had a cancerous Germinoma tumor that was blocking the flow of cerebral spinal fluid. The fluid was building up in his skull, putting pressure on his brain and causing him to have tremors and headaches. As we began Mike’s cancer journey, it became obvious to our family that Children’s not only treated the patient, but they treated the entire family. Every staff member who came into our room introduced themselves to all of us, including 7-year-old Emma. We felt secure with the staff since they all made time for us and made us feel like we were their only patients at the moment.

Throughout Mike’s treatment, several important events were planned. The first was the American Cancer Society’s Relay for Life in White Bear Lake, Minn. Mike was one of the featured speakers. The oncology team scheduled chemotherapy and other appointments to make this special event possible for Mike and our family. The second major event for Mike that summer was his junior high school trip to Washington, D.C. This was an opportunity he couldn’t pass up since the teacher in charge was Mike’s favorite teacher and helped Mike get passionate about history. Mike enjoyed the monuments and museums in our nation’s capital and was able to take it all in despite his low blood counts.

Throughout our family’s journey with Children’s, we all felt blessed to have this institution charged with our son’s care. We felt so proud to have Children’s in our life that our family made a commitment to give back. Mike is now a member of the Youth Advisory Council, and my wife and I participate in the Families as Partners program. This all led to the upcoming opportunity for our family to travel to Washington, D.C., to advocate on behalf of Children’s. We’re very excited for this chance to give back. We even accepted this opportunity knowing that we would travel on Emma’s ninth birthday. We can hardly wait to see the sites as a family and meet many wonderful people who’ve also been touched by Children’s.

See you in Washington!

Posted in Advocacy, Cancer and Blood Disorders, Patient Stories | No Comments »

« Older Entries
Newer Entries »