Category Archives: Uncategorized

Sarcoma: Greater awareness key to early diagnosis

This is a post by Dr. Nancy McAllister, a pediatric oncologist in Children’s Hospitals and Clinics of Minnesota’s Cancer and Blood Disorders Clinic. She treats patients with sarcomas, and she focuses on children with head and neck cancers. She’s also a clinical partner to the Karen Wyckoff Rein in Sarcoma Foundation. The foundation will throw their 12th annual Party in the Park on July 23 from 6 p.m. to 9:30 p.m. at Como Park in St. Paul.

Dr. Nancy McAllister

Sarcoma is a type of cancer that occurs in a variety of tissues. It can show up in nerves, muscles, joints, bone, fat and blood vessels. Because these tissues are found everywhere in the body, sarcomas can occur anywhere. They can be found in people of all ages, from young children to adults. In fact, fifteen percent of children and adolescents with cancer suffer from sarcomas. The majority of sarcomas in this age group are one of three types: Rhabdomyosarcomas, Osteosarcomas and Ewing’s sarcomas.

Sarcomas most frequently occur in the limbs. They may be hidden deep in the body so often they’re large by the time they’re diagnosed. Delay in diagnosis can create tumors that are more difficult to treat, so early recognition of these tumors is critical. In order to get a proper diagnosis, a surgeon with expertise in cancer surgery needs to do a biopsy.

Unfortunately, patients and doctors often miss signs of sarcomas or mistake them for something harmless. In an effort to increase awareness around sarcomas, Children’s is participating in the Rein in Sarcoma Foundation’s Party in the Park on July 23 at Como Park in St. Paul.

The Rein in Sarcoma Foundation and their Party in the Park help raise awareness about sarcomas and encourages families and medical providers to be especially aware of lumps.

Did you know…

People experiencing the following symptoms should be evaluated by a medical professional familiar with sarcomas as soon as possible:

  • Any lump or bump, 2 inches or greater in size
  • Deep lumps that increase in size
  • Pain, anywhere in the body, that isn’t explained by injury or increased activity that worsens or lasts longer than a month

At Children’s, we have several pediatric oncologists who can evaluate patients with the above symptoms:

Dr. Julie Chu, Dr. Jawhar Rawwas, Dr. Susan Sencer, Dr. KrisAnn Schultz and myself. We’re dedicated to diagnosing sarcomas early and treating children with sarcomas in the best way possible.

To read more about Dr. McAllister’s involvement with Rein in Sarcoma, click here. For more information about the Party in the Park, click here.

 

 

 

 

A Hero’s Journey: Discover your inner hero

This is a guest post by Daniela, a member of  Children’s Youth Advisory Council. 

As part of the Youth Advisory Council at Children’s, we get to let the staff know what kids really think about things. Recently, I got the chance to check out the A Hero’s Journey workshop to see what it was like. It was really fun!

It’s a project the Guthrie Theater is doing at Children’s to explore that whole idea of being a hero. Most people think of heroes being someone like Iron Man, but all of us have our own hero moments! When you stand up for someone or learn something new, your words and actions make you your own kind of superhero.

We got to play theater games and act out stories. Each person had a role and a line. That was a ton of fun! I really liked meeting new friends. The Guthrie teaching artists were so nice, caring and comfortable to be around.

If you like storytelling or acting, this would definitely be the thing for you!

A Hero’s Journey workshops are open to children and teens ages 8 to 14. The workshops are held one Saturday each month, with a morning and afternoon workshop that lasts two-and-a-half hours. Patients with chronic conditions, repeated hospitalizations or appointments, and those who have been hospitalized for at least three days are prime candidates. Children may be patients at any of Children’s locations, including outpatient clinics and our main hospitals.

Call the Child Life Department at 612-813-6259 for more information and to register. Children’s and the Guthrie are excited to help patients discover their inner hero!

Sweet Dreams for Kids brings pajamas, smiles to Children’s

Wendy Berezovsky, founder of Sweet Dreams for Kids, and her family threw a pajama party at Star Studio on May 31.

Kids don’t always understand that sometimes it hurts to feel better. At Children’s, we believe that the small things can make a big difference to our patients and families.

Wendy Berezovsky knows firsthand from the time she spent at Children’s with her daughter, Dalya, who was born with cancer and spent much of her first year here, that a cozy pair of pajamas can bring a smile to the face of a young patient.

Wendy started Sweet Dreams for Kids, an organization that has donated more than 3,000 pajamas to patients in Minnesota hospitals and beyond and brought new pajamas to our patients for a super fun PJ Party-themed show in the Star Studio on Thursday, May 31. Kids tuned in from their hospital beds or came to the first-floor studio to join the slumber party games, stories and songs!

Thank you Sweet Dreams for Kids!

Check out the news coverage from WCCO and KSTP.

Reflecting on the loss of Children’s dear friend, James G. Miles

One of the founders of Children’s – Minneapolis, James G. Miles, died earlier this week.

Ask Dr. Arnold Anderson, the hospital’s first medical director and chief executive officer, about the impact of Miles, and his answer is unequivocal:

“Without Jim Miles, Children’s Hospital would not be.”

Perhaps best known as a founder and top executive at Control Data Corp., at one time one of the leading computer companies in the world, Miles was an engineer, lawyer, inventor, entrepreneur, gubernatorial candidate and author.  Dr. Anderson would add a few more descriptions to the list: “visionary,” “genius,” “revolutionary” and “a man of principle.” But not many people know his history as founder of Minnesota’s largest children’s hospital.

After a discouraging meeting with a Chicago consultant who questioned the feasibility of building a Children’s Hospital in Minneapolis, Miles said to Dr. Anderson: “If you will stick with me, we will build that hospital.”

Despite opposition from local philanthropists, government officials, medical academics and the hospital community, Miles believed that children should have a hospital dedicated to their unique needs. Starting in 1967, Miles helped lead the effort to win the necessary approvals, financing and funding to build the hospital, which opened in 1973.

It wasn’t easy. Not by a long shot. At one point, construction had to be stopped due to insufficient funds, and a cyclone fence was installed around the perimeter of the site to prevent neighborhood children from falling in the giant hole that had been dug, according to Dr. Anderson. Later, during a cash crunch early in the hospital’s history, Miles pledged his entire net worth to keep the hospital going, according to a Star Tribune story about Miles in 2008.

“Miles was instrumental in creating plans for the hospital, employing innovative and cost-effective construction principles and child-friendly designs,” Dr. Anderson said. “He even had a critical role in the hospital’s budgeting and governance that enabled the hospital to remain viable despite challenging fee schedules and a commitment to serve all children regardless of their economic circumstances.”

Miles established the organization principles for Children’s that remain essential today: a worthy common purpose, a strong “esprit de corps,” competence, a loving spirit, innovation, cooperation, generosity and faith, Dr. Anderson said.

“I would say that the very spirit of Children’s is due to Jim Miles,” he said.

Jim Miles may have died earlier this week, but at Children’s his spirit lives on.

Children’s is celebrating National Volunteer Week!

Children’s is celebrating National Volunteer Week this week! From April 15-21 we are taking a moment to thank the many volunteers throughout Children’s who share their time and talents with our patients & families. Children’s is supported by many volunteers, including:

  • All those who wear the red volunteer vest of honor
  • Children’s Association-Minneapolis members
  • Board members at all levels
  • Children’s Hospital Association members
  • Corporate Partners
  • Family Advisory Council
  • Families as Partners
  • Parent-to-Parent
  • Youth Advisory Council

In addition to the Kids’ Health Blog, Children’s has a blog focused solely on volunteerism at our hospitals and clinics, called the “Red Vest Review.” This week, the blog will be updated twice a day with in-depth stories on volunteers, staff supervisors, and their impact on the Children’s community. Said volunteer Jazmine Olson:

I really enjoy volunteering at Children’s. Everyone in the surgery unit is nice, friendly, and helpful. My favorite part of volunteering is interacting with the families and trying to make them feel more comfortable during their visit.”

Along with recognizing volunteer contributions, we will be recognizing the contributions of the many amazing staff who partner with volunteers in so many different areas!

You are cordially invited to attend our Volunteer Services Open Houses this week. Join us:

  • St Paul (B-L297 lower level) Tuesday, April 17, 2012: 11:00 AM to 1:00 PM
  • Mpls:  (B-700, lower level) Thursday, April 19, 2012: 11:00 AM to 1:00 PM

Cake will be served!

Thanks for your wonderful support of Children’s volunteers!

CoBank’s commitment to Children’s

CoBank’s Minnesota associates have been working with various organizations in their community for a number of years, and are always looking for new opportunities.

Late in 2010, Russ Nelson, President, Farm Credit Leasing, was approached by Children’s Hospitals and Clinics of Minnesota with a request for support. With so many associates using Children’s services for their own families, this was an organization everyone wanted to support.

CoBank made a long-term commitment to support Children’s with charitable contributions and volunteer service. Associates Jonathan Doran and Lisa Tollefson were asked to spearhead CoBank’s efforts with Children’s.

Jumping right in, more than 40 CoBank associates participated in the HeartBeat 5000 5k run/walk in June. Another opportunity arose shortly after with the “Love for the Lounge” program. Beginning in November, associates began stocking the shelves of the hospital’s sixth floor family lounge with items such as refreshments, magazines, games, toys and toiletries.

“CoBank’s contribution to the sixth floor lounge has added a sense of comfort for the families and children here,” said Christi Dady, Child Life Specialist, Children’s Hospital. “They are so appreciative that someone cares enough to do something like this for them at such a difficult time.”

“When families head to the hospital they often don’t have time to pack, they just grab their child and go,” said Tollefson. “Some of these families don’t have the means to purchase the things that can make them more comfortable or help pass the time during a long wait at the hospital. Offering these much needed supplies can make a big difference to these families.”

“The items we donate are provided to families at no cost while their children are receiving treatment in the hospital,” added Doran. “It’s been so gratifying to help these families. We are committed to making it work and growing our support.”

CoBank is a national cooperative bank serving vital industries across rural America. The bank provides loans, leases, export financing and other financial services to agribusinesses and rural power, water and communications providers in all 50 states. The bank also provides wholesale loans and other financial services to affiliated Farm Credit associations serving more than 70,000 farmers, ranchers and other rural borrowers in 23 states around the country.

Hello from Brazil: Strong leadership with a focus on quality care

Patsy Stinchfield, a Pediatric Nurse Practitioner from Children’s, is in San Jose Rio Preto, Brazil to help the Hospital de Base better control their post-operative infection rates. The following is Patsy’s third update from Brazil.

 

Hola!

It is hard to believe we have been here just four days and three days in the Hospital de Base.  I write this late in the day after a 16 hour day with the amazing CV ICU team at the hospital (that’s what everyone does on their vacation in Brazil, right?!).  The Children’s Heartlink program has a beautiful vision to bring the best cardiovascular care to children and our time here proves that many strides have already been made.

The passion and leadership of Dr. Ulisses Croti, the solo pediatric CV surgeon, is driving best practice in this hospital and the region on many fronts. The multidisciplinary team in this unit loves their work and it shows.  They do have more infections than they should — and we are leaving no stone unturned in trying to find out why — but as usual, there is no smoking gun, but many “fixable” issues.

Our focus this week on infection prevention in the CV ICU and pain management has been so fulfilling.  Dr. Kurachek and I have developed a subtle look we give each other when we realize they are doing a process better than we do in the US.

For example, each patient has a poster up of individual goals for the next shift on where to maintain the blood pressure, etc.  We admire their openness and willingness to take all advice on behalf of patient improvements.  There is no defensiveness or resistance to change.  The focus is clearly on quality care for tiny patients with big heart defects.

The complexities of the surgical procedures and the post-op care are like a great ballet–everyone knows their part and plays it elegantly. There are a number of fine tunings we will offer to get them from good to great but their culture of attention to quality will get them there faster.

Today, Dr. Kurachek provided a formal lecture on pain and sedation and I presented a formal lecture on blood stream infection prevention. We have been hammering the importance of hand hygiene all week and have appreciated the amount of time their ID doc and Infection Control nurse have given us.

We have had numerous conversations with small groups of staff with everything from considering a hospital acquired infection an emergency, to when do you stop antibiotics, to what is Empiric precautions, to what are the Fentanyl versus Morphine considerations (clearly that last one was Kurachek’s!).

What is impressive is the multi-disciplinary turn out for our talks.  My talk had 15 in attendance on the unit including intensivists, cardiologists, housekeeping staff, nursing, techs, therapists, students and infection control specialists.  They were very interested and able to learn together.  I was able to observe in the micro lab as well as the entire sterilization process, which is done well–bar coded and everything!

Dr. Kurachek was able to do morning rounds, meet with a vascular surgeon about non-surgical lymphedema treatment, do his pain talk twice, role play with me on how one points out a potential patient safety risk to a colleague and end the day with our team doing Safety rounds–and that was before dinner!

It has been a great day once again.  Big day tomorrow as we tour the new children’s hospital and help them prepare to prevent risks there.

Ciao for now (that rhymes!)

Patsy

Hello from Brazil: Open-Heart Observations

Patsy Stinchfield, a Pediatric Nurse Practitioner from Children’s, is in San Jose Rio Preto, Brazil to help the Hospital de Base better control their post-operative infection rates. The following is Patsy’s second update from Brazil.

 

Hola!

Our time in Brazil has been wonderful.  We finished our second day in the hospital today.  The surgeons, staff and specialists, including the Infection Control team who have devoted much of their week to being with us, have been outstanding.  They are approachable and interested in improving the quality of care they deliver despite their lack of resources.  They ask significant questions and push themselves to think of new ways to deliver care that is affordable.

Here on behalf of the marvelous Children’s Heartlink program, Dr. Kurachek and I are spending 12-13 hour days in the hospital (and then some serious Brazilian fine dining thereafter!).  I spent most of my day observing open heart surgery in the operating room of Dr. Ulisses Croti, a gifted surgeon and fine human being.

I focused on the process and details of the operating room procedures in relation to infection prevention. They do excellent work and have instituted such things as the pre-op and op “Time Out” on behalf of the safety of the patient and the clear goals of the team.  There are several minor suggestions I can offer, but for the most part feel they are doing great care for very, very sick patients.

Dr. Kurachek has been “holding court” in the ICU with all in attendance eagerly learning from him.  His second Heartlink trip here, he is well-known and well-loved, just like at Children’s.  He worked with the large multidisciplinary team to model rounds and the kinds of questions all should be asking each day: “What concerns you personally most about this patient from your perspective?”, etc.

He provided a long formal class on heart/lung hemodynamics that simplified the complexities of these challenging patients.

We have done many whole team dialogues, small group discussions from our fields and many one on one conversations, including with one amazing young Brazilian mother who is preparing to take her trached baby with Down’s syndrome home for the first time after seven months in the hospital. She said she felt comfortable stopping staff and visitors and asking them to please wash their hands before touching her baby knowing how hard he had fought to get to where he was.  She told me “My son is everything to me” and I told her “And you are everything to him”. Such strength from these moms.

Ciao!

Hello from Brazil: Arriving in San Jose Rio Preto

Children’s very own Patsy Stinchfield, recent recipient of the prestigious Pediatric Nurse Practitioner of the Year Award, is in San Jose Rio Preto, Brazil to help the Hospital de Base better control their post-operative infection rates. The following is Patsy’s first report from Brazil.

 

Hola!

I have finished my first day in the Hospital de Base in a small town called San Jose Rio Preto.  It is a city of 400,000 people and is surrounded by beautiful farmland.  We are staying at a hotel called none other than, The Saint Paul Hotel!

I am consulting in the public hospital here called Hospital de Base, an 800 bed hospital with a full pediatric cardiovascular surgery ICU.  They are having trouble with post-operative infections and are seeking help for Infection Control considerations from me and my great traveling companion, Dr. Steven Kurachek, a Harvard trained pulmonologist who is consulting on intensive care management.

It was a marvelous day, filled with observations of wonderful care by smart, compassionate people (pediatric cardiologists, surgeon, anesthesiologists, nurses, nurse technicians and respiratory therapists).  They are a warm and open group, eager to continually take the best care possible of their very vulnerable patients some of whom were so malnourished it was heart-breaking.

We made rounds on their 4 patients in the cardiovascular ICU and 3 patients in their step-down area.  We observed their care, listened, asked questions, engaged the team in dialogue about how they prevent pneumonia in ventilated patients and tried to play CSI with where their systems are breaking down to cause their patients to have more infections than most other hospitals. It was “Magnifico!”  We found some problem areas, but also found some practices better than we do in the US.  As usual, the teachers will come back having learned more than they taught.

One unexpected surprise was to tour a beautiful manufacturing facility near the hospital called Braile Biomedica which makes 450 different products mostly for heart surgery. (Think Brazilian Medtronic).  We met with Dr. Domingo Marcolino Braile, the “retired” cardiologist who founded this company with brilliant engineers and his experience doing cardiovascular surgery by knowing there is always a better way to do things.  We watched the staff trim bovine tricuspid valves and hand sew them in preparation for patients needing a valve replacement.  Simply amazing work.

In the evening, our hosts, Dr. Ulisses Croti (pediatric cardiology surgeon) and his wife, Dr. Lilian Beani (a neonatologist) are intent on showing us a good time in Brazil.  Tonight we went with 4 of the cardiology team staff to a traditional Brazilian beef house (think Fogo de Chao X 10) where they bring the hot meats and carve individual slices at the table.  (After a day in the cardiac ICU we all passed on the BBQ chicken hearts…).

They speak Portugese, which has a little similarity to Spanish but is very fast with different accents.  Instead of HOla it is hoLA for hello.  We have 3 medical interpreters who are amazing because they know all the medical technical language and do simultaneous (they prefer we just talk, not pause for them) English to Portugese conversation (we all wear little ear pieces).

After just one day, we have a list of suggestions as well as recognitions for work well done.  We also have a list of things we want to improve back at Children’s based on what we see here and know we can improve at home.  We all deal with the same pathogens and people problems no matter where in the world we work.  It is fascinating!

I will try to write a bit everyday.

Ciao!

Setting up child life services in India: Success in the Face of Continued Challenges

As National Child Life Month draws to a close, we continue our spotlight on Jeanine Clapsaddle. Jeanine is a Child Life specialist from Children’s who is in India for two months to help set up Child Life services at Manipal Hospital.

Jeanine’s trip is in partnership with the Priyanka Foundation, which was established to fulfill the dying wish of a former Children’s patient who wanted other kids around the world to get the same care she received. Jeanine is documenting her experiences through this blog series.

This is the fourth report from her trip:

 

The Child Life office here at Manipal is located just off the waiting room to the vaccination clinic. I am provided with ample opportunity to watch families with children of all ages interact while they wait or recover from their visit. I have been invited to gaze upon babies who, quite frankly, are breathtakingly beautiful with their heads of full, lustrous hair and dark eyes.

On more than one occasion every day, I am treated to games of peek-a-boo with curious toddlers who delight with running in and out of the open office door. Some grab their parents by the hand and drag them to the door to show them what they’ve discovered.

Parents are always gracious and smile, sometimes sharing the child’s name or asking questions about where I come from and what I’m doing at Manipal.

Today, in this same waiting room, I was witness how far my students have come in the short time I have been here, as well as how far we have to go.

I was in the office with my student, Sunitha, when we heard, as we frequently do, the traumatic screams of a child being carried to the vaccination room.  Somehow this girl of about 6 was able to escape her father’s arms and run back out into the waiting room. She was hunkered down in a corner sobbing.

In the blink of an eye, without any prodding from me, Sunitha grabbed a bubble tumbler and took off to approach the girl. Although the girl did not want to blow the bubbles, she was able to watch Sunitha blow them and settle herself some. Sunitha was able to talk with her quietly until the girl’s father could come and sit down next to her.

When the father was able to pick his daughter up, he approached our office door and Sunitha explained that I was here training her and as such we could give him some help with the situation.  I explained the work of Child Life as quickly as I could, shared some strategies such as positioning for comfort and distraction, and walked with him to the vaccination room, hoping that this would be the in-road that I had been longing for with the staff.

No such luck. The nurse was quick to dismiss us and our suggestions to the point of shutting the door in our faces. Sunitha and I walked the 10 steps back to our office to endure the resulting screams. As they left the vaccination room, the father stopped by the office door and thanked us for our help.

Despite the less than optimal outcome, I couldn’t have been more proud of Sunitha’s initiative and genuine attempts to help this child. I have observed the work of my students consistently and know that their skills are progressing. We spend time discussing various aspects of child life practice, dissecting my observations as well as theirs and converting understanding into guided actions.

But in this moment, I was aware that at some point the culmination of teaching is the development of some internal instinct about the work. Sunitha didn’t stop and ask me if she should or how to intervene with this child.  She grabbed the bubbles and took off. And I stood in the doorway to not only to use the opportunity to observe her work, but to also appreciate the intuition that activated her.

Being a good advocate, like in this case, does not always secure the actions or outcomes we strive for, with staff or with families. In the past week, we have done presentations for nearly five hundred of the physicians and nurses in the hospital, introducing them to the work of Child Life. And although I would speculate that this vaccination clinic nurse didn’t attend any of the presentations, I know that new and innovative programs are often met with resistance.

There are lessons to be learned about approaching barriers with subtly and persistence.  There will always be medical providers of all sorts, in hospitals everywhere, who see the work of child life as an intrusion or unnecessary.

But knowing that we gave this child a moment of respite to catch her breath, and her father some tools that he can use in the future, is enough to know that we do make an important difference in the lives of children and their families.

I hope that this is something my students will learn along with the technical aspects of providing care.