The healing power of the Blue Butterfly provides hope to children with leukemia

It was the phone call that no parent wants to get: “Max has leukemia and we think it’s a rare form,” said the doctor. I was getting a haircut and had to leave the salon immediately, not sure if I would vomit on the sidewalk or pass out. I was in a fog the whole drive home, tears flooding my eyes. The normally short drive home took forever. I needed to hug my boy.

Max was 7 years old. Less than a month before his diagnosis, he received a clean bill of health from his pediatrician at his well check-up, with the exception of a few urinary issues for which we were referred to a pediatric urologist. Test results revealed that Max’s spleen was enlarged, and the urologist handed us a business card and asked us to schedule an appointment with another physician.

When I called the next day, they answered the phone: “Pediatric Oncology/Hematology Group.” I almost hung up, thinking surely I must have dialed the wrong number. How did urinary problems lead to cancer? I felt sick to my stomach. This must be a mistake.

Max was admitted to the hospital immediately for an array of blood work and a bone marrow biopsy from his hipbone. The doctors had already ruled out the most common form of leukemia, ALL, or acute lymphoblastic leukemia, which has a 90 percent cure rate. How badly we wanted it to be ALL. Preliminary test results came back and his diagnosis was AML, or acute myeloid leukemia, with myeodysplasia, a disease more commonly found in adults. The once-hoped-for diagnosis with a 90 percent cure rate was now one with a 40 to 50 percent cure rate: AML. I remained optimistic, thinking we had a 50/50 chance of beating this.

Then, several days later, we got news that Max had monosomy 7, a genetic marker that made his aggressive leukemia even more difficult to cure. In one phone call, we went from a 40 to 50 percent survival rate to a 10 percent survival rate. This nightmare was becoming all too real.

Max started his chemotherapy treatment immediately. We got second and third opinions to confirm that his treatment was the best approach. All doctors confirmed that Max’s treatment was standard protocol for his age and disease. Yes, we were on the right course for recovery.

Max received two rounds of chemotherapy to put his leukemia into remission and endured bone marrow aspirations, a painful procedure requiring full anesthesia, after each round. We knew that ultimately he would need either a bone marrow or cord blood transplant for a full recovery.

After Max’s second round of chemotherapy, he developed an aspergilla’s or fungal infection in his lungs. The standard protocol chemotherapy dose that Max received was too strong for his little body, and it wiped out his bone marrow and immune system. His body had a hard time recovering. We were told that Max’s bone marrow had been “killed” with too much chemotherapy even though the doctors followed standard protocol

Max did recover enough to receive his cord blood transplant but because he was without an immune system for so long, he developed other infections and his fungal infection came back with full vengeance, taking over his body. Tragically, our brave warrior lost his battle on Feb. 15, 2001. In seven short months, Max went from being a healthy, thriving young boy to an angel.

In the years that have followed, Max’s passing, many blessings and gifts have occurred. In 2010, in Max’s honor, my husband, Chris, and I cofounded the Blue Butterfly Campaign, a nonprofit that funds research for childhood acute myeloid leukemia research to find better, less damaging treatments so someday no other child will need to suffer from this awful disease. We want the standard protocols that doctors follow to be replaced by more targeted treatment plans that are specifically tailored to each child’s biology, ensuring the best chance of survival.

Blue Butterfly Campaign is excited to be funding the research of OHSU Doernbecher Children’s Hospital’s Peter Kurre, M.D. His revolutionary work involves studying a technique that will allow children to have simple blood draws to detect leukemia in their body, instead of the standard, invasive and painful bone marrow aspirations that are currently being used. According to Dr. Kurre, this will not only be less painful, but much more effective in identifying any reoccurrence of the leukemia at very early stages. This, in turn, will allow doctors to prescribe less aggressive forms of treatment, increasing survival and decreasing the horrific side effects of harsh chemotherapy.

Tragically, leukemia is now the leading cause of disease and death among children and is shockingly underfunded. The Blue Butterfly Campaign is designed to change that!

Join us on Friday, Sept. 12, at 6 p.m. for the Blue Party at Oregon Golf Club, a fundraiser to benefit Dr. Kurre’ s research. Tickets are available at

Jayne Dearborn
Max’s mom and cofounder, Blue Butterfly Campaign



NEVER leave your child alone in a car, not even for a minute

The Tom Sargent Children’s Safety Center at OHSU Doernbecher Children’s Hospital and Safe Kids Worldwide would like to remind families that Thursday, July 31, is National Heatstroke Prevention Day.

Together, we can reduce the number of deaths by heatstroke by remembering to ACT:

A: Avoid heatstroke-related injury and death by never leaving your child alone in a car, not even for a minute. And be sure to keep your car locked when you’re not in it so kids don’t get in on their own.

C: Create reminders by putting something in the back of your car next to your child, such as a briefcase, a purse or a cell phone that is needed at your final destination. This is especially important if you’re not following your normal routine.

T: Take action. If you see a child alone in a car, call 911. Emergency personnel want you to call. They are trained to respond to these situations. One call could save a life.

Marianne Bridwell-Chapman
Program Coordinator
OHSU Doernbecher Tom Sargent Children’s Safety Center

The childless pediatrician: A parent’s worst nightmare?

“Do you have any children?”  I am asked this almost daily by families and parents of my patients, often as a means of small talk at the beginning of the visit, but more so at the end of an in-depth discussion, whether it be etiology of disease, prognosis, further lab tests, imaging, or suggested treatment.

I would be lying if I stated this question does not trouble me, usually producing strong feelings of inadequacy and sometimes fear. Does this parent feel I am incapable of caring for her child if I do not have kids of my own? I usually respond directly and honestly that no, I do not have children, but I do have several nephews and a niece that I love and cherish dearly. I then find myself intently watching their faces, desperately attempting to interpret their feelings regarding my response by analyzing a furrow in their brow or the small movements of their mouth. Will they smile and change the subject (I hope) or probe further?

Frankly, I have never asked the parents of my patients if being a non-parent influences their perception of my capabilities as their child’s physician. I imagine I would receive a wide array of responses, some that would reaffirm my efforts at appearing the most confident and competent that I can be, often when I am struggling inward. Other parents’ answers may leave me feeling inept, allowing all my anxieties to bubble to the surface of my mind’s awareness. When discussing this with a fellow physician and dear friend, she reports that prior to having a child, it did not seem to be an issue, but she now feels it is imperative for her baby’s pediatrician to also be a parent.

My concern that parents will not take me seriously as a physician and non-parent becomes palpable, at times, during well-child checks. I lack the experience and intuition that comes with the many sleepless nights trying to calm a colicky newborn. I have never had to childproof my home or deal with the daily tantrums of a self-centered toddler. I have never struggled with the concept of “being consistent” when it comes to time-outs and revoking privileges, and I have certainly never had to live with an unruly, opinionated teenager. How in the world do I provide advice when I have never done it? Do my war-weary parents, therefore, take my recommendations seriously or chalk it up to a young girl doing her best to appear knowledgeable in her somewhat ill-fitting pediatrician hat?

Despite these many fang-bearing worries that go bump in the night, I find myself circling back to the core of my being and existence. I absolutely love children, regardless of whether I have my own. Kids are the reason I pursued medicine and have fueled my persistence on this journey to completing my residency training, and being a non-parent does not alter my commitment to doing what is absolutely best and safest for my patients and their families. My hope then would be that my families would not focus on whether I am also a parent, but instead on the level of care I provide for their children; a level of care that I trust another pediatrician would one day give to my future child.

Allison R. Roland, M.D.
Chief Resident in Pediatrics
OHSU Doernbecher Children’s Hospital 

Water, water everywhere: How to reduce your child’s risk of drowning

Although summer swimming season is upon us, drowning is a risk in any weather. According to the Centers for Disease Control and Prevention, about one in five people who die from drowning are children 14 or younger, with children from 1 to 4 having the highest drowning rates. Water-related accidents don’t just happen around the pool: They can occur even inside your house.

Drownings can be fatal, or near fatal. A common location in the house in a bathtub. It is important to observe children continuously around water.

How to reduce your child’s risk of drowning

Keep Watch: While giving your child a bath, ensure he or she is getting your full focus. Distractions like checking your phone or going down the hall to grab a towel can leave a child at risk. Babes can drown in just an inch or two of water.

Go Beyond the Tub: Keep toilet lids closed and use seat locks. Close bathroom and laundry room doors if unoccupied. Wading pools or buckets that contain even a small amount of liquid should be emptied and put away. If you have a water feature in your yard, such as a koi pond, consider putting up a barrier around it; if you have a pool, install a four-foot or taller fence with latches out of your child’s reach.

Establish Proper Water Safety: Remove toys from the pool so children aren’t tempted to enter the area without supervision. Toys such as water wings, noodles and inner tubes are designed for fun, not safety — use a life jacket instead.

Get Educated: Research has shown that participating in formal swimming lessons can reduce the risk of drowning. If you don’t know how to swim yourself, it’s not too late to learn. Parents should also learn CPR; the sooner CPR is performed, the better the chance of your child recovering from a drowning event.

Parents shouldn’t think they think they’ll be alerted by splashes or sounds of distress. Drownings can be quiet, especially if associated with head or neck injuries. Parent and child education , surveillance, and proper training in CPR are the hallmark of preventing injuries such as drowning.

For more information on preventing drowning and other accidental injuries, contact your pediatrician or call the Doernbecher Children’s Hospital Safety Center: 503-418-5666.

David Spiro, M.D.
Medical Director
Pediatric Emergency Department
OHSU Doernbecher Children’s Hospital






Predicting whether children with ADHD will get better over time

ADHD is a controversial condition for several reasons:

  1. It is widespread and costly, so it attracts interest.
  2. It is treated with stimulant medication, and medication use has skyrocketed, raising questions about how diagnosis is conducted.
  3. Most crucially, over time, some children naturally get better while others have very poor outcomes, and we cannot yet predict which are which.

A major scientific focus is to identify biologically sound subtypes that will add to clinical prediction. In the OHSU ADHD Program, we are pursuing a neurobiologically informed model of subtypes that takes into account both the emotional and the attentional aspects of these children’s struggles.

The figure on the right shows that one cause of ADHD is in disruption of attention and another cause is in disruption of emotion. However, we don’t yet know if these are independent.

The approach also takes into account that their difficulties have a volitional component (partly under their control) and an involuntary component (partly beyond their deliberate self-control). For that reason the figure above depicts “bottom up” (involuntary) and “top down” (controlled) processes.

Evidence to support this approach has come from several studies conducted in the OHSU ADHD Program. The second figure shows a cluster analysis of a large sample of more than 500 children. On the graph, “normal” scores are 0 and “high” scores are “bad.”

When we organize the data based on performance on a broad battery of neuropsychological scores, we see that there is a group with problem in attention (controlled attention), and another group with problems in time processing; the other groups have problems in terms of low arousal or alertness.

This supports the idea that types of attention problems divide children into those with top down and those with bottom up attention breakdown. This is valuable because these attention types can be mapped onto
brain circuits and tested.

A second study (3rd diagram) shows a similar analysis from the perspective of emotion processing. It shows that one group of children with ADHD is characterized by highly irritable, angry behavior, another simply by exuberant behavior, and a third by normal emotional processing. Again, we can map these domains into known neurobiological pathways. In this last example, we also found that using this typology we could predict one year later which children were doing worse and which ones were not doing worse.

We could do so far more accurately than with existing clinical tools. Therefore, this approach is promising for improving clinical prediction in ADHD.

Joel T. Nigg, Ph.D.
Director, Division of Psychology
Director, ADHD Program
Professor, Departments of Psychology and Behavioral Neuroscience
OHSU School of Medicine

‘Doernbecher is the place where the good guys help defeat the bad guys’

I was asked to be a part of Doernbecher Children’s Hospital’s Amazing Storybook campaign, along with five other illustrators, by the Portland creative agency Sockeye. They developed a children’s picture book concept and language to help tell Doernbecher’s story. It seems like such an obvious fit for a children’s hospital, but you have to acknowledge that there are a million ways of telling a story — with charts and graphs and photographs — and I have total respect for all of those methods, but illustration! Yes!

After reading through the stories that patients and families shared on the Doernbecher blog, all I could think was, ‘wow, these are some tough kids.’ And ‘how in the world do you explain this stuff to your child?’ And of course the answer is different for everyone, depending on your parenting style and the age of your child …but either way it’s a narrative. And your child is the main character. The importance of this project sunk in almost immediately.

So I called my mom. (I don’t have kids, so when I need a parent’s perspective I ask my friends with kids, and I ask my mom.) She’s a cancer survivor, so she understands the long mental and physical battle, but she was equally stumped with how to take something so heavy and tie it up in one illustration. So what did she say? She told me a story that she had read about a little boy who wore his cape every time he went to the hospital. He was the brave hero fighting against the scaries and this helped him get through it. This narrative gave him and his parents a way to talk about it.

I love stories, especially ones with pictures. They give us the chance to see another character’s struggle from a different perspective … and hopefully they help us to understand and talk about our own feelings. That’s what this story needed to do. That’s what this single illustration needed to say: We’re going to be okay. Doernbecher is the place where the good guys help defeat the bad guys.

So I started drawing. I filled my sketchbook with goofy brainiacs and scary monsters. The doctors couldn’t be too goofy and the monsters couldn’t be too scary, so it was a bit of a balancing act. But once the characters started to feel right, I needed to pull them all together onto a single page.

I needed to create a sense of place. Where is all this happening? I can point to it. This is a real story that’s happening right over there, up on that hill, every day.
And if I put myself in some tiny shoes, maybe I could think of it like a castle, with gizmos and blinking lights, and friendly faces that make it feel like everything is going to be all right.

I feel lucky to be a part of this project and contribute an illustration that tries to tell the story of this amazing hospital. I can only hope that a child will see herself in this story and feel a little braver and a little stronger because she knows there is a team of doctors on her side, fighting to banish the scaries forever.

Catherine Lazar Odell
Check out Catherine’s website and blog:


Weight management most effective way to prevent type 2 diabetes in kids

The most common type of diabetes seen in children used to be type 1 diabetes, also known as ”juvenile diabetes,” a condition caused by autoimmune reaction that leads to destruction of insulin producing beta cells of the pancreas.

But since the mid-1990’s, we have noticed a new pattern emerging – more children and adolescents are being diagnosed with type 2 diabetes, a condition that used to be the disease of adults only. Type 2 diabetes is linked to insulin resistance and obesity, and its occurrence in children follows the trends of rising obesity rates in this population.

Both type 1 and type 2 diabetes carry the risk of serious long-term complications, including blindness, kidney failure and chronic pain due to nerve damage. It appears that those complications appear earlier in individuals with type 2 diabetes. In addition, children diagnosed with type 2 diabetes tend to become insulin dependent at a much faster rate than adults.

A recent study published in the Journal of the American Medical Association reports an ominous trend: the incidence of both types of diabetes seems to be increasing in American children and adolescents. In 2001, about 14.8 in every 10,000 children were diagnosed with type 1 diabetes. By 2009, that rate had risen to 19.3 kids in every 10,000, a 21 percent increase. The increase in new cases of type 2 diabetes is even more pronounced — in the same time period, it rose by 31 percent (from 3.4 to 4.6 kids per 10,000).

That’s why prevention of type 2 diabetes has become a critical public health objective. In order to achieve it, it is imperative that providers screen at-risk populations effectively. Current guidelines recommend screening children older than 10 if:

1) They have a body mass index (BMI) greater than 85 percent and two of the following risk factors:

  • First-degree relatives with type 2 diabetes
  • High-risk group by ethnicity: African-American, Hispanic and Pacific Islander population
  • Mother’s history of gestational diabetes during pregnancy
  • Signs of insulin resistance: acanthosis, a darkening of skin folds around the neck or elsewhere     on the body; hypertension; abnormal lipid profile; polycystic ovarian syndrome.

2) They have a BMI greater than 95 percent — regardless of associated  risk factors.

It appears that most effective preventive measure is weight management – numerous studies have shown that at-risk children who are able to maintain their weight have a much lower chance of developing diabetes.  It is very important that we develop effective programs that help children at risk and their families achieve this objective.

Ines Guttmann-Bauman, M.D.
Assistant Professor of Pediatrics, Division of Pediatric Endocrinology
OHSU Doernbecher Children’s Hospital
Pediatric Medical Director, Harold Schnitzer Diabetes Health Center



10 home safety tips from Doernbecher’s Tom Sargent Children’s Safety Center

Following are 10 things you can do to help ensure your active child is safe and healthy at home.

1) Think about the 10-second rule – If you would not trust your child alone with an item for 10 seconds, then he/she should never be able to get to it. Crawl around the rooms to identify hazards. Pay special attention to medicines, poisons and cleaning supplies.

2) Best vacuum cleaner – For infants and toddlers, everything goes in the mouth. Be sure your child does not have access to small objects. Button batteries can be particularly dangerous.

3) Cushion corners – Most toddler injuries requiring stitches are the result of coffee table and fireplace edges. While they may not be attractive, cushions for those edges can prevent some nasty lacerations.

4) Gravity works! – Stairs can be a huge hazard for early walkers. Be sure you have gates at both the top and bottom of the stairs. Help your child learn to navigate stairs safely with your careful supervision.

5) Window screens keep bugs out, but do not keep kids in – Hundreds of kids are seriously injured in window falls each year. All windows should have either a window guard to limit how much it can open (4 inches or less), or a metal or mesh guard that prevents falls.

6) Toddlers love to explore – Once your child is walking, be careful with hot food and liquids. Curious toddlers can pull on placemats, tablecloths or electrical cords and douse themselves with hot coffee.

7) Timber! – Once kids master walking, they start climbing, and bookcases, TV stands and dressers look like fun! Be sure to attache heavy, climbable furniture to the wall so it cannot topple.

8) Lock ‘em up – The safest way to store guns is unloaded in a locked cabinet with the ammunition stored separately.

9) Fire! — Be sure working smoke detectors are in or near all bedrooms, and test them twice a year. Keep a fire extinguisher in the kitchen.

10) Carbon Monoxide – Keep a working carbon monoxide detector on each level of the house, and test them regularly.

Ben Hoffman, M.D.
Medical Director, Tom Sargent Children’s Safety Center
Professor of Pediatrics
OHSU Doernbecher Children’s Hospital

Hospital School Program helps young patients maintain normal routines

School is the work of children, and at OHSU Doernbecher Children’s Hospital, we work hard to maintain that truth as children heal and recover. We believe that children have better long-term educational outcomes if they are able to maintain normal routines during their hospitalization.

For the school-age child or teen, a key way to achieve this is by participating in the Hospital School Program. During their stay, children will be introduced to the program by Multnomah Education Service District staff. We provide students with a reassuring bridge between their home, school and the hospital, which helps combat feelings of isolation.

You can find students engaged in learning in one of two MESD classrooms in OHSU Doernbecher’s Acute Care and Hematology/Oncology units, or working from their hospital beds. Our staff create a personalized education program that encourages each student to continue to grow. We collaborate with the student’s home school to ensure that we provide the most relevant academic instruction possible.

Each child’s educational needs are considered within the context of what makes sense for them medically. Our program is enriched by special partnerships with OMSI, OSU Master Gardeners and MusicRx, who regularly attend our classrooms providing high-interest and exciting learning opportunities.

In the classroom, students are able to connect with other students, developing a new learning community based on shared experience. The classroom is a great place for young people to continue to develop socially while maintaining their academic skills! By connecting children with peers, teaching staff and a meaningful curriculum, the Hospital School Program can give students a sense of purpose, belonging and normalcy.

As their hospital stay comes to an end, their hospital educator will work with the local school to make sure their “work” continues as seamlessly as possible as they head back to school.

Debbie Mettler, Heidi Worden and Linda Criswell
Hospital Teachers, Pediatric Acute Care Unit
Anna Balmaseda and Margaret Eng
Hospital Teachers, Pediatric Hematology/Oncology Unit
Kerri Russell
Hospital Teacher, Pediatric Intermediate Care Unit
Lisa O’Toole
Educational Assistant, Pediatric Acute Care Unit
Chuck Erkenbeck
Educational Assistant, Pediatric Hematology/Oncology Unit




Healing the healer: OHSU Doernbecher physician-in-training launches “The Well Resident”

It is well-established that over the course of a doctor’s training, there is often not enough time in the day to do everything: cook, sleep, exercise, take care of patients, spend time with loved ones.

In medical school, you’re in the classroom learning how to apply knowledge from the medical textbooks to the less scripted stories of patients. In residency, you are in the hospital more often than in your own home. To find work-life balance through all of this is a challenge; however, it is essential.

To be able to practice medicine to the best of your ability, you must be happy. Despite the recent 80-hour workweek restriction for resident trainees, this is still a fine balancing act to achieve. The question becomes how to weave self-care and wellness into the busy hospital day.

Wellness has been a special passion of mine from early on. Prior to medical school, I completed graduate studies at Georgetown University on the connection between life stress and physical/emotional health, examining various healing modalities like meditation, yoga and guided relaxation. I was determined to make wellness not only a priority on my own journey to becoming a physician, but also an important part of the community in which I trained.

This became an even larger reality when I lost my brother to a terminal illness prior to starting medical school. I often found myself using various stress-reducing techniques and regular exercise to help me get through my biggest challenges. My fellow medical students also were eager to learn more about reducing stress in order to bring more clarity and calm to their busy lives and minds.

When I arrived at OHSU Doernbecher Children’s Hospital for my pediatric residency, I again was determined to create an opportunity for growth, health and balance in my own life, but also in the lives of fellow residents. I was determined to utilize the passion and brilliance of Portland’s wellness culture to support fellow residents.

After thoughtful discussions with OHSU faculty, Graduate Medical Education, the primary care residency programs, combined with the generosity of local Portland businesses and wellness practitioners, the first formal resident wellness curriculum is slated to begin summer 2014.

Called “The Well Resident,” the new curriculum will be offered to all the primary care residents: family medicine, internal medicine and pediatrics. It will address essential wellness topics like sleep, yoga, mindfulness-based stress reduction, cooking and food culture, nutrition and exercise. Speakers will include a sports nutritionist with experience working for the Portland Timbers and Trail Blazers, a local restaurant owner and chef, a well-known Portland-based yoga teacher, a faculty member from University of California San Francisco’s Osher Institute for Integrative Medicine, and a faculty member in the OHSU Department of Pediatrics who specializes in sleep medicine.

We hope each resident will leave the lectures inspired and empowered to find wellness in their own lives. Bob’s Red Mill and Nike are both generously providing take-home items for all the residents to support physician wellness. Lululemon Portland is hosting the opening kick-off event to bring wellness practitioners in the Portland community and resident physicians together in order to form important relationships for future collaborations to best serve our patients.

I am thrilled that the “The Well Resident” has been met with such support and enthusiasm by OHSU. Together, we are the first academic medical center to institute a formal wellness curriculum for primary care residents, which ultimately translates into the highest quality of patient care. In the context of larger health care reform and the new pressures being placed on doctors, this couldn’t be a better time to advocate and educate on self-care and nourishment while at work.

“The Well Resident” is truly the culmination of all of my interests and efforts prior to starting residency. To work and learn at OHSU is a privilege and an honor. I look forward to seeing the program grow to be implemented institutionwide in the near future.

Megan Furnari, M.D.
Resident in Pediatrics
OHSU Doernbecher Children’s Hospital

Doernbecher Children's Hospital

Doernbecher Children’s Hospital


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