Brain cancer patient pledges to ‘Kick Cancer’s Booty’ — one dollar at a time

Eleven-year-old Alexa, known to her friends and family as “Princess Lexy,” wants to kick cancer’s booty.

Diagnosed with brain cancer when she was 14 months old, Alexa has had multiple major surgeries to combat the brain tumor and has been undergoing chemotherapy treatments for seven years. In 2012, she lost her vision. Alexa receives bi-weekly chemotherapy treatments at OHSU Doernbecher Children’s Hospital.

When Alexa’s mom, Monica, heard about Phil Knight’s $1 billion challenge to OHSU last September, she showed her daughter and her 15-year-old son, Cameron.

“The kids thought this might be the breakthrough we need. A billion dollars could cure Alexa and her many, many friends also suffering with cancer – she always thinks of the other children with cancer,” Monica said.

So Alexa and Cameron’s fundraising challenge was born – they issued a challenge to their friends, family members and fans of Alexa’s Facebook page to donate a dollar or more to help “Kick Cancer’s Booty” (view their fundraising site here).

“People started sending money like crazy,” Monica said. “It came in envelopes with stickers, cards and dedications. One 10-member family sent 10 $1 bills – one for each family member. Alexa and Cameron were very proud.”

To date, they have donated $645 to the Knight Cancer Challenge.

Alexa and her family are working hard to raise awareness about the challenge and its importance for fighting pediatric cancer. Last month, Alexa and her family met with Portland Mayor Charlie Hales, who officially proclaimed September – and every following September until a cure is found – Children’s Cancer Awareness Month in Portland.

On September 24 and 25, Portland’s Morrison Bridge was illuminated gold in honor of children with cancer, which Alexa’s family initiated. They gathered at the Tom McCall Waterfront Park to view the lights together (see photos from the event here).

Find out more about the Knight Cancer Challenge and how you can help OHSU meet Phil Knight’s challenge here.

Lisa McMahan
Social Media Coordinator
OHSU Doernbecher Children’s Hospital


Sleep is awesome!

Sleep is awesome! Just like food and water, we need it for our physical and mental well-being. The problem is that many of us are not getting enough or good quality sleep on a regular basis.

The goal of this post is to highlight some of the amazing things that happen during sleep and to stimulate the reader to think about making small changes in the daily routine that might have a big payoff.

How much sleep do we need?

The average newborn will sleep around 14 to 16 hours per day and half of that time is spent in rapid eye movement sleep (stage of sleep during which most of us dream). It is downhill from there on, and sleep length gradually decreases as we get older.  The average healthy adult will need about eight hours of sleep to function optimally and will spend much less time in dream sleep. The magic eight-hour number has been determined from large surveys and laboratory studies that gave healthy people an opportunity to sleep without having to worry about going to work and with very limited access to electronics.

We also know that sleep debt — similar to a credit card debt — can creep up on a person. If you are getting just 20 to 30 minutes less sleep per night than what your body needs, you will accumulate a big deficit over time. This deficit then contributes to not feeling and performing well.

What happens in the brain during sleep?

One common assumption is that the brain gets switched off when we are sleeping, when just the opposite is happening. When we are in dream sleep, the brain is firing on all cylinders and the cells in the brain are “shaking hands” and “talking” to each other non-stop. The result of all that activity is the formation of new connections and networks which allow us to remember learned information and to apply it.

Getting the right amount and high-quality sleep is especially important for children and teenagers as their brains are undergoing tremendous growth and they need to process huge amounts of information.

We all know that a sleep-deprived brain is not a happy brain. Sleep lifts our mood and helps us keep a positive outlook on life.  Parents of teenagers likely agree that a well-rested teenager is much more fun to be around.

Sleep is the brain’s housekeeper. Recent research suggests that a major function of sleep is the flushing out of metabolic products that could harm the brain; similar to the rinse cycle on your washing machine.

The sleep-deprived brain works as poorly as a drunken brain. A study of healthy adults found that 24 hours without sleep resulted in the same poor performance test as having a blood alcohol level of 0.1 percent. Unfortunately, like the drunken brain, the sleepy brain does not really know how impaired it is.

What happens in the body during sleep?

Sleep makes muscles perform better. All elite athletes know this and make sure that they are getting enough sleep during training and before competitions. A study in college basketball players showed improved 3-point shooting averages and a one-second improvement in 282 feet sprint time with no change other than sleeping more.

Sleep strengthens our immune system. Not getting enough sleep can increase the risk for illness due to infections.

Things to consider for more and better sleep

If your child is getting the age-appropriate amount of sleep per night and is alert after waking up and during the day, stop reading right here. Otherwise, read on.

  • Measure sleep

In order to get a better feeling for the magnitude of the sleep deficit, it can be helpful to keep a daily sleep diary for a week or two. The diary should include the bedtime routine and the time of falling asleep and waking up. If the average daily sleep duration is adequate but your child is still very tired, something might be wrong with the sleep quality. Poor sleep quality could be caused by medical problems, medications, stress or sleep apnea. If the sleep is not refreshing, or your child has a very hard time falling asleep at night, it might be a good idea to talk to your child’s doctor.

  • Develop healthy sleep habits

Try to provide an environment that helps with the transition to sleep. Keep the room dark (small nightlight OK if needed). Find the temperature that is most comfortable (too cold or too warm makes it harder to fall asleep). Avoid a heavy meal or exercise right before bedtime. Keep all electronic entertainment devices out of the bedroom. This can be hard to do if the child has gotten used to these devices. It is best to set rules early on and have a dedicated space outside of the bedroom for computer, game station and all the fun handheld devices.

Advise your child to only go into the bed when ready to fall asleep. Avoid reading books, playing video games or other activities in bed. The brain gets used to being entertained in bed and then keeps seeking that stimulation instead of being able to switch to sleep mode.

  • Supercharge the brain with naps

Short naps are extremely effective. A 10-minute nap will improve your brain power for a full 2.5 hours. Pretty good return on investment, I’d say. The beauty of the short nap is that it is short (you can also do it more than once a day). Most importantly, you avoid the groggy or dopey feeling you might get after a longer nap.

  • Back to school

Teenagers often struggle with the transition from the summer break back to school. Their body clock has adapted to a very late bed and wake-up time. The first couple of weeks of school can therefore be a real drag. The transition to school can be made less stressful by starting a week or two before the end of summer break. Going to bed at a slightly earlier bedtime every night and getting up a bit earlier every day is often easier than the hard transition in just one night. Bright light in the morning and avoidance of electronic devices in the evening will also help adjust the body clock to an earlier time.

Holger Link, M.D., M.R.C.P.
Clinical Associate Professor of Pediatrics
Pediatric Sleep Medicine Program
Division of Pediatric Pulmonary Medicine
OHSU Doernbecher Children’s Hospital



Q: How can I help my child prepare for surgery?

A: Although specific details will depend on your child’s age and the surgical procedure, it’s always best to be clear and honest, as well as reassuring. In other words, don’t baby your child — explain what the surgery is for, what’s going to happen during it, and how he or she might feel after waking up.

You don’t need to explain every potential complication, but you do need to be truthful so your child knows what to expect: Kids are tougher than we sometimes give them credit for.

If you are concerned about your child’s fear or apprehension regarding surgery, the OHSU Doernbecher Children’s Hospital Child Life Program uses age-specific approaches to help lessen a child’s anxiety about any aspect of a hospital or surgery.

More information: Preparing for Surgery at OHSU Doernbecher

Kenneth Azarow, M.D.
Division of Pediatric Surgery
OHSU Doernbecher Children’s Hospital


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



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