Advocating for hope: Chehayla’s Doernbecher story

Ten years ago, Doernbecher patient Chehayla Hyatt was diagnosed with Cystic Fibrosis. Over the years, Chehayla and her family have dedicated their efforts to raising awareness about CF and its impact on patients and families. Below, Chehayla’s mom, Brianne, shares their powerful story.


What is Cystic Fibrosis? Cystic Fibrosis, or CF as it’s often known, is caused by a defect in the CFTR gene. In people with CF, this gene causes a thick build-up of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Learn more about CF here.

The day of Chehayla's diagnosis

The day of Chehayla’s diagnosis

Our daughter Chehayla was diagnosed with Cystic Fibrosis when she was 10 months old. At her first Cystic Fibrosis Clinic appointment at OHSU Doernbecher Children’s Hospital, we were given a handout about the Cystic Fibrosis Foundation (CFF). It explained that the CFF was responsible for raising funds to create new therapies to sustain the lives of those living with Cystic Fibrosis. Shortly after Chehayla’s diagnosis, I had the feeling that I needed to do something – I couldn’t just sit around waiting for others to help save my child. I called the Cystic Fibrosis Foundation and asked how I could get involved. Since that day our family has been supporting the Cystic Fibrosis Foundation in raising awareness and donations.

This summer Chehayla’s sister, Talon, was asked to represent Oregon at the Cystic Fibrosis Foundation’s Teen Advocacy Day in Washington, D.C. While in D.C., Talon met with Sen. Jeff Merkley and legislative assistants of Reps. Kurt Schrader, Peter DeFazio and Earl Blumenauer.

Talon spoke with them about what life is like for her and what it’s like having her sister constantly in the hospital because of CF. She talked about how lonely her room is and how hard it is to focus in school when her sister is gone. She told them about how Chehayla has been admitted to OHSU Doernbecher 17 times in the last seven years. She told them about how at just 9 years old, her sister’s veins have become useless for administering IV medication.

After bringing the room to the brink of tears, Talon then asked them to join the Senate Cystic Fibrosis Caucus and the House of Representatives’ Congressional Cystic Fibrosis Caucus to support funding for the NIH and FDA. She pleaded for them to join our efforts in improving the lives of all those in our CF community. In that meeting Senator Merkley agreed to join the Senate CF Caucus and a few weeks later we learned that Representative Blumenauer joined the House CF Caucus.

Talon talking with Sen. Jeff Merkley

Talon talking with Sen. Jeff Merkley

Our advocacy for Cystic Fibrosis extends beyond our support of and work with the CF Foundation. When Chehayla is admitted to OHSU Doernbecher, we’re there anywhere from two weeks to a month at a time. I like to think of ourselves as Doernbecher residents. It truly has become our home away from home.

Since we are there so much, I’ve found that I have a unique perspective. A few years ago I joined the Cystic Fibrosis Family Advisory Council at OHSU Doernbecher. Our time at “Club D” (our nickname for Doernbecher) has proven to be very useful in advocating for changes. The Family Council has been working closely with the Unit Nurse Management to implement various changes to improve the inpatient experience for other families with CF.

Chehayla and Hospital Facility Dog Hope hanging out at "Club D"

Chehayla and Hospital Facility Dog Hope hanging out at “Club D”

No parent wants their child to be sick or have to spend time in the hospital, but we are so grateful that we have Doernbecher. Our CF Care team always takes our concerns into consideration and we make decisions for Chehayla’s health as a team. If I had to say what it is about OHSU Doernbecher Children’s Hospital that makes it so great, I’d say it’s the people. Our care team, the nursing staff, Child Life, administrative support, RSAs, housekeeping – they are all such friendly, caring people. They’re what make Doernbecher great!


CF families: Did you know that there’s a Cystic Fibrosis Family Support Group at OHSU Doernbecher? It’s held the second Thursday of every month. If interested or if you have questions, please email or call (503) 494-8023. Note: Due to infection control guidelines, patients with CF cannot attend.


Learn more about Chehayla and the rest of this year’s incredible Doernbecher Freestyle patient-designers here. We hope we’ll see you at this year’s collection reveal and auction on October 28!

Tricks for dealing with Halloween treats

Does the thought of Halloween candy sitting around your house have you feeling a bit spooked? You can still enjoy this festive holiday while minimizing – or even avoiding – the sweet temptations. Here are some tricks for dealing with the treats:

  • Wait until the day of Halloween before purchasing candy to pass out. If that isn’t convenient, try waiting until the week of Halloween and keep the bags sealed and out of sight until the trick-or-treaters start arriving.
  • Buy your least-favorite type of candy – you’ll be much less tempted to dip into the candy bowl if you don’t like the treats.
  • Choose healthier treats to pass out, such as small packages of popcorn, trail mix, pretzels, dried fruit or granola bars.
  • Consider giving out Halloween-themed toys instead of candy. Craft and party stores have a wide selection of fun, inexpensive party favors such as temporary tattoos, whistles, stickers, bubbles, spider rings, and – my personal favorite – zombie eye patches. Another benefit of providing non-food treats is to help make Halloween more inclusive for kids with food allergies as part of the Food Allergy Research & Education’s (FARE’s) Teal Pumpkin Project. All you have to do is paint a pumpkin teal or print and post a sign from FARE to indicate you are participating (teal is the color of food allergy awareness).

What to do on November 1 when there’s leftover candy calling your name? Get it out of the house! I love the Halloween Candy Buy Back program – here’s how it works:

  • Drop by a participating dentist office to deliver your leftover candy after Halloween. Contact your dentist to find out if they are participating, or go to and enter your zip code to search for a list of local participants.
  • Your candy will be weighed and you (or your kids) will be reimbursed per pound (usually $1 per pound of candy, although some dentists may offer another form of “buy back”). Many dentists also enter donors into a raffle for a chance to win additional prizes. This is a great incentive for kids to donate their excess candy!
  • The candy is then sent to Operation Gratitude, who uses it to create care packages for troops stationed overseas.

This program is a fantastic way for little ones to enjoy a reasonable amount of candy on Halloween and still have a treat (through cash and raffle prizes) after the holiday, all while supporting a good cause.

Plus, it eliminates the post-bedtime dips into the candy stash by Mom and Dad…

Happy Halloween!


Severson-Tracy_13_blogTracy Severson, R.D., L.D., is the dietitian for the Center for Preventive Cardiology at the Knight Cardiovascular Institute. She specializes in nutrition counseling for cardiovascular health and weight management.

Safe sleep tips

I remember running into the Emergency Room and seeing nothing but tears: tears from the nurses and staff, tears from a distraught mother, and then tears clouding my own vision when I saw the lifeless form of the 6-month-old boy.

I was as close with his family as I had been with any family as their pediatrician. I was present at his birth, provided his well-child care and cared for his sister through an illness and subsequent rehabilitation.

Everything was perfect until that night, when I signed his death certificate.

He died in his sleep, and the autopsy showed no abnormality or disease. The medical examiner ruled his death to be Sudden Infant Death Syndrome, or SIDS. He had slept in bed with his parents, and they found him unresponsive at 4 a.m. He was fine the day before, and then he was gone.

According to the U.S. Centers for Disease Control and Prevention, about 3,500 infants die of SUID (Sudden Unexpected Infant Death) each year, and about 40 of those happen in Oregon. Of those deaths, about 25 percent are the result of identifiable occurrences during sleep, including smothering and suffocation from blankets, pillows or other people. The rest have no clear explanation, and are classified as either Sudden Infant Death Syndrome (SIDS), or unexplained. In 1992, the American Academy of Pediatrics (AAP) recommended that all infants less than 1 year of age be placed on their back for sleep, followed by the Back to Sleep campaign in 1994. As a result of those recommendations, we have seen a decrease in deaths from SIDS of approximately 70 percent in the last 30 years. Those recommendations can be found here and are also listed at the bottom of this blog post.

While we know what works to help ensure that babies sleep safely, it can be challenging for parents to adhere to best practice. Living with a newborn is exhausting, terrifying and, worst of all, unremitting: night after night, for months on end – it is completely understandable why parents may choose to bed share with their infants.

Sociocultural pressures and beliefs, coupled with concerns like spitting up, lead parents to choose to co-sleep with their babies, or to allow them to sleep on their stomachs. As the parent of three kids (meaning I myself have survived having three infants), I have memories of the sleep deprivation. However, I am sure I have repressed most of the true memories of the absolute exhaustion that our children wreaked upon us.

As a pediatrician, I spend hours every week discussing safe sleep with families, reviewing the recommendations that prevent tragic deaths from SIDS and suffocation. Many families acknowledge that they are following best practice. Many more families confide that following the guidelines is a challenge; they often feel the infant prefers sleeping on her stomach, that the baby will not sleep alone in her bassinet or crib or that they are uncomfortable being separated from their baby.

Tragically, many families may also be forced into unsafe situations due to space or financial restrictions.

Last month, pediatricians at Penn State published a brilliant study using video surveillance among participating families to show that most infants were sleeping in unsafe ways. Many babies were put to sleep in dangerous places, on their sides or bellies, and most had dangerous items in their sleep spaces. Moreover, when babies awoke during the night, many were moved to an unsafe sleep environment.

I must admit, I am not totally shocked by this study, and it confirms what every parent knows: Getting your baby to sleep, and making sure that parents are also able to sleep, is a huge issue for everyone. People do what they feel like they must do just to get through the night. It is survival mode for parents. The tragedy lies in the fact that survival for parents can be critically dangerous for babies.

What I take away from this study is a humbling reminder that it is hard to be a parent. It’s easy for me to talk about things and provide recommendations based on the best available science. People will take that information and do what they need to in order to make it through a day and night. Armed with this information, I can help acknowledge the challenges, and help parents do the best they can as a part of an honest conversation, as opposed to a sermon.

I often think back to that night in the ER, to the sadness and powerlessness I felt as a physician, and as a person, to prevent the senseless loss of a beautiful baby. As I reflect on that, I also reflect on the fact that every year, more children die from sleep-related deaths (most of which are associated with unsafe sleep practices) than they do from all of childhood cancers combined. Crazy, right?

We know what we should do, but we also, sadly, know what actually happens sometimes. I encourage you to read through the recommendations below and share them with your friends and family members.

What you can do, as recommended by the American Academy of Pediatrics:

  • Place your baby to sleep on his back for every sleep.
  • Place your baby to sleep on a firm sleep surface.
  • Keep soft objects, loose bedding, or any objects that could increase the risk of entrapment, suffocation, or strangulation out of the crib.
  • Place your baby to sleep in the same room where you sleep but not the same bed.
  • Breastfeed as much and for as long as you can.
  • Schedule and go to all well-child visits.
  • Keep your baby away from smokers and places where people smoke.
  • Do not let your baby get too hot.
  • Offer a pacifier at nap time and bedtime.
  • Do not use home cardiorespiratory monitors to help reduce the risk of SIDS.
  • Do not use products that claim to reduce the risk of SIDS.

For details and additional tips to reduce the risk of SIDS, visit or talk with your family’s provider.


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


Healthy lunches for the whole family

Excited for your kids to go back to school but dreading the task of packing their lunch box? Packing a healthy lunch can be quick and easy once you master the elements of a balanced meal. As long as you have the basic groups represented, you can mix and match to quickly put together healthy lunches for your kiddos – and for yourself!

What to include:

  • Lean protein such as skinless poultry, fish/seafood, eggs, low-fat or non-fat dairy (milk, yogurt, cottage cheese, cheese), beans, lentils, tofu, nuts or nut butters
  • Whole grains such as whole wheat (bread, tortillas, pasta), brown rice, quinoa, barley, oats or corn tortillas
  • Fruits and vegetables
  • Healthy fats such as nuts, nut butters, seeds, olives or olive oil.

Ideas to get you started:

  • Natural peanut butter and banana sandwich on whole-wheat bread
  • Black bean soup with added veggies (such as carrots, broccoli, and cauliflower—puree after cooking and nobody has to know they’re there!) and a dollop of salsa packed in an insulated thermos (this model keeps my daughter’s lunch warm all day), with a few whole-grain crackers (such as Triscuits or Kashi)
  • Hummus pinwheels: spread hummus or bean dip (I like WildWood’s 3-Bean Dip) onto a corn or whole-wheat tortilla, top with julienned carrots, bell peppers, cucumbers and halved grape tomatoes, then roll up and slice
  • Fruit and yogurt parfait: In a jar, layer plain non-fat Greek yogurt with berries and low-fat granola or whole-grain cereal and chopped walnuts. Do your kids balk at plain yogurt? Try mixing a little flavored yogurt with the plain to reduce the amount of added sugar they’re consuming.
  • Fruit “sushi:” Spread almond or peanut butter on a whole-wheat tortilla, followed by julienned bananas, apples, strawberries or any other fruit your kids enjoy. Roll up and slice into sushi-style “rolls.”
  • Set up a lunch station in the evening and let the kids create their own “lunchables”-type meal for the next day:
    • Choose one lean protein: low-sodium deli turkey or chicken slices, low-fat string cheese, hard-boiled egg, edamame, non-fat Greek yogurt or non-fat cottage cheese
    • Choose one healthy fat or higher-fat protein choice: hummus, peanut butter, almond butter, pitted olives, 1/4-cup nuts/seeds (if age appropriate)
    • Choose one whole grain: whole-grain crackers, whole-wheat or corn tortilla, slice of whole-wheat bread (quartered)
    • Choose one or more vegetable: carrot sticks, bell pepper strips, sugar snap peas, cucumber slices, cherry tomatoes, etc.
    • Choose one fruit: apple slices, berries, banana, orange segments, kiwi, etc.


Severson-Tracy_13_blogTracy Severson, R.D., L.D., is the dietitian for the Center for Preventive Cardiology at the Knight Cardiovascular Institute. She specializes in nutrition counseling for cardiovascular health and weight management.


Generations of strong nurses

They say nursing is more than a career – it’s a calling.

For one family, it’s a calling that has been passed down from generation to generation – and it all started at OHSU Doernbecher in 1961 with a nurse named Myrna Strong.

“In those days, if you graduated from high school, you had three choices: You got married, you went to business school or, if you could afford it, you went to college,” Myrna said. “My stepmother was a nurse and the nursing program seemed like it was right up my alley.”

After completing a training program in Alberta, Canada, Myrna and two of her friends headed west with their sights set on a future in Hawaii. They didn’t have the funds to make it all the way, but an ad in the American Journal of Nursing convinced them that Portland would make for a nice stop along the way.

Myrna ended up working at OHSU Doernbecher and met the man who would become her husband. The pair moved to California so he could get his Master’s degree and they eventually settled back in Portland, where Myrna continued to work in pediatrics for 35 years.

“I was just at Doernbecher for two years, but they were amazing years,” Myrna said. “It gave me a real basis for the rest of my career and I loved every minute of it.

In particular, Myrna remembers the level of care OHSU Doernbecher provided to patients from across the state.

“We cared for patients from birth to 2 years,” Myrna said. “The amazing thing to me was all of the unusual cases – I trained at a city hospital in Calgary, Alberta, where we saw run-of-the-mill cases and a few surgeries. It was nothing like what I saw at Doernbecher. Working here was a very eye-opening experience for me.”

Myrna (holding a photo from her nursing school days) and Amy in front of OHSU Doernbecher

Fast-forward to 1994. Myrna’s daughter, Amy Wilson, worked as a CNA float at OHSU Doernbecher. The next year – after completing her bachelor of science in nursing degree at Linfield College – she landed a nursing job in surgery at OHSU.

“When Amy was in high school, she came up to me and said, ‘Mom, I think I want to be a nurse like you,’” Myrna remembers.

Amy has continued her mother’s legacy, caring for kids and families at OHSU Doernbecher in Pediatric/Cardiac Surgery for more than 20 years.

“My mom told me how wonderful nursing was,” Amy said. “She kind of steered me in the right direction.”

Both Amy and Myrna say one of their favorite parts about working with pediatric patients is seeing how strong and resilient children can be.

“Despite the fact that they’re in the hospital, kids are often smiling and happy,” Amy said.

It’s also been fun for the mother-daughter pair to see how OHSU Doernbecher has changed over the years. When the new hospital was completed in 1998, Amy gave her mom a tour.

“This place is amazing now,” Myrna said. “When I worked here, we were two little floors – our own little unit. It’s wonderful to see the amazing facility today.”

The two are holding out hope that their family legacy – which started with Myrna’s stepmother – will continue with one of Amy’s daughters.

“We’re hoping for a fourth generation,” Amy said.


We’re hiring nurses for a variety of clinical areas at OHSU. Learn more here.

Big gains for the littlest babies

The Neonatal Intensive Care Unit (NICU) at OHSU Doernbecher Children’s Hospital is a special place ­­– full of challenges, innovative technology and, perhaps most importantly, hope. Ranked among the nation’s best children’s hospitals by U.S. News & World Report in multiple pediatric specialties (including neonatology), OHSU Doernbecher has come a long way in the last 90 years.

Below, we learn more about the first complete premature unit (or “preemie nursery,” as it was known at the time) in the Northwest from a doctor and a nurse who helped make it all happen: Dr. S. Gorham Babson and Nurse Betty Weible.

Dr. S. Gorham Babson examining a young patient

A self-described “farm boy” who grew up on an orchard in the Hood River Valley, Dr. Babson knew from a young age that he wanted to work with children. He went to the University of Oregon Medical School (now OHSU) and completed an internship at Multnomah County Hospital, where he was encouraged to pursue his interest in pediatrics.

“After enjoying Doernbecher tremendously, I was more convinced that pediatrics was the field of choice, and I applied to go to Columbia Presbyterian Medical Center in New York,” he said. “It was the largest and newest medical center in the world.”

After his training at the Babies Hospital in New York, Dr. Babson moved to Stanford as a senior resident. He ultimately brought all of this specialized training back to his home state, setting up a private practice in downtown Portland, where he cared for children from about 1940 to the 1950s, while also training residents, interns and students at his alma mater, the University of Oregon Medical School.

“At the time there were only six or seven pediatricians in this whole area,” he said. “I never refused a house call.”

Though Dr. Babson was willing to see every young patient – he preferred caring for infants under the age of 2 – he started to specialize in the care of newborns.

Then came the call that would change the course of his career – and the course of neonatal care in the region.

“I remember it well. I got a call in my downtown office from Shirley Thompson, R.N., Superintendent of Doernbecher Hospital. I can’t tell you how exciting that call was. She asked me to help her nurse [Betty Weible], who had been sent to Los Angeles County Hospital with its huge nursery, to learn about premature care,” he said. They were hoping to set up a new preemie wing at Doernbecher and Thompson was looking for someone to be the medical advisor.

The need for this specialized care was clear, recalls nurse Betty Weible in a 1999 interview: “[We] had begun to realize that we were saving more of the tiny babies – the lower birth weights and shorter gestation were surviving the deliveries – and that they really needed to be in a protected area where they could get the specific kind of care that they required.”

Nurses Betty Weible and Shirley Thompson

The 10-incubator preemie nursery opened in January of 1950. Prior to this, there was only room for one or two incubators on the fifth floor of Doernbecher – the additional incubators provided the capacity needed to accept babies from outside Multnomah County Hospital.

“After three months, we were accepting preemies from all hospitals in Portland,” Dr. Babson said. “In a year we were sending our nurse with her carrying incubator to Salem, Eugene and other hospitals in Oregon.”

Dr. Babson and his team quickly realized that, as the only preemie center in Oregon picking up infants from outside the hospital, they had to get organized in order to provide better support for babies who might need special medicine or intubation while in transit.

“We had only been accepting babies that had stabilized in their referring hospital. It suddenly became clear to us that we needed to get there sooner,” Dr. Babson said. So they started sending their nurse, resident (and later, fellow) to the delivering hospital to bring the baby back to Doernbecher for specialized care.

A Portland car dealer provided a Chevrolet van, which the team equipped with a modern incubator. Dr. Babson also helped develop a system of supplying needed fluids and glucose via scalp vein insertions, which all nurses were soon trained to do. By the 1960s, Dr. Babson and Nurse Weible were overwhelmed by their success.

“We saved [more than] 500 infants under 1,500 grams (3 pounds, 5 ounces) in the first 15 years,” Dr. Babson said.

By the mid 1960s — thanks to the Doernbecher Hospital Guild’s (now the Doernbecher Children’s Hospital Foundation) successful fundraising efforts and better management of investments — there was funding available to invest in a priority project at Doernbecher. Babson made an appeal for the creation of Oregon’s first neonatal intensive care unit, and the 24-bed NICU was opened in 1967.

In the 1970s, transporting patients took off – literally – with the use of Huey helicopters.

By 1972, the demand for neonatal care was so great out of the Portland area that further modifications to the transport system needed to be put in place. In order to reach more families in less time, they started sending nurses and doctors to the referring hospital by air.

“This was obtained by the use of Huey helicopters provided by the National Air Guard,” Dr. Babson said. “By 1974, we increased the air transport from zero to one-third of all admissions to the unit. These admissions were from the coast, Eastern Oregon and Southern Washington.”

Over time this evolved into PANDA (Pediatric and Neonatal Doernbecher) Transport, which provides high-level quality ICU care for critically ill and injured children during inter-facility ground and fixed wing transports. Our PANDA team strives to be the best pediatric/neonatal specialty transport team serving our region – a mission that Dr. Babson and Nurse Weible surely would approve.

Today, OHSU Doernbecher continues to offer the most advanced neonatal intensive care in the region, serving patients from across Oregon and beyond. We are proud to be one of the top pediatric neonatal programs in the nation. Learn more about our NICU here.


This blog post drew heavily from quotes collected in two Oral History Project interviews conducted by Heather Rosenwinkel in 1999, which have been condensed and edited for brevity. You can read Dr. Babson’s full interview here and Nurse Weible’s full interview here. Many thanks to OHSU Historical Collections and the Doernbecher Children’s Hospital Foundation for their research assistance.


Related reading

Swimming in the NICU
Once upon a time: Mae Lin’s Doernbecher story
It’s a roller coaster ride: One mom’s NICU experience
A note of thanks from 8-year-old former NICU patient Elle

Growing up at their own pace

This article was written by Carin Moonin and originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine.

All kids aren’t on the same schedule – and that’s just fine.

Puberty isn’t an easy time for anyone. And if a child is small or tall for his or her age, then it can be even more difficult. But when should parents be concerned about their child’s growth spurt – or lack thereof?

If your child is short, the most common reason is genetics: Short parents usually have short kids, says Katie Woods, M.D., a pediatric endocrinologist at OHSU Doernbecher Children’s Hospital. Parents concerned about how their child is growing should talk to their pediatrician and consider seeing a specialist if their child’s height is below the third percentile on the Centers for Disease Control and Prevention growth chart, or if their child’s growth rate is slow – for example, if they had been above the 75th percentile but are now at the 25th percentile.

Doctors will first examine the child for other health issues that might be affecting height or weight gain, such as chronic illness, malnutrition, kidney disease or a gastric illness that prevents food absorption, such as celiac disease. Hypothyroidism (an underactive thyroid gland) can cause a child to gain weight but not height. Growth hormone deficiency is another condition that doesn’t usually show symptoms other than lack of growth. If tests show growth hormone deficiency, doctors will check the pituitary gland to look for an abnormality that may be affecting hormone production.

Usually, most growth disorders can be successfully treated. Hypothyroidism can be addressed with thyroid hormone supplements; growth hormone deficiency gets treated with a daily injection of growth hormone.

The same genetic principle goes for the onset of puberty, too: If a parent hit puberty later in adolescence, then the kids will probably have to be patient, too. The average age girls begin puberty is 10-11 years old, though the range is about 8-13. For boys, puberty starts at 11-12 years old on average, with a range of 9-14. Children grow very fast in puberty, and when puberty is late, they may be much shorter than their classmates.

“Constitutional delay, also known as ‘late bloomer’ syndrome, is common and nothing to worry about,” says Dr. Woods. “If a child has typically been at a lower percentile on the growth chart, or was underweight in childhood, they may be late bloomers. Eventually, when puberty kicks in, the child will catch up in height.

While the physical issues get addressed, parents shouldn’t forget the emotional ones. Middle school is a tough time for everyone: That’s when kids needs parental support the most, Dr. Woods says. “Make sure to promote self-esteem in the child; kids will pick on something, whether it’s height or hair color. Give the child reassurance that he or she is normal and healthy. The attitude of the parent has a huge effect on the child.”

If you have concerns about your child’s growth, talk with your pediatrician or call Doernbecher at (503) 346-0640. 

Suggested reading:
The Talk: Let your kid’s questions be the guide

Bends in the road

Below, Doernbecher dad Jerris Marr shares his family’s incredible journey – and invites you to help make a difference in the lives of other patients and families.

Throughout life’s journey there are bends in the road that you never see coming.

July 2007. During a family vacation, we noticed that our 4-year-old daughter Faith’s back was not bending as it should; she frequently complained of pain. At one point, when lightly wrestling with her brother, she screamed in pain at light pressure in the same area.

August 2007. After multiple X-rays, MRIs, CT scans and visits with a myriad of doctors, we found ourselves facing an eight-hour surgery to remove a portion of a vertebra, due to a bony growth.

Entering the recovery room following the surgery was terrifying. Our job as parents is to protect our children. Here was our baby, in horrible pain, with an incision from her sternum to her waist, another from her belly button around her side to her spine and a third across her lower right rib cage where a rib was removed to help repair the vertebra. This was the first of four major back surgeries that she would have within the year.

September 2007. We had been home from the hospital just a few days when the doctor called and requested an immediate, in-person meeting. No information was provided – our hearts sank.

Upon arrival we were informed that detailed testing of the bony mass removed from Faith’s vertebra confirmed that she had low-grade bone cancer. Due to several factors, her situation was incredibly complex and unique, with no treatment protocol established.  

I’ll never forget looking at Faith, sitting there in a wheelchair after such an invasive surgery. Life had just skidded off the road and crashed in a heap of pain, uncertainty and tremendous fear.

We challenged our doctor to consider all possibilities – to fight, just as we were prepared to do to save our Faith. We agreed to outline our options and meet again in a few weeks to set a new course of action.

In the next five years, Faith underwent numerous surgeries, adult doses of chemotherapy and radiation. We received treatment from specialists in multiple care facilities in Portland and Boston.

April 2012. Our Faith was declared a SURVIVOR.

Faith is with us today because of the OHSU Doernbecher team. Throughout the journey, Doernbecher has been exceptional in all aspects. Regardless of a care team member’s role, they demonstrate a genuine warmth, compassion and commitment to help. We faced many unexpected challenges during Faith’s treatment. Some continue today. The staff at Doernbecher remain connected to Faith’s care and well-being, ensuring that she is receiving necessary ongoing treatments, even when she’s not in their direct care. They are not just her doctors; many have become family to us.


The OHSU Doernbecher Childhood Cancer Survivorship Program is a critical element of the comprehensive care of childhood cancer survivors. The physical, emotional and developmental challenges associated with not only the illness, but also as a result of the treatment, require ongoing care long after the primary treatment is completed.

Right now, the Survivorship Program has a wonderful “problem:” More children are long-term survivors of their cancer than ever before. Having experienced a greater than 200 percent increase in the number of visits per year since 2013, the clinic has inadequate financial resources to optimally support its current patients or to grow its program to meet the needs of its many future survivors.

On September 23, we kick off Survive 47.8, an event that will challenge a diverse group of athletes to navigate the Grand Canyon from the south rim to the north rim – and back – without stopping. This is 47.8 miles logged in extreme elevations.

Most people complete this challenge in two or three days, but we’ve challenged ourselves to complete it within 24 hours. The physical and emotional challenges will be incredibly difficult, but pale in comparison to what the children and their families face when fighting childhood cancers.

We step into the canyon with a goal to raise $1,000 per mile – $47,800 in total. All of the donations raised will go directly to the OHSU Doernbecher Childhood Cancer Survivorship Program. Please join us in reaching this goal. You can further explore our journey, upcoming fundraising events, donate directly and learn more about our inspiration at

I will never forget 2007, and the five years following it: watching my daughter suffer, hearing there was nothing I could do. Thanks to Doernbecher, I believe there is always something we can do as a community to continue to fight cancer.

Learn about upcoming Survive 47.8 fundraising events – including a wine tasting at Rallison Cellars in Sherwood on Sunday, July 31 – and more ways you can support Survive 47.8 efforts here.


With Pokémon, not everything’s a ‘go’

Do your kids have Pokémania? Parents have a lot of questions about Pokémon GO, the latest augmented reality gaming sensation. With some headlines touting the benefits of the game and others bemoaning its risks, it can be difficult to dispel what’s best for you and your kids.

Below, OHSU Doernbecher Tom Sargent Safety Center Director Dr. Ben Hoffman shares some safety tips and considerations for kids and grown-ups alike.

Be aware of physical boundaries

One of Pokémon GO’s perhaps inadvertent health benefits is physical exercise – movement is a critical part of the game as players must physically be near a Pokémon in order to “catch” it. I’ve talked to kids who’ve walked up to seven miles in a single day playing the game – that’s great!

But it’s important for kids and adults to know how far they’re going and to recognize their limitations, both in terms of parental permission and personal fitness. You don’t want to find yourself in a position where you’re unable to get home safely.

Because it’s summertime, it’s also really important for families to take additional safety precautions to avoid sunburn, heat stroke, dehydration and other incidents that are more common this time of year. You can find a list of our summer safety tips here.

Be aware of personal boundaries

Pokémon GO has given families a great excuse to get out and spend time outdoors together. It encourages you to explore places you haven’t been before – if you can do that in a safe way. The inadvertent exercise is an added bonus!

That said, remind your kids to be respectful of others and of the environment they’re in. Your playing this game should not interfere with passersby, and you need to be aware of dangers with traffic or with public transportation. Take time to assess your surroundings and any potential safety hazards – both for you and for others around you.

Don’t play Pokémon GO while crossing streets, in dimly lit areas, in rough terrains that may pose danger, while in the vicinity of public transportation (especially MAX), on private property or, perhaps most importantly, while driving.

Prior to Pokémon GO, we knew that distracted driving was equivalent to having a blood alcohol concentration (BAC) of 0.08%. Using your phone for any reason while driving puts you, other drivers and pedestrians at risk.

Distraction is a potential safety issue even when kids are paying attention. If there’s one thing I’d like parents to know, it’s this: Try to avoid moving while you’re staring at your phone.

You don’t need to be walking to catch a Pokémon, so find a safe place to “pull over” and stop before proceeding with the game. You can also adjust your phone settings to vibrate when there’s a Pokémon nearby, so there’s absolutely no reason to be glued to your phone when you’re out and about.

Be aware of geographic boundaries

We’ve all seen recent news headlines about Pokémon GO users being injured or harmed while playing the game. As parents and guardians, we know that there are places where you and your kids should not go. Have a conversation with your kids about these boundaries, and set clear limitations on where your kids can and cannot go to search for Pokémon. There is no substitute for adequate supervision of kids of all ages.

It comes down to this: Just be smart. Please think before –and while – you play. Be aware that people have used this as an opportunity to lure bystanders into unsafe situations. If something seems not quite right or if it’s not a known quantity – if you don’t know it’s safe – don’t do it. There’s no Charmander that’s worth the risk!

The bottom line: Just be aware.

Prioritize your family’s safety above everything else. Despite the game’s tagline, you really don’t gotta catch ‘em all.

NOTE: In addition to the above guidelines, we ask that Pikachu-seeking visitors who find themselves on our OHSU campuses kindly respect our patients, families and employees by staying out of patient care and other restricted areas, and only parking in designated visitor parking. 

‘Grass Strong:’ Andy’s Doernbecher story

In December 2014, a sneaker wave hit 10-year-old Andy Grass and his brothers while visiting Rockaway Beach, Ore. The boys jumped on a log to avoid the sneaker wave, but Andy fell and the log rolled on top of him, resulting in multiple serious injuries.

Below, Andy’s dad, Paul, shares how Andy’s hospitalization and prolonged recovery affected their family – and how it continues to teach all of them strength, resilience and healing.


Our world was forever changed on December 24, 2014. And while our story will be told with a happy ending, it began with the most terrifying experience we could have ever imagined. It has been 18 months since Andy’s accident, but the memory of finding our son trapped under log is hard to erase from our memories. After we were able to dig him out from under the log and secure him to safety, he rested calmly in his mother’s embrace until the ambulance arrived. With broken bones all over his body and injured internal organs, Andy was able to save his last breath until he arrived at the hospital. As his second lung was collapsing and his world was about to go dark for many days his final words were, “What did I get for Christmas?”

I will never forget the words from his trauma doctor at OHSU Doernbecher when we arrived at the hospital that evening. They were: “Andy has a very good chance of surviving if he makes it through the night.”


The words were impossible to process. My wife and I struggled with the reality of the accident for 24 hours – from shock, to disbelief, to immense emotional pain. In the early hours of December 25 – Christmas Day – my wife, Anna, posted a message on her Facebook profile. It simply said, “Andy has been in an accident. Please God, let him live.”

From that moment on, the outpouring of support for Andy from family, friends and even complete strangers is what kept up our strength for the next three weeks in the hospital. We received hospital visits daily, meals for our family and enough words of encouragement to last a lifetime. The support came from school teachers, church friends, our Murrayhill Little League baseball community, the doctors and nurses at Doernbecher, and so many others. In particular, his Aunt Peggy (who ultimately succumbed to breast cancer at age 36 – six months after Andy’s accident) was a tremendous source of inspiration and comfort as they both battled their own situations.

When Andy was released from the hospital we were told his recovery could take up to two years or longer. Over the last 18 months he has endured more doctor’s visits than any kid deserves and has been through at least 100 physical therapy sessions. He went from bed, to wheelchair, to use of a walker, and then slowly to unassisted walking and now running.

His progress is a testament to his positive attitude, his “never give up” mentality, and his physical therapist (Kandice at ADAPT Training), who gave him the strength and encouragement on the rare days he couldn’t find it himself.

Andy is now back to playing with friends, hitting baseballs and shooting jumpers on the basketball court. Working with Nike and OHSU Doernbecher as a Doernbecher Freestyle patient-designer has been a wonderful time of reflection and healing for Andy and for our entire family as we continue to remain “Grass Strong.”

Learn more about “Grass Strong” and how the Grass family’s community rallied around them here (via KOIN News). Then, get to know 11-year-old Andy and the rest of this year’s incredible Doernbecher Freestyle patient-designers. We hope we’ll see you at this year’s collection reveal and auction on October 28!

Doernbecher Best in the Country U.S. News & World Report


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