Doernbecher Freestyle: behind the scenes with Nike’s Carson Brown

Being nominated and selected to work on the Doernbecher Freestyle collection is a once-in-a-lifetime experience ­for our patient-designers, but it’s also special for the Nike employees who work with them. We sat down with Carson Brown, a graphic designer working with 8-year-old Isaiah (along with Celeste Rhoads, Aaron Reimer and Sara Cruthers), to learn why this program and this hospital are so meaningful to him.  

What was it like working with Isaiah? 

When our group first met Isaiah to go over his vision and direction, he had some pretty clear and creative ideas. It was a blast taking his sketches, notes and favorite things and merging them together into something special that ties the collection together. We had a few emails and meetings throughout this project to get Isaiah’s feedback to make sure our team was on track. The end result is something truly special and unique to Isaiah.

One of my favorite moments was when Isaiah came for his photo shoot and saw his products for the first time. His excitement was fulfilling. Another favorite moment was receiving a cool sketch Isaiah made (pictured here at right) that captured our first group meeting. 

What was your reaction to finding out you’d be working on this year’s Doernbecher Freestyle collection?

I was pretty emotional. This project means a lot to me and I know it means so much more to the families involved. When our son was born, he was diagnosed with Biliary Atresia, a disease that affects the bile ducts and liver. When he was 8 weeks old, Gibson had what’s known as the ‘Kasai Procedure’ to help repair his bile ducts. Over the next few months, we were in and out of Doernbecher many times and I’d always roam the hallways to get out of the room and get some air. Whenever I’d pass the Doernbecher/Nike display, I’d pause and read the amazing journeys of each child who participated in the project.

When Gibson was 6 months old, he was having some complications. My wife and Gibson were flown down to Stanford to be evaluated for a liver transplant. Within a few days of his arrival there, Gibson received a liver transplant. He’s now a healthy 2-1/2-year old, and we’re very thankful for that special gift of life.

Being a part of the Doernbecher Freestyle project is very special to my family and me. It’s one of the best projects I have been fortunate to be a part of, and I look forward to helping out whenever possible.

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In the coming weeks, we’ll be touching base with others working on this year’s Doernbecher Freestyle collection to learn what it was like working with Emory, Jacob, John, Kian and Lizzy. In the meantime, you can learn more about all six patient-designers here. Save the date for the big collection reveal at our auction on October 23!

11 things your ‘well child’ wants you to know

Growing up with an autistic brother had its fair share of rises and falls. But the impact he has made on my character, virtues and spirit continues to surprise me every day.

When I was around 12, I was traveling with my brother on a plane between my mother and father’s house. We happened to sit next to a very talkative woman. This woman, however, didn’t talk much about herself. In fact, I did most of the talking, because she was asking me question after question about my brother and autism. What foods does he eat? What grade is he in? Does he have friends? After our short flight was over, she said goodbye, shook my brother’s hand, and left the plane.

I remember waiting a few seconds, long enough for her to be just out of hearing range, and saying the one thing that I wanted to matter to her as much as my brother’s TV, food and social habits did: “My name is Antwon.” And as I watched my name, my identity, fade off into the space between us, I began my challenging journey to find my worth and identity in the monster known as Adolescence. I knew autism defined my brother, but I didn’t know it defined me, too.

‘Well-Sibling Syndrome’ not only encompasses the feeling of being “forgotten” because you’re lucky enough to be healthy, but also the guilt you feel because you’re lucky enough to be healthy, the burden of becoming an adult before your time, and the struggle to identify as more than “the other child.” As someone who has been blessed beyond measure to have a special needs sibling, and also the medium to discuss my experience, I’d like to offer up the following as things your well child may feel. These things may often go unsaid because of the guilt that accompanies the feeling of worsening your parents’ burden.

  1. Your well child has a very special relationship with your special needs child. I was building couch cushion forts with my brother while others could barely get him to reluctantly shake hands. And they were GOOD forts, too!
  1. Your well child will, at one point or another, harbor even a small amount of bitterness regarding double standards. “Why do I have to eat all my food? He didn’t!” “I always have to clean our room; she never helps!”
  1. Your well child will wonder if all of their activities and interests are placing an unfair burden on you. They want to protect you as much as you want to protect them, and they know you have a lot going on.
  1. Your well child worries that they will be responsible for your special needs child in the future. This didn’t hit me until I was much older, and to this day I plan my life and finances with it in mind.
  1. Your well child will wish the health and “cure” of your special needs child on at least one birthday cake. But they’ll lie if you ask so you don’t feel they wasted their wish.
  1. Your well child will need an “Elevator Speech” regarding his sibling’s condition. When one kid at school innocently asked me why my brother was so loud sometimes, I told him “It’s because he’s artistic.” “So am I,” he retorted, leaving me both confused and embarrassed.
  1. Even though they aren’t special needs, your well child needs reminders that he is special, too.
  1. Your well child has a lot of responsibilities – more than you know, and more than you impose onto them. We take our jobs very seriously!
  1. Your well child will learn that life is not fair long before other children do. And they can use your help remaining innocent and optimistic.
  1. Your well child will be picked on by a mean and probably compensating bully, and will use your special needs child as ammunition. But your well child will stand up for themselves, as well as their sibling. Be understanding, and use it as an opportunity to empower your child to stand up for what is right.
  1. And perhaps the most troublesome for my parents to learn years later: Your well child will feel pressure to be perfect, if only for a moment. It’s inevitable.

Studies have shown that there is monumental positive effect of being the sibling of a special needs child. These things include developing a level of maturity that is by far greater than our same-aged peers, increased “pro-social” (helpful/empathetic) behaviors, increased patience and tolerance of diversity and an increased sense of pride, loyalty and caring for our sibling (see #10 above). But it is important to realize that these virtues don’t come without a price.

I have to clarify that my parents did an amazing job raising us. I was cloaked in love and support, and I got to enjoy a carefree childhood, as circumstances would allow. But the struggles we face don’t always come from outside. They are often from within, existing as a subconscious reminder of who you are and what’s important to you.

I entered adulthood without regrets, a unique outlook on life, and the fort building skills of a king. I’d say that makes it all worth it.

Antwon Chavis, M.D.
Resident in Pediatrics
OHSU Doernbecher Children’s Hospital

Dr. Chavis has a wide array of interests, including working with teenagers, children with mental health concerns and children/adolescents with behavioral or developmental issues. He enjoys working with older children and their families because he gets the opportunity to educate the patient directly, as well as the family that cares for them.

Get smart, stay safe: a back-to-school checklist

Lunchbox? Check.

School supplies purchased? Check.

Perfect first-day-of-school outfit planned? Check.

Back-to-school season is, once again, upon us. Below, we share a few important health and safety tips from the American Academy of Pediatrics and Dr. Ben Hoffman, director of our Tom Sargent Children’s Safety Center. Add these to your back-to-school list!

  • Update your child’s vaccinations: Oregon state law requires immunization records for children attending public and private schools, preschools, childcare facilities and Head Start programs. Check with your child’s school district and healthcare provider to determine required vaccinations and ensure records are up to date.
  • Establish healthcare needs at school: If your child takes any medication, or experiences common health problems like severe allergies, asthma or physical restrictions, it’s a good idea to prepare your school nurse or administrator for potential health issues prior to the first day of school. Provide proper medicine and dosage information, as well as emergency and physician contact information. This will help ensure your child is properly and efficiently cared for in the case of emergency.
  • Prepare for an emergency: If your child receives afterschool care or attends a daycare center, the caretaker needs to be allowed to provide consent for your child’s emergency care if you’re unavailable. You can download and print our emergency consent form here.
  • Re-set the sleep clock: Defend yourself against difficult early morning wake-up calls by following these easy steps for resetting your ‘night-owl’s’ internal body clock.
  • Get the right fit (and we don’t mean OUTFIT!): Backpacks are an essential part of the school day, but carrying one shouldn’t hurt or cause long-term health issues. Make sure the straps of your child’s backpack are wide enough that they don’t cut into the shoulders. Further, the contents of the pack should not exceed 15 percent of the child’s weight. See more of Dr. Hoffman’s backpack tips here.
  • Confirm drop-off and pick-up procedures:If your child takes the bus or gets a ride to school, your family should establish safe, well-lit and visible pick-up/drop-off locations to ensure safety.
  • Brush up on bike safety: No matter how long or short their journey, kids should always wear bicycle helmets. Quiz your child on the ‘rules of the road’ to make sure they know to ride in the same direction as auto traffic, to use appropriate hand signals and to respect traffic lights and stop signs. Your child should wear bright-colored clothing to increase visibility – white or light-colored clothing and reflective gear are especially important after dark.
  • Talk the walk – and walk it, too: Make sure your child’s walk to school is a safe route with well-trained adult crossing guards at every intersection. Walk with them the first week until you’re sure they know the route and are comfortable with their pedestrian skills. Consider organizing a “walking school bus” (an adult accompanying a group of neighborhood children to school) or finding other neighborhood kids who will walk together. Bright-colored clothing will make your child more visible to drivers.

Interested in learning more? The American Academy of Pediatrics compiled a list of additional back-to-school health and safety tips.

An alliterative journey: on mental health, multidisciplinary management, medications, mindfulness and more

In this week’s entry, I am proud to introduce readers to a novel research project here at OHSU called Meals, Mindfulness and Moving Forward (M3). Before doing so, however, it’s important to talk about mental health, psychosis, and Oregon’s Early Assessment and Support Alliance – an essential partner in the M3 Pilot Study.

Mental health, the capacity to meet emotional and intellectual challenges at different developmental stages, is among parents’ greatest concerns. Thus, when a child, or more often an adolescent or young adult’s developmental path suddenly becomes fraught with obstacles – personality changes, memory problems, even hallucinations or unusual, frightening ideas – families are often alarmed and at a loss for what to do.

What I just described is what happens when young people are showing signs of psychosis. Psychosis is a generic term that sometimes refers to mania (characterized by an episode of extremely heightened emotion, diminished need for sleep, reckless behavior, rapid speech, thoughts that seem to dance from one idea to another) or schizophrenia (which may involve hallucinations, delusions, or a loss of functioning).

When a young person demonstrates these signs, families often wonder:

  • Will my child always struggle with this?
  • What can make this better?
  • What will make it worse?
  • Can my child achieve his or her dreams?

To this last question, a decade ago some brave Oregonians answered with an emphatic: “Yes!” This group, centered in Salem, Oregon, formed the Early Assessment and Support Team (EAST). EAST’s mandate was to research and implement best practices when it came to supporting young people impacted by psychosis.

Two of the central tenets of EAST were that the earlier we intervene with adequate treatment, the better, and that families, friends, and those surrounding a young person are not a barrier to recovery but are instead essential to recovery – no more treating individuals in isolation! Engaging families and providing good service coordination and nursing and psychiatric care, along with school, employment, and housing support helped young people get out of the hospital and stay out. They were working, learning, and growing. Well, word spread of EAST’s success and eventually EAST became EASA — the Early Assessment and Support Alliance, now active in nearly every county in Oregon. You can learn more about this unique, multi-disciplinary approach to mental health treatment at easacommunity.org.

One dilemma in EASA programming, which is shared with “early intervention” programs around the world, is that, while some young people achieve recovery without use of antipsychotic medicine, many individuals find antipsychotics key to overcoming challenges. Unfortunately antipsychotics usually promote weight gain and this side-effect, combined with decreased motivation or fear of leaving one’s home, can cause many young people significant, lifelong health problems. To meet this challenge, generous donors brought together Dr. Lynne Shinto, a naturopathic researcher in the Department of Neurology and me, a child and adolescent psychiatrist here at OHSU Doernbecher Children’s Hospital. Together with research coordinator Andie Thompson, MsCN, we built a lifestyles’ intervention program aimed at promoting resilience and fitness in young people impacted by psychosis.

In our study, we have partnered with the Clackamas, Multnomah, and Washington County EASA Programs to recruit 20 participants ages 15-25 and 20 study partners (individuals who may help the work continue outside of sessions) to come to OHSU’s Center for Health and Healing for a 6-week lifestyles training program that involves mindfulness meditation, yoga and other light activities, as well as hands-on cooking/grocery shopping instruction.

The primary aims of our multi-modal study are to find out if people show up and enjoy the sorts of activities we’ve planned. Meanwhile, we are also collecting data on weight and cholesterol, on psychiatric symptoms, as well as a self-report measure of resilience—one’s internal sense of being able to meet a challenging thought or interactions—which research suggests is enhanced by mindfulness meditation.

We hope that qualitative and quantitative data from this pilot project helps EASA and other early intervention programs develop creative means of engaging young people in healthier eating, activity and mindfulness practices. Click here to learn more about the M3 Study and our valued collaborators (including Street Yoga and local chefs Sonny DiMartini and Arielle Clark). Stay tuned for an update on our outcome measures!

Craigan Usher, M.D.
Clinical Associate Professor
Oregon Health & Science University
Consultant, EASA Center for Excellence at Portland State University

Doernbecher Freestyle: A physician’s point of view

Ten-year-old Emory was diagnosed with advanced chronic kidney disease last year. Her pediatric nephrologists, Dr. Sandra Iragorri and Dr. David Rozansky, were so impressed by Emory’s positive attitude, they nominated her for the Doernbecher Freestyle program.

We sat down with Dr. Iragorri to learn more about Emory.

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How does the Doernbecher Freestyle program benefit our patients?

Working with world-class sports apparel designers is a once-in-a-lifetime opportunity. Being selected for the program – and then seeing your work of art exhibited for everyone to see – is an amazing way to recognize the strength of what our children have to go through, and what we ask the families to go through. I think it’s a very nice way to recognize how much we value them as people and as families.

It’s also a wonderful way for Nike to give back to their community and to recognize the true spirit of the Northwest, of Portland, of children in general. It’s a very beautiful way to give back.

Why did you nominate Emory to become a Doernbecher Freestyle patient-designer?

Emory is a very lovely and articulate young lady, and she’s very obviously artistic and creative (just look at the kidney-themed drawing she made for Dr. Iragorri, below!). She has a very, very supportive and lovely family. I thought this was a nice opportunity to acknowledge and recognize Emory as a person who’s had to really learn to live with her recent diagnosis – It was like a bomb dropped in her lap, but she’s been extremely brave. She’s been very good about blood tests and daily injections and coming to see us. She just seems to fit the bill!

What do you like about working with kids like Emory?

I like to see them feel better and I like the connections I make with children and their families. This connection is from the heart, and it’s what keeps me going. Plus, kids are fun! You can be silly, and that’s always good.

Will you be at the Doernbecher Freestyle auction on October 23 to see Emory’s designs and cheer her on?

Yes! It will be my first time.

***

Meet Emory and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

Additional coverage: “Salem 10-year-old designs shoe with help from Nike” via the Statesman Journal

An important message from Doernbecher Freestyle patient-designer Jacob

Hello! It’s Doernbecher Freestyle patient-designer Jacob Burris here. My shoe designs are coming along great. I hope that they are going to blow your minds!!!

I wanted to share a little something about myself and other congenital heart defect (CHD) survivors. A lot of people tend to think that I am all better now, or “fixed” after my heart surgery. Well, the truth is that most people with a CHD have to take medicine to regulate their blood pressure, like me. Others may have to eat special diets or even have to limit their activity. It is really important for all CHD patients to have regular check-ups with their heart doctor throughout their entire lives. Even though a person may have survived their heart surgery, their life is still at risk

I survived my heart surgery and I still take medicine every day. I also check my blood pressure twice a week so I know if it changes. I didn’t feel any different when my blood pressure was high so I like to remind others to check their blood pressure because something could be wrong and you might not even know.

***

Jacob’s mom wrote a post about Jacob’s heart story, too. You can read that here. You can also learn more about Jacob and how he’s helping spread the word about heart health on his website or follow along on his “Jacob’s Heart Story” Facebook page!

Meet Jacob and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

Additional coverage: “Jacob Burris, 13, preaches blood pressure checks, adds ‘Nike clothing designer’ to his resume” via The Register Guard, “Local middle schooler designs Nike shoe to benefit Doernbecher” via Eugene Weekly

 

Jacob’s heart story

Burris FamilyBelow, Janice Burris shares her son’s Doernbecher story. Thirteen-year-old Jacob is one of our 2015 Doernbecher Freestyle patient-designers, and he’ll be following up next week with a post of his own!

***

Jacob was born a healthy baby boy thirteen years ago. He has grown up to be a great student, a dedicated athlete, and an all-around great person. Last May during a routine well-child/immunization visit to the pediatrician, we learned that Jacob had high blood pressure and a heart murmur that had never before been detected.

After follow-up tests were performed up at OHSU Doernbecher Children’s Hospital, Jacob was diagnosed with a heart condition known as a coarctation of the aorta. The aorta is the largest vessel attached to the heart. Jacob’s aorta had a pinch in it, much like a kink in a hose. The kink was causing very high blood pressure above the kink in his upper body, and simultaneously causing very low blood pressure below the kink, leaving his lower extremities in a state that is comparable to dehydration. In fact, the only way Jacob was getting any blood flow beyond his kink was by developing a bunch of small compensatory vessels beginning above the kink and ending below it. This was his body’s way of adapting to his specific situation in order to get blood flow to the lower portion of his body, and at that point it had been doing so for 12 years.

Last July, the cardiology intervention team at OHSU attempted to open up this kink by adding a stint. At this time, the intervention team discovered that what had been previously considered to be a kink was virtually disconnected, and repairing it would require heart surgery.

On September 5, 2014, Jacob underwent heart surgery. The incredible pediatric cardiac surgical team at OHSU successfully grafted a carbon-based tube in place of the disconnected portion of his aorta. The surgery itself took about seven hours and his recovery went well.

Jacob has since had two subsequent hospitalizations. Both were to remove fluid from his paracardium, which is the lining around the heart. During his time at Doernbecher Children’s Hospital, Jacob was nominated to be a Doernbecher Freestyle patient-designer by a member of our surgical team, Pediatric Cardiologist Dr. Rich Reed.

He’s doing great now and has since gotten all caught up in school with his peers and just finished up playing spring and summer baseball. Had Jacob’s condition continued to go on undiscovered/ untreated, he could have been lost.

Jacob really wants to help others who may be in danger of having a heart condition by reminding everyone to check their blood pressure regularly. A change in blood pressure is often the first indication something may be wrong with your heart. Detecting high blood pressure saved Jacob’s life and it could save the life of someone you love as well.

Here at home in Eugene, Jacob is an advocate for heart health awareness. All around town, Jacob passes out small pins that remind people to check their blood pressure. He’s also advocating for research to improve current newborn screening for CHD’s because his coarctation went undetected for so long. Jacob is honored to be a part of the 2015 Doernbecher Freestyle patient-designer team!

***

Learn more about Jacob and how he’s helping spread the word about heart health on his website or follow along on his “Jacob’s Heart Story” Facebook page!

Meet Jacob and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

 

Additional coverage: “Jacob Burris, 13, preaches blood pressure checks, adds ‘Nike clothing designer’ to his resume” via The Register Guard, “Local middle schooler designs Nike shoe to benefit Doernbecher” via Eugene Weekly

The power of pretend: Chelsea’s Closet brings dress-up and play to hospitalized children

For a hospitalized child, a chance to play, imagine and socialize is powerful medicine. Jason and Alison Hicks experienced this firsthand with their daughter, Chelsea, during her cancer treatments at OHSU Doernbecher Children’s Hospital. Below, Alison shares her daughter’s story and explains how the Chelsea Hicks Foundation is bringing joy to patients like Chelsea, one costume at a time.

***

When our two older daughters and Chelsea’s cousins visited her at Doernbecher, they brought dress-up clothes and tea party supplies. She transformed from a patient into a princess, a superhero or a monkey, and she was often spotted dancing in the hallways with a boa and tutu, trying to get other children or staff to play with her.

Dressing up changed Chelsea’s demeanor – she’d go from bored and isolated in her room to a state of pure joy when she dressed up. It didn’t take long before her dress-up and tea parties reached staff and other patients – children’s laughter is, after all, contagious! These moments provided respite from hospital rooms and worries about which treatment is coming next. Chelsea was known to show up for her clinic appointments dressed as something silly and spectacular to help her battle the “cancer bugs.”

Our daughter courageously fought Wilms’ tumor cancer for two years before losing her battle at the age of 5. We were heartbroken but inspired by her journey, so we started the not-for-profit organization, the Chelsea Hicks Foundation, and its dress-up and play program, “Chelsea’s Closet,” in 2009. We saw the power of emotional healing that went along with dress-up and play – this is what helped Chelsea during her treatments. We wanted to give those types of memories to other families going though extended hospital stays.

A rolling armoire stuffed with brand new costumes, accessories, shoes and wigs, Chelsea’s Closet visits Doernbecher Children’s Hospital every month, led by a team of lively volunteers.

During a Chelsea’s Closet visit, hospitalized children and their siblings, friends or family are able to leave their rooms and select a new costume and accessory to wear and keep. Volunteers lead the children in a musical hallway parade, and wrap up the visit with an imaginative craft and special snack. For older children and those confined to their rooms, volunteers always have special goody bags on hand, filled with nail polish, art supplies, stuffed animals and other treats. When they can, parents will often try to coordinate their child’s treatments around Chelsea’s Closet visits.8x10_1570 copy

In the six years since its inception, the Chelsea Hicks Foundation has been met with so much positive feedback from patients, their families and hospital staff that the frequency of visits has increased, allowing them to serve even more seriously ill children. CHF is committed to bringing the healing power of dress-up and play to even more children, through the help of volunteers and donor support. For more information on how you can help grow the Chelsea Hicks Foundation, please visit our website!

Fun in the sun that’s healthy for the skin

With the heat wave finally receding, now’s the perfect time to take your children outdoors and enjoy all the beauty of the Northwest. While staying active, experiencing nature and getting more vitamin D are all important for your little ones, it’s also important to remember sun safety.

The sun produces two main types of ultraviolet (UV) radiation that impact skin health: UVA and UVB. The two differ in their wavelengths – UVA has longer wavelengths – and some of the health effects, but both can damage skin. In general, most of the radiation we get is UVA, which is strongly associated with wrinkling and skin aging, and is also the type that’s found in tanning beds. UVB stimulates the skin to produce vitamin D, and tends to cause skin reddening and sunburn. Both types are implicated in skin cancer.

Skin cancer is the most common type of cancer, and tends to happen after many years of exposure to UV rays. Painful sunburns are much more likely to happen in children, so starting these sun safety habits early can help prevent problems later.

Infants 0 to 6 months: Avoid direct sunlight. An infant’s skin has less protective pigment (melanin) and is too sensitive for sunscreen.

  • Avoid walks between 10 a.m. and 4 p.m., the peak hours for UV radiation exposure, and use a stroller that has a sun cover.
  • Dress baby in lightweight clothing that covers the arms and legs, and a wide-brimmed hat. Baby sunglasses protect eyes and can be stylish at the same time

Infants 6 to 12 months: You can put sunscreen on your baby, but continue to avoid sun exposure through protective clothing and timing of outdoor excursions.

  • Use broad-spectrum, SPF 15+ sunscreen to uncovered areas such as hands, ears and the back of the neck
  • Apply sunscreen 30 minutes before going outside and reapply every two hours and after swimming or excessive sweating

Toddlers: Keeping sun wear on can be challenging. Consistent sun safety habits and simple education may help reinforce the routine.

  • Consider spray-on sunscreens for toddlers who won’t sit still. Don’t apply spray sunscreens directly to the face. Remember to reapply every two hours and after swimming or heavy sweating.
  • Encourage children to seek shade between 10 a.m. and 4 p.m.
  • Use cooling protective clothing, such as cotton. Consider clothing with an ultraviolet Protection Factor (UPF) of 30 or above.

Older children and teens: education and availability of sun protection are especially important at this age.

  • Keep sunscreen handy – for instance, in a school bag or next to the toothbrush.
  • Talk to your teen about the dangers of indoor tanning, and remind him or her that being tan is not the same as being healthy.
  • Be a good role model and protect your own skin!

 

Looking for more information? Learn more tips to protect your family from sunburns here and here. The Skin Cancer Foundation offers some excellent resources to help keep kids fit in the sunshine, choosing sunglasses for kids and more.

Jennifer Tsai, M.D.
Resident Physician in Pediatrics
OHSU Doernbecher Children’s Hospital

Our lemonade experience: the Charles family’s story

John Charles Blog

When he grows up, Doernbecher Freestyle patient-designer John Charles wants to be a pro athlete. (His favorite athlete? Damian Lillard, of course). He enjoys being outside, hiking and spending time with his dog, Teagan. Though you wouldn’t guess it by looking at him, John was diagnosed with Crohn’s Disease last year.

Below, John’s parents, Tony and Mary Charles, explain how John’s journey has impacted their family.

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When your 9-year-old child becomes progressively ill, is not eating and is losing weight, feels constantly tired and listless, is sent urgently to the hospital by your pediatrician and is subsequently diagnosed with a lifelong, chronic, and incurable illness that has significant potential complications long term, life kind of feels like it just served you a glass of pure, undiluted lemon juice concentrate – both for your child and for you as a parent.

Our son John was diagnosed at OHSU Doernbecher Children’s Hospital in 2014 with Crohn’s Disease, an auto-immune, gastrointestinal disorder characterized by symptoms too uncomfortable to describe in a blog unrelated to the specific condition. After four days in the hospital, a colonoscopy and an upper endoscopy (where the doctor passes a tube with a camera through the mouth, esophagus, stomach and into the small intestine), high doses of numerous drugs, including tremendously effective but highly toxic corticosteroids, our son finally started to feel better after months of having felt progressively worse.John Charles

John’s pediatric gastroenterologist at the hospital, Dr. Linda Muir, and the entire nursing staff at Doernbecher were simply amazing. Not only did they make John feel like he mattered, they demonstrated to all of us (John’s parents and his four siblings), that they cared. And they cared not just about John’s physical condition, but about John’s and our collective emotional state. They wanted to provide us with the information we needed to understand what was happening, to provide us the medical options in front of us and to ensure we had the support structure to cope with such a life-changing diagnosis. They recognized and helped us to recognize that the diagnosis had potential to impact not just John, but our whole family.

Dr. Muir has been so tremendously positive in her care for John. Through her encouragement, John has become faithful in taking his medicines (all 11 pills each day). Since his diagnosis, John has had one flare, which Dr. Muir got under control using steroids as a rescue medication. She explained that this was not uncommon and this helped John to understandJohn Charles Mariners the importance of adhering to his medication schedule.

Dr. Muir has been so invested in our son’s life and his well-being that she even nominated John for the Nike Doernbecher Freestyle program. After being selected this past spring for the fundraising program, John has been exposed to a remarkable experience, one that he hopes will help him to use his disease to build awareness of Crohn’s and to help other patients better cope with their diagnosis. The caring concern and attention we have received from Doernbecher, Dr. Muir and the staff have added large amounts of water and sugar to life’s offering, thereby significantly sweetening what otherwise could have been a bitter and sour experience.

***

Interested in learning more about Crohn’s Disease and connecting with others? The Crohn’s and Colitis Foundation of America (CCFA) is a great place to start.

Meet John and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – and save the date for the big collection reveal at our auction on October 23!

Additional coverage: “Hockinson boy, 10, designs Nike shoe for Doernbecher program” via The Columbian

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

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