Dreams in Oregon

      

        I’ve been to Oregon (and Portland) three times - twice with Andrew and once with my friend, Trish. I have such wonderful memories here celebrating the marriages of good friends, exploring waterfalls, volcanic lakes, and lakes with mirrors of snow-capped mountains, and eating good food (especially donuts and ice cream). 

This trip, which has been different than any of my prior visits, started off much the same as we made sweet memories with Diana, my parents, and my sister, Lauren. This cross-country trip was never one I ever expected to do with Diana at her age, and at almost seven months pregnant, and while it wasn’t easy, Diana was a trooper and was relatively cheerful for the trip until her ears began to pop on the plane. After a long day of travel from the east coast to west coast, we relaxed at our Airbnb and ordered Chinese-Korean food for delivery. 

The next day (Tuesday), we woke up early, drove to the Oregon Coast, and explored Short Beach with Diana. It was a beautiful beach with large domes rising from the misty waters and sky and tidepools with starfish, sea urchins, and mussels. It was drizzling when we arrived, which made the tapestry of trees and bushes and wildflowers on the cliffside even more vibrant. Andrew carried Diana in a hiking backpack, but eventually we took her out so that she could walk along the shoreline, pick up smooth, black rocks, and play in the sand. She loved holding our hands and exploring, and since we equipped her with proper water shoes and water pants, she was able to touch the Pacific Ocean for the first time.

After the beach, we drove to the Tillamook Creamery. Diana has enjoyed Tillamook ice cream and cheese in North Carolina, but she got to enjoy all the dairy products straight from the source. We had lunch in their cafeteria and shared five large scoops of ice cream. Diana did her happy dance while eating her ice cream and while she loves all ice cream, I think she is becoming partial to chocolate.

On Wednesday, we spent the rainy morning at the Oregon Museum of Science & Industry (OMSI) with our friend from Duke, Allie. Andrew and Allie were in the same freshmen dorm and freshmen Focus group, and Allie and I spent the summer teaching 8th graders during our sophomore year. OMSI had an incredible play area for children with interactive and imaginative play stations, a lab where kids could build vehicles, a playground, and water tables. Allie’s son and Diana often veered towards different areas of interest, but we still found time to catch up and observe the sweet children at play. 

One thing that was really cool about the first half of the week - Diana seemed to be saying more words than ever, or at least, she was imitating us more than ever. Words like “yes,” “key,” “eyes,” and “duck,” popped up for the first time. She even said “Deb” - the name of Lauren’s duck stuffie, and then shortly after, “Duck.” She has also been mastering “thank you” in sign language, using it even when not prompted. It’s been amazing to see her learn and grow in such a short period of time. 

            We spent Thursday afternoon with the PKAN team at OHSU. Parents from the PKAN Facebook group had encouraged us to go, and we were so glad we did. On Thursday morning we met the whole team - Dr. Susan Hayflick, Dr. Penny Hogarth, Allison Gregory, Allison Freed, and Dr. Jenny Wilson. They were all so kind and generous with their time. They answered our many questions about Diana’s condition and symptoms, their research, their gene therapy, the upcoming clinical trial, and the food additive they have been working on. They provided us with helpful recommendations for management and treatment. But most importantly, they met with Diana and our family (grandparents and Aunt Lauren), listened with compassion, and encouraged us. 

            It was hard to hear that because Diana has classic PKAN, we could likely expect that we might see more prominent signs of dystonia or other PKAN related symptoms around age 3. They said that she “looks great” now. I wish she could look like this forever. I know that medical miracles exist - that people defy the odds and people and children do better than what is originally predicted. I long so desperately for that outcome - for her to have as much time as possible without symptoms, without pain, before the gene therapy is ready, and of course, that the gene therapy actually works. 

            On Friday morning, Diana participated in a gait study in the Movement Disorders Lab. Diana wore some sensors around her waist and feet and walked back and forth many times. We were so proud of her - she had a particularly strong walking day and showed off some of her best steps. We met more of the impressive people on the OHSU team and Dr. Hayflick generously gave more time to us to answer questions. 

            OHSU also drew some blood for Diana and did a skin biopsy for future research. We hate that these young children have to go through such poking and prodding, but we are hopeful that it will all be helpful in getting us all closer to a cure. Luckily, Grandpa had bought a Hello Kitty from the gift store, and so she got a treat for being so brave. It was so sweet to watch her hug and kiss her first Hello Kitty stuffie, especially since she adores her Hello Kitty sandals and shirts and stickers. 

            We ate at a Vietnamese restaurant for lunch and then headed to Powell Butte Nature Park to see if we could catch a glimpse of Mount Hood. It had been rainy and cloudy for most of the week, and we hadn’t been able to see the snow-capped mountain from Pittock Mansion the day before. Sadly, it was still too cloudy to enjoy the iconic mountain, but we all enjoyed the walk on the Viewpoint Trail. Diana loved seeing all the wildflowers and held onto a dandelion, Queen’s Anne Lace, and a purple flower during the walk. She happily kicked her legs under the trees and sun and wind.

            I’m so glad that we had my parents and my sister with us. They helped babysit and entertain Diana, carry her, take care of her, feed her, and encourage her during this whole trip, but especially during the appointments. We’re so lucky to have such a strong team of family and friends, and I think their love was so apparent to everyone we met. This cross-country trip wouldn’t have been possible without them.