Sue: When my son Andrew was four, he was diagnosed with T-cell lymphoblastic leukemia. He had a cough, and then we discovered an infection and tumor in his lung. Dr. Tilford has been Andrew's doctor since then.
Andrew: I remember things in bits and pieces, like my parents taking turns to stay at the hospital with me, and the nurses being really nice and taking care of me well. And I remember that every morning I got Cheerios.
Sue: Because Andrew had this type of cancer, it spread to his brain; he needed cranial radiation. This led to him developing some learning disabilities. Teachers like Debbie Mettler, one of the teachers in the Hospital School Program, were so valuable in giving him extra help. Andrew was also able to take part in a clinical trial at Doernbecher on cognitive remediation, which helped with memory and problem-solving.
Andrew: I also worked with Robert Butler, who brought me back up to speed for school. I remember working with him and also with Izetta, a cancer counselor; I could tell her about the things that were bothering me. Because at four years old, I didn't understand why I was being poked and prodded and had to have shots and certain drugs that sometimes made me feel funny. It was nice to have someone to talk to about what was going on.
Sue: Andrew is now 22 and a recent graduate of Portland Community College. He's also got his black belt in karate.
Andrew: Back when I was going through treatment, it never crossed my mind I would have graduated college and have a black belt. I've been doing martial arts for eight years, and now teach classes twice a week. I truly never thought I would be doing the things I do now.
Sue: One of those bittersweet things about childhood cancer is that the end of treatment isn't the end. It's a start of a new lifetime journey with survivorship, and all the issues which could happen. Andrew goes back to Doernbecher regularly for all of his follow-up appointments and to take part in the Doernbecher Survivorship Program.
Andrew: The Survivorship Program is pretty cool. I like that I have my own special team. I get seen by about five different people when I go, and I get a thorough checkup that doesn't leave any bases uncovered. I go to Dr. Tilford for yearly checkups, and I see the Survivorship Program team every three years.
Sue: The program offers all this incredible care, all in one place. It's so comprehensive; every part of your mind, body and soul is evaluated. Everything from cardiology to endocrinology and more. It's one thing to check lab work, but another to have a dentist take care of any concerns. Or to have someone to talk to about psychological and social issues. After his appointments, we'd leave Doernbecher with pages of notes to follow up on—I'm a nurse, and even as a nurse and parent, these were things I hadn't yet thought about.
Andrew: Doernbecher is a really great place. I've been going for years now and have received exceptional care. I'm always comfortable when I come in and I never feel like my doctors will miss something; they ask the right questions.
Sue: We've known a lot of caring, wonderful nurses at Doernbecher—you develop relationships when you are there for a while. I tell Dr. Tilford he saved Andrew's life. He is superb: always patient, reassuring, willing to answer questions and supportive.
So many of the staff is so generous with their time to share their knowledge and experience. Like Dr. Sue Lindemulder, who leads the Survivorship Program. She's really involved in the community, and gives frequent talks about survivorship issues to our support group of people who have kids with cancer. Sue Best is a social worker that's also joined us to share her expertise, along with Debbie Dwelle, who's a psychologist. Kathy Perko is a nurse practitioner who does so much to help families. We run a camp for families who have a child with cancer, and Dr. Linda Stork comes out every year for an evening. I see her dedication and willingness to help families beyond her role in the hospital.
All of them, and the whole survivorship team, are all a vital part of our community. They are truly remarkable people and deserve the highest praise. As a nurse, and one who works for the Leukemia