February 13, 2008

We went back a week and a half later for the testing. We knew we would be there for 3 days this time while we waited for the test results.

The worst part of the morning was Chet getting his IV. His internal port was removed when he was four, and he doesn't remember the big pokes, and for the first time through any of this he really cried. He had an allergic reaction to the tape, and he is so sensitive to pain that he never got used to the IV being there. For him, the best part of the day was getting it taken out. Along with the blood tests, he was admitted to the surgical outpatient to have a bone marrow aspiration and bone biopsy. I was able to stay with him until the anaesthetic put him to sleep. The very first thing he said when he woke up was, "Can you take this IV out now?"

Because a bone marrow aspiration makes your hip sore, he rode in a wheelchair out of the hospital. Target was throwing a big Valentine's Party for all the kids and Chet wanted to go see what they were doing, so we stopped there on the way across the parking lot back to the hotel. He stayed in the chair for the most part, but when Beth asked him to take a picture with her he stood up, put on the silly red hat, and smiled for the camera. I thought that was really sweet of him. We didn't stay very long because the pain killers were wearing off and he wanted to be back in the room.

The doctors called us and asked us to come back to the clinic that afternoon. The preliminary results were back, and they found that Chet had developed PNH. He is no longer considered an aplastic anemia patient, and unfortunately the PNH is even rarer and more difficult to cure than the aplastic anemia. Worse, it has more life-threatening manifestations (blood-clots), and because it is so rare there isn't a lot of research on this disease. The biggest paper ever written on it is only 6 pages long. The worst thing about diagnosing a new disease is that the doctors have to tell you every worst possible scenario. I was given a lot of frightening information that afternoon, but the thing the doctors emphasized over and over is that although there are some scary aspects of this disease, Chet's case will be handled according to how it develops in him. At this point 20 percent of his cells are affected by the PNH, and although he has begun to develop jaundice which is typical in PNH patients, it doesn't show up physically in his skintone or eyes yet. On Friday, we went back and they confirmed that he doesn't have any cancers right now. At this point they plan on having bone marrow aspirations at least every six months, check-ups in the clinic at least every three months, monthly counts here locally, and ultra-observance to watch for blood in his urine, headaches or stomachaches that can indicate blood-clotting, and increased bleeding and petichaei.

We didn't have any appointments on the 14th while we waited for the rest of the results, so we went to Graceland. (Chet and Matt are both huge Elvis fans.) Graceland gives free admission to St. Jude patients and their families, and they are only ten miles from the hospital, so it seemed like an ideal way to spend the day. Chet, Beth and I had a lot of fun there, and it was a nice way to take our minds off the stress of the trip to Memphis. Chet wants to go back again sometime, and he wants to go see Sun Studio where Elvis recorded his first albums. I am so glad there are interesting things we can go do during the stays down there. It makes it easier to deal with the medical issues.

Here are some photos from Graceland.