| April 8, 2004 Thursday Day +35 of Transplant It has been a long week with our daily trips to Ann Arbor. Paige finished her second and final day of the MIBG scan. She woke up in a great mood from the anesthesia and has been goofy and playful all day. After the scan she had labwork drawn and a clinic appointment to see her doctors. As I mentioned last week, the repeat CTs showed no change in the lesions (tumors). The results were the same for the MIBG. All of the previous lesions remain, and no new lesions were noted. The question of surgery is still way up in the air. The surgeon remains out of town, so hopefully we'll get his decision by next week. We haven't decided what to do if he decides that the primary adrenal tumor is too involved for him to remove. There is a surgeon at Sloan Kettering in New York who is known for his work with neuroblastoma tumors. One of the doctors in Ann Arbor trained there and referred to him as "magic hands." The studies are so limited and many experts in neuroblastoma question whether or not surgery on stage IV neuroblastoma patients is even beneficial. We'll just have to wait and see what unfolds this next week and go from there. For now, the plan is to repeat the scans in late May in preparation for MIBG therapy in early June. I'll have more on the MIBG therapy posted soon. Since the results of the bone scan scheduled for tomorrow won't change the treatment plan, they decided to cancel the test. Because of the aggressive nature of neuroblastoma, and the fact that she couldn't tolerate the Accutane, they decided to start her on an oral chemotherapy drug, Etoposide (VP16). The pharmacists at Hurley were kind enough to get the prescription ready in just a few hours. The biggest problem is getting her to take it now. Because of the dosage she requires it has to be specially mixed and is available in liquid only. Paige would take ten pills before taking the liquid form. We tried mixing it in everything from juice to Coke without her seeing it. She would turn her head and push the cup back toward us, "Don't like medicine." I'll try again tomorrow and see how creative I can get. Until May, unless we run into unexpected problems, they said we could continue with our clinic visits and labwork at Hurley. That was a positive note in our day. Don't get me wrong, everyone at the University has been so wonderful. But, Hurley is home for us and we truly miss everyone who has taken care of Paige. We look forward to coming back :) Have a Wonderful Easter! Love, Andy, Sandi & Paige |
| Saw this quote and thought it was perfect... I know God will not give me anything I can't handle. I just wish that He didn't trust me so much Mother Teresa |
| Labwork 4-8 WBC 5.4 (5,400) Hemoglobin 10.8 Platelets 129,000 ANC 3,700) |