| February 21,2004 Saturday There have been so many developments in the last few days that I don't know where to start. On Tuesday we went in for a clinic appointment at Hurley. Because of her lab work and the drastic increase in pain in her left leg, Dr. Inoue had suspicions that the bone disease was progressing rapidly. He spoke with Dr. Yanik in Ann Arbor to discuss if other options were available. Dr. Yanik then needed and day or so to confer with his colleagues. In the meantime we were increasing her oral morphine with no relief. Friday afternoon we had spoken with Dr. Inoue and Dr. Yanik and were a bit surprised by their decision. They wanted to schedule Paige for stem cell transplant on March 1st in Ann Arbor. They felt that this was the only option to try to control the aggressive progression of the disease. Ideally, to try and reach a "cure" for neuroblastoma they would remove the primary adrenal tumor, wait a few weeks for her to recover and then go to transplant followed by radiation to the primary adrenal area. Surgery is not an option at this time. Of course we agreed to do whatever necessary. Then, within 10 minutes of that call with Dr. Yanik, he called back to say he was moving the admission for transplant up to next Wednesday (February 25th). I think a sense of panic set in for all of us. By late Friday afternoon I had called the clinic and spoken with Mary about our inability to control Paige's pain. We were giving her 5mg an hour by mouth with no relief. She immediately told us to come in so Dr. Inoue could see her. By the time we arrived at 5 pm they had decided to admit her. They started her on IV morphine and x-rayed her left lower leg to rule out a fracture. It showed a large lesion that wasn't present on the x-ray done January 30th. With this and the great amount of pain Paige was in he and Dr. Akl (the radiation onocologist) decided to do radiation on the leg for pain control. Even though the morphine (MS) dose was increased significantly she still had a very restless and sleepless night. The MS was discontinued and she was started on IV Fentanyl which controlled the pain, but also heavily sedated her. This morning at 9:30 am we were transported to via ambulance to Genesys-Hurley Cancer Center for radiation. The procedure itself takes a very short time but it was a full-scale production to get there. Due to the need for conscious sedation we were accompanied by a Peds ICU nurse, CRNA, Anesthesiologist and a Respiratory Therapist. Not to mention Dr. Akl and the staff at the radiation center came in on a Saturday to do. We were back at Hurley in about an hour and a half. Paige was very sedated, but has aroused frequently since. It is expected the pain should decrease in about 10 hours as a result of the radiation. We pray it will be effective. We are not sure if Paige will be discharged home before the admission to Ann Arbor whether it be Tuesday or Wednesday. In the meantime Andy's Dad, aka Pop-pop has returned to PA to catch up on matters there. Nana has stayed here. Grandma is spending the day with Daddy and Paige while Mommy goes home to begin to get ready for the time at U of M. Aunt Christina and the kids came up Thursday from Ohio for a weekend visit and are still here. Again, we are so grateful to everyone for their continued support. Thanks to the PA's at Hurley for covering for Andy. Not having to worry about our jobs is such a relief. As usual, Dr. Inoue, Mary and the Peds staff are so wonderful. Thank you to Margie Murray-Wright for making sure the transfer went smoothly. Kevin from respiratory for coming in for the transfer. Also, thanks to Cathy from Peds ICU and Anesthesia. Dr. Akl and the staff from the cancer center were so caring and comforting. Thanks to all of you from the bottom of our hearts. Please continue to pray for us. Love, Andy, Sandi & Paige |