| May 18, 2004 Tuesday Paige had her appointment yesterday with Dr.Yanik. It was obvious to him, as well as us that her disease was progressing very rapidly. The CT scans showed a significant increase in the number and sizes of lesions in her body from head to pelvis and clinically her bone lesions are more painful. He was very saddened to see how quickly Paige has progressed and said that he hadn't seen someone with neuroblastoma this aggressive and so resistant to every treatment that was given. Because of this, the total amount of tumor she has, and the amount of pain medication she is receiving, he felt she would not tolerate the dose of MIBG needed to be of any benefit. And with the time of isolation she would require due to radiation, we could not be with her if something would happen. A very kind, loving, and compassionate physician, Dr.Yanik said there was nothing else that can be done. He was nearly as tearful as we were. We knew MIBG therapy would not be possible if Paige progressed and other chemotherapy may be needed to gain some control, but Paige's disease is so aggressive that the risk/benefit of chemotherapy is not an option. Last week we met with him and had a heart to heart talk. We told him that as Paige's parents we could not make the decision to stop treatment as long as options were being offered. He said we wouldn't have to make that decision and that if he and Dr. Inoue felt the treatments would only cause Paige pain and suffering then they would tell us. So, unfortunately this is where we are and needless to say there are no words to express our sadness. It wasn't until late this afternoon that we were able to talk to Dr. Inoue and Mary about what's transpired over the last few days since they were out of the country. Of course they are so sad, but agree with our decision. Over the last 12 hours Paige has had a marked increase in her forehead swelling that has extended down between her eyes. With the amount of metastasis to the orbits it's of great concern that that eye area will become larger and even more painful with possible eye protrusion. For this reason, Dr. Inoue contacted Dr. Akl, the radiation-oncologist, who wants to see us in the office early tomorrow. He will evaluate and decide if radiation could help with the pain. Otherwise, her pain seems well managed on the continuous amount of morphine and we always have the option to increase as needed. Well, what else can we say. Over the last ten months we've made decisions regarding Paige's treatment that we felt in our hearts were the right thing to do and we have not regrets. But, now it's our love for her that's led us to this decision. The only thing we can do is keep our faith in God that He will continue to help us through this most difficult time. We are forever grateful to our family and friends for their continued love and support. Love, Andy, Sandi & Paige |