| February 26, 2004 Thursday Tuesday we met with Dr. Yanik at the University of Michigan in Ann Arbor to discuss treatment options for Paige. To us this meeting was the most difficult we've faced. He started by saying what we already knew. Paige's disease is progressing very rapidly and things aren't looking good. They offered us two different options. The first was to take Paige home with hospice care. His educated guess was that Paige would survive one to two months without treatment. The second is a stem cell transplant to try to gain some control of the disease, a palliative treatment. As we mentioned in the previous update, this will in no way cure Paige of this horrible disease. We discussed many of the side effects (some expected) and complications of the stem cell transplant process. We are aware Paige will become more ill than she has before and we're sadly aware that some patients don't make it through the transplant. Paige is a very active and strong willed little girl and we feel in our hearts that this is what we need to do. Dr. Yanik said in most cases like Paige, where the disease has progressed so rapidly and the chemotherapy has not been effective, the transplant option is not even offered. But, he felt he needed to offer this to us. He said there is a 50% chance the disease would continue to progress despite the transplant. God willing, if Paige would make it through a transplant Dr. Yanik would accept her into MIBG therapy. Since the University of Michigan is only one of three hospitals in the United States that offer this treatment they are booked until July. But, he said that if Paige is able he will figure a way to fit her in. Unfortunately, Paige has had a much less than expected outcome with treatment and by now she should have had surgery and the stem cell transplant. Since Dr. Yanik did offer us a treatment at this point we feel this may be our only chance to slow her disease. Today Paige started the first of four days of high (toxic) doses of chemo to wipe out her bone marrow along with her immunity, then three days of rest. On March 4th she will have her previously harvested stem cells infused, also known as transplant or rescue. The next few weeks will be the most critical. My mother and Andy's parents are staying here at the hospital. The hosptial conveniently has a hotel and it's only a two minute walk from the hotel room to Paige's room. Even though we've said it many times, we truely want to thank everyone for their prayers, love and support. With this, God will take care of us all. Lots of Love, Andy, Sandi & Paige Many have requested the address for Paige :) Paige Rutter F7689 CS Mott Children's Hospital 500 E. Medical Center Dr. Ann Arbor, MI 48109-0246 |