| April 23, 2004 Friday Day +49 of Transplant Day 7 Post-op The last 24 hours have sent us in a direction we weren't quite expecting. Yesterday morning we noticed that Paige's forehead appeared more pronounced and by last night you could see new tumor growth. Right away our hearts sunk because we knew this was her disease progressing again right in front of our eyes. I think we felt every emotion you can think of - anger, frustration, sadness - you name it. If Paige sees us cry she'll reach over and pat your back, "It's OK." So we do our best to stay happy around her. It wasn't until this morning that we were able to talk with Dr. Yanik and Dr. Hutchinson and this is the plan ... Because of the effect of chemotherapy on healing and her recent surgery they want to give her a few more days to heal. We were discharged today and will continue on two different IV antibiotics at home. We will arrive at clinic early Monday morning (7:30) for labwork and then to the outpatient infusion clinic. They will give her two days on IV chemotherapy (Topotecan and Cytoxin). The MIBG scheduled for June has been moved up to May 19th (pending verification that the company can provide the IV MIBG). There are strict regulations that dictate that there must be a 22-day lapse between any form of chemotherapy and the MIBG therapy. They also said that if the frontal bone area progresses that radiation to that area could be an option prior to MIBG therapy. We were also surprised when we read the pathology report that showed the primary adrenal tumor was 80-90% viable. Here everyone thought they were removing a dead tumor and it's loaded with active neuroblastoma cells. We're so thankful it's out, yet baffled by the results. Also showing active cells were the nine lymph nodes and liver section taken during surgery. Our first question was if there are live cells then why didn't the MIBG pick it up, but we don't think anyone has the answer to that. Many of you might have noticed the link we added to an article on the MIBG therapy. While it states that a stem cell transplant follows the therapy this won't apply to Paige since she just went though transplant. There is a possibility she may require the infusion of previously stored stem cells following the MIBG therapy if her bone marrow is unable to recover on its own. Thankfully the stem cell harvest in October was successful and left us with an extra supply. We look forward to a nice weekend at home. Since Pop-pop has a few things to finish he will stay in Pennsylvania for now, and Nana will leave early Saturday morning for the trip up here. We're thankful they have the freedom to visit when they want. Of course Grandma will be here to help out as well. Unless there's a change in Paige's condition, Andy plans to return to work on Monday and Nana and Grandma will go to Ann Arbor with us. They said to plan for six to nine hours for the outpatient chemotherapy. Most likely we'll stay at the hospital hotel Monday night since we have to return so early Tuesday morning. Again we're faced with more adversity. Our only choice is to take this day to day and be thankful that they're still able to offer us treatment options. To look ahead and try to predict what will happen only brings us grief and sadness. We know that God will continue to give us the strength we need, for that's the only reason we've made it this far. Love, Andy, Sandi & Paige |