| April 2, 2004 Friday Day +29 of Transplant We arrived at Hurley early this morning for Paige's blood transfusion. Everyone was happy to see her and commented on how great she looks. Her appetite is still as strong as ever and she was up to 27 pounds, the most she's ever weighed. Besides favoring that right ankle she runs around, laughing and playing like a normal toddler. When we returned home around 4pm there was a message that they tried calling us with the CT results. I immediately felt my stomach drop. After paging them, she quickly returned the call to say that Paige's disease is "stable." Meaning that all the lesions (tumors) that were present prior to transplant remain, but no new lesions were seen. She said the primary adrenal tumor was noted to be slightly smaller. The fellow was calling us with the results since Paige's primary doctors are out of town until Monday. She mentioned that Dr. Yanik will be seeing Paige at her clinic appointment Monday and will be able to give us a better idea of the situation. Andy was still at work when they called, so here I was confused as could be. I didn't know whether to feel sad because all of the tumors are still there, or happy because there are no new tumors? So I paged Mary from the clinic at Hurley (also Dr. Inoue's wife). I always feel so much better after talking with her. She's very honest, but also very quick to remind us of all the miracles she's seen in her 30 years as an oncology nurse, so don't lose hope. We never lose hope, we just need a little boost now and then. Everything she said made sense. Of course it would have been great to see a significant decrease in the amount of tumor burden, but at least there's no new one's on CT. We're talking about a little girl who was progressing right in front of our eyes. The day Dr. Yanik gave us the choice of either transplant or hospice there were multiple small tumors that popped up on her head during our meeting with him. It was unbelievable. So, at least the transplant has stopped the progression and now we can look at other options for treatment. Looking back we realize that Paige probably wouldn't be here with us had we chose hospice. We know we made the right decision, and we'll keep plugging away at this horrible disease as long as there are options presented to us. We look forward to a nice weekend at home getting ready for Easter, which includes coloring eggs. If you remember her Valentine pictures, I'm sure the eggs won't be the only thing colored :) Thanks again to everyone for everything and please continue to pray for us. Love, Andy, Sandi & Paige Paige's test schedule for the next week 4-5 Hearing test at 10am. Labwork and meet with Dr. Yanik at 1pm clinic appointment 4-6 MIBG injection at 3:30pm 4-7 MIBG scan at 8am followed by a bone marrow biopsy while under general anesthesia and insertion of foley catheter for 24' urine. 4-8 MIBG scan at 9:30am followed by a consultation with the Radiation-Oncologist 4-9 Injection of dye at 8:30am followed by a bone scan at 11am. Also an ECHO while under general anesthesia |
| Labwork 4-2 (prior to transfusion) WBC 2.2 (2,200) Hemoglobin 7.9 Platelets 88,000 ANC 1,210 |
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