| March 31, 2004 Wednesday Day +27 of Transplant We've had a few nice relaxing days at home. Besides it being a long day, the clinic appointment Monday was uneventful. We left the house at 11:00 a.m. and didn't return to Grandma's house until almost 5pm, where we celebrated Aunt Carla's birthday. Paige was so into the cake, candles and singing you would have thought it was her birthday. Paige's labwork was good and no transfusion was needed. They did draw a set of blood cultures since her temp was 100'. We assume they are negative so far since we haven't heard anything different. Over the last few days she has had increasing complaints of pain in her right ankle and has required a few doses of morphine. Last night she was up numerous times crying. She would point to her ankle and say "Get boo-boo out Mommy." Talk about a helpless feeling. It's just so unfair that she's going through this. There have been a few changes in her follow-up test dates. She's still scheduled for a CT tomorrow (head, orbits, abdomen, chest and pelvis). Her primary physicians will be out of town for a children's oncology conference, so they have arranged to have the fellow call us Friday with the results. Thank goodness, because having to wait until Monday would be so difficult. The mix of emotions that arise when tests are being done are indescribable. We received a call yesterday saying they have decided to do the MIBG scan next week instead of the end of April. So, by the end of next week we should know where we stand - how well she responded to the transplant, if and when surgery will be an option, and what other avenues of treatment they can offer us. I was talking with a nurse that has been very involved in Paige's treatment from the beginning. She said that if you read about the extent of Paige's disease on paper one could easily say, "What are we doing here? Why are we continuing to treat her?" But, once you see Paige and see how great she looks and feels, you know why. This is so true and it was such a relief to hear her say it :) God willing, we will continue to do whatever necessary to find a treatment that works for Paige. Thanks again everyone for your continued prayers, love and support. Andy, Sandi & Paige Paige's test schedule for the next week 4-1 CT of the head, orbits, chest, abdomen and pelvis 4-5 Hearing test, labwork and follow-up clinic appointment 4-6 MIBG injection at 3:30 p.m. 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. If anyone needs us you know where we'll be next week :) |
| Labwork 3-29 WBC 3.4 (3,400) Hemoglobin 8.3 Platelets 84,000 ANC 2,700 |