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2-2-04 New complaint of pain. Repeat MIBG/CT scheduled for this week 1-29-04 Generalized Update 1-23-04 Home after being hospitalized for a fever 1-20-04 Remains in hospital. ANC 120. Blood Transfusion for Hgb of 7.8. Started on TPN (IV nutrition) for poor appetite 1-19-04 Admit to Hurley for temp 103.6 for IV antibiotics. WBCs 0.5, ANC 275 1-10-04 Returned from Disney. Admit for Chemotherapy |
| 2-21-04 Significant changes....too many to list :( |
| 3-4-04 Day 0 Stem cells given at 11:30 a.m. 3-2-04 3-1-04 Finished 4th day of chemotherapy. Tolerating well |
| 3-17-04 Day +13 Plan to discharge Friday :) 3-16-04 Day +12 Labwork is looking good 3-14-04 Day +10 ANC 1,200 :) Resting comfortably |
| 4-1-04 Day +28 CT done. No results yet. Blood transfusion tomorrow at Hurley 3-31-04 Day +27 New test dates. Clinic appointment 3-27-04 Day +23 Accutane started. Clinic appointment |
| 4-5-04 Day +32 Discontinued Accutane due to reaction. Clinic appointment in Ann Arbor 4-2-04 Day +29 CT results. Blood transfusion at Hurley |
| 4-15-04 Day +42 Surgery tomorrow at 9:15 am 4-14-04 Day +41 Surgery planned for 4-16. Different MIBG results. Ice Cream Social 4-12-04 Day +39 Easter Weekend. Plans for the Ice Cream Social for Paige |
| 4-20-04 Day +47 Day 4 post-op. Positive blood culture. Feeling pretty good. Up to playroom 4-18-04 Day +45 Day 2 post-op. Temperature. Epidural discontinued. Platelet transfusion 4-17-04 Day +44 Day 1 post-op. Transfer back to regular floor. Doing OK overall 4-16-04 Day +43 Surgery was a success. Transfer to ICU for overnight monitoring |
| 4-8-04 Day +35 Scan results. Started oral chemo. Waiting for surgical decision |
| 4-28-04 Day +54 Third day of chemo. CT head/extremities to map out radiation areas for tomorrow. 4-27-04 Day +53 Rough day. Day two of chemotherapy. Pain an issue. Plan for radiation 4-26-04 Day +52 Admit to U of M for temp, pain control and chemotherapy 4-25-04 Day +51 of tranplant. Rough weekend due to pain. Clinic tomorrow for chemo 4-23-04 Day +49 Not a good day ;( Progression of disease noted. New treatment plan 4-22-04 Day +48 Day 6 postop. Good day overall. Home tomorrow on IV antibiotics |
| 2-6-04 **MIBG/CT show disease is worse. Start different chemo (Irinotecan/Vincristine) tomorrow |
| 5-9-04 Day +65 Admit to U of M for temperature and pain. Possible progression of disease 5-8-04 Day +64 Generalized update. Children's Miracle network radiothon 5-5-04 Day +61 Generalized update. 5-1-04 Day +57 Home after 3 days of chemo and radiation. MIBG therapy scheduled for May 19th |
| 5-15-04 Day +71 Discharged yesterday on morphine drip. CT results not good. 5-13-04 Day +69 Still in hospital. Pre-MIBG Therapy testing started 5-12-04 Day +68 Temp and pain. Hemoglobin 6.7 - received blood transfusion |
| 5-11-04 Day +67 Temp (104.5) and pain remain an issue. Plan for MIBG therapy on 5-19 |
6-14-04 Increased tiredness and more pale. Hemoglobin 4 - plan for blood transfusion tomorrow. 6-13-04 Generalized update. Radiation given for comfort 6-9-04 Increased pain and sleeping more 6-6-04 Generalized update 6-3-04 Increase in pain. Radiation given for comfort 6-1-04 Generalized update 5-27-04 Generalized update. Increase in morphine 5-25-04 Generalized update 5-20-04 Significant facial swelling. Radiation given for comfort 5-18-04 Appointment with Dr. Yanik and decision for hospice :( |
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| Journal Dates |
| Funeral arrangements Paige passed away early this morning ;( Seems different today. Increased repiratory and heart rate and increased generalized swelling Not doing well. Significant increase in facial swelling. Hemoglobin 3.9. Radiation and blood given Increase in pain in legs. Sleeping more. Hemoglobin 3.9 Happy 3rd Birthday Paige! Radiation to legs for pain :( Rough weekend. Having lots of pain in legs Generalized update. Hemoglobin 4.9. Blood transfusion |
| 3-13-04 Day +9 To OR for removal of broviac catheter and PICC line insertion. Diarrhea a major problem |