| April 5, 2004 Monday Day +32 of Transplant It was another long day in Ann Arbor for appointments. The hearing tests went well considering. A few of the different chemotherapy agents Paige has been given have been known to cause hearing loss. At this point we haven't noticed any problems, they just wanted to compare to the baseline tests she had prior to starting chemotherapy last July. Actually, we feel she hears quite well. It's the listening that's the problem :) Kidding aside, Paige has had a few rough days. It appears that she cannot tolerate the accutane they started her on last week. On Friday, we noticed a few red spots on her head. Well, by this morning her entire head and face was covered with rash, sores, welts...you name it. She looked miserable, but this was the least of our concerns. The literature for accutane states that on rare occasion it can cause psychotic, aggressive and violent behavior. Well, by the middle of Sunday night she was so out of control we were literally holding her down so she wouldn't hurt herself. She was hitting and scratching herself, and worse of all trying to pull out her broviac catheter. Because of jury duty Dr. Yanik was not available, so we met with Dr. Hutchinson. Since he took care of Paige throughout her stem cell transplant he is familiar with her personality. After witnessing her behavior first hand he said to stop the accutane immediately and prescribed oral Prednisone (steroid) for three days and also a topical steroid for her face. Because of the promising studies with accutane and neuroblastoma we're disappointed it wouldn't work for her. But, we were relieved by his decision. Because no matter how promising, there is no way we could continue to give her a drug that made her feel so awful. There are a few other options for oral medications he mentioned and said he would discuss them further with Dr. Yanik. We're hoping that after her MIBG and bone scans are done this week we'll have a clearer picture of where her disease stands and hopefully a definite plan for either surgery or other avenues of treatment can be decided on. Until then, and as usual, we take this one day at a time. Thanks for taking the time to check on Paige. Love, Andy, Sandi & Paige Paige's test schedule 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 collection. 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 |
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| Labwork 4-5 WBC 4.9 (4,900) Hemoglobin 11.6 Platelets 90,000 ANC 3,000 |
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