Julia had her kidney tests done and they were significantly reduced from last year. Which means her kidneys are really taking a hit from the meds. Given these results we decided to hold off on the experimental drug and wait to see if her EBV numbers continue to increase. Julia was scheduled for her heart biopsy last Tuesday and on Monday she developed fevers and was feeling unwell. We did not think they would go ahead with her biopsy but proceeded to the hospital Tuesday morning. After many discussion back and forth with doctors it was determined that the importance of the biopsy outweighed the risks. Given that we had reduced the steroid 5 weeks ago this biopsy was a must. Therefore they took her into the OR with the fevers. We were extremely nervous but like always Julia did very well. Because it was unclear why she was having fevers doctors started her on a high dose of Penicillin to cover her just in case something was growing. On Wednesday I got the call that biopsy results were good, there was very minimal rejection (which is expected). Boy were we all relieved. We were at the hospital Thursday for clinic and since Julia has been a little off and experiencing diarrhea, stool samples were collected. On Friday afternoon I got a call that her samples tested positive for Torovirus (a stomach bug). If that wasn't enough Friday night I got an email from Oncology that Julia's EBV numbers have tripled in the last 2 weeks (not good). We will repeat the numbers this week and are starting the experimental drug immediately.
It's been a stressful month but I have to remain optimistic that Julia will continue to fight and be strong and that all will work out fine or I will really lose my mind.....which is already happening....haha.
Thanks again for all your support and concern and I will keep you all posted on how she's doing.