Mia is finally starting to feel better. She hasn't had a fever in a couple of days. The infection on her finger is beginning to look better although the one on her back is not. It is not any worse. On Tuesday she had a CT scan and she was supposed to get her PET scan done yesterday. Because the equipment is in Meridian She had to be transported there in an ambulance. When we were almost there a call came in and we were told they couldn't do her scan because she has C-diff. When we got back to the hospital everyone was in an uproar. It didn't make any sense. Turns out that because the scanner is in a new facility with new management there was some protocols to work out and we were the first. C-diff is very contagious and so they needed to work out how to give the scan and clean up after and everything. So the scan was rescheduled for today. I have been apologized to by the transport company, the doctors, the nurses, and the staff from the new facility! Thankfully things like this don't particularly bother me. I understand that sometimes bugs have to be ironed out of new systems.
Even though we don't have the results from the PET scan today, I did sit down with the doctor to discuss the results of the CT and bone marrow biopsy and the next step in her treatment. Her CT scan does show that the lymph nodes in her neck, chest, and abdomen are more enlarged than they were previously. Her bone marrow showed very little improvement in her bone marrow. We discussed the four different reasons that could account for her counts remaining so low. He said that sometimes it is a combination of all four problems. He has done quite a lot of research and feels that our next best option is a non chemotherapy drug called, romidepsin. It does not have as many side effects as some but it can cause heart problems so we have to wait for an opinion/okay from her cardiologist.
We are going ahead with testing Andrew, Heidi, and Jessica to see if they will be a match for Mia should she be able to receive a bone marrow transplant. They don't want to test Allan. Not sure why but it might be that if the syndrome, Cri-du-chat predisposes them to getting lymphoma then maybe it would be better if she didn't receive his cells.
So we are done with two options and moving on to the third.