Many of you are correct in your assumption that no news is good news. Mia has been feeling well and happy and wonderful.
She finished her first phase of chemo at the end of January. Although she has been tolerating her treatments fairly well, the last one was a bit of a doozie. She needed both blood and platelets, then the next day was back at the hospital with fever. (Thanks for bringing home cooties, Mom!) She did great though, as usual! Now her eyebrows and eyelashes are trying to grow back and she looks even more beautiful than ever.
During February Mia underwent a reevaluation period. We did a bone scan, a CT scan, an MRI and a bone marrow biopsy. Things are still heading our way. There soft tissue tumors are still gone and the abnormalities seen in her spine and in her skull are thought to be post-treatment changes with a fibrotic and apparently inactive residual skull base mass.
Over the last several months the doctors have been discussing a second phase of chemotherapy. In the beginning due to her symptoms, she did not qualify for a drug currently used to treat rhabdomyosarcoma. Now that she fits the criteria, it was decided to complete her treatment with several months of this drug. It is fairly well tolerated and the doctors felt she would do well. We can also do it at home as it is five days in a row for the first week, then two weeks off. She may not need as many transfusions, and we have a plan of action for treating the most common side effect of diarrhea, which can be severe. We started the treatment this week. She seems to have a good deal of appetite suppression and nausea, which we are addressing. She is still smiley though!
So now our brave girl will have to get into a brand new routine. We are still in the beginning stages of this next phase, so we aren’t quite sure what to expect yet. We hope that she feels well with this and we pray that she will never ever need to do this ever again.