We finished radiation! As of yesterday, Mia completed five weeks of daily radiation to her head, back, and ankle. Although we are glad not to travel to the hospital every day, we will miss the radiation oncology staff, as everyone was exceptionally nice. Mia is, however, experiencing some short-term cumulative effects of the radiation, mostly with nausea and vomiting. She also has some esophageal irritation and skin irritation. We hope most of these will improve over the next week or two. There are some long-term effects too, for which we will be looking out.
Chemotherapy continues weekly, usually in the doctor’s office but also in the hospital every third week for a more toxic medication. The chemo schedule is a well –established protocol used universally in all the major hospitals in the Chicago area and elsewhere for stage IV (metastatic) rhabdomyosarcoma. Mia occasionally needs blood transfusions due to the chemotherapy and we thank you so much for your donations to blood bank. She usually asks whose blood she is receiving and says the most insightful, wonderful things about the donor. Mia usually tolerates the chemo well but doesn’t like staying in the hospital. We try to keep her busy with lots of fun things to do.
As you will recall, her eye problem brought all of this horror to our attention. By that time though, the tumor had spread from in her abdomen next to her spine, up her vertebral column to inside her skull. She had also developed rapidly growing tumors on her ankle and the outside of her skull. The tumor caused weakness in her spinal column and she developed what is called a compression fracture of one of her vertebrae after a seemingly minor injury.
So far all of these areas seem to be showing improvement. Her right eye is now opening almost fully, but she cannot look in different directions yet. Her eyesight seems to be okay but she still has double vision because one eye can move and the other cannot. The tumors on her ankle and scalp shrank very rapidly in the first couple of weeks, and her ankle stiffness from the biopsy is improving with physical therapy. Her back is feeling much better and we have a new back brace to help her injured vertebrae heal correctly.
Mia will be having a full re-evaluation of her condition in the next few weeks and we will keep you posted.