Sorry for the delay in updates. We wanted to be sure everyone had a chance to see the website before changing things. We’ll try to have our next updates around the end of September.
September! Yes, summer is going very quickly and we’ve settled into a new routine since radiation – a little less hectic but busy all the same. Chemotherapy still continues weekly in the doctor’s office with chemo in the hospital every third week. A week after her hospital dose, she is usually back in the hospital for transfusions of blood and platelets when her counts are low from chemo. The first hospital dose of chemo after radiation really took its toll because she was so ill from the radiation. The worst effects of radiation seemed to hit after treatments finished. Mia had such inflammation of her esophagus that she threw up blood a couple of times and didn’t really eat for over a month. She lost quite a bit of weight and was extremely weak. She ended up in the hospital for over a week in the beginning of June. Since then, her eating has improved a bit and she is getting stronger and tolerating the effects of chemotherapy a little better. The radiation treatments may still cause long term problems, but so far we’re doing okay.
In the last few weeks, we have been going through a reevaluation process to see where things are at. The tumor in her abdomen that may have started this all seems to have melted away. The ones in her ankle and in her head behind her sinuses are still there but have shrunk. One of the fractures in her spine has completely healed. We still have a bone marrow biopsy coming up, but MRI shows that there may still be cancer in her vertebrae, so the biopsy will probably still show tumor cells. Before you ask, she does not qualify for a bone marrow transplant at this time. Mia’s eye continues to improve slowly, and she can now move it slightly in all directions. This helps with the double vision at times, but she seems to be compensating just fine and can do her reading and spelling and drawing. Her eyesight continues to be okay, except she may be showing signs of slight nearsightedness that is probably genetic (thanks a lot mommy!) and unrelated to her condition. The last of her burns from radiation are fading along with the last of her eyebrows, eyelashes and hair.
In addition to our oncology visits, we still have followup with ophthalmology, orthopedics psychology, and neurology, to name a few. We are still not safe yet and the battle rages on in this perfect, beautiful little body.