Journal‎ > ‎

Good & bad

posted Jul 6, 2014, 6:34 PM by FightingFor Mya

Well, Mya's birthday party was a huge success! All the kids had a great time and Mya had the best time. We want to thank everyone who came and also everyone who sent cards and well-wishes through Mya's Facebook page.

This past weekend has been tougher than most. Mya is still neutropenic from her last dose of etopiside. We keep waiting for her ANC to rise. Everything else in her blood panel continues to improve (white blood cells, platelets, hemoglobin). She can't get certain treatments until her ANC is at least 1,000 (she was at 320 as of last Thurs). Mya's appetite has also suffered greatly since she completed the etopiside cycle. We've really been struggling the last few days to get her to consume anything. She only wants to drink liquids. Then, she feels "full" and has no interest in food. We try to cut back on her fluid intake and she has meltdowns (screaming, crying, the works). We are not sure if something has changed within her system, or if she is trying to gain some control over herself, or if the etopiside has done something unexpected. We have been giving her liquid formula, so her weight hasn't really dipped, but she needs to consume real food.

We are hoping (still) that her appetite will right itself this coming week. Mya has her next MRI on Thursday this coming week. We think if the doctors see progression of the tumors on her spine, they will recommend doing chemo shots directly into them on her spine. It would be a day procedure. I'm not sure, but I might take the day off this time and go down with them. Of course, this doesn't even address the tumors in her brain. We are hoping that they have remained "stable", meaning they look the same. Or maybe they are different, which is why Mya has been having such a hard time these past couple of days.

A lot of unknowns still, always... Deep breaths, positive thoughts.