Piper has now officially begun Maintenance treatment. I think I wrote a little last week about what all that meant and consisted of. I for one, am not sure what I am going to do once or twice a week instead of visiting clinic. Maybe a hobby? Maybe not?
We made it to our 8:00am appointment, despite the downpour of rain, and she was sedated by 9:30. My mom thankfully came with me because I had a number of questions and I wanted to have total focus to pin the doctors down about her losing weight, fussiness and lack of appetite. She is now down to 6.4kilo (14.04lbs) from 7.7kilo (16.94lbs) at her 1st birthday. And this is not expected at this point in her treatment, she should be feeling better, eating better, acting almost normal...and she is not. Dr. Lew took some additional blood work to test for additional things to attempt to rule out less obvious issues. And yes, her blood work is beautiful with absolutely no sign of leukemia. She does have a UTI and has begun antibiotics for that. He also has begun her on an antihistamine that typically boosts kids appetites and we are continuing to add Duocal to every little thing she puts into her mouth. They have told us we can discontinue the Diflucan, but this still leaves us juggling 9 different medications dosed out multiple times throughout the day and week. We need to go back in 2 weeks to see if she has begun to gain weight and if she continues to trend downward we are visiting the GI Doctor for some answers. The use of an NG tube is the next step if she will not eat consistently on her own and nobody wants to begin that at this point in her treatment plan.
So there you have it. Some good news with some "meh" news. While her treatment is simplified we are finding the side effects of over a years worth of chemo on a tiny little body. And while we are in maintenance, we are not out of the woods. Piper is not cured but she is still in remission. Remember she must be cancer free for 5 years to be considered "cured". While that seems like a very long time away, our prayer is that the worst is behind us forever.