July 8, 2011 - Day #35

We got the best news ever today. The test results came back from Seattle today and even under their very precise testing, they couldn't detect the cancer. The official terminology is that her MRD (minimal residual disease) came back negative. This means Riker is in full blown real remission!

I don't think this changes our course of treatment in any way but it dramatically increases her chances of survival. It's definately made me feel more hopeful :) We need to continue to be agressive because if she relapses, her chances of survival are reduced to only 1-2%. We need to fully cure her.

Today we talked nutrition again. The doctors want her to get more breastmilk and get her off the TPN. (me too - haven't I been saying this all along?) It's odd, it's always someone new talking to me and they always seem to think I'm going to fight them. I just want to be informed and involved. I'm not here to make their lives more difficult. We all want what's best for Riker and that's what is important.

I am, again, doing pre and post weights for feedings so that we can approximate how much Riker is taking in from me. She consistantly takes in about 2 oz which is pretty good considering how little she's been eating when I'm away. The doctors want her to eat about 4 oz every three hours which would be consistant for her age since she sleeps through the night. The plan at this point is to increase her feedings by 1/3 of an oz every two feedings as tolerated. If she doesn't take enough from me, they're going to "cap her off" to the current feeding requirement. Let's hope she gets off this TPN soon :)

She also getting Zofran every 6 hours to help with the naseau caused by the chemo. If she doesn't get it in time, she ends up throwing up her entire feed. We finally identified that one of her antibiotics was the major reason she was unable to keep down her food well after the last round of chemo. With this now under control, I think we should be able to get her eating normally again.

It's amazing how normal it feels to be with Riker. When I look at her, I think, "How can this baby possibly be sick?" Today we spent some time on the floor together. We had tummy time and we played with her toys. Dispite the fact that she was 3 weeks early and spent a week and a half in a drug induced coma, she seems pretty on target for a 4 month old. I am blown away by her strength and resilence.