September 9, 2014


An “off” week

This week has been wonderful! Scarlett is done with her prednisone. She finished her fluconazole (an anti-fungal medication) on Monday and her ranitidine (for stomach protection) on Tuesday. For the next three days, she doesn’t have to take any medication!

This past weekend was pretty rough. She was in a little bit of pain and had to take her first dose of morphine since we came home from Children’s. She also threw up a lot on Sunday. It seems like her nausea is a little more delayed than you would expect it to be. But she had her Papa to snuggle all weekend – and he loved it!

Now that she is done with the prednisone she is getting back to her normal self. She seems lighter to me although I’m sure that’s just in my head. She is happier. She laughs now. She laughed so hard today that I almost cried because I forgot what it sounded like. And it’s such a silly laugh! She lets her brother and sister hug and kiss her again. She’s been crying and pushing them away for so long. I encouraged as many hugs and kisses as I could tonight. She helped me fill a bowl of cheese this morning and I noticed that there was still cheese left when I came home. I have my baby back again!

As excited as that makes me, I know that is will be short lived. Her counts are good this week. Her WBC count was almost in the “green” range so we have been outside a lot. She went to the park one day. She has come with us to take Tate to school. Next week she won’t be able to do that. Her platelets were high this week so she can play like normal without the fear of bruises and bleeding. And her Hgb was stable. Not great but stable. It must be going up this week though because she has some color in her face, more energy and she hasn’t been as cold. Next Tuesday we start consolidation. Heavy chemo for 8 weeks. Which means that this “normal” will go away again. I hope that we can keep her smiling, laughing and playing. I hope that she continues to be generous with hugs and kisses. I hope that we can alleviate her pain and make her tummy feel good. I hope that we can keep her life as close to normal as possible. She has been so strong and such a fighter. I get my strength from knowing that I need to try my hardest to be as strong as my two-year-old.

We were hoping to get her bone marrow results today. They haven’t come back yet. I don’t know if that’s a good thing or bad thing or just normal. I am so terrified that I have been sick to my stomach for the past two days. The wait is awful. Hopefully they call us early tomorrow with the results.

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