E says...

For the most part, Evelyn keeps a cheery disposition. Of course she is thin and her skin is a little pale. Her hair has only thinned a little. She smiles, plays, acts out, and gives me plenty of attitude! She gets tired more quickly. But most wouldn’t know what is going on inside her little body. Every now and then she does or says something that brings the reality to the forefront and highlights how she internalizes a lot of her feelings. This has happened several times over the last few weeks.

The other day in the bathtub with Nahna. E was role playing again. E was Dr McClain. Ariel was the patient. E was fixing her up and singing a song about the doctor. It makes me sad that her fun/role play is so focused on something so sad.

The higher doses of the V drug have been taking effect. She has had more mouth sores than before. We catch her with what they call “foot drop.” She trips on her feet or rolls her toes because she isn’t picking up her foot high enough. The neuropathy seems to be more present. She walks on her tiptoes more. She will be walking or sitting and say something hurts or she is uncomfortable. She was playing with her dolls last night and started telling me all about one of her doll’s cancer slugs. How they make the doll's arms, hands, legs, feet, and sometimes face hurt. Her stomach hurts where the scar is. But it is going to be alright because we are fighting those yellow slugs and we are going to win. She lovingly tucked the doll in good night. E was the doll’s doctor.

With the frequent clinic visits and uncertainty over the past week regarding her bottom hurting, she is having flashbacks of when we went to the hospital the first time. She has asked a lot of questions about when they put the IV in her hand (which was extremely traumatic). Then, the other night, we heard a siren outside. She said she was scared of the siren. She thought the ambulance was coming to take her away from us because her bottom hurt. (The ambulance ride from Cone to Brenners was the only time we were separated when all of this started. They made me ride up front. Again, traumatic).

I am so thankful every day that Kevin saw the tumor, the optimistic diagnosis and the “mildness” of her treatment/side effects compared to most of the children we meet weekly at Brenners. At the same time, I am so frustrated and angry that this has happened to my family and my little girl and there is only so much we can do to make it better. Sometimes I just want to scream, instead I blog (and yes, I scream too).