10/18/09 - Can you be Brinley?

Things are better now, we made it through another steroid pulse. Whew. Twelve more to go!!!

We shouldn't have to go up to clinic until after Thanksgiving so long as no issues arise. Brinley is well known at clinic for "issues", so much so that when we were going up there last time she said "I think the doctor will say, 'what are you doing back here again!'" It cracked me up, because that's exactly what he said.

This round of chemo wasn't much worse than the others, except emotionally. Brinley is getting to the age where she can express her feelings better now that she is a year older than she was at diagnosis. So when we were at clinic last week to get her pentamidine, she said some things that absolutely broke my heart. For some reason, she has been really going with the puppy thing, and it seemed this month like she was expressing herself through pretending to be a puppy. So every feeling she had was the "puppy" is feeling this or that. The puppy's tummy hurt, or the puppy is tired. So right before her port access she said "mommy, this puppy is scared." That was the first time she has every told me she was scared. It dawned on me that she feels that every single time she has to get her port accessed, she could just never express it. All of these things that happen to her little body are so invasive, and they make her scared.

After the pentamidine infusion, she had to go get her flu shot. She asked if we could go home, and I told her we had to go downstairs and get a shot first. This was our conversation:

Me: We have to go downstairs for a shot then we can go home.

Brinley: (Face goes into cry mode) Noooooooo! (Face changes back to normal immediately) For who?

Me: For you.

Brinley: (Face goes back into cry mode) Noooooooo! (Tears start coming out. Tears stop, face quickly goes back to normal again) For you?

Me: No Brinley, for you.

Brinley: Noooooooo! (continues to cry all the way downstairs, gets shot, is crying all the way out of the hospital) Mommy, (through sobs) can you be Brinley?

What do I SAY to that???? Someday she will read this, so I will say this. I wish with all my heart and soul I could be Brinley and it could be my body used as a pin cushion and absorbing chemo and being scared for every procedure. Oh, if I could just jump in front of this moving bus for her, I wouldn't even blink an eye.