2nd Day of Chemo

Hi everyone,

Emily slept till 10:00am! She was such a trooper. We had to weigh her and give her medication and of course all the beeps and interruptions from the nurses all night long! I couldn't believe how positively she handled it. Each time she would just go right back to sleep.
The child life specialist came in this morning and let Emily play "Doctor" with her very own doll that she named Jacqueline Joslyn Heaps. She got to do an "operation" and put a central line in her doll’s chest and then she got to do a dressing change. She had so much fun! She played with her for about 2 hours telling her to hold still and not to itch it!
Emily LOVES to push the nurse call button! "I have to tell them something" she says over and over! The nurses have been very patient. Emily loves the power she feels when she can call and they come! We keep telling her she doesn't want to be like the little boy who called wolf. She also loves to call and order any food she wants. The funny thing is that she hardly eats any of it. She ordered a bowl of noodles, a cheese square, 2 puddings, 1 brownie, and a Fatboy ice-cream sandwich for dinner! Of course she ate 1/4 of it and the rest sat! Oh well, she needs to feel like she is in control of something, right!
The doctors are really happy with how well she is handling the Chemo. She is such a tough little girl! We’ve realized that because she’s lived her life experiencing high levels of pain, discomfort, and low energy that her threshold for pain and discomfort is extremely high. I asked the nurse if most kids are as happy as Emily is in this stage of Chemo and she looked at me with big eyes and said, “NO, hardly any kids are like this.” We think she’s actually feeling as bad as most other kids do, but that she’s so used to living with high levels of discomfort that this still seems pretty normal to her. Our hearts go out to her as she grows and we continue to realize more and more what she experiences inside her little body. Our hope is that this transplant will bring her a life she hasn’t yet experienced.
She tells me she misses home and being with her family--"I want Thomas, Jacqueline, Dad and Leo!" She made up a song about this last night as she was looking out the window! "This is my house for now" she says, and she is definitely making the best of it.
A sweet lady at Matt’s work gave us a WillowTree angel, the Angel of Courage! It is so perfect! I love looking at the angel holding her arms high in the air and being reminded to have courage!

- Jill