We were lucky enough to have a dr free day today. We took advantage doing the simple things. Most importantly Daddy getting some one on one time with our girl and me getting time to go down a slide with her. She looked back and said thank you for going with me mommy. She is such a amazing big sister….but I know it’s hard to have me so preoccupied so often in her short life. But she has never once complained, just appreciates her moments. Oh how I love her.
She told Daddy she wanted to go to YoughArt where her party was supposed to be. We were in the hospital that morning so we had to cancel. So we texted a few friends to join us. She was totally surprised and had a great time. I enjoyed just watching her use her body and smile and laugh. I filmed her just running and dancing. It was bittersweet to say the least. But I know how happy and special she felt. And for that time she wasn’t scared or sad or mad.
All those emotions are already starting to come up at bedtimes. I am struggling with how to best calm her fears and be honest with her. But we will make it through…together….
Tomorrow we go back to Packard to meet with her oncologist. I have some questions to ask since yesterday (holy smokes was it really only yesterday!?!?) I was in such a state of shock no information was retained. And some for our social worker. Then we go for a trial run of the radiation procedure. She won’t actually get any but they want to make sure they have it perfectly set for just her. She will get a IV her least favorite thing…But then on Monday she gets a port so no more IVs! The biggest bummer for me is she can’t eat after midnight and the procedure isn’t till 2! Her first appointment is at 12…poor baby is going to be so hungry and even more upset about going back. Hoping she might go to school to pass the morning hours better for her than just feeling hungry with us.
But we have noticed her vision is getting worse each day so I don’t know how much she enjoys school. She was so close to learning to read. That’s a big goal for me. To give her the gift of reading…
Tony and I both sit together at night and read messages and cry together. Our hearts are beyond broken but also full from the outpouring of support.
Thank you….sincerely from both of us