Day -7

Brandon stayed the night with Gracie and I stayed at the RMD house because only one parent is allowed to stay the night. She had a pretty good night and no puking so that is good. I woke up this morning anxious and thought" am I really ready for what is to come?"
I know we can only go forward, this is what we have been waiting for to rid her body of any lingering cancer cells.
This morning Jim and Paul from hug works stopped by the room to sing to gracie. She loved it. Hugworks is a nonprofit organization that provides music programs and recorded resources for children with special medical and emotional needs. It definitely lightened the mood and brought a smile. They have been doing this for 29 years. Go to http://www.hugworks.org

A Brief History of Hugworks ®

Jim Newton was the founding staff member in 1981 and began what was originally named Celebration Shop, a 501(c)(3) not-for-profit. Celebration Shop supported tours to churches, schools and colleges, providing programs for youth and young adults. In early 1983, while on tour in Ohio, Jim was invited to sing with children at Columbus Children’s Hospital. He had never used his singing voice and guitar in the hospital. His experience that day put both him and Celebration Shop on a new life course, as Jim’s own personal words tell you here:

"I felt really awkward and inadequate to be singing with hospitalized children, never having done so before. And though the lobby setting with about 20 children gathered - some in wheelchairs or on crutches, some coming under their own power, and a couple in hospital beds - went okay, I really felt my repertoire fell far short of what the children really needed.
Just as I was putting my guitar away, a nurse asked me if I would go to a room to sing for a little four year old boy (we’ll call him Toby - for purposes of family privacy) who was too ill to come out with the other kids. I agreed and she escorted me to his door. When she introduced me to this precious child and his Mom, she said, ‘This is Jim, he sings and plays guitar, and he’s going to make you feel better.’ Talk about feeling awkward and inadequate! Here I was with a very few, if any, real children’s songs - singing with a very ill little boy and a Mom worn out from countless days and nights of her hospital vigil - and I’m supposed to make them feel better!?!
As the nurse disappeared out the door, I started to play and sing. I don’t remember exactly what song I did, and after the song was finished we just looked at each other in a tense silence - no claps, no smiles, no words. So, not knowing how to gracefully excuse myself, I began another song. In just a minute or so, I noticed that Toby was on the verge of a smile - just a hint around the corners of his mouth. And so I immediately started another song. Almost instantly, Toby broke into a beautiful grin and began to clap his hands together, totally out of rhythm but absolutely and perfectly wonderful! His Mom looked around at him in amazement and began to quietly cry - huge teardrops streaming down her face. That’s all it took for me! I began to cry too, but I kept playing and singing - and Toby kept smiling and clapping!!
I visited with them for a few minutes, and when I had to go, Toby’s Mom walked me to the door. She said, ‘I don’t believe we’ll take Toby home from the hospital this time. I think we’re going to lose him. But you gave us so much today. He hasn’t smiled like that in weeks, and he’s never clapped his hands to music that way! Thank you so very much!!’
As I walked down the hall, something inside told me this was where I belonged. Music and singing had always been so healing for me. Perhaps I could pass it on to children and families who needed songs of the heart.”


Gracie has been very grouchy today but has been eating pretty well and only puked once today. Every time she is sad or grouchy I ask her if she is hurting but she just says " I'm just mad/sad that daddy went home, that's all" finally when her pain is too much she will admit she needs something for it. I don't know why she won't admit it or ask for pain medicine. She knows it makes her feel better. I don't know if it makes her feel funny or something.
They were going to start chemo at 1 today but her urine specific gravity was too high because she had had the DDAVP this morning. So it took till about 4 pm for it to come down to where they wanted it. They are going to try to go without any DDAVP these 4 days so her kidneys aren't holding onto all the chemo. I think that is an ok idea as long as she doesn't get terribly thirsty. We will see how it goes. She has only been needing it once a day lately anyway. They started the chemo at 5 and it runs for 96 straight hours around the clock. Wow! When I think of how awfully sick she was on 3-5 hours a day chemo, it is hard to imagine how much worse this will be at 24 hours a day. The dose is much higher also, I hate watching this poison enter her little body drip by drip. But I am glad there is such a thing. I can't exactly hate it if it is helping her. It is a fine line.