Information Overload

Lily had a dream last night that she was lost and couldn't find her way home. There were 2 girls that helped her find her way home. Grandma heard a noise and found Lily balancing like a flamingo next to her bed. "I can Balance!" She had already forgotten about the whistle I had given her when she went to bed, despite the fact she blew it 85 times in a half an hour period after receiving it.

Yesterday was meeting after meeting followed by a meeting and then before we could leave, we had to have a meeting. The first meeting was with Dr. E who was checking on Lily and gave her approval for us to go home as soon as we met with physical therapy. The Onc doc came in after breakfast and we went over about 85 pages of information regarding the study Lily will be in, her chemo treatment, and a lot of the technical details of how it's gonna work. We will have another meeting this upcoming week to discuss the technical details of the technical details. During this meeting, Lily was "saved" by miss Julie who has to be one of the most incredible people I have ever met. Phil introduced her before- she is the terminator aka Child Life Specialist. She is part psychologist, part nurse, part playmate, and part drill sargeant. She has this calming ability paired with never ending energy. On the way home last night, Phil asked me-"Is it too soon in our relationship to ask Julie to move in with us?" Julie takes Lily for a walk and to the playroom while we finish learning exactly how awful the next 8-12 months will be. And this is just the technical medical awfulness- we haven't even touched on the emotional awfulness- but apparently there is someone on staff who we will be meeting with that can help us with that. The physical therapist bops in and we move to the playroom to evaluate Lily. The "evaluation" includes and seems to be limited to handing Lily a miniature walker and asking her to use it. Miss Julie steps in and automatically chastises us for giving Lily that choice. She gets a choice- but it's not whether or not to use the walker- it's where to use the walker. Add Physical therapist to Miss Julie's job description. Lily refuses. Much screaming ensues. It is ugly. It is minimized with her pinky swearing to use the walker later. She then retreats to her bed and kicks everyone out of the room, including the wagon. Except me. Yeah me. She goes to the bathroom, and decides she wants the wagon back. 'Ok- you have to walk to get it.' She agrees. From then on out, she likes the independence the walker offers. She uses it to go to the bathroom, to go to the playroom, back to the bathroom, and finally gets tired out. We retreat to the room and are visited by another nice lady bearing gifts and supplying us with support group information and other parent resources. One of the groups is offering us financial aide to help with the "extra costs" of having a child with cancer. Wow, a cancer 'bonus' . Is it doubled for 2 tumors at one time? What about rarity of tumor? Another of the groups put together a bundle of fun stuff for Lily, yet another stocks the treasure chest in the clinic and "procedure room" on the ward. These treasure chests don't have rings and stickers- they have barbie dolls and trucks and games. I deal fine with the technical details of chemotherapy, but gestures of sympathy and kindness reduce me to tears. Phil puts his arm around me and another tantrum ensues over him touching Lily's mommy. I climb into bed with her and we crash.

The nurse wakes us. They need to draw blood. The IV port they have in her hand probably won't work to draw blood, so we will have to stick Lily. So why is the IV still there? Miss Julie will be in soon to help. The next hour and half are devoted to "preparing" Lily for the poke and teaching her to "choose" to throw a fit or hold still. It includes making a special Lily doll that has all Lily's owies, and green eyes like Lily and an IV port. Then Lily gets to stick the doll. I've heard of this process and see it's value since from here on out Lily will get pokes and will get owies. Part of me feels if we would have stuck her 30 minutes ago we'd be done and on our way home. Lily continually breaks out into her no owie chant. We move to the "procedure room" . "But my bracelet says NO OWIES" Miss Julie looks incredulous. "Who on earth told you a silly thing like that?" " My mommy said Lily Mallory No Owies." So mommy had to take it back. Julie explained that mommy wasn't thinking big picture. Some days you do what you gotta do to get through. I'm learning. Another 30 minutes of no owie chant and my holding her while they stick her. It was exhausting. But we made it home, and we all slept through the night. We were up at 0430- but despite the darkness, I think it is technically morning.