ports and we shouldn't be here

update: Radiology called...another miracle...its only in her lungs. What?! I call that a win. From what they can tell, there aren't any other tumors anywhere else. Feeling hopeful.
Port and first dose Friday.


Today. I didn't sleep much last night. Ruby woke up once but went right back to sleep. Got her up and she was happy :)  All was well until the nurses came in to do the IV. She knows now...crying, lots of crying. The PET scan machine is in a trailer, so they can take it to multiple locations. We went out and she played on the ipad for a while while her sedation was being infused. After a few minutes I asked her to put it down for a second, and in that second she zonked.  As I went to lay her down on the machine she woke and just cried and cried. I sang Give Said the Little Stream and she quieted down.

I went out to wait and was greeted by Mark's sister Annie (and a smoothie, thank you). Good to see family and have someone to talk to.  Not long after she left, Ruby was done and I went back to see her. We had the same nurse as when she had her MRI a few weeks ago. Same recovery, very different circumstances. She told me about her 12 year old boy who is doing a trial drug for a blood clotting disorder and they fly to California once a week, and will be for a few months. Everyone has a thing. I'm so thankful we get to stay in Utah. Anyway, Ruby was taking forever to wake up, and anything I said she started screaming crying at me. So, I figured we might as well leave and get her all unhooked.

sorry, this is a sad one

We went up to the 4th floor to the Oncology clinic to see if Dr Holly was around. As I walked in the clinic, I felt so out of place. We should NOT be here is all I could think. I felt like cancer germs were surrounding me and I needed to get out, like claustrophobia. I turned and walked out to wait by a sunny window. We read a book. Although I didn't have an appt with Dr Holly, she took time to see us. We talked in a hallway for a while, Ruby started waking up more and eating. We went to a room in the clinic and I asked more questions.

No, the images hadn't been read yet so I'm not sure what they show. She'll call me later today.
Yes, she'll be getting a port. Likely tomorrow or Friday, and will also get her first dose of Nivo at that same visit. It is a 90 minute infusion. Since she's not part of the trial, she doesn't have to do all the lab draws on other days, so although she'll have a port, I hope it won't have to be accessed very often. It can be scary for little people to have their port accessed, but I'd rather have it be painless and scary, than painful and scary.  Its hard to see her be so afraid regardless.
No, we have no idea what her chances are of responding and how her body will react. Yes, there are side effects, but we don't know if she'll have any/some.

port is on the right, it goes under the skin 

snoozin on the way home

Thank you for your thoughts and love. I haven't cried yet today, so I know its helping :)