Yesterday Raven started her second part of delayed intensification which was supposed to happen 29 days after she started this round. Technically day 29 was supposed to be July 21st, but because of the infection on her tush, things got pushed back. That’s just how things have gone for us during this whole process, so I wasn’t surprised she was delayed. It’s been a little tougher for me this time though because I’ve been so anxious for this round to just end. I have to admit that yesterday I was a bit distracted in the morning just thinking about being with Raven and what it meant for her to get chemo again and finish this round.
I had to work in the morning so Erik took her to the hospital to get her LP and treatment. She went in at 1:30 for the LP and Erik says she did great. He says she woke up saying hi to everyone she saw. She has become so social lately saying hi to everyone she sees everywhere she goes and it’s really cute. I have a feeling she’s going to be one popular girl when she gets to school.
I got to the hospital shortly after she got out from recovery and she seemed happy to see me. Erik was feeding her chocolate chip cookies and I could tell she was really into them. He left and I took over and then we just hung out and waited and waited and waited for chemo. It always takes a while for orders to come through and the pharmacy to make the chemo so I took the opportunity to lay in bed with Raven and sing and sign. I taught her this new thing where I say something like “Raven, are you a funny girl?” and she holds her hand to her nose and laughs. It’s hysterical and melts my heart. She even showed her nurses and they all got a kick out of it.
At about 5pm, she got two doses of chemo. After they were done, we had to wait some more. She had to have four hours of hydration afterward. Outpatient pediatrics is only open until 7pm, so we had to be transferred to a room upstairs in our home away from home. When we got to the room, Raven started getting really cranky. I could tell she just wanted to get off that bed and play. It’s so hard for her now because when she feels good she’s so hyper and she just wants to run around and play and she doesn’t understand that she just can’t. That part is frustrating and heart breaking. It just sucks to see her upset and the fact that I can’t really communicate with her the way I’d like is tough. That’s honestly why I’m looking forward to this round ending. I keep getting told things will be different once we get to long term maintenance. My hope is that once she’s there the hospital will become just a place where we go for check ups and not stays.
All we have to do is make it through the next 27 days. Today, tomorrow and Thursday we have to take her back to the hospital for more chemo then she gets a three day break and will have to come back four more days in a row for more chemo. She will also be taking chemo at home for the next 17 days and I think she has more chemo scheduled after that on her road map. To be honest I’m not quite sure and I’m just taking this last round one day at a time. Anything can happen so I’m just taking it one appointment at a time.
For now, Raven seems to be doing well. She was slightly cranky this morning and didn’t want to eat anything but that doesn’t surprise me. We all have the day off together which is nice so we’re going to hang out and enjoy each other’s company.
Raven's Journey 