I have found that writing these posts, get harder and harder. I sit down to start to write, and my mind wanders and I go to my email and reply to emails, then come back, I go to facebook and read up on the many of the families that we follow, and then come back. I do this with a lot of things, but I have found this to be moreso now than ever before. So, I apologize if my posts ever go random, but its the mind of a cancer mommy and just random things come and go.
So, as of yesterday Radiation is done. We are all HAPPY to be done with this part of treatment, because it was a lot on us with the constant back and forth, driving back and forth, and her having to be sedated everyday. Sedated under the "white stuff" propofol for 12 days is a little much. Many say this is the easiest part of treatment, and while in some aspects I can see why that is said, however on Doug and I it was still very hard. I think a lot of this had to do with Emily coming off of the propofol and the side effects this had on her. She had the worse temper tantrums coming down off of this medication and was very moody.
Emily is now done with the "consolidation" part of treatment and will be moving forward to the "Maintenance" part of treatment. At this point the scanxiety is in high gear and what will come of the scans. Since a complete workup has to be done before she can start the Maintenance part of treatment which is antibodies. We really want to hear that the Emily is Cancer Free, so please send out all your love, thoughts and prayers that she is clear.
We leave Sunday to head to Philly and right now it is up in the air of where we will stay. The feeling of the unknown of where we will be staying is really hard, because the Ronald McDonald House can't guarantee anything until the day off. You have to call them between 10AM and 12PM to see if they have anything available and if they don't have anything available, you can get a hotel, which in the Philly area are EXPENSIVE. So, right now we are preparing that we will be taking the camper since, staying at a campground is much cheaper a night should the RMD now have anything available on Sunday and looking and calling campgrounds in the local area. We feel lost not knowing what we are doing and where we are staying.
Monday and Tuesday are very busy days with appointments and scans, and after talking to Dr. Gowda yesterday he indicated that Emily's complete workup (meaning HMA &VMA, creatinine check for kidneys, hearing and ECHO) should also be done there at CHOP so that Emily will not be all over the place and she have a complete workup in one place. So, just waiting to hear from CHOP to see if those can be next week as well while we are there. We also have a meeting with Dr. Bagatell to talk in depth about antibodies. She sent me a 17 page document that talks about side effects, and says that she would like for us to write down all the questions that we have so that we can talk about them during that meeting. She said this meeting will be a long meeting to talk about how antibodies will work and what to expect and what Emily will be getting. So, it is going to be a busy time while we are there.
At this point that is about all I have as far as an update. Radiation is done and we are very happy with that. Emily does have clinic on Friday to make sure that she is set with traveling such a far distance on Sunday, but that is where we are. Oh and something Doug and I are looking forward to, we are going to have some Doug and Shannon time together alone, we haven't had this in a very long time, very long time and we are honestly looking forward to this!
Hug your babies and give them lots of love.