Yesterday as I was feeding Georgia we had our door open and I spotted a couple listening to the Oncology team report on their child outside of their room. I kept having to tell myself to look away, this couple looked so dazed, in total shock and so intently listening to what the doctors were telling them. I don't know this family, I couldn't hear what the doctors were saying but I looked at them and knew that is exactly how Brian and I looked just over three months ago. I felt sad for them because I so remember being blindsided. It made me thankful that if we have to go through this that we're past that stage.
Georgia still seems to be tolerating the chemo well and although they increased her dose and IV fluid is still eating pretty well. I am feeling exhausted, we have a nurse coming in our room at 8pm, 10pm, 12am, 1:30am, 2am, 4am and 7:30am to hook up chemo and take vitals... I try and help as much as I can so Georgia stays asleep. I am gearing up for less sleep, on Friday we start our next chemo for two days which comes with required diaper changes every 1-2 hours round the clock, the last chemo is the same and that continues for 24 hours after chemo stops so that's four days, fortunately Brian will be here to help but it's exhausting for all of us.
Georgia's skin rash, called JXG and almost as rare as JMML is talked about quite a bit - no one knows if it will get better or worse with transplant because they have never transplanted someone with it. It definitely got worse with the last round of chemo so they had dermatology come take a look for tracking purposes. The dermatology resident was a little too chipper for my taste, all excited to take pictures of her for their files. They suggested that Georgia be checked out by an eye doctor because JXG can also be seen in the eyes. Yesterday we went to have her checked... I forgot how incredibly annoying doctors can be when they see something they haven't seen before.. they literally get excited about you child's condition. We were asked if they too could take a picture of Georgia for their files. The good news is that her eyes looked good and her vision is normal the bad news is mama was highly irritated. Eventually her skin condition will go away, if that's all she was dealing with they wouldn't do a thing, it's benign and doesn't bother her.
If Georgia is awake she wants to be out visiting with everyone and her new favorite pastime is riding her little mermaid "car" while we push... round and round we go all the while she is honking the little horn and doing a little wiggle dance, my daughter is fantastic!