Yes, I got to go come home last night and my eyes are burning because I still wake up at five o’clock regardless. I sleep on the couch because both my head and my heart know it’s only temporary.
Nonni stayed with Ashton last night and it’s a good thing. I got to leave and accomplish a few things, one of which was supposed to be sleep. C’est la Vie.
When I pulled up to my house, I noticed my neglected flowers drooping and dying. My seedlings had already perished. I went to work on the flowers before I even unlocked my door. Oh, perhaps I should ask someone to water them.
After performing dead-head CPR on the plants, I went inside to wash the hospital off of me. There’s something about bathing not at Dayton Children’s Hospital.
That’s the good news. The bad news is that the lawn mower hates me. I tried to start it again. I pushed the thingy-thing and pulled the other thingy-thing and I felt eyes on me as I battled with it in my field of dandelions. My neighbors to my right actually came out of their garage to look at me. The neighbor to the left happily mowed his grass while I struggled. So, I decided to sit on the porch and cry. Yet, the dandelions remained and the mower taunted me from the field of them so I got up and you know what I did? I put that piece of blankety-blank metal back in the garage. Even I have limits.
There are other things more important than what my lawn looks like. There are things more important than any lawn on earth.
Sometimes I act like Ashton is the only child who has cancer. When you are in that room, you begin to believe that. I get jealous when I walk down the corridor and see OUR nurse with another patient. That’s our nurse.
Our oncologist told me to “just relax” yesterday. He said it with a smile so I don’t hate him. He is so relaxed I was tempted to ask him if he were writing prescriptions for himself. My sister wants him to be more passionate, but as much as I get annoyed at his “relaxed” manner and the fact that he goes too fast in explaining things and I cannot decipher his handwriting, I know that he wants me to relax because, to him, this is standard procedure. He’s been doing this so long and has heard every important and also every stupid question from frightened parents for so many years, and having treated and seen children both survive and die, he really does want me to relax. He’s right. I am of no use if I am getting worked up.
I cannot change anything. I cannot change anybody.
Ashton had a dye study called a fleouroscopy on his central line yesterday. This is due to his periodic screaming out and clutching his chest. I’ll give him this: the kid knows what’s up. His body is rejecting all that stuff implanted in there, and it’s supposed to. He really knew it before any tests were done. However, it’s not supposed to migrate. It’s also not supposed to have a kink in it. The good news is that it was declared “still viable” yesterday. That is good news for sure. The surgeon who did the port came up to visit and he must really love his job because he lingered. I think he had a little thing for Nonni.
He is better at explaining things than oncologist #1. He reported that they would not replace the port yesterday, but that doesn’t mean it could not be today. He said it is not a matter of IF they replace it, it’s when. Hell, they may even put in TWO new ones! The reason being is when someone goes through certain procedures such a BONE MARROW TRANSPLANT, they do not want a sketchy port. That’s a medical term: sketchy.
I got more acronyms yesterday as well. We had a conference call with the specialist in Cincinnati and thank the good Lord I can finally spell Cincinnati because it looks like we will be spending a lot of time there. So will his donor, as the specialist believes we will absolutely have one and also within the specified time period. I received a list of the stronger chemo treatments he will get in Cincinnati. They are ugly, ugly names. They should be ugly. They will bring him to the edge of death before he receives new bone marrow. It’s their job to be ugly.
And that’s all we have from The Couch this morning.
Thanks for the compliment ( I think) but I’m sure the Dr. was hanging around because of you….He did have nice blue eyes for an older gentleman… lol
This is lovely.
Erin you are a beautiful writing, please keep writing and sharing. Love you guys so much, everyone is behind you and praying. Thank you for sharing your life, in sure it’s not easy
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