Today is going to be a long and stressful day so of course when I should be sleeping, I can't. I've been tossing back and forth for a few hours with a really heavy brain. Tonight is the last night Spencer and I will be sleeping at home for about a week. I'll miss my bed. I'll miss having all my things. And God, I'll miss Sully. I've never been away from him yet. Everything aches right now. Everything
I was told by his doctor to get sleep, take care of myself. I can't focus on me. But I know I'm a wreck.
After dropping the Porkchop off at my mom's, my sister (it's good to have another set of ears and eyes, not to mention company), Spencer, and I are heading downtown for appointment after appointment after appointment. And off course, some are in Rainbow and some are in Seidman Cancer Center, which are not exactly right next door to each other. It'll be a lot of zig-zagging and hustling. I'm tired just thinking about it.
The day starts at the Pediatric surgeon's office. They need to look Spencer over for a central line they'll be putting in on Friday so he doesn't have to be poked over and over. I appreciate that. They'll also decide if he'll need a platelet transfusion but I've already been warned that he probably will. The surgeons typically like platelets to be above 75 and at last check, his were around 50. If he needs the transfusion, he'll be admitted tomorrow and have to stay overnight...then overnight again Friday after the central line and bone marrow biopsy...then it begins. But I'm getting ahead of myself.
After the surgeon, we have to race over to the Oncology clinic for his blood draw. This way, by the time we're actually there for his appointment, the labs will be ready and we can dive right into my questions. I've compiled a hearty list.
Once the blood is drawn, we head back to Rainbow for an Echo and an EKG. He had these at birth because he was predisposed to heart issues but they were ruled out. I guess they're just giving it a second look to be sure there are no problems before his surgical procedure and treatment. To be honest, I'm not 100% sure why this is happening. It's on my list.
After this appointment, we head BACK to Seidman for his check-up, to discuss his labs, and to have any questions answered. Like I said, I have plenty. Somewhere in there, we'll have to eat. And then home. It won't be very relaxing because I'm most likely going to have to gather up anything he needs for a week's hospital stay (books, blankies, toys, etc) and anything that I'll need (travel shampoo, clothes, slippers, school work). I wanted to have the iPad all set up but suddenly I've become technologically impaired and can't get it to sync with my phone junk. You're useless, iCloud! So I'll have a lot of junk to do when I get home...and I want as much of that "junk" as possible to be Sully time. I don't want to be away from him. I don't want Spencer to do this. I hate all of this.
This is without a doubt my nightmare come true. I will try to update after all the appointments are finished if I can find the time. Unlikely...unless I can't sleep again.
And I haven't gotten a chance to mention it (I don't think, my mind is mush) but the lovely and talented and amazing Phee-Bizzle (a survivor of stupid cancer herself) started a store full of all the swag you need to be on Team Spencer with proceeds going to him. It's way more about supporting the little guy than it is about money. I'm not worrying about the financial part if this because that's the least important to me right now. Spencer is what's important and seeing so many people get pumped about buying a shirt or whatever to support him is incredible. He's got quite a crew behind him. TEAM SPENCER!