Wednesday, January 23, 2013

In Preparation: Yesterday's Phone Calls

Yesterday I spoke to the Pediatric Sedation Unit regarding Spencer's procedure on Monday. All the information was the same since he's having the same procedure at the same place on the same day of the week at the same time. No solid food or milk after 7:00am. He can have water, apple juice, Pedialite, popsicles, and Jello until 1:00. Poor kid. How do you explain to a hungry 17 month old that he can't eat? Jello doesn't exactly fill you up.

We need to be check in, get our visitor's passes, and be in the Unit by 1:30 for his 3:00 procedure. They'll get him in a gown (every time he's in a gown, it has little tigers on it), start an IV, draw some blood, and then we wait until it's time. The anesthesiologist will shoot something into his IV and it will look just like he's dosing. That's the part that kills me...watching him drift off.

They roll him on his side with his buns towards us, undo his diaper, and put that yellowish-brown junk that stains everything on his back by his hip. Why can't I think of what that stuff is called?? I keep thinking Peroxide but I know that's wrong. Betadine? Anyway, the corkscrew looking thing comes out at this point and I look away or look at the back of his head. It's very quiet besides every so often when the anesthesiologist gives the nurse instructions to raise or lower the juice. And from time to time, he tells us that Spencer is doing just fine.

Once the sample is collected (I believe this time they're just taking the marrow and not the bone chip), we wait for him to wake up. I sat by his head and was reprimanded for petting his hair. They like kids to wake up on their own and within half an hour. Spencer didn't spontaneously wake up within that time so they gave him a little nudge and my rad baby boy opened his eyes and smiled. He had a little milk, we got him dressed, drove home, and it was like nothing ever happened.

I'm walking myself through it all in preparation. I'm trying to remember all the details of last time as a sort of reminder that it really won't be that bad. TUESDAY will be bad when I can't take my eyes off the phone, waiting for the results. But hopefully, like last time, there is no Leukemia. Though I want some type of result. I don't want him poked and prodded every 2 weeks and have constant biopsies. I don't want him living like that. And selfishly, I don't want to live like that either.

If there IS Leukemia, life is really going to change next week. Scary thought.

One of Spencer's docs called yesterday. At first I thought she was just checking to make sure we spoke to the Sedation Unit and were all squared away. It turns out she wanted to talk about his results from last week. After a pathologist looked at his slide, it was confirmed that the amount of abnormal cells had increased to the 5-10% range. Yes, it's not 14% like the computer read but it IS an increase which is not what we want. Abnormal cells need to go DOWN. Platelets and white blood cells need to go UP. As of right now, things are not trending how we would like so I'm very nervous about what we might find out after Monday. But the important thing is that he's not acting like a sick child. He never has.

My mind is sort of all over the place. I've got a lot going on with school, I'm working, I'm hanging out with my boys and my husband. I'm plenty busy. But things still slip in there that I can't shake. I can't focus. Stupid stuff. If he goes into treatment (he'll stay at the hospital for the duration), am I responsible for his food and diapers? Will he always be in a gown or can I bring pajamas? What about his toys? Can he have visitors? Can his baby brother visit? Is there a place where I can take a shower (because if you think I'm leaving him, you're BANANAS)? And how long will he/we be there? Is he going to be completely exhausted and sick all the time?Will his hair fall out? Is the fact that he's really skinny a bad thing? Is he going to waste away to nothing? Is he going to survive this?!?!?! Am I going to survive this?!?!?!

It's stuff I don't need to be thinking about. As of this moment, he does NOT HAVE LEUKEMIA. But I can't help thinking. I'm a planner. I want to be prepared. I don't want the wind knocked out of me. I'm so lucky to have people to lean on. Besides my family, I've got great friends. Spencer has a few honorary aunts that get a text every time there is important news or updates. I depend on those chicks to keep my head screwed on because I know no matter what batshit crazy thing I say, they're not judging me. They're just concerned about our little guy. And when I say "our", I mean that as in EVERYBODY. Spencer is everybody's little guy. He has more girlfriends now that most dudes have in their lifetime!

And on a NON-Spencer note, I would like to mention that as of yesterday, this blog has surpassed my previous blog in visits. I kept that blog from 2005 - 2011 and it had 770 posts...that's 5 years longer than I've had this blog and 5 times the posts. So I feel really good about what I'm sharing here for it to be visited so frequently. It's sometimes hard to talk about what I talk about. Some things I don't talk about at ALL. But this is where I empty out my heart and brain and for whatever reason, people are reading it. They keep coming back.

Thanks for that.


  1. Iodine maybe? And good luck to you and your adorable family!

    1. Iodine! Why couldn't I think of that?? I was so close! Thanks Anonymous!

  2. I was going to say Iodine, but someone beat me to it, so now I will say that I love that he is in tiger PJ's. for some reason this makes me very very happy. <3

    1. They're cute but sad all at the same time.

  3. I'm with you all the way. I hate just saying "Hang in there." when so much is going on, but that's all you can do. Hugs from wherever we may be - currently Texas.
    Phoebe's Mum

  4. Hope everything is okay now. At least those phone calls provided you with an opportunity to prepare for whatever is in store for you, guys, after the said medical procedure. Best of luck!