At home and no plans…

Carter taking it one day at a time

Bennett stuffing his face with pita and hummus

Bennett teaching Carter about "The Benjamin's"

Carter had another great night of sleep. The boys have been getting to bed a little later because of our crazy schedules, and Matt and I are still trying to get a handle on our routine at home. We now have to give the boys separate baths (which takes twice as long) and Carter has to get his meds (which is a constant struggle). He fights us with each medication, and it is usually 3-4 medications 3 times a day. Sometimes he ends up gagging and throwing up all the medication after we’ve given it. It’s hard, and he hates us for doing it and doesn’t understand the importance of each one. I think the only thing that makes him feel better is when Carter’s done he says, “Benny’s turn”. Then, I turn my back to Carter and pretend I am giving Bennett medicine. Big brother is a good sport, although each time Bennett says (out loud) “this is just pretend, right?!” We have Bennett winking now to show we are pretending.

Carter’s eating was okay today. He told me he wanted a quesadilla and guacamole for lunch. He had about 4 bites and then threw up. Then, he told me he wanted a pb&j, which he only ate about 2 bites. Normally, I would make the boys one thing and make them eat whatever it was, or they’d be hungry. Now, we find ourselves doing anything and everything to please Carter with what he wants to eat. We’re just happy if he shows an interest in something. For dinner we used our Restaurants On The Run gift card (THANK YOU to everyone who has contributed to this!!!), and ordered Daphne’s. The boys love chicken pitas and hummus. I was curious to see how Carter would do, and he did great. Of course, a good portion of it came back up when we gave him his meds before bed, but hopefully he got some nourishment?!

It was nice to just be home with the boys today and have no plans, which is such a rarity for us nowadays. Matt was able to go into his office for a little bit, which he hadn’t had the opportunity to do yet since this whole ordeal began. I think it was good for him to be back in there, and obviously he’ll try and get in there whenever possible. Caring for Carter is kind of a two person job right now though. It’s very difficult to balance anything else. One of us is soothing him as the other is flushing his IV lines, pinning him down for meds, changing his Broviac dressing, applying cream to his rash, etc. And, I must admit, I have been playing more of the soothing role as Matt runs around doing a lot of the work. It’s definitely a partnership, and I don’t know how we’d do it otherwise. Carter just wants to lie down and be held a lot. Occasionally, he’d have enough energy to get up and pretend to be a rock star with Bennett playing their guitars (which was so great to see), but the chemo is definitely starting to take a toll.

Tomorrow we are off to an early appointment at the lab. Hopefully, this family will wake up in time. The boys have been getting up between 7-7:45am, and we will have to leave the house at 7ish tomorrow! We are hopeful good news awaits us. We will be finding out the results of Carter’s AFP levels they drew earlier this week.