When we first came into his assigned room today, Keith refused to go near the bed. Too many bad memories, I guess. So we spent the first hour in the chair reading stories. It didn't take him long to fall asleep and he finally preferred the bed to the chair. We just got his feeding tube put back in since he vomited it up yesterday. So, once his feed is started, they can administer the first chemo drug. After that settles, they can run the next two IV chemo drugs. One only takes a few seconds, the other is run over 6 hours and then he receives hydration for 24 hours after that. So, technically the 30 hour countdown hasn't started even though we've been here for 7 hours already. Awesome.
At least Dad is here now and he came bearing gifts. So Keith is happily watching Kung Fu Panda with his new sword and shield.
As far as what we've been doing the last 6 weeks and how Keith is doing, I'll try to sum up as best as I can. It might take a few posts. But now that I'm hanging out in the hospital, I've got time. Lots of time.
First, Keith. Considering everything, he is doing great. His energy levels have shot up since about 2 weeks post-radiation. He has a lot less nausea, even though he is still sick, occasionally. He is happier and is back "chasing" all of us around the house. He really is almost running. And he looks less and less like a bent over old man every day. He can get up and down the stairs at-will and loves playing outside as long as it's warm enough. He has put on a little more weight. We'd like to see more, but he has gained a couple of pounds which is huge for him. Keith has begun to ask for food but has limited his contact to "tasting" and "licking" anything other than milkshakes, soup or ketchup. He's having a small amount of trouble swallowing solid food due to his brain surgeries but over time he should make a full recovery from that. For now, the feeding tube is a permanent fixture of his face. I have a love-hate relationship with it. I love knowing that he's getting adequate nutrition and that he is at the very least maintaining his weight. I hate how the tape is always pulling on his face, how the tube is always in his way when he is playing, moving and sleeping. It really is obnoxious for him and I hate it for that. But even with a noxious tube strapped on his face and a shunt-bump on his sweet bald head, he's still the most adorable little guy I've ever seen.
Cole continues to fulfill the role of "older" brother by making sure Ally and Keith have everything they need. He will often tell me what "Keith" or "Ally" want which of course has nothing to do with his own desires. He is simply helping his siblings watch a certain movie or play with a certain forbidden item. He also astounds me with his logic. For example, this weekend I told him that he needed to get dressed because cousin Caden was coming to play. He responded, "I'm just a Superhero, Mom. And so I don't need to get dressed." Makes perfect sense, doesn't it? He also sets certain "codes" for himself. Like how Batman always wears socks but Buzz never wears socks. So if he's wearing his Batman shirt he must wear socks but if he's wearing his Buzz jammies he absolutely cannot wear socks. He authoritatively explains that if he eats his grilled cheese he will turn into a werewolf or if he drinks his chocolate milk he will turn into a vampire.
The kid kills me!
I must also add that the ONLY shirt he will wear right now is his Batman shirt with the yellow sleeves. No other shirt is acceptable. So if you wonder why it looks like he's always wearing the same shirt, it's because he IS always wearing the same shirt. I choose my battles carefully. You can't expect me to defeat Batman every day, right?
Ally's infatuation with food, stickers, wearing boy's underwear and throwing back a Coke now and then continue to endear her to our hearts. Aunt Syd has nicknamed her "Homeless" because her hair and attire often question the existence of a mother.
For now, that's the update. I've got lots to cover but also lots of time tomorrow when we're letting the IV run. Thanks to everyone who's checked in on us lately. I know when I start getting emails from long-lost friends wondering if everything is okay, that I better start updating the blog. Another hint is when I start receiving threats from my family.
We are well. Really. For a few weeks while Keith was off-treatment, we almost felt normal. It's definitely a new kind of normal but normal nonetheless.
