Random Thoughts

Today and yesterday we’ve just been dealing with Mac throwing up. Its been a combination of feeling nauseous, hating his oral meds and having mucous in his nose and throat. Thank heavens they finally took him off all his oral meds today and they are giving them IV. Watching him throw up is the worst. Especially when he throws up a bunch of milk too. He is an equal combination of happy and fussy. He wants to be held a lot but the doctors told us it would be that way. Plus I love getting to hold him and be with him all day. I’m glad that me holding him is calming and comforting.

Today I’ve just been thinking about how glad I am that his cancer is almost 100% physical for him. All he knows is that his body doesn’t feel good. Amazingly and miraculously his body works really hard to get him feeling better. I guess what I mean is that compared to someone older than him, he doesn’t think about “the scary things”, the “what ifs”. Most importantly, he didn’t hear the doctors tell me that his prognosis was a little better than 50%. He doesn’t know the difference between the oncology floor and the intensive care unit. I hope that Jeremy and I help him, not know. I just want him to live his life and get better.

The leukemia in his spinal fluid is still negative so that is wonderful. But I guess compared to what they expected, it took longer to get rid of it than they thought it would, so that will mean more IT chemo in the cycles to come.

They are a little concerned about his weight but for now they are just watching it. They have talked about putting a tube from his nose to his stomach if we need to. Hopefully, NOT. It is amazing how skeptical he is of what’s going into his mouth. He stopped using a paci at night, he is nervous to drink out of his cup and he is refusing almost all baby foods. I don’t blame him. Can you imagine people putting nasty meds down your throat without any warning? And for him, he doesn’t even understand why he needs them. The only thing he’s not afraid to do is nurse and I want to keep it that way. The nurses suggested adding the medicine to my milk and I was like, HECK NO! That is the only thing he isn’t afraid of.

So since we’ve been at the hospital and really I guess in the last week or two, he has learned to shake his head NO. It really is hilarious and cute. Doctors and nurses come in and if they do something he doesn’t like or especially if they try to give him meds, he just sits and shakes his head side to side. Haha. He’s smart I’ll tell ya.

Well he spiked a fever last night so we are back to vitals every 4 hours aka we’re up all night. But no big deal, we can handle it.
*today’s little miracle: no more scheduled oral medicines!

Oh and ps… Our good friend is in the process of making us our own website! I am going to transfer my blog there and you will be able to buy Team Mac wrist bands and make online donations if you wish. I will keep you posted, but for now you can find me here 🙂