Yep....we are on dex...again....so the Lucy monster is bound to come out several times....again... It seems as if we JUST got off dex! And we are still trying to figure out why, but every time Lucy is on dex, Jack insists on terrorizing her more. Even after we remind him. It's like he wants to see how far he can push her before she will attack him, and trust me, its not much. And she WILL attack with claws out, and like T-rex, she will eat him alive. LOL It's quite amazing to see a 4 year old in attack mode. Heck, I'm afraid of her at times. We have seen a pattern with the dex/vincristine pulses. She comes home day 1 and day 2, and is ornery and can have mood disorder these two days. Her appetite starts to increase, but it is usually for one or two particular foods, and they are almost ALWAYS salty foods. This pulse is sausage. or Sausage gravy, or sausage and egg biscuits...lol anything sausage. Then by day 3, the vincristine seems to overtake the dex, and she has a lot of pain. Regardless of the preventative meds we give her. She will pretty much lay on the couch from days 4--6. Yes she only takes dex for 5 days, but the pain and effects lasts at least until day 10. Which is why the dex pulses seem so close together. And she doesn't sleep well on dex. Its like a light sleep. If you were to walk into her room, she would immediately sit up and ask what you were doing, even if she had been asleep for hours. So she is always tired during this period. We don't make her wear her leg braces because its too painful. And she gets lots of warm baths, those seem to help. And I think I may have mentioned before, but she also has different personalities that come out during this time. Our newest one: Mary, has been around a lot. Mary is sweet and kind and very motherly. We like Mary.
So, not only do we have dex for the next 4 days, we also still have life to live. Tonight Jack has his school concert, which he has informed us, he will be hiding somewhere all day so he doesn't have to go. LOL He's so much like Zach, he hates being in public, unlike Lucy and mommy. We have decided to have Lucy go to my mom's tonight so we don't have an unpredictable monster on our hands during Jack's performance. I feel bad for the kid already, he has to wear gray and is a donkey. If I didn't think it was a life lesson in that sometimes we have to do things we don't like, I wouldn't make him go. Zach and I are still debating that one. We both feel the same way. The kid HATES standing up in public, and doesn't enjoy singing, so we both almost want to tell him he doesn't have to go, but then what kind of message is that sending? Saying "ok, son, if you don't want to, you don't have to". When we all know we have things to do in life that we hate. On the other hand, we asked how important of an event is this? And would it really be sending that message? We make him clean his room, do his homework, etc etc and he says he doesn't like those things, and we say "tough", these are things you have to do your entire life, so learn now to just get them done. Its not like he will have to go and sing in front of people his entire life. I kind of feel like this is like the speech classes they make you take in college, or at least they used to, not sure if they still do. They were mandatory. And I would see some people really sweat through them and have anxiety attacks, and no matter how many speeches you made them do, they still never become comfortable with it. Same with work, they make people get up and speak because "its good for their development". I say bullshit. I say those who don't like that type of thing will find jobs that do NOT involve giving speeches or standing in public, and that is totally fine. And there is nothing wrong with that. Everybody has their strengths, so why concentrate on making everybody do the same thing to give them "development" when it really is a waste of time, and could be time better spent actually giving them something they enjoy and making them better at that. Like I would rather sign Jack up for a science fair. He could make his project, stand at the table, but not have to get up in front of a bunch of people, but he's still talking about his work and loving it. With that said, we are going to make him go tonight. Wow! I totally went off on a rant on that, didn't I? ;) Where was I going with this? ah,..yes...we are not taking dexter with us tonight for fear of adding embarrassment to the boy's already uncomfortable experience. lol
We also get to take dexter saturday to a No'Mo'Chemo" party!! That one we will risk the embarrassment. The family knows and understands all to well about the dexamonster ;) AND...I'm sooo excited to help them celebrate their end of treatment. The Barnetts are the ones who reached out to us in the very beginning of Lucy's dx and has answered questions and been there for us from day one, so I am sooo happy and feel very privileged to be invited to the party. If you want to read Nick's amazing journey, his mom, Nichole, keeps a website "bornwithacape"
So...we have one more dex pulse in June with full dose, then we get the dose cut in July until the rest of Lucy's treatment. Not by much, but less is better than more in this situation. AND I hear different reviews. Some people say they saw no difference, others say they see a big difference. So we will let you know come week 69, which is in July ;) We are currently in week 57....almost half way through our treatment phase. wow!
Well, I know this was an all over the place blog (usually they are, aren't they), but now I must assist the ever demanding dexamonster. She's tired, hungry, in pain, and bored....lol
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