June 6, 2009. 1PM. Cytoxan

As my day starts to wind down, (AKA: When Gregory is asleep) I start thinking about what I’m going to post about.  Despite the fact that I am constantly journaling, in my head, all day long, I feel like I don’t have much to say.  Until I  start to write.  The Busulfan is starting to rage it’s head.  Gregory is developing a rash on his trunk.  It’s not too bad, for now, but I expect it to get worse.  He gets his last dose in an hour.  We spent alot of time just being quiet, today.  He had a nap, too.  Grandpa showed up around 5:00 and thankfully, he was all grins and giggles.  He ate even less today, until I ran to the store and picked up chips and bean dip.  Once again, he polished off half a can.  Whew!  Not for me, thanks.  I also found out today, that he CAN store stuff in the fridge and eat it later.  I was under the impression that he couldn’t have anything that had been opened and was being stored in the common fridge.  Thankfully that is not the case.  Even though I would gladly waste half a can of bean dip if he got to eat half in one day.  I’m going to owe Frito Lay, big time. 

Today’s counts:  HCT ~ 33, White ~ 17.9, Platelets ~ 13.  For the record, today’s ANC is 10,024.  We have not begun to track it, I just wanted the number here for future reference.  I think I’ll include it with my routine counts from now on. 

His body is also showing some changes.  Most noteable is the fluid retention.  He is starting to kinda balloon up.  It’s a small change, but noticable to me.  His spleen is awfully enlarged, too.  Along with his lymph nodes.  Like I mentioned yesterday, the ones at the juncture of his trunk and legs feel like there is a beaded necklace under his skin.  A necklace with very large beads.  I need to ask the docs about his spleen.  I’m asuming that it will resolve itself through all this, yet I am still super touchy about that organ.  I’m still not 100% comfortable with him keeping it.  I know the team has made the right decision, I just have some lingering stuff about it.  Quite frankly, relapse scares the living crap out of me.  No matter how he sails through this, it is always a possibility.  An all too real possiblity. 

Tomorrow we start Cytoxan.  This is the one that needs to be flushed out of his system immediately upon entering his body.  He will be loaded with fluids, beforehand.  His fluids will start at 9:00 and he will be infused at 1:00.  He will receive Cytoxan Saturday and Sunday.  Since he will have so much fluid, I will have pullups and a portable urinal at the ready.  I’m going to try to talk him into pullups for nightime.  He gets so agitated and angry when he has to use the bathroom during his sleep.  He almost acts like he is in pain, even though he is not.  A quick trip to the bathroom and he is all better. 

It is getting harder and harder to get him to take his meds.  Lots of negotiating and time.  Threats.  While they are fairly tame ones, I hate having to resort to this tactic.  It just sucks that as soon as he wakes up I  have to talk him into taking six different meds.

It dawned on me tonight that I have been withdrawing.  I’m reaching out less and hunkering down.  There is a solid core of people that I reach out to regularly, a few that I contact occasionaly and the rest will get a contact when I really need a dose of reality.  At least the reality that was, before Cancer became a part of our daily lives.  Which doesn’t mean I don’t want/need external contact.  I eagerly read/listen to all of your notes/letters/messages.  Every single one gets a silent thank you and usually gets read several times.  Right now I am living moment to moment, anxiously waiting and watching.  Trying to notice even the smallest of differences in Gregory’s demeanor, the way he looks and the way he feels.  He does not yet have the capacity to convey to me what we need to know.  I need to be on my toes. 

I’m really starting to yawn, right now.  I napped for a short time today and am ready to read a little and then crash. 

Love, hugs, kisses and *fierce squeezes* to you all.  I miss every single one of you. 


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in busulfan, cytoxin, Day -9 through Day 0, spleen. Bookmark the permalink.

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