April 23, 2012

SD's steroids have been wearing off. His last dose was Wednesday night (the 18th), and he has been slowly returning to normal more each day. He's not quite back to normal - even today, he will occasionally have a mood swing and suddenly get upset, to the point of shaking (usually accompanied by a brief scream). He is now able to control it, though; we tell him to "settle down" and he will concentrate and return to normal in a few seconds. Of course, it's hard to tell how much of this is inborn stubbornness and rebellion, and how much is due to the steroids.

When he's not having "steroid rage", he's usually quite a happy boy! He doesn't laugh at all while he's on steroids; his laugh returned to our house again a few days ago as the steroids started wearing off. It's odd, but this time, we didn't even realize his laugh was gone until it came back.

Stephen took Emma to church last night. It's sad to say, but going to church is becoming a rare event in our lives! SD was so sweet; he wanted so much to go to church! "ah-Me! ah-Church!" We did our best to explain to him that he could not go, and his face was so crestfallen! We felt bad making him stay home, but we have to limit his exposure the next few weeks.

Emma was quite sullen the whole time - we think she thought we were taking her to a sitter. Poor girl! She finally cheered up in the car when she realized we were on our way home.

We would like to ask special prayer this week, especially for Thursday. We are going down to Grand Rapids on Wednesday (and we hope to see the butterfly exhibit again that day). Thursday morning we report to the clinic before 8AM, and SD will get some blood tests done. If they come back OK, then he will start the day with a spinal tap and then be attached to an IV pole all day (8-9 hours). Since that's such a long day, we're planning to spend that night in Grand Rapids, too.

SD will be getting four different chemotherapy drugs on Thursday. One of them hits the bladder hard, which is why he needs to be on an IV: he'll be getting IV fluids for a few hours before and after that drug, to minimize the chance of damage to his bladder.

So, we'd appreciate prayers in particular for:

• SD's blood work to be good enough for the chemotherapy. If he gets sick, or if his body hasn't recovered sufficiently from his most recent chemo, then we'll have to just go home Thursday and try again later. That would be inconvenient - both for finding a replacement babysitter for Emma, and for the additional expense of travel and hotels. So hopefully his blood counts will be good and we'll be able to continue his chemo this Thursday.
• SD - and us - for patience, as we spend the entire day in clinic. SD does not really relax while he's there (understandably), and he will probably not like being there for so long.
• SD's body as it reacts to the new chemo drugs. Three of the drugs will be brand new for SD.