Owen’s Leukemia – Day 139

Happy Monday!  Today starts the really rough part of Owen’s treatment.  The next three weeks are going to be hell.  This week we go today, Wednesday and Friday for Erwinia (the drug that he is getting because he was allergic to the PEG), next week we go Monday, Wednesday (which is a whole list of BAD), Thursday home nursing comes to give him chemo at home, Friday back to the hospital and the nurse comes again on Saturday for more chemo.  That third week we go back in on Wednesday and it is the same as the week before with the home nurse coming Thursday, Friday and Saturday.  I have no idea how his body is going to handle this.  The good thing to look forward to is I think he gets a little bit of a break after these three weeks before he goes back into Interim Maintenance.

Today he got the Erwinia.  Jeff and I have been back and forth since last week trying to decide if we should put him on the trial study or not.  I mentioned before a little bit about the study.  It is to give the Erwinia via IV verses the muscular injection that is the standard of care.  Owen was pretty insistent that he didn’t want the shot in the leg, but as they were doing the EKG today and he was screaming his head off, I was wondering if we made the right decision.  We went on the study, but that means more blood work and they have to do 2 EKG’s.  Did I mention that he HATES having all of those stickers and leads put all over his chest?!?  I feel so bad for the nurses.  Getting his port accessed was quite a struggle too.  I think everyone on the whole 9th floor probably heard him then too.  We decided to leave his “tubies” in since we go back on Wednesday and didn’t want him to get poked again.  He dislikes the bandage to hold the tubies on, and then he won’t move that arm, but I think it is better then going through the screaming match again on Wednesday and Friday.

He didn’t have any allergic reaction to the Erwinia, so that was good.  There is still a chance that he reacts one of the next 5 times, and if he does, they stop that medicine and there aren’t any other alternatives.  He did get sick a couple of times today, but they weren’t sure if that was because he ate a ton of spaghetti for lunch or if it was from the medicine.  I am going to make sure he doesn’t eat that much on Wednesday, and hopefully it doesn’t happen again.

We got home and he had a super special surprise in the driveway.  A very good friend gave Owen his own little power wheels Dodge Viper car!  He LOVES it!  It is blue (his favorite color) and just his size.  He was a little timid at first driving it, but after about 15 minutes he was doing laps around the house.  This was the first time I think I saw him smile all day.  I will have to get some pictures soon to share.

Dinner time came and he started not feeling well again.  He was ready to lay down.  He was asleep by about 7 pm.  I hope he feels better tomorrow…