long day

Our day started bright and early this morning at about 4am when Ethan (and subsequently me) did not go back to sleep after some routine vital check ups in the wee hours of the morning. We tried for about 2 hours but I tossed in the towel at 6am and finally let him watch some cartoons (which he was pretty excited about since he thought he was getting to have a special privilege, watching a show "in the night.")

As you can imagine this made for a long day since we were both overtired. Ethan's first radiation treatment was bright and early at 7:30 at a different building at the hospital complex and so Ethan was thrilled with all of the walkways and bridges and new elevators to try. He was also very adamant about taking his suitcase with him and rolled it the whole way all by himself.

(Don't mind his cool mask, he just has to wear it when we are wandering about when he is neutropenic).

His radiation and intrathecal chemo went fine and we were back in our hospital room by 10am. Thankfully --- seriously, THANKFULLY --- Ethan took a nap after about a 45 minute wind down. I think this counts as his first official nap ever that he has taken at the hospital since his diagnosis. It was so, so good for him to get some rest!

The team decided that even though he had grown some bacteria in his cultures from last Friday, they were still going to go ahead with all of his chemo treatments today, since he is not showing any other symptoms. This afternoon he had 2 IV chemos - one of which has a serious potential to have an allergic reaction and so they monitor his vitals every 15 minutes for 2 hours during and after the infusion. Thankfully, everything went great and we celebrated the end of a long day with some time in the playroom and "Donald's House" (aka The Ronald McDonald Room). 

The plan right now is to continue taking blood cultures each day to see if anything grows and then hopefully we can be discharged on Friday morning after his radiation treatment. If his cultures do come back positive again, he would continue on IV antibiotics, but would likely be able to finish a course of those at home and not in the hospital. His counts have climbed a bit from Monday's 300ish to just a bit over 500 which puts him at borderline neutropenic, but at least he's improved. 

It was a long day for him and he fell asleep rather quickly after we had a pretty precious time singing together some of his favorite songs - ending with My God is So Big at his request. This boy and his joy --- it is such a delight to see and I am so thankful that even on tougher days, his spirit still remains so sweet.