December 26-27, 2011

SD was sad to see our company go. He even let Uncle Josh hold him for a long time! This is rare these days; it's apparently painful for him to be held for more than a minute or so, so he usually just stays on the couch. He sure wanted to hug Uncle Josh, though, for a good long time!

After saying goodbye to all our visitors and Emma on Monday, we headed down to Grand Rapids. We arrived around 8 PM, anticipating a restful evening and intending to retire early. That did not even come close to happening! The effects of the steroids were at their height that night, causing the usual hunger, frustration over not finding foods that appeal to him, separation-from-Daddy anxiety, and screaming fits, but more intense than we'd seen so far. SD finally got about an hour or two of sleep starting around 10 PM, but woke up hungry and fixated on cheese at midnight. It was an NPO night, meaning that he could have nothing to eat or drink after midnight in preparation for his procedures in the morning. Once the screaming began, there was no letting up no matter what we tried. This led to the rather embarrassing (though not surprising) phone call from the front desk at 1:30am, resulting in both Stephens staying up basically all night in the family room downstairs.

Stephen took SD back to our room just before 6 AM. SD got about an hour of sleep while Stephen and Mandy got ready for the day. While it was not much, we were glad to see him finally get a little rest.

Running on hardly any sleep, an empty stomach, and 29 days of steroids, SD had a rough morning. When we got to the clinic, our nurse told us that before his port could be accessed, the doctor down in sedation wanted to take a look at the port site. So we went down to the basement, where the doctor said the port site looked fantastic and finally took out the stitch that SD is always asking about. SD did not like that experience at all. He didn't like being in the hospital, period. He didn't like that we wouldn't give him food or water. He didn't like having his port accessed. Or having nurses anywhere near him. Anything that he didn't like made him scream.

On the bright side, SD's actual procedures went quite smoothly! While he never likes having his port accessed, he allowed the nurse to poke him while sitting in his stroller. It was his first time not being held during that part; he seemed to prefer sitting right where he was. After last week, I think we were all holding our breath to see how the blood draw would go, but there was no trouble with the line this week. And his counts are looking good!

SD had a spinal tap with IT chemo and a bone marrow aspiration, which was the reason for the NPO. We won't have the bone marrow results for another day or two.

After he woke up from his sedation, SD naturally wanted to eat, but we couldn't find anything that he wanted. More screams ensued. This brings us to the most exciting news of the day, the event we have been waiting for all month long: SD received his LAST (long-term) dose of dexamethasone!!! It'll take a few days to leave his system, but this completes the induction phase of treatment. We are thrilled to have the first (and supposedly the hardest) part behind us!

When we were done with our clinic visit, we ordered pizza from a cafe within the hospital because it was the only thing that SD wanted the entire day, picked up some medication refills at the pharmacy, and went home. Stephen drove the whole way after a night of no sleep (with a brief stop for a cat nap along the way). Mandy thinks he's Superman.

SD now has a nine day break from any chemo meds. He has to keep up on the "lesser" medications, but we are enjoying not administering the vile-tasting one to our poor, brave little boy who has done amazingly well taking his medicine, even at the end of his induction. We are SO thankful for his cooperation.

One concern we currently have is that SD still is not walking. We talked to the nurse practitioner about it yesterday, and she said that they sometimes see this as a result of the steroids in combination with vincristine (another chemo drug SD gets weekly via his port). She expects him to start voluntarily moving around this week as the dexamethasone wears off. However, if he doesn't start walking, or at least crawling, within the week, he'll need to start physical therapy. We would appreciate prayer that he will start getting more active on his own. We are sure that he would not be thrilled to have to start seeing yet another doctor.