January 5, 2012

What a difference a week makes! SD had nine days to work the dexamethasone from his system since his last appointment; his mood was very nearly back to normal, and we all experienced a peaceful night at the Renucci House Wednesday night. Because it was an NPO night (as all his January appointments will be), we allowed him to stay up much later than usual to eat before midnight. When he was ready to go to sleep, he invited Mandy to stay on his bed with his sweet smile, an offer she couldn't possibly refuse. We are absolutely delighted - and relieved! - to see our own boy coming back to us.

In the morning, we had to wake SD before he was ready, but after a short bout of whininess (who likes being awakened with a diaper change and the application of numbing cream on his chest, anyway?), he suddenly decided that he was in a great mood! This clinic visit was by far the most pleasant one we've had so far.

It didn't come without its problems, though. His line once again would not draw blood properly (they said it was still due to the steroids), and they didn't have time to wait for the alteplase to do its work. That meant they needed to draw blood from his arm for labs; he did SO well!

We had about a half hour to wait before being taken to sedation, so we brought SD to the playroom. We've brought him there before, but he never felt up to doing anything but sit on Daddy's lap and stare; showing him the "poke box" had only annoyed him. This time, once he realized that the poke box is actually a prize box, he became much more interested in it. He chose a small bucket filled with animals. He also got to choose a quilt from the mountain of quilts provided by a group called "Stitches of Love".

Before long, our nurse came in to inject the alteplase into SD's line, which set him back a little for his spinal tap. She also gave us SD's counts. They were not what we had expected, given the super numbers we'd seen last week. In fact, his ANC and WBC were very low, too low to begin his new oral chemo drug. The nurse explained that the low counts were to be expected and that it meant that the chemo is working. The reason that his counts were so high last week was that the steroids can boost counts, while the Bactrim can lower them. (Bactrim is taken as prevention of Pneumocystis pneumonia (PCP), a strain particularly dangerous to immunosuppressed individuals).

SD's spinal tap went fine and he was able to receive his IT chemo in spite of his low counts. We were told to hold off on the Bactrim this week to help his numbers increase and to have them checked in Traverse City on Monday. If they are high enough then, we can start him on the Mercaptopurine (6-MP), otherwise we'll wait until his appointment on Thursday to check his counts again.

The alteplase successfully cleared up SD's line and he received his vincristine around noon. The nurse allowed SD to help her flush his line when she was finished, which seemed to bump her up several notches in his opinion. Before she left he actually gave her half a smile; she had to work really hard for it, but it's the most any of the staff has received from him so far!

That night was the first time he has allowed tickling. Exciting!