"Happy Maintenance Day!"

That is what we heard (more than once) this morning as we entered the clinic. It was kind of nice to have it acknowledged, like when someone remembers your birthday without you having to remind them. = ) 
Maintenance Day started out early - we stayed at Ronald Mc Donald House last night and we had my least favorite room in the place: room three, right under the kitchen.  Sometimes that room isn't so bad, like when there are a lot of teenagers in the house, because people sleep in.  Right now there are mostly toddlers at the house, so as one would expect, we were woken up at about 6am by the pitter-pattering of little feet over our heads.   Unfortunately, we didn't foresee that happening, so we stayed up fairly late last night, and paid for it this morning.  Noah finally got up at about 6:45, and I tried to go back to sleep, but to no avail.  Oh well. 
When we finally went to the hospital at 10:30, Noah was driven to distraction by thirst.  He had an LP this morning, so he wasn't allowed anything by mouth for 6hrs beforehand.  Thankfully, they got him in to the LP almost right away today; sometimes he has to wait a couple of hours before he goes in, so he goes without any food or drink from dinner the night before until after noon.  Today he was out of his LP and able to sit up by noon, so that was great.
The rest of the day wasn't so hot. I think today was the worst Pentamidine treatment he has ever had.
 He was so anxious, he couldn't even think about putting that inhaler between his lips from 12:45 until about almost 2:00.  We have been preparing for this treatment for a whole month, planning our strategy: he would get Ativan to help him calm down; he would get nose pincers to plug his nose; and some really strong gum to mask any taste and reduce the thick feeling in his mouth. And afterward, we would go to the new Lego store at Oakridge Mall to pick up a small Lego set as a reward for doing such a great job.  We realized today that there was a bit of a flaw in the plan- he wasn't given the Ativan until the RT came to give him the treatment. Ativan takes about 20 min to start working, so we were well into a big freak out before we thought that maybe it was starting to kick in.  He would just look up at me with panic in his eyes every time I tried to get him to put the nose pincers on.  He was so tense, he couldn't keep his legs still and he just kept his face covered with his hands. I don't think the Ativan ever took effect; I think he might need more next time, and a lot earlier!  It took well over an hour with a lot of praying, coaxing, cajoling, crying and gagging before I went to the only thing that has ever worked.  I got mad.  I hate that that seems to be what helps him focus enough to get it done, but I can talk until I am blue in the face about how "you have to be the one to decide you can do it,so make a decision that you can do it, take a big breath, OK, Noah, you can do this, challenge yourself to take 10 breaths before you need a break, then see if you can get to 20 and, OK, let's try again, calm down, you can do it .... grr...JUST DO IT!"    But until I tell him he is acting like a big baby, etc, nothing happens.  It sucks. This afternoon was no exception. As soon as I got mad, he picked up the nebulizer, put it in his mouth, and did 56 breaths! Without a break!  When he finally decided he could do it, he was done in less than 5 minutes!  It makes me want to pull my hair out in frustration, but I really don't think he has a lot of control over it. He gets into the room and like muscle memory, instinct and anxiety just take over.  I don't really know what else to do, because it seems like he hangs on to the anxiety, not letting "the plan" work. 
I did talk to our doctor and he suggested that Noah try Septra, the oral antibiotic that he didn't tolerate last year, instead of Pentamidine in May.  Hopefully he reacted to the Septra because his body was in shock from all the chemo he had recently started, so now that he is more used to all these chemicals, his body will be less likely to react.  We'll see. It would sure be nice for him to not have Pentamidine hanging over his head all month, making him dread going to Vancouver. 
He was really excited to go this time; his good friend Jasper is out of the hospital, and they really missed each other, so we decided to go a day early so we could hang out with them yesterday.  Noah and Jasper played the new Kinect Star Wars game for about 4 hrs!  Then they played a different game until Jacob, another boy their age, came in the  evening and they made up a crazy game with wheelchairs and Easter baskets that I can't even begin to explain to you!  After Jacob went home, Noah and Jasper watched a movie.  I would say it was about perfect. This morning they were both really sore!
I was also very happy to go back and spend the day with Jasper's parents, Barb and Steven.  We were only home for two weeks, but it felt a lot longer to me.  We spent the afternoon catching up and then we ordered sushi for dinner - yum! I am so thankful for good friends.... They may be finished after this round so they may not be there the next time we go, which is good but sad. 
We also went to Oakridge and checked out the Lego store. It is every boy's dream - there is a little kiosk where you can build your own mini-figures, and some sets have a "virtual box": you can hold it while standing in front of a camera and the finished set shows up on top of the box you are holding and moves around and opens up, etc on the screen in front of you.  Pretty cool.  There is also a whole wall of pieces that you can buy in bulk.  Noah had a lot of fun in there, checking it all out, designing mini figures and choosing the set that was to be the incentive to have a good pentamidine.  I took the opportunity to fool around with my camera, trying different settings and actually got some cool shots. Tomorrow I will put up some photos.
Now, I need to sleep....