May 3, 2012

Over the past week, we realized that we'd almost forgotten what SD was like before his illness. Because of the set-back last week, he hadn't had any type of chemotherapy for two weeks and obviously felt much better than he has in five months. He's been the vibrant, joyful child that has become a distant memory to us, having seen only glimpses of him to remind us he really is still there.

As is usual the night before an early appointment, we spent Wednesday night at the Renucci House. We arrived just in time to be treated to a delicious home-cooked meal provided by a local company for guests of the hospitality house. Many groups contribute in this way, which we appreciate so much! SD wanted to watch Winnie the Pooh when we settled in our room, so we got ready for bed and turned it on in hopes that it would help him get to sleep. This sometimes works. Not this time. Mandy suspects this had something to do with her sharing her ice cream with him (a RARE treat!) at 7:00 PM.

SD invited Mandy to sleep on his bed again. He considers this another rare treat, it seems; he smiles and giggles for the longest time before going to sleep, plays little games, comments on the city noises, holds his Mommy's hand...

Despite his late night, SD woke up on the morning of his long clinic day in fine spirits! He was cheerful most of the time we were getting ready. Since he was getting a spinal tap in the morning, he couldn't eat breakfast; Stephen and Mandy also skip breakfast on those days. In spite of that, he was happy to go see the "doctor" and get "poked", pushing elevator buttons and playing Angry Birds on the iPad as we made our way through the hospital.

SD acted like an old pro during the basic checks: he knows how to hold his arm for the blood pressure, Oxygen sensor, and thermometer. He knows where to stand to get weighed, and he knows not to lean on anything while they're checking his weight. He knows where to stand for his height measurement, though he doesn't quite put his feet back to the wall. These basic checks are done every time we go to clinic, and it's a well-known and comforting routine.

Nurse Mary came in and accessed his port (as a reminder, this means that she stuck a butterfly needle into him and taped over it to make an IV). SD began calling her "MehMeh" for the first time. Then Doctor Mary came in and gave him a brief checkup; after last week, they wanted to be sure it was safe to sedate him.

After his checkup, we went into the play room and SD chose a "poke prize." About half the time he's not interested in the prizes at all, but this time he wanted three! Two were bug collector kits, and he was also interested in a baseball bat with ball. He settled on one of the bug collector kits; it'll be interesting to see what he does with it this summer! While we were in the play room, we also met a young girl - probably 13 or so - who had Leukemia (ALL, just like SD) when she was 10, and has been off chemo for over a year, but recently started having headaches. So she was back in for a procedure to determine if her cancer had returned.

We were the first ones to go into sedation. While we were waiting, one of the male nurses started blowing bubbles for SD. This started a "bubble theme" that would continue throughout the day. The only thing different about this sedation was that SD actually fought it; he usually drops off immediately, but this time he really did not want to sleep! He also didn't want to wake up, which is normal. We always feel bad waking him up because he almost never gets a good night of sleep before an early clinic, but we have to wake him up before the sedation doctors can leave.

Most of our day in clinic went by swiftly! SD spent a good deal of time playing Angry Birds and Curious George at the Zoo. He also watched Winnie the Pooh (the 2011 version). We kept trying to get him to do other things, but he preferred brainless activities. we had planned to work on a birthday card for Uncle Josh (and SD was looking forward to it), but he would have nothing to do with it during his clinic visit.

Mandy and Stephen tried a grilled mushroom pizza for lunch; the clinic provides SD's lunches (pb&j that day), so he did not eat mushroom pizza.

SD did get to talk to Uncle Josh at one point, which he greatly enjoyed!

Near the end of our day in the clinic, we returned to the play room. SD got to play the Wii a bit, and Mandy gave SD chemo through his port for the first time.

Overall, SD did so well! Especially for not getting a nap. He only briefly got sassy at one point, but other than that, he was bright and cheerful the entire day!

After our clinic visit was over (about an hour earlier than we were expecting), we returned to the Renucci house. SD and Mandy pretended they were frogs while the dinner was being prepared.

Once dinner was complete, we played outside again until it started raining. When SD felt the drops on his head, he put his hand on his head and ran for the door!

It's hard to think of how the day could have gone better. We are so thankful for everyone's prayers!