January 15-19, 2012

On Sunday and Monday nights, SD woke up seeming scared, possibly in pain. He wanted to sleep with us. We decided to give him Prevacid Tuesday morning, which we stopped giving him since it changed to an "as needed" status. He went to sleep and stayed asleep with no trouble that night, so it seemed to have helped?

Also on Sunday, SD developed a runny nose. He woke with a cough around 4:30 Wednesday morning and spent the remaining hours of sleep in our bed again. He was wheezing quite a bit during that time, but it stopped when he got up and hasn't returned. We are praying that this doesn't turn into anything more.

We arrived at the Renucci House around 9:00 last night and allowed SD to use the play room for awhile after he'd had a bite to eat. During this time, he took his first solo steps! He may not have even realized he did it; he just took three steps toward a train set like he had never stopped walking. He hasn't repeated the accomplishment, but it will not be long before it becomes normal again!

Today was our last clinic appointment this month. SD seems to take each succeeding clinic vist more in stride than the last. He knows the drill: EMLA cream on his chest first thing in the morning, stats taken by Rick once we're checked into clinic, port accessed. He still doesn't like the accessing part, but who can blame him? After his port is accessed and labs are taken, we've been going to the play room to get a prize. Today he picked out a '67 Chevy Hot Wheels car, but we accidentally left it behind. SD cooked a meal in the play room while we awaited the summons for "road trip" (that's what they call the walk down to Sedation, which usually includes two patients, their parents, and a nurse).

SD always likes to sleep post-sedation, but today we had a long wait while trying to wake him! He hasn't slept that hard and long after a spinal since his first one, which had also included the placement of his port.

Soon after returning to our exam room we were told that we need to pause 6-MP yet again. This was a rather discouraging announcement; he has taken only three half doses since given the second go-ahead and his body still wasn't able to keep up with it. His enzyme levels are fine, but the nurse thought that his numbers first went down because of the Bactrim and now by his fighting off something. We were encouraged by the appearance of Dr. Kurt (SD's primary oncologist), however, whom we had not seen since a week before Induction ended. She answered our questions, and explained the next leg on our "Roadmap".

SD is to have his counts rechecked in Traverse City twice next week; if they are high enough, he will continue taking 6-MP. We will not need to go to Grand Rapids next week (unless he develops a fever for whatever reason), which will be a nice break after going every week for the past two months. It was a relief to hear that SD will not be required to make up the days of missed 6-MP. He will take what he can handle through this month, then it will simply be dropped.

Provided that his counts are high enough, Consolidation will end and Interim Maintenance will begin in two weeks! IM is scheduled to last for two months. During this phase, SD will receive vincristine and increasing amounts of methotrexate via IV every ten days, with no oral chemo at home. Of course, all this hinges on how the medications affect his counts. If they are too low, the methotrexate will not be increased. He will receive one lumbar puncture during this two month period, rather than the near-weekly ones he's been going through for two months.

After IM, he will enter Delayed Intensification, followed by a second Interim Maintenance phase. These phases are scheduled to last about two months each. We don't have the details of them yet, but it is good to know that in about six months, SD will be in true Maintenance!

Our clinic visit was shorter than usual today, ending right around lunch time. On the way home, SD got car sick. He has been susceptible to car sickness since he was an older infant, but this was the first time it's happened for quite awhile. We are not sure if this was chemo-related or something that would have happened anyway. Once he was changed and we were on the road again, he felt so much better and was finally able to fall asleep.