Starting up at Lehigh Valley

Today Max, Tracy and Bob made our first trip for this new round of chemo at Lehigh Valley. Max was very excited to have Mom along and was very anxious to introduce her to everyone. Unfortunately he'd forgotten that Mom had met everyone at prior Christmas Parties and Talent Shows so it was a shade anti-climactic. Max was extremely goofy while trying to show Tracy all the great stuff that is available to play with there. He made some canned tomato sandwiches (two pieces of bread, a toy can of tomatoes, and cheese - can't forget the cheese) along with a slew of other slightly less appetizing selections.

We went over the possible side effects of vinblastine which aren't as bad as his prior treatment of carboplatin and vincristine (we'd done this at CHOP last week but we needed to sign a new consent form and it was a good review anyway). We also went over some recent concerns about Max's lack of sleep and behavior problems at school. He goes to bed just fine but rises very early and then ends up tired at school. He's having a hard time making it through the day without having some sort of temper flare up. Thankfully the flare ups have been minor. Our concerns are that it could be due to the tumor as it is located where his emotional control (and many many other things) resides but also could be due to the vinblastine as it is a known side effect. With only one dose under his belt though it seems unlikely that the new drug is the cause. Oh yes, the other likely cause is that he is simply a seven year old boy going through a phase that will pass as so many others already have. For now, we're waiting to see.

After our chat and their evaluation of Max, it was time to get his IV. That went very well but brought up another concern of ours which is that his veins might not support all the 'pokes' for a year. We're going to work on hand strength with him to try and make the veins in his hand and lower forearm more easily accessible but if we get through his next MRI, around July, and it looks like we'll be doing this for the long term we're probably going to get him setup with another central line (aka "port") in his chest. The obvious down side is surgery and the less obvious is that because of the risk of infection a fever means an overnight stay at the hospital. The upside is that it is lot easier to get an IV going through a port. Again, time will tell but if we do it he'll probably have it done at the end of August after vacation but before school starts.

Once the IV was in they drew some blood and did his shots. Max whispered to his nurse but Bob clearly heard the word "box" and thought it was Max asking for a treasure. His intent was actually only to show Tracy his "box" there which is a large shoe box decorated with a jungle theme and his name on the outside. Of course the box was brought into the room filled with a new treasure, a pin art impression toy, that everyone had fun playing with for the rest of the visit. Max got his shots of Sandostatin and Lupron and then we horsed around until his blood work results came back.

His counts were fine so he got his chemo, they took out his IV, and we headed home. All in all a good trip out there. Along the way today we learned of a baseball league that he can play in but it is about an hour and 20 minutes from home.