Friday, February 17, 2006

Glucose Load Test Results

Bob talked with Dr. Moustofi today. The results appear to be what was expected and Max is likely to start Sandostatin treatments soon. Dr. Moustofi and Dr. Moshang want to meet with Tracy and Bob at CHOP on March 29 to go over the results and treatment options. Max doesn't need to attend so it shouldn't be too much of an impact. Dr. Moustofi assured me that there is nothing they aren't telling me, they just want to go over everything in person before treatments start.

Tuesday, February 7, 2006

Glucose Load Test, Lupron, Movie Day at Lehigh Valley

This morning started early, again, because Max decided to wake me at 4:45 am to find out what time we were getting up today. I must have neglected to tell him that we could sleep until 5:30 am. Our trip out to Lehigh Valley Cedar Crest was pretty uneventful. Route 78 going the other way looked horrific but our way was mostly clear sailing except for the truck that had driven through the yellow warning barrels and onto the Jersey Barrier. They already had two big construction trucks there with arrows on the back diverting traffic so it must have been there for a little while but the driver was still sitting in the cab of his truck chatting with the state trooper down on the ground. Can't imagine he thought that was a good start to his day either. Guess it really is all relative. We got here about 20 minutes early so Max got to play with his new Leap Frog hand held game. For 8:00 am in the morning, this place is pretty busy but also pretty organized. They give everyone pagers, just like many of the restaurant chains around here, so they don't have to announce names. We met Bert (Roberta) and she took us back to Max's room for the morning. He was pretty worried about things today but the numbing cream on his arm worked pretty well so there were no tears this morning! The hard part, as we sort of suspected, was getting Max to drink the glucose in orange soda concoction. Max shook with the first several sips and it looked like it would be trouble but Bert started counting to see how long he could sip for (and Max negotiated for two prizes since the drink was "really awful"). The whole thing took less than 5 minutes I think. We started the 2 hour timer and Max has been watching Nick, Jr. ever since.

We finished at about 10:30 and went to the cafeteria for a bite to eat since Max had been fasting since last night. They were in between breakfast and lunch but Max was able to find a banana, a piece of white bread, a bowl of cheerios, a container of milk and a couple packets of ketchup. While we were eating, Nancy from the 'normal' Lehigh Valley called to see what they were supposed to be doing for Max today. They knew about his Lupron but couldn't remember what they had told him they would do for the movie. Since we had forgotten to call them yesterday I offered that we would pick up the popcorn for the movies and be there at 1:00 pm. On the way over to the other hospital we stopped at a Giant to get popcorn and Target to get Max's prizes for the day. We made it with a little time to spare. Nancy came out to see what movie Max had picked but said she needed 5 minutes to tie up some work. Karen & Anne Marie took the opportunity to rush Max into a procedure room for his shot so that all he had to do was watch the movie. For whatever reason, Max wanted to lie across my legs so I sat on the stretcher in the room and he did lay across my lap - it looked ridiculous since I don't exactly fit on the stretcher but Karen stuck him and got the serum in before he really had time to cry. Still looked like it hurt but he didn't cry. First time for that and it was over in just a few seconds. What a change - he was really looking forward to the movie.

The movie was great and Max really enjoyed himself. He picked a Scooby Doo video that he has and everyone joined him in chairs and bean bag chairs. It was pretty comical to see. Even Dr. Phil sat for a few minutes and had a bag of Smart Food. They couldn't stay for the whole movie but Max kept shouting to everyone with updates so he was happy. He'd been looking forward to this for the whole month and it really made his day.

Thursday, February 2, 2006

Ears/Eyes/MRI Reading/Oncology Follow up (CHOP)

Max's vision and tumors are stable which is good news. I had written for about 90 minutes when my computer crapped out and I don't have it in me to try again now, sorry. It was a very long day because we got stuck in traffic, missed the audiology appointment, ran long with our vision check and oncology had an emergency in the morning that set everything back so that we didn't get in to see Dr. Belasco until close to 2:00 pm.

The highlights were that Max was a really great kid today and very pleasant to be with. Tracy and I were both concerned about the results but his vision is mildly better and the tumors, size wise anyway, are unchanged. The MRI shows a slightly different blood flow through the tumors but they don't feel that is anything to worry about now. We go back in 3 months to repeat everything and we'll make up the missed audiology appointment sometime before that locally.