Wednesday, August 15, 2012


Liam is recovering so well, his temperature went up a little yesterday, so we were “on alert”, but it went down again. He’s having more quiet time right now, or at least we’re trying to get him to. Yesterday he only slept about a half an hour during the day. Troy and I are way more exhausted than he appears to be, not to mention that he gets up multiple times a night. Last night Liam was on his iPad with Troy reading, I went to see what they were doing and Troy was fast asleep, but not Liam.

Our oncologist had mentioned if we want to discuss the treatment plan and next steps that we can talk to her this week. I called yesterday and got a little lecture from a nurse I don’t know, “well, you should have talked to the dr on Monday, that was clinic day, I can’t guarantee you can talk to her.” Blah, blah, thank you for the lecture. Anyway, the doctor called me within 15 minutes and told us to come in. We spent 1 ½ hour with her and our primary nurse, I am so amazed and thankful that they take this kind of time to spend with us, our team is truly wonderful and supportive.

Liam will get checked out Thursday, if his incision has healed enough, we'll go ahead with the first of three high dose chemo cycles next week.

A big part of our challenge/confusion/concern is that Liam has had so many “blips” along the way, with the first CSF test being positive, but the 3 following were negative. (the first one negative result was before he got chemo so it's even more confusing) Then this lesion which is essentially biopsied, but not fully removed is a bit of an unknown. We can speculate all day long about what these mean, but both of these leave questions that they can’t give answers to. All we can really do is monitor and hope for the best.


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