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Sleepy Day

Journal, Blood - 7/21/2009

Jaymun slept well last night, but pretty much fought any attempt to wake up until this afternoon. We roused him a few times but his head hurt, and he seemed dizzy, shaky, weak, and disoriented. He is acting similar to after last year's brain trauma. We give him Tylenol a few times per day for pain.

This morning we also needed to boost his Fosphenytoin (level had fallen to around 13 but should have been 20). That is basically prophylaxis against seizures to give breathing room for intrathecal chemo and also the immune-stimulating herbal treatments. Active CNS leukemia can cause seizures directly by irritating the brain, or indirectly by triggering SIADH. We've ruled out the SIADH because his "in's and out's" (liquid consumption/elimination) are matching. So the thought is that the seizures Saturday night originated with leukemic irritation. Possibly exacerbated by immune stimulants. In any event, the "fosphy" bolus this morning made him even more sleepy.

The good news today is that his marrow is great, and still 100% donor (the VNTR came back). And his blood lab numbers are great. We actually expected the blood and marrow to be just fine ...his numbers have been good all along.

Jaymun woke up to birthday presents from Nurse Bonnie and Nurse Kelly. We're looking forward to seeing him get enough energy back so he can enjoy using his new Thomas the Train pop-up fort!

Tomorrow morning we are having another lumbar puncture for intrathecal chemo (triple). We'll get new CSF numbers again. While they are doing the procedure they will put in a PICC line which will last for the next month or so to give more reliable access. Otherwise Jaymun has to put up with peripheral IV insertions which can be especially torturous given his chubby arms and little veins.

Jaymun had a few ten-minute bursts of energy later in the day - it's like his bubbly personality is tucked away and peeks out every once in a while.