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They did another Lumbar Puncture (LP) (Spinal Tap) yesterday. He is experiencing all the symptoms of some sort of meningitis (either viral, fungal, bacterial, or lymphocitic). Low grade fevers, nausea, stiffness of body, painful movements, head hurts, photo-sensitivity (light hurts his eyes), etc.
They have had him on intravenous antibiotics for two days with no symptom decrease, the cultures are showing nothing, and the CSF (cerebrospinal fluid) from each LP was clear for bacteria or yeast - so that ruled out fungal or bacterial meningitis. We changed the antibiotics - and just to be safe will wait another 48 hours to go off them entirely.
However, both times the CSF showed lots of white cells with prominent blasts. They performed Flow Cytometry on his CSF cells which defined the blasts as AML again (a relapse of his original acute myeloid leukemia) and not a new cancer.
Yesterday they also did a bone-marrow aspiration which (on a positive note) only showed 2% blasts - below the acceptable 5% range. I guess Devon's blood is still doing it's job (grin). However - since I'm told the regular blood cells do not normally cross the blood-brain barrier to the CNS (central nervous system) I'm not sure how much that helps us here (with CNS leukemia).
This is officially considered a first relapse of AML presenting as exclusively meningeal or CNS leukemia.
He is miserable, lethargic, moans "Daaaeee" (daddy) alot, and just wants to lay on my chest or in bed. A coupla times per day we give him Tylanol and he will perk up for a few hours and eat something, laugh and act somewhat normal. Yesterday he dumped all his froot loops on the floor and started crunching the ones on his bed just to be impish. But as soon as the Tylanol wears off (an hour or two later) then he is back to suffering. We are trying other pain meds (not morphine yet because I hate what that stuff does) to see if they will work but so far not as good - and we can't give Tylanol more than twice per day because we don't want to either mask a fever, or cause any liver stress given the uncertain future (another potential transplant?).
He is on IV for maintenance of fluids because his normal fluid intake is erratic. Yesterday while they did the spinal tap - they administered his first intrathecal chemo dose (which is always the same no matter future treatment). Tomorrow we plan to meet with the "relapse team" and discuss treatment regimens. On Tuesday they plan to put a "port" in, so we don't have to keep poking his veins for IV's (they only poke the port once every seven days).
Then we go from there...