Miserable Inside But Not Out

Off and on the past three weeks Anya has been feeling more sick than her 'usual' since she started this last phase of treatment. She frequently tells us, "I feel miserable inside but not out". We're not sure exactly what that means but we know that we hate that she feels sick!

Some days Anya seems fine, but then other times she is especially sensitive and fussy. In her previous phase of treatment, we asked her doctor about her fussiness and she just reminded us that Anya's medications take a toll on her body and that the fussiness is to be expected. I guess we hoped for some type of "make it all better" pill. But since things were better for a while, and they have recently upped her medications, we plan to ask the doctors about it again this Friday at Anya's clinic appointment. They'll probably say the same thing as before, but we always hope there will be something we can do for her.

Speaking of Anya's next clinic visit...this Friday Anya will have her second spinal tap since we've returned to Kansas City. As you may recall, the last spinal tap was very painful and overall a terrible experience: most of all for Anya (who had to go through it all) but also for Israel (who had to watch it all) and for me (who had to hear about it all). Let me tell you...I was NOT a happy momma when I heard what she went through.

In Toledo, Anya's spinal taps were always done under "conscience sedation" - basically she was asleep. However the Children's Hospital here in KC uses a different type of sedation medication and for some reason weren't able to regulate it properly during the spinal tap procedure. So we're desperately hoping that things will be better this time. Anya's new doctors make no promises, only expressions of their desire that things will work the second time around. If they don't, we'll probably make a STRONG push for them to use the type of medication for Anya that was used in Toledo unless of course, it is not in Anya's best overall health interest.