Tuesday

Yesterday's appointment went quite well. First we went to the pediatric floor to see her "nurse friends" and then down the hall to Pain Free, where they sedated her with a white liquid they put in her Picc. (hah, now, after she is done forever with her Picc, I finally learn how to spell it right.)

Usually she fusses a little, and gets woozy, and conks out within 10 seconds, at which time someone takes her from my arms and lays her on the table where they give her oxygen, and then wisk us out of the room, so they can either do a biopsy, or wheel her down to MRI. This time, she talked and moved around and fought it for like 3 minutes. It was amusing to see her be more determined than the anesthesia.

The doctor spoke to us twice during the day, and I felt like the discussions were very helpful in outlining our options. Basically, Paige's bone marrow is currently in good shape (but given enough time, they think the cancer cells, which are currently at 3% in her marrow, would multiply) in fact, that's the least amount of cancer that has been in her marrow since her diagnosis.

But her brain/spinal fluid area is the problem, and unfortunately, we have already tried radiation there and really agressive drugs, with only limited success. So we talked, and asked lots of questions, and came up with a plan that will hopefully extend Paige's life some, with what we hope are limited side effects from the treatment. We'll give her some intrathecal chemo, spaced out more than before - like once a week or once every other week instead of two times a week, to limit toxicity, and we'll give her systemic chemo (for her marrow/blood) in really low doses orally, to work at reducing the speed at which the cancerous cells there multiply.

So you can focus your prayers on Paige's CSF (cerebro-spinal fluid). Luke wanted a picture of Paige's brain, so they printed out a still from her last MRI, and Luke is fascinated by it, and spent some time yesterday trying to explain the picture to Paige.

I will still research online to see what else we can do, and look for other hospitals/data that might offer us some other options.

The Doctor is guessing that Paige has less than six months. But I am still hoping for a miracle. I am thinking of having a day of prayer for Paige. Traditionally it would be a day of prayer and fasting, but I like the idea of a day of prayer and praising God. There is a story in the Bible about the Israelites preparing for a big battle, and God told the king to have everyone sing and praise God, and God himself would go fight the battle for them. He did, it was a great success, and Don Francisco sings about the event in a song I love, called "Jehoshaphat."

It would be a way to say, "Hey God, we are helpless in this situaton, so we are looking to You to do what medicine cannot." The times I have been able to praise God when things were rough have been really comforting to me.

Oh yes, they pulled Paige's picc out, and will replace it with a port next week, so Paige can have water adventures.

Ok. That sums it up. This last bad news is hitting Ben and me pretty hard, so your prayers are appreciated.