Day of Praise...

Saturday, August 25th is the day for Paige that we have scheduled for prayer and praise, for those of you who are interested in participating. I'm not exactly sure how we'll spend the day - maybe the kids and I will dance around our living room to praise music - or I might go someplace quiet and solitary with my guitar.

Paige's central line (port) is scheduled to be placed next Monday. It is a bigger procedure than most of the other ones she has had, as she has to be intubated (have a machine breath for her).

And she has started walking stiffly again, which makes my heart ache. That's what she did last November, before we had a diagnosis. The implication is that there are a lot of cancer cells in her bone marrow. I'm not sure when her next biopsy is, which will tell us for sure.

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.

Monday

Today we go up to Dartmouth for a previously scheduled MRI. And I suspect we will get a talk about whether to do a little more chemo, or do nothing.

My plan of action is to research other hospitals, to see what they have to offer. The doctor called what she has something like chemo resistant - drat - well, it means untreatable cancer of the brain/spinal area.

I am going to push for them to put a port in her chest. It would be completely covered by skin, and she could then have baths and go swimming without us having to tape up her arm, which never worked well anyway. Because this girl LOVES to swim. We went to Dublin Lake on Saturday, and she walked in up to her neck. And then I held her and she wanted to go out even deeper. When it was finally time to go, she sat down in the water and said, "Wanna stay!" My little water baby.

OOPA DAISEY :(

We knew that we were still waiting on some tests, and one result came back this morning. It was not good - it was the spinal fluid biopsy from yesterday, and it had cancer cells. So Dana Farber no longer considers her a candidate for transplant. Ever. They think that she has had cancer the entire time, and some of the good results were just mistakes.

I'll post more later, but I really need a nap.

My gracious!!!

Paige's oncologist called on Tuesday, and said, "We have some sudden news..." Her spinal fluid biopsy of last week came back clear. And the bone marrow biopsy didn't look like regular cancer cells, so they sent it off to Boston to take a look, and Boston checked it out and weren't certain what the cells were, and told Dartmouth to start testing Paige in preparation for transplant.

And the week before they had given us a packet of information on how to discuss death with your kids. (And a most dreadful book on where you go after you die, filled with nebulous descriptions and cosmic illustrations. I gave it back to them, and said, "heaven is way cooler than that.")

So Paige and Ronda and I went up to the hospital today for lots of prep tests. Here was our itinerary:

8:30 meet with oncologist

9:00 Audiology test

10:00 Echocardiogram

10:30 sedation and bone marrow biopsy, etc

1:00 pulmonary testing

2:30 opthomology testing

wrap-up meeting with oncologist

Two tests results came back from last week today. The cytogenetics test was clear, and the spinal fluid biopsy was clear. Unbelievable. So next is a MRI on Monday, and then off to Boston with the kids on Tuesday for a myriad of other tests. And then admittance to Dana Farber on Friday.

And our isolation begins today. No visitors, no visiting other homes, no crowded places. No Francesca. :( She's my wonderful cat. I am actually looking for someone to adopt her for one year. If you want a quirky, loyal, highstrung gorgeous longhaired cat, and have no other pets that would stress her out, send me an e-mail (kerri-beth@juno.com) . She follows me everywhere, and I'm really going to miss her. And Paige is going to miss "Checkiss" as she calls her.

Paige's hair fell out again.

So your prayers are being answered!! Pray that the tests will continue to come back good, and that Luke and Paige will stay healthy between now and Friday.

A somehow peaceful limbo

We have no results yet from yesterdays tests. The doc sounded gloomy, and discussed quantity of life versus quality of life. My personal philosophy is to try and try (for a cure). If a new drug extends Paige's life some, with minimum discomfort, and gives them good data to use for future AML children, then I am all for it.

I was craving a weekend of quiet and solitude, so Ronda and super-grandma wisked my kids off for their second Maine weekend in a row. And it has been really peaceful here.

Melissa, Paige's god-mother, came with her mom on Thursday to hang out, and Melissa took almost 300 pictures. I kid you not. Some were so beautiful they made me cry.

The Rollercoaster Continues...

Yesterday one of Paige's docs called us to say that the gene mutation that has been present before in her marrow isn't there, according to last Friday's test results. (Hey Sarah, if you can explain the cytogenetic thing in a couple sentences, please do. It's kind of confusing to me.)

The implication being, as I understand it, that perhaps some of the cancer cells seen in last weeks biopsies may not have been cancer. So on Friday they are redoing both tests, and giving her a different kind of intrathecal chemo than she has gotten in the past. And based on the results, we will put together a treatment plan. Dare I hope?

One note - if you are writing a comment, could you please say who you are? Thanks.