Thursday

It's Thursday evening, and Paige and I are at the hospital. She has been feverish for days, and has been complaining of tummy and leg pain. To sum up, she is dreadfully constipated, and needs the stuff they give someone before a colonoscopy to clean out her belly. And sadly, this was entirely preventable. Mommy error - I didn't administer her anti-constipation powder on a regular basis. She is zonked out on morphine right now, due to her level of discomfort. I am looking forward to having my silly, rambunctious Paigey back.

The prayer and praise event on Saturday was wonderful. A small group of Paige friends joined a large group of others, for a really nice evening of music, food, prayer, and fireworks. Ben, Luke and I stayed until 10pm. Thank you everyone who joined us either in person, or in spirit! We felt supported, and met some new friends.

A wonderful anonymous donor has given us the gift of a lake house for a week, which we will use starting next Tuesday. I am hoping that we will have a steady stream of close friends and family to keep us company. With Paige's handy dandy new port, swimming will be easy. (no 20 minute wrapping of her arm with plastic bags and tape!)

I enrolled Paige in Kindermusik, which starts next week. It is a weekly program where little tots can play instruments, sing and dance, in a structured but low key environment. Parents come too, and I am really excited to be able to spend that special time with Paige.

Last summer we began the project of painting the exterior of our house and we got about 1/3 of the way done. So I am thinking of having a painting party sometime in September, to finish the rest of the house before winter. If anyone is interested in helping out with scraping, sanding or painting, send me a quick e-mail. (kerri-beth@juno.com)

Please pray for 1) our stress levels 2) that Paige will be well enough to go to our family reunion in Rhode Island on Saturday and 3) for Luke, as he processes the seriousness of Paige's illness, and deals with attention issues. I know that in some ways we have not supported him as well as we could have, and I want to make sure that he is getting what he needs.

Tomorrow's Event

(Luke meeting Paige for the first time)



I've had some trouble tracking down info about the praise event in New Ipswich, or I would have posted this sooner. This is what I have:



- it's at Mascenic High School in New Ipswich


-the BBQ is from 4-5 (other events go on until 10pm)


-the four of us and a few others plan to be there from 4-5 or 6.


Hope to see anyone there who wants to come!



My amazing sister had both of my kids up in Maine again for a few days this week. The timing was great, because this has been one of the hardest weeks I've had since Paige's diagnosis. Don't stop praying for us, because we need it!



Today Paige started oral chemo. Maintenance stuff.

Saturday

1) Paige's leg stiffness seems to have dissipated, thankfully.

2) Next Saturday, the 25th, happens to be a Praisefest celebration in New Ipswich (the next town over from Peterborough.) I'll get more details, but I believe it goes from 4-10, and there will be a puppet show for kids, free food, and fireworks. A bunch of different bands from local churches will be there. I thought that it was a wonderful coincidence that it's the same day as our Praise Day, and I am hoping to attend. So if anyone is interested, you can do your praising in a group setting, and meet Paige, if you haven't already.

3) Please pray specifically that God will help us to find a hospital/naturopathic center etc. that will be helpful for Paige. If there is something else more we can be doing, I want to be doing it. Some of you have written with suggestions, and that has been good in helping me get an idea of some of our options.

4) The wonderful people who work with Ben in the nursery at the hospital got Paige an AMAZING playhouse, with lots of pots and pans and dishes to go with it. So today's shots are of the kids playing in the "little house" out back. They adore it.

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.