Wednesday pm

I have so many thoughts swirling in my head, it's hard to know where to begin. Paige had a really rough day on Monday, and Monday night had a lot of pain. Tuesday was better. Last night Shannon and Anna spent the night with her, and Anna said that Paige didn't cry out in pain once, (hooray!!) though she did talk a lot in her sleep, and made her "wounded bird" noise (musicians, think a C sliding up to a G) often during the night.

Today was groggy. Paige's face is really swollen, which makes me sad. Her kidney function isn't what it should be, and the pain medication they finally found that makes such a difference with her pain level affects her kidneys. After lunch Paige wanted to go for a stroller ride to the playroom. She looked quite miserable.

Paige and her huge bowl of Halloween candy will not be parted (thanks a lot, Aunt Lulu!) She doesn't eat much, but hands it out, and wants it to be right next to her on the bed.

I have had the little flicker of hope (which a few days ago had almost completely gone out) fanned into a bright little bonfire. A little hard to explain, but why sit around waiting for death, when I can be putting my energy into hope and life? Cancer cells are not more clever than God.

Prayer list:

• my stress level
• Luke; he is acquiring "girlfriends" here left and right (mostly nurses) so that "if one dies, I'll still have one left."
• Paige's kidneys
• for Paige's body to attack the cancer cells - everywhere, but especially in her right knee, and in her CSF (cerebrospinal fluid)
• that she will be well enough to have fun!!!!!!!!!!!!!!!!!!!!!!!!!

Tomorrow at 12:30 a group of people from Newport NH are coming to pray for Paige. They are part of something called "Healing Rooms" a Jesus-centered prayer/healing group. Join in with them at 12:30 if you would like!

Ok. I need to go snuggle with Paige.

Saturday Evening

Paige had a great evening! I left to get dinner, and when I returned, she was eating a pot pie. I think she ate the whole thing. I took a nap a little later, and awoke to Paige making various animal sounds with Uncle Scott. They were roaring like lions, and she was crowing like a rooster. Then she started singing him a song. For a while people just stood around watching to see the funny things she was doing and saying.

I asked if she wanted to go on a walk, and she did, so we went, and our entire group crowded into the playroom where she wanted to sit on my lap at a little table. She colored a picture for Daddy, and when she noticed that everyone but the four of us had left (to give us some space) she said, in a worried voice, "Where friends go? Where people are?" And then she saw that the door was closed, and she started crying. So we invited them all back in, and she proudly held up her drawing for them to admire.


So it was a great evening, and I am thankful. Here are some pics from this week and hospital stay.

Saturday

We are camped out at the hospital, in a nice big room. Paige is still in quite a bit of pain from her right knee. Her pain medication dose keeps being increased, a number of times each day, even, but it still doesn't seem to be enough. Mostly she lies in her bed (on a big air mattress on top of a regular hospital bed) watches movies, and picks who she wants to cuddle with.

Yesterday she amazed us all by declaring that she wanted to go to the play room. I carried her there, and we sat in a chair for 15 minutes, while she clutched her princess lunchbox (which contains all her treasures, and is very heavy- but she refused to be parted from it). Then she wanted to go to the gift store downstairs, so Cote (her cousin) pushed her very heavy IV pole and I pushed Paige in her stroller. While we were in the store, she said she wanted to go home, which made me cry.

Paige also seems to get really anxious sometimes. I think her nerves must be shot from being in pain, and from this new lifestyle of being in the hospital stuck in a bed. It's a relief every time she asserts herself and is more Paige-like - like when some of us were standing around her bed talking, and she was trying to watch "crehbulls" (the Incredibles) and I guess we were bugging her, because she kept calling out, "no talking!"

I am sometimes heartsick, sometimes ok, and sometimes stressed out. Pray that our time here will be sweet for all of us, and painfree for Paige. And please pray that she won't be so anxious.

She gets platelets every 8 hours, and her risk of bleeding right now is actually quite reduced. The cancer on her spinal column could still do bad things quite suddenly. Anemia might be how she eventually leaves us, which I have heard is quite gentle and peaceful.

God, are you sure you don't want to do a miracle after all?

Wednesday

This is Ronda (Kerri's sister) writing from the hospital. Kerri asked me to give an update on Paige. Over the past 48 hours, her bladder has not worked and she has experienced more pain in her legs. She had radiation directed at her spine last night but it did not seem to help the situation and she is now catheterized. She is also now needing a blood transfusion every day. After consultation with her team, Ben and Kerri have decided to keep her at the hospital from now on. Chemotherapy has been discontinued and the emphasis will be on spending time with family and staying comfortable. Paige's doctor said today that it is likely that Paige has less than a week left.

Saturday

A quick prayer request: Paige is experiencing a lot of pain in her right knee. I've increased her pain medication, but walking and being moved is sometimes painful for her.

She's had a pretty good day, and we had a nice time as an extended family going on a "leaf kicking" walk. The kids opened a box from a friend in Maine that was filled with dress up clothes, and Luke had a blast fiercely waving around his new pirate sword.

Paige is going to Dartmouth tomorrow to get platelets. That's all. I don't feel like saying anything else.

Wednesday

Paige has had two good days. We've had lots of family over, and she really brightens up when there are people around, and fun things going on.

Today Paige, Laura H and I went to the hospital for platelets and blood. Paige felt well enough to go into the playroom to paint and play with beads. She's been stuck on the couch watching movies for so long, that it's wonderful having her be more active.

Here are some shots from today's (Wednesday's) infusion.

A sad kind of beautiful autumn day

We're at the hospital now. We came in two nights ago because Paige had a fever. When we finally got here, her fever was gone, but her port was all swollen with blood, and unusable once again. Her blood isn't clotting like it's supposed to, even with the platelets and plasma they keep infusing her with. So the doctor brought in her team and had A Discussion with us about the implications.

Worst case scenario, she could have a head or internal bleed at any time, and be gone today. Or she could get an infection, and since she is so immune-compromised, be gone in a few days. Or neither of those things could happen, and she could last weeks, or, a more remote possibility, months.

So. A few days ago I got mad at God for the first time, and asked him why he needed Paige in heaven. Heaven is already cool enough already, but we down here are the ones who need her. What possibly could benefit from her being there instead of here?

A beautiful answer to my question came yesterday, when I went to the chapel here at the hospital for the Sunday service. I walked in just as the organist was playing the last notes of the closing hymn. So I asked the chaplain what she had talked about, and I had a wonderful and enriching time talking with her, gleaning little bits from her knowledge and insight. She pointed out that Paige came to earth with a purpose from God, and when she has fulfilled her purpose, then it will be her time to go. That made sense to me.

So things to pray about:

• that her body will stop making cancer cells
• that her platelets etc. would clot like they are supposed to
• that her port will be usable
• that she won't have any internal (or any other kind) of bleed
• that God would spare her life, like that guy in the bible who God told was about to die, and then the man asked for more time, and got it (dreadful grammar, I know)
• that if it's Paige's time to die, that her journey would be gentle and peaceful and without pain
• that regardless of whether she lives or dies, her mind, spirit and heart will be peaceful and her psychological/emotional etc. needs will be met
• you can pray for us, her family - but I feel calm, and so very loved by all of our friends and family, and I feel peace that must be coming from God. For these blessings, I am grateful.

We're Home!!

We are home at last, and our house looks AMAZING, thanks to the Shiloh folks, some family members, some NH friends, and probably a few more people I'm not remembering. So to all who painted and scraped and put in floors, and made food, and gave gifts, and donated money for paint and supplies, BLESS YOU!!!!

The trip was good. We were able to extend it by two days, since Paige was visiting a Florida hospital for half of one day, and then all of the next day, getting blood tests, and getting blood products. As for the rest of the week, I'll let the pictures do the talking.