Saturday at our house

Thursday

To my immense relief, the doctors came up with a good pain management system for Paige. That, combined with a break from chemo (her last day for a few weeks was last Friday) has made a huge difference in how she is feeling. Today was the most active and Paigelike Paige has been for weeks!

Make-A-Wish came this morning to talk with us and Paige to get an idea of what she would like for her "wish". We finally agreed on Disneyworld. So we are leaving on Monday! We'll be gone for a week, and Casey, our "nanny" will be going with us.

Other news of note: our wonderful friends at Shiloh Chapel in Maine are sending a large crew down on Saturday to paint, lay hardwood in our living room, and do other misc. projects. Their generosity has been amazing, and I'm looking forward to spending time them on Saturday. Luke will love watching the process and hanging out with builders. He is really into construction and loves to figure out how things work and go together.

When Ben was sent back home from Iraq, the Army sent another soldier to take his place in the field hospital. Unfortunately, it was someone who really did not want to be deployed. (Some guys actually volunteered to go; this guy was not one of them) And he has kids. Anyway, they arrive home from their year in Iraq on Monday, and I want to honor that soldier and his family somehow. I'll be thinking over the next couple days of how I can let them know that I appreciate what he did, and what their family had to give up so that Ben could be home with us.

I bought Paige her own sparkly nail polish and lip gloss the other day. She puts the nail polish in her pocket, and carries it around with her. And she put the polish on her toes all by herself!

I was doing some research the other day, and discovered that decitabine, the chemo she's on, can take up to 3 months to start working. I was not happy to learn this. So please pray that God will speed it up, and make it start working right away! And the oncologists have warned us that they don't even know if this drug will work at all.

God is a scientist, and he knows how to make the cancer cells stop dividing, and the good cells to do their job.

Friday

Paige's cancer is now detectable in her blood under a microscope. 18% of the cells they saw in her blood were "naughty cells" as we say to Luke. For a number of months previously the cancer could be seen only by taking bone marrow aspirates/biopsies, and the few times they saw cancer in her CSF. Yucky news, but not shocking.

I have been wondering how much Luke understood about all that was going on. I had talked about the possibility of Paige dying a number of months ago with him, but didn't know how much he comprehended about her current status. Tonight when I was snuggling with him, I asked if there was anything he was worried about. "You mean like Paigey?" was his answer. Then he said he had good prayer manners, and proceeded to pray, "Dear Father, please give Paigey a good night...and make her all better...and don't make her die." Ok, I thought. He gets it.

I explained to him that if Paige does die, we'll be really sad, and cry, but that we'll still have fun times too, and laugh, and do things like go to the playground. And I told him that we were still asking God to make her all better.

"...being sure of what we hope for..." My hope is that Paige will live to be 78, and a grandmother. Faith is a scary word to me, so for now I think a lot about hope. And I still have hope.

Today Paige had a few good hours while at the hospital getting chemo. It started when I handed her my lip gloss to play with, and she immediately started making adorable faces and being really talkative. She put lots on, and I kept saying, "Ok Paige, that's enough lip gloss." And she would say "Onnnnneeeeee more." And I just couldn't resist. So her lips got nicely moistened today. Then she wanted to go to the playroom, where she sat at the table and did crafts for quite a long time.

Tonight she is fussy and seems to be hurting some (despite the increased dose in painkillers.) I really hope she's feeling better by tomorrow. We are supposed to go to a condo on Lake Winnipasauke for a few days.

Tonight I was lying next to her on the folded-out futon bed. I opened my eyes, and her face was about 5 centimeters from mine. She started shaking her head side to side, and I asked if she was giving me a nose kiss. Yup. It was quite adorable.

Tuesday

Paige is doing ok this week. She has only 3 days left in this cycle of chemo. The medication manages most of her pain. Tomorrow morning she sees the cranio-sacral therapist again. She spends some days lying down, and other days she walks around and plays. Pray that her blood will clot properly, which it currently isn't. It's not an emergency, but it makes her port unusable, since blood has pooled under her skin at the site. So for now she gets more pokes.

Sabbath

Paige has had a rough few days. (We went home on Tuesday.) Thursday night she was awake most of the night in pain. Tylenol and morphine didn't seem to help. She was really restless, and she moved from the futon bed in the living room, to my bed, to her bed, back to my bed, and we finally ended up on the futon, where she wanted to watch movies and look at books. She loves her Noah book, and keeps calling Noah "Jesus".

I called the oncologist at 4am, who said maybe we should come in early to chemo. We would have left the house at 9:30, and instead Paige and my mom left at 7:00 so she could get some pain management before her chemo started. Dad watched Luke for hours, and thanks to my wonderful parents, I was able to catch up on lots of missed sleep.

The oncology people made a handy dandy daily medication schedule that includes 3 or 4 doses of oxycodone, some steroids, pepcid for her tummy, adavan, zofran for nausea, miralax for her digestion and probably some other things I'm not remembering. (Mom has Paige tonight, so the list is with her.) I went over to Mom's tonight to drop off some medication, and Paige was on a mattress in the living room, watching Barney and eating a double cheeseburger.

Her pain at this point is caused by all the cancer cells in her marrow/body. The chemo regimen she's on isn't fast acting, and I sure hope it kicks in soon.

Last night I lit some candles and Luke and I had a Sabbath meeting. I said a prayer and we said what we were thankful for. I don't do this very often, as was evidenced by Luke's enthusiastic, "And now, let's tell ghost stories!" He sat on the coffee table next to the candles, and rattled off 3 or 4 stories like lightening, complete with many gestures and facial expressions. One of them sounded suspiciously like "Beauty and the Beast" which he had just watched that evening for the first time. How the heck does he know what a ghost story is? I just laughed and laughed and told Luke what a great story teller he was.

Prayer list:

1. for Paige not to hurt!
2. for her appetite - she lost weight and muscle during her two week hospital stay
3. for her chemo drug to do it's job, and start killing her cancer cells
4. for our family's peace, and "family-ness" as we are often in three different places at any given time (my amazing niece Casey is in the process of temporarily moving in with us to help out with the kids, so this should really help with having both kids at home more often.)

Feeling Better!

(on safari in Maine this summer)

Paige has had a great 24 hours. She has gone on lots of walks, had two baths, and has been downright giggly. They discontinued the morphine this morning. We have decided to go with a drug called decitabine, which is usually used in elderly AML patients, but heck, we were about out of options.

And she might get to go home tomorrow! She would have to come back once a day for 4 more days, then she would have a couple days off, and then come back for 5 more days of outpatient chemo.

Sunday

Paige had a great night! I am very thankful!!

all snuggly and sleeping

(written yesterday) Paige had a rough night last night, but a much better day today. We have cut dairy out of her diet till her tummy is back to normal. I wish I'd thought of that a few days ago.

Her oncologist talked to Ben today about test results, and options. Today's intrathecal sample came back clear (as they usually do) but her bone marrow biopsy came back showing something like 48% blasts. There are a few different options for how to try to slow her systemic cancer down some. Pray for wisdom in making this decision. We want the best results with the fewest side effects.

I had been tossing around the idea of going to a different hospital, or clinic, but I finally came up with a plan that I feel good about. I began looking for local naturopaths, chiropractors and cranio-sacral massage therapists, to see what they could do to complement what Dartmouth is doing. With this plan, we don’t need to travel far away. I really like what I have found for local resources so far. My chiropractor that we used when we lived in Claremont said he would see Paige, I got some good advice over the phone from a local naturopath, and I found a great cranio-sacral therapist who made a house call to the hospital last night to treat Paige. (I’m really excited about finding her; I think she’s going to be a great resource.)

I have also met some people this week who have encouraged me to have hope. One, another mother of a sick baby, lent me the book "The Secret" and encouraged me to keep believing, and told me that doctors don't know everything. It helped me decide to change my mental posture about Paige. These past two weeks have been really hard, and my mindset has been, "My daughter is dying." Now I am in the process of shifting my thinking to, "My daughter is fighting leukemia."

Something that’s been a huge blessing recently is finally finding a drug that helps me survive narcolepsy. Because I am more awake and can think more clearly on it, I am far better able to take care of Paige when she’s in the hospital. Before I was on it, being at the hospital was so hard for me that I could only stay one day before getting severely stressed out. I am also able to drive longer distances safely, so I don’t need people to drive me to the hospital like I used to.

The other day Paige said “I wanna gun.” So I zipped off to the gift store and bought her a plastic one that shoots discs, and she loves it.

Today (Saturday) Paige is doing quite well. She stood up some in the playroom, and went for a long stroller ride with Shannon and Casey. Her IV line got tugged this morning, so the IV team needs to reinsert it. I think it’s a pretty quick and easy procedure. She slept most of yesterday, and had a good quiet night last night.

Reminder to those posting – please don’t post anonymously – at least use initials!

So here is a prayer list: 1) for Paige’s digestion to be back to normal – we’re almost there, but not quite 2) For the four of us as a family 2) for wisdom in selecting her next chemotherapy

Thank you all for your love, prayers, and gifts. Your support makes it easier for us to survive these crazy circumstances.

Ow ow ow

(I wrote this last night) Paige is still in quite a bit of pain. On a positive note she played connect four in the playroom today for a little while. She also drank more than 8 oz of milk, and ate 2 bites of egg. But this evening she was back to grunting and wincing with pain. I think they are going to give her morphine every 2 hours tonight instead of every 4 to help with the pain.



It's frustrating to me that they are only treating the symptoms now, rather than the root of her pain. But we still need to figure out what the root of her pain is. We have an MRI of her spine and hopefully a CT scan of her belly tomorrow, so we should know more by then what is wrong. She will also have a bone marrow biopsy, aspirate, and intrathecal chemo.



Today I went to the hospital chapel to talk to God, and had a good time telling him stuff that was bothering me. Then I borrowed a hymnal, and went to the nearest employee stairwell (chosen for it's acoustical qualities) and sang hymns for a long time. Then a security guard appeared, and said someone had called him to come see what I was up to. Apparently one of the many docs or nurses who had climbed the stairs while I was there was concerned enough to report me. For what, I don't know. The guard said that he had no problem with me being there, but when he left I cried and cried.



I have spent hours over the last three days doing Internet research, to see if I could find anything that might be causing Paige such pain. I have had a few theories, but the one I found tonight seems to be the best match yet. Neutropenic interocolitis. Even if I'm way off, researching gives me something to focus on, and is a way to make me feel like I am being helpful in some way.

Paige's poor tummy

Paige has been bedridden for days, and today was so sedentary she only moved her head. Her constipation has been cleared up, but now her tummy is still full of air, and is causing her a lot of pain. She has a tube down her nose to help suck out the excess tummy air, but it doesn't seem to be doing much good. She is on two painkillers and one sedative, and isn't eating.

I am not ok with this. And we have to sit around doing nothing until Tuesday, when MRI opens, so we can see if this is being caused by cancer on her spine causing nerve pressure to affect her digestion, etc.

So please pray. I would like her to get relief right away.

We still plan to go to the lake house, once Paige is feeling well.