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.