Updates

New nurse

The new hospice nurse visited today. The experience was wonderful.

She was warm, comfortable with all four of us, friendly and not overbearing. She definitely has opinions, but she also seems open to ours.

We weren't scolded for Steve's PICC line (which we've chosen to keep for now) or questioned suspiciously about our lack of a DNR (which is an ongoing discussion).

We both expect the hospice experience to be much more pleasant with this change. (And I'm thankful for all the support from family, friends and blog readers.)

Steve's week so far

Kisses from Cooper and Katie

Steve isn't feeling well this week. There's not a big symptom he can point to or pain to complain about. He just feels lousy all over.

We did have a scare Monday night.

I woke him up at 8 p.m. from a long afternoon nap so that he could take medicine and eat dinner.

He had a slight fever, felt nauseous, threw up a little and had awful congestion and a headache.

I called all of Dr. M's phone numbers (she called once, long ago, from her home, and you better believe I saved that number), and she called back in 10 minutes.

We reviewed his symptoms and the possibility that he was about to return to the hospital.

We decided then to:

• Give him Zofran for nausea.
• Increase his oxygen to 6 liters, up from 5.
• Start a new antibiotic, in addition to the one he's already on, in case there is still an underlying infection.
• Change breathing treatments to a schedule, rather than as needed.
• Go back to 16 mg of Decadron, after dropping for three days to 12 mg.

Within two hours, he was much better. I think part of the problem was that he was dehydrated (based on the output in his catheter bag) and that drinking more water helped some. Steve did say later that night that he had been afraid to drink much throughout the day because of the coughing it was provoking -- he desperately wants to avoid aspiration.

Tuesday was a better day. Today was rough.

He is exhausted. He misses being outdoors. He is short of breath all the time. He can barely talk. He says he feels helpless.

And you and I can't do anything to fix it. So I hold his hand and cover his face with kisses and rub the hair returning to his head and tell him I love him.

Katie decided to eat dinner right next to Daddy last night.

Natalie
Our friend Natalie flew in from Florida this weekend and spent a few days with us, helping with everything and everyone around the house.

She left her own family of three children and husband Ronnie (a friend and former Morning News colleague) to help. She left their youngest child, Mandy, who is also battling brain tumors.

Mandy was diagnosed with bilateral optic gliomas one month after Steve's glioblastoma diagnosis. She's endured IV chemotherapy every week since.

Of all of our amazing, wonderful, fabulous friends, Natalie "gets" what we're going through more than most. (It's a club for which we emphatically wish we were ineligible.)

You might expect me to write something like, "I can't believe that she would give her own time away from her family and her daughter fighting cancer to help others ..." But that would be insincere.

She's exactly the kind of person you would expect to fly across the country to wash our dishes, sort through insurance Explanations of Benefits, pick up treats at Starbucks, fold our clothes, clean out closets, grocery shop, help with Steve transfers and more.

Natalie, Cooper and Katie

Like a fairy tale
Being on the receiving end of so much selflessness and compassion is humbling. Our family experiences it all day, every day.

Take today. Betty spent the afternoon here with Cooper and Katie so that I could edit on deadline. Kelly brought dinner and left with a basket of towels to wash. Layne and Martin fixed a problem in the yard. Liz helped with nighttime chores so I could grocery shop (something I actually miss and like to do on my own occasionally).

When Steve was so ill Monday night and I was on the phone with Dr. M, I was supposed to be walking with friends. When Allison, Kris and Liz showed up on the front porch at the appointed time, I just waved them in the house.

They got to work right away. Allison read with Cooper, Liz read with Katie, and Kris cleaned the kitchen.

Allison later compared the experience to Cinderella (me) and the mice (them). I laughed but suggested that they should at least be considered fairy godmothers.

We are surrounded by so many fairy godmothers and godfathers -- family members and friends who reflect light, who embody goodness, who lavishly share love.