As Emily’s situation had worsened and our actions became more dramatic, the audience for Kari’s blog exploded, and we started a Facebook page for it because it was easier for people to share. Between CaringBridge and Facebook, Kari got hundreds of comments every time she posted. When I couldn’t sleep at night, when I felt too tired to worry, I read messages from our families and our friends and from people we’d never met. The messages of love, the prayers of hope, and the wishes that we would trust in the Lord were often expressed in the same kinds of words. I could read them like chanting in a church: May the Lord be with you.… May the Lord watch over Emily.… May she feel the healing touch of the Lord. I could read these again and again, and it always soothed my soul when I did. Kari thanked our followers every day for this, always mentioning how Emily asked us to read them to her when she felt low.
In Philipsburg, Big Jim and Pappy Rob set up a bank account to take in the spontaneous donations from the community. Every teller station in every bank branch in Philipsburg, and in the other towns nearby, had that account number taped up on the partition. Churches and community groups, fire stations and schools had started to hold fund-raisers for Emily, and word got out that her favorite color was purple, so people started to wear purple to show their support. Some people dyed their hair purple, and a few guys even dyed their beards purple. That sweet and supportive sentiment started to spread to the schools and church youth groups outside of Philipsburg, and throughout Pennsylvania. Robin would tell story after story of carloads of Girl Scouts who had held a bake sale for Emily bringing their envelope of cash to the bank to deposit, all of them so proud of what they had done, or little boys bringing in all of their birthday money. Stories like these swelled our hearts as we sat in Emily’s room, desperate for hope. All we had to do was read comments on Kari’s posts and there we would find an outpouring of love and support waiting for us, stronger every day.
We had to take it day by day. We kept asking ourselves if we had made the right decisions. As Kari wrote: “How are we supposed to know what is right when the doctors don’t even have all the answers?”
So far, it looks like the chemo is working. Here is her bloodwork over the past week:
Tuesday: White count 115,220; blasts 81%
Wednesday: White count 68,640; blasts 69%
Thursday: White count 16,440; blasts 30%
Friday: White count 6,070; blasts 0%
Saturday: White count 2,150; blasts 0%
Sunday: White count 1,510; blasts 1.9% (although it looks like it went up it probably didn’t—the last two counts of 0 blasts were done with a machine which doesn’t catch all the blasts and today they looked at it manually and were able to see them)
—Kari’s journal
February 12, 2012
They took Emily off steroids on Valentine’s Day and she seemed more herself. She was craving cheese balls, and I thought, Why not? Let’s give her whatever she wants because we don’t know how long we have. I went to WalMart and bought a huge tub of those scary neon orange balls, and she wanted to eat them for breakfast. Kari was horrified by this. Her training as a dietitian had caused her a lot of angst since Emily got sick because she knew that indulging in all these poor-quality foods was not helping Emily fight her cancer. She ate so many cheese balls she threw up.
“Mommy was right!” Emily said, smiling, as she dove back into the tub of cheese balls.
Kari did not let up on this. Every time a nurse or a doctor came in to check on Emily, she’d tell the story of Emily’s indulgent dad letting her eat whatever she wanted, and how wrong I was. Well, I like to be right, and so does Kari. Now Kari was annoying me, but I wasn’t going to send her out of the room. Aunt Kathy arrived, and while they were chatting I found a tiny flying helicopter someone had given Emily. I sent it up flying over Emily’s bed, right toward Kari. Emily laughed as I sent it circling around Kari’s head, dive-bombing her while she was trying to talk to Aunt Kathy. I missed a turn there and it got tangled up in Kari’s hair. As I tried to get the helicopter blades to turn in reverse, it got so deeply tangled in Kari’s hair that I had to cut it out of her hair. We thought Aunt Kathy was going to pee herself, she was laughing so hard. This ended up being a good day because we were laughing despite the odds against us.
We needed more of this laughter. We decided we needed to find a way to bring Lucy in for a visit.
As we basically lived in the hospital, Lucy had moved in with my folks, who had even installed a doggie door for her. It was so funny to see Big Jim and Lucy together. Whenever Big Jim took a bite of something, he gave a bite to Lucy. And when he slept in his recliner, he often had Lucy right there on his chest, moving up and down as he breathed, soothed by his snoring. But my dad was not much for visiting the hospital. His back caused him a lot of pain, and long car rides made it worse. Although we couldn’t
