The fever got higher last night, up to 101.9, but it did come back down on its own. Kinsey had a terrible night thrashing, crying out, screaming bits and pieces of sentences that made no sense to us. I sat beside her after finishing all her meds with my knees drawn to my chest and just watched her, felt her head, and tried to comfort her when she woke. Finally sometime after 5, she slept peacefully and her fever was only about 99. She went to clinic today and got the BEST neutrophil report yet: 180!!!! So close to that 200 mark the doctor is watching and waiting for. She seemed to feel great and was laughing and giggling with her Aunt Ann at the clinic today. I could hear her in the background when Audrey called and I asked, "Is that Kinsey laughing so hard?" She "played" with the psychologist and they did art projects. She encouraged Audrey to leave the room for some time, a definite indication that she felt safe and stronger. The doctors did not seem concerned at all, Audrey reported, about the fever. The nurse did say they'd watch it. She didn't have one at the clinic all day after arriving with a low-grade one. Great phone call!
And then I got a call from my dear friend Richard. He could hardly speak and my mind raced as I told him to take his time. "Is is Steve?" I asked. It was. His good friend and the wonderfully generous man who created CaringForKinsey.com had died of a stroke. He was only 55. My first thought and words were, "We never even got to meet him!" I didn't ever actually even talk to him. We exchanged emails. I thanked him and told him things like, "Kinsey doesn't really like teddy bears, but she does love Harry Potter and unicorns." and "That one picture that doesn't really look like anything is a butterfly." I thanked him several times, as I was so thankful for the beautiful job he did and the work and time he put into keeping it current, adding photos, whatever we asked.
Richard
had told me that he had recently thanked Steve for several things himself,
one of them being Kinsey's website, and Steve had told him that he didn't
do it for Richard. He did it, he said, for Kinsey. "But you don't
even know her," Richard pointed out. But Steve told him that he felt
he and Kinsey had a special bond, that she had given him a reason to live,
to get out of bed and put her website together when, after a few small
strokes, he would have preferred to do nothing. He said he had asked God
to let him live to get that website put together and he even told Richard
that he wanted this little girl to live so much he told God he would give
his life to spare hers. Her neutrophils nearly doubled, and the number
that indicates she's producing baby red cells doubled today, the first
time that number has moved at all and a very good sign. And despite a
continuing low-grade fever on and off tonight, she is better.
Perhaps he did.
I know that what he did with that website alone has helped save her, the prayers, the messages of hope and encouragement, the funds, the laughter it has created have all made such a difference to her and to all of us. I truly regret that I never met this man and I cannot express how grateful I am that he made such a difference in my family's life. I know he will live on through the memories of his wife, children, friends, and other family. And I know, too, through his connection to one little girl he never met he will live on as well. Steve, you were here too short a time, but may you find peace and may your family find peace in the knowledge of the impact you had on so many lives, and especially for one very sick little girl. You are a hero to her. You are a hero to all of us who love her.
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