A friend told us in Albuquerque, "Don't obsess about the numbers." I think it was a night when we were taking Kinsey's temperature every 15 minutes and putting cold rags on her head while she lay shivering under a fan, in an effort to avoid the ER. We later learned, if she has a fever, the worst thing about it (other than the obvious indication of infection) is that it makes her uncomfortable. So making her even more uncomfortable with cold, wet rags and fans was not the best move. Anyway, I think about that advice as I obsess about new numbers, those slowly rising neutrophils. They were at 20, then 26, then 48, then yesterday an all-time high of 78 with other numbers looking pretty good as well. The nurse handed me the report at 5:30 a.m. At the bottom she had written: "ANC = 78!" She was smiling. I poured over them reading and re-reading. (ANC is Absolute Neutrophil Count)
This morning at 7, Audrey hadn't called, and so I called her. She said, "I thought I was just supposed to call if the news was good." "No," I told her, "I revised that to say 'Call whatever the news because I will just watch the clock and wonder either way if...' until I've heard from you.'"
"So the news is bad?"
"Well, her white cell count is up; it's 1.5. Her red cell count is...."
"What are the neutrophils???"
"Zero."
"Zero?"
I started to cry. Ann was ready to walk out the door headed toward the airport and the timing couldn't have been worse for her to get such awful news. I hung up, pulled myself together long enough to tell her good-bye and attempt to show how truly grateful I was for all that she's done, for all that she continues to do for Kinsey, for Jillian, for us. It seems I am crying every time she leaves, and not at her leaving for she certainly needs and deserves a brief break. After she left, I called Audrey back to get more details. It seems the automated counts were not quite so dismal, showing neutrophils at 4% and overall lymphocytes at only 90%. But the manual count of 100 of the cells is what they trust and use for more accurate and reliable results. It showed 99% lymphocytes and zero neutrophils. No bands, no segs, only 1% monocytes. Pretty dismal. Audrey has tried to convince herself that the neutrophils have dropped temporarily because they were fighting the infection(s) which is evidenced by Kinsey's three-day lack of fever. I have convinced myself (almost) that despite what they say about the manual count being more accurate, they only look at 100 cells and there are 1500 white cells today alone and more than 3000 red cells, and with fewer than 100 neutrophils, they could have missed them all in that small segment. The doctors seem amused by my logic, but hey... What the doctors did say today is that the numbers are so small, a drop to zero is still slight, and could easily return. They will be more concerned tomorrow if the numbers look as bad. They are still very encouraged by the lack of fever and the fact that she continues to look and feel better. I can't help but hear the clock ticking, though, knowing that even if she looks and feels well without at least 200 neutrophils or more, she will be as they say around here "going to transplant" in less than a month.
I was given a test years ago that determined if one were an optimist or a pessimist. I couldn't wait for Audrey to take it. I wanted subjective proof to show her just how pessimistic she was. If you scored something like -3 to +5, you were a true pessimist and then there were various levels above that. Optimists were something like 20+. Audrey scored a -2. I laughed and laughed saying, "See, I told you," until I scored a 1. Then I explained, "I am an optimistic pessimist." "What?" she asked. Clearly she thought I was making something up. But I had read the description of my score. I had read the literature, and this is what fit me. I explained, "I think I'll probably get cancer, but I'll beat it." My life's experiences have taught me that bad things can and do happen, and I somewhat expect them, but my tenacity and stubborn nature has shown me that I can overcome them. I wanted children, very, very much. I had no husband or other man to assist with that effort and I had serious infertility problems. Yet, I had two children. I was diagnosed with a rare cancer gene two years ago which meant my risk of getting cancer was nearly 100%, 87% for breast and 44% for the more often deadly ovarian. After quickly and fully researching it and talking with many doctors, genetics counselors, and health education specialists, I had two major prophylactic surgeries within 6 weeks of each other, leaving only enough time between to donate my own blood, three pints, all of which I needed. All pathology was negative, but now my odds are just slightly above normal and I felt the decision was a simple one as it helped ensure I would be able to see my children grow up. And now I am fighting a different battle to help ensure that same thing, and I keep one eye turned toward the other foot I fear will drop (and yet I wonder how many feet can one monster have?).
Yesterday, I told my sister Diane that we were so resigned to the fact that Kinsey was going to have a transplant, that I had to be the donor, that it was statistically very unlikely to save her. We weren't resigned to the fact that she would die, just petrified of the possibility and braced for such a tough battle. (I was more resigned than Audrey who felt confident the neutrophils or something would save us that fate in the 11th hour. And I clung to her faith, thinking, "She knew Kinsey was a girl when I was sure she was a boy and the doctors had no clue. She was certain. And she was right about...." )
But to some degree, we were both resigned and it was so hard, and then to have this hope offered to us on such a precious 11th hour platter... If it is taken away again and we are back to that same scary scenario it will be 1000 times more cruel! For us and for her. She, too, was preparing for transplant. She, too, was afraid of all the side effects and of death (though we never talk about that). Not that 26 or 48 or 78 neutrophils ever offered us any certainty of saving her, and certainty of anything. But they did offer hope, another way out, a light shining through that cave wall that seemed to have us trapped. And it feels today like we've all started walking down the path toward that light, holding hands, happy that we can almost feel the sunshine on our faces, remember what it felt like to be free and dream of what freedom post-Aplastic Anemia will be like (sweeter for sure) and then the passageway narrows and some water starts to rush in and it appears we may not be able to squeeze through in time. Do we turn back? Look for another way out? Keep going, cautiously hoping it will widen again before it forces us back?
The doctor said yesterday (when we had 78 neutrophils) that he felt (long pause) I offered "cautiously optimistic?" "No" he said, "Not that hopeful." But he later told the group during rounds that he hoped we could "Seek out an ATG/Cyclosporine response and avoid going to transplant." They have raised her dose slightly only to drop it again and raise it again because of her kidney function. Today her levels were high again and if that's true again tomorrow they will likely drop it again. We need her to have all she can tolerate to maximize the chance of it working. As the parent who doesn't understand all the medical nuances, I find myself wondering today what we missed that he must know to make him go from stomping his foot and bringing his fist down in triumph with a "Yes!" on the first day of good numbers to saying he is less hopeful on the fourth day of good numbers. And then today, the doctor who insisted we should have gone to transplant last week seemed more hopeful and encouraged, primarily by the lack of fever. ???????
An interesting thing happened to me during these last four days (prior to today) of "good numbers." I bought a book to read for pleasure. I started reading it. It is not about bone marrow transplants or how to cope with sick children. I had a good dream, at least it was almost a good dream, on the verge of being a very good dream until I heard, "Mommy, I've got to go to the potty." I laughed hard with my sister about something so silly I can't remember it. I thought about work yesterday morning and missed it a little. I dared to look forward to a couple of possibilities, things I would personally enjoy, that have nothing to do with Kinsey. And I felt a little guilty for each act, dream, thought. I questioned myself: "What kind of mother can I be to lie here beside my child sick in the hospital and have a good dream. How can I read about something that doesn't increase my knowledge of this disease and its treatments? How could I think about having dinner at a nice restaurant with my partner? How could I miss the enjoyment of a long, intense conversation with my boss and friend Bettye about civil rights, southern traditions, real conversations, or the definition of "poor white trash?" While each of these happy selfish moments were small (I'm only on page 42 of my book), I still felt undeserving of them. As we were driving back from our PASS outing yesterday and I was feeling pretty happy, the thought hit me: Our child could still die! Doctor Margolis's words came back to me, "We're not out of the woods yet." What was I thinking? A few neutrophils, a few flashes of Kinsey's dimples, and I'm ready to be relieved and think we've made it! I even had the nerve to say to Audrey yesterday, "Do you realize it's possible that we're past the worst of this? I know we still have a hard, long road ahead of us even in the best case scenario, but it's possible." And she agreed, though we were both too afraid to say it very loudly, both afraid to jinx this roll of good luck, good numbers.
When Kinsey feels good and is happy, it is so much easier to feel good and be happy. It is so much easier to believe that we could have a whole life again one day. And it is her feeling better and her laughter, her excitement about the adventure each day's pass will bring that have made our spirits soar. And yet we live each day, watching the numbers, watching the clock and calendar, and watching for any sign that she is taking a downward turn. Kinsey wanted to go to the lakefront yesterday and rent bikes with side cars to ride around. I wanted to wait until Jillian could go too (we were still keeping them apart) but I wouldn't put it off for fear there wouldn't be a tomorrow when she felt up to it. She did, though, today want to go again and we did with Jillian.
We live with the knowledge that this bit of "euphoria" could be yanked away at any moment. We have been to the edge and know how sharp and quick the drop off is. We know the bottom of whatever lies below that cliff is deep and we have not yet seen it. It is too hard to make it out in the brief peeks we've been unfortunately afforded. It's like the trying to discern where the water stops and the sky begins at Lake Michigan on a cloudy day. Impossible, so far. Today, we felt the yank, but it's slight enough to pretend to ignore, like a noise in the night when you are in a deep sleep. You wake and wonder, "Did I hear something? Or did I dream it?" We're not sure how frightened to feel and so we wait for tomorrow's numbers. In another 1-2 hours, Kinsey's favorite nurse Carolyn will draw the blood for the labs. Two hours later, she'll bring me the report. I hope she will be smiling.
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