Kinsey T. Morrison Defeats Aplastic Anemia Dragon

Now that I think of it, she only threw up once Monday night (twice Sunday night). And we started giving one dose of Motrin right at bedtime on Monday (technically she can't have it as it "messes with platelets" but the doc said once a day—Okay), and it lasts a bit longer. So consider this a slight exaggeration. We consider it a picnic compared to a hospital stay. Her doc argued with us Monday that he needed to admit her for all these meds. We argued we could do it and he said, "This is extraordinary. I've never let a patient go home on so many IV drugs. If you find it overwhelming, call and we'll admit her." We told him the admit would be overwhelming.

Let me back up a moment to explain what precipitated this new regimen. Kinsey's "numbers" were pretty bad. Her white cells were .6, an all-time low with a neutrophil count again of ZERO. Dr. McKinnell said, "Her white cells are in the toilet." Obviously nothing we'd done to date had worked and the infection was getting worse.

Yesterday, Kinsey seemed to feel awful and didn't even want to get out of bed for hours. Didn't eat to speak of and her temp kept rising. She screamed about her Cyclosporine so much yesterday that Jillian ran away and then returned to pee in the middle of the living room floor in front of all of us. I spent hours on the phone with the insurance company, sorting out bills. Audrey and I talked on the phone with an Aplastic Anemia specialist in Milwaukee. He was saying, "The first few months are critical. Most children who die of this, die in the first 4 months, many of them due to a fungal infection which I would suspect at this stage. What you are telling me makes me nervous. A decline can happen very suddenly. She can't fight an infection without neutrophils, and she can't produce neutrophils with an infection. The most antibiotics can do is help a little." Audrey and I talked to him for about 45 minutes, sometimes looking at each other from across the room, sometimes afraid to look at each other. And toward the end of the conversation, we heard the greatest sound from upstairs: Kinsey's laughter. She was playing a video game, having a great time, and laughing at an email Aunt Ann had gotten. For a few hours, we had hope that this cycle was finally breaking. Her fever was down. She wanted to eat something. But it didn't last long. She got tired in a few hours and went back to her spot on the couch to lie down. She has taken to even wanting to eat there (never allowed before). We debated the merits of taking her to Milwaukee, a place neither of us has ever been, a place where we know no one, a place 1300 miles from home and my job, a place with a person who might save our daughter's life. We watched her and waited thinking, maybe it would begin to get better and this steady decline would reverse.

Last night was a bit better and the Motrin brought the fever down for about 8 hours. She slept pretty well and didn't throw up once. Audrey and I divided the IV duties so it was a little less stressful even though we were both awake for each one. This morning she seemed the worst she's been. Wouldn't even sit up, wanted no food, hardly even felt like saying goodbye to Aunt Ann, who left today. I took a shower and kept hearing those words, "Most children who die of this, die in the first 4 months," and I started crying and couldn't stop. I got out and tried to lift Kinsey's spirit, teasing her as I sometimes do. It didn't work. She wouldn't sit up. Audrey had to take Ann to the airport. Jillian started crying for Ann and didn't want her to go. I was crying again. I'm sure Ann was torn between not wanting to go and wanting to get as far away as possible. I told Kinsey that I needed to call the doctor, that I thought she might need to go in today, maybe even be admitted today. She was saying she didn't feel like taking medicine or doing anything. She started crying, "Please don't call Mommy. I don't want to go to the hospital. I shouldn't have to go to the clinic until tomorrow!" I was crying, too. I said, "Kinsey, I know this is hard on you, harder than anything should be on a five-year-old little girl, but it's hard on all of us too. Don't make it harder by fighting us on everything" (medicines, bath, mouth rinse, etc.). She said, "But Mommy it really is harder on me, and I'm just a little kid." Her bottom lip was quivering. I really started crying then.

I called the doctor's office and asked to speak to the Hematology nurse; they said they thought she'd gone home sick but I could have her voice mail. I said I didn't want her voice mail if she wasn't there and the woman said, "Well I didn't say she wasn't here. I said I thought she went home sick. I asked her to check and she came back on a moment later and said, "Well I got her voice mail so I'm not sure." I asked if Kinsey's doctor could please call me. It took the woman 20 minutes to take a message, primarily because I kept having to spell "Cyclosporine" as in "Cyclosporine levels?" She called me back in 1 minute and said she could have the doctor on call me if it didn't make a difference. I said it did make a difference and to please ask Dr. McKinnell to call me at his convenience today.

Jillian came in and started wiping my tears. Kinsey began screaming at Jillian not to do that. I fussed at Kinsey for fussing at Jillian. Jillian asked if I would read to her. I couldn't. She asked if we could play Hungry Hippos (her favorite game which Kinsey is somewhat disdainful about). I suggested we all three play Crazy 8's. Kinsey liked the idea and Jillian reluctantly agreed. We played. Jillian got bored and Kinsey won. She asked to get dressed.

By now it was after noon and almost time for more meds. She came into the living room and seemed to feel a little better. We both thought her swollen jaw looked a little better...perhaps. Dr. Jeff (the "Fellow") called to say her Cyclosporine levels (the ones they lost last week, remember?) were too high and we needed to cut her dose 25%. I told him about her decline, pointing out the few positives. He said, "Okay, we'll see you tomorrow. We'll check numbers and go from there."

Audrey and I called Milwaukee again and I talked with a patient coordinator there. She was extremely helpful but seemed confused about exactly what I wanted. Did I want to bring Kinsey for a consult? Did I want to bring Kinsey for treatment? Did I simply want to consult with the doctor via email and/or phone. "I don't know," I told her. "We don't know what to do at this point given her current condition." She asked a lot of questions and agreed that Kinsey probably needed to be admitted and probably shouldn't be moved until after a course of the anti-fungal IV stuff they nicknamed "Shake and Bake" for the fever and chills it causes kids. That's probably what's coming. At about 5 today, Audrey and I looked over and Kinsey was up dancing! She hadn't had a high fever for hours and she was past possible Tylenol dose. We began, again, to hope against hope, that this was the turning point. We were being tossed a bone. She came upstairs and played with Jillian. They worked puzzles and "cooked" fish. She laughed that wonderful laugh. Then slowly since I've been on the computer—checking emails, reading her guest book entries to her from the website, and writing this —she has moved to the futon and her fever is now 102.2.

I asked her earlier if she wanted to go rollerblading and she laughed and laughed and said, "Mommy, like I don't have Aplastic Anemia!!!" I said, "Oh yeah, I forgot!" and she laughed some more. I just asked her a minute ago to come jogging around the block and she screeched at me, "No, I'm too tired!!!" She is, as I write, shaking all over with chills. She has a blanket pulled tight around her and I have the fan going to compensate for that in an attempt to delay the Tylenol and hope it will go back down on its own. But soon she knows and I know, she will be uncomfortable enough that Tylenol will be necessary. At the suggestion of a good friend we are backing off on pushing the medicines, hovering, pleading, watching the clock and numbers so much, etc. When we can, we allow her to make the choice and take them without drama.

Throughout all this, the kindness of strangers, new friends, old friends, and family continues to fuel and amaze us. Peggy Reed, from NM Bank and Trust came by last night to pick up all the items we'd set aside to sell or give away. She will put them in the rummage sale on June 8 that will benefit the Kinsey T. Morrison fund. Steve Fox continues to work on Kinsey's website despite his own health problems. Richard Nadolny of Richard's Printing is helping with the printing of letterhead and a mailing we intend to do to raise funds in the neighborhood. Jill and Jim Rich have provided not only funds but a willingness to fund raise through groups of old friends and acquaintances from Tucson. Audrey's niece Heather just emailed that she is doing a fund raiser at work. Audrey's sister, Janet, too is doing a work fund raiser. My Dad is secretly working on a few fund raising ideas, and my sister, Diane and niece and nephew Sean and Jacki, have already raised much and are working on more. Dear friends, Barb and Lyle from Tucson, Hilary Elliot from Santa Fe, Carolyn Waller, a Red Cross volunteer have helped tremendously, and my old friend Ami who now lives in Michigan emailed to say a check is on its way. The fund raising which started with a gift from Kinsey's godparents and an anonymous $300 left on our front door has now exceeded $5000. We need only raise another $45,000 - $195,000 more depending on how things go. The help from our media friends, too, has been invaluable and I know will make a real difference for Kinsey and lots of others! And of course Ann, who has been here with us through so much of this and is coming back in a couple of weeks, I'm not sure how we could have made it without her. There are so many of you who have helped and continue to help, although both Audrey and I worry about people burning out, getting disinterested, or just weary of it all. We could certainly understand that.

The emails, calls, cards, and packages, too, have been wonderful! And Kinsey (most days) loves getting all of them. My boss sent a nice gift to the girls, delivered by more good friends, Helen and Norm Grandjean, who have offered many times to help in many ways. Our neighbors, Tim and Janet, have offered to take Jillian in the middle of the night should we need to go to the ER or to do anything else they can to help. We got a call from my boss and friend, Bettye Pressley, yesterday letting us know that her mother had died and that she was thinking of us. Her mother died, and she was thinking of us. We are thinking of her, too. Thinking of all the people who suffer loss and endure pain and fear. We are living in the most painful, fearful period of our lives and yet we know even in that we are not alone.

Kinsey asked out of the blue today, "Do you think I got this at Linsay's birthday party at Chuck E. Cheese?" "Probably not," Audrey told her. But she can't stop wondering When? Where? Why? As we do. Kinsey continues to rage at least once a day—sometimes very articulately and profoundly, sometimes in a very typical five-year-old style—about the unfairness of this and how she just wants things to be "regular" again. We want out of this horrible place and there is no escaping it. I told Audrey earlier, "God, I wish I had a crystal ball, I think." For the first time in my life I am afraid to know what is out there because I know as horrible as this is, it could and very well might get a whole lot worse. And sometimes late into the night or very early in the morning when the house is quiet, I imagine some of those horrors, while pushing them away at the same time. Willing them to become nothing more than horrible thoughts I am ashamed to think. I have always been strong, determined, a great planner with unmatched tenacity, and yet I find myself paralyzed by fear these days. The place I reach down to for strength, that reserve I have talked about that has kept me from "losing it" so many times in front of Kinsey seems drained today. I pray it will be back tomorrow.

She asked just a bit ago for Tylenol. Her fever, now at 103, was making her shake so hard she wanted it. We gave it to her with apple juice and a new straw. She is sleeping peacefully now, so I guess as long as I can do something to bring comfort, make a difference, and continue to hope, life is much better than it could be. My friend Julie always says I have "Jesus Christ on the cross" luck which kicks in at the very last moment sometimes, but kicks in strong. It's time.