We are 1 1/2 hours away from 2 weeks without a fever, and I just took Kins to the bathroom and she felt a little warm. I didn't totally panic because she felt a little warm last night and was only 99.5 and dropped right back to normal after I uncovered her. I didn't want the drama of the oral temp (which has to be held under her tongue for about 3 minutes, not fun when she's sleepy) so I just checked it with the ear thermometer and it was 100.2. My heart started pounding and I broke out in such a sweat (literally) that when I took my own temperature (to make sure the thing was working) mine was 99.8. I took Kinsey's again: the same. I took Audrey's who had been asleep. It was sub. I sat down, took a few deep breaths and logged on to check emails, watching the clock. Fifteen minutes later, I took it again and it was down to 99.5 with no covers on her.
These are not temperatures that would excite any doctor but the fear is so real that this could be the beginning again of yet another cycle. I just wanted to scream "Let us OFF this _ _ _ _ _ _ _ roller coaster! Let us OUT of this nightmare! I can't take it anymore!" I can stay up all night, every night administering meds every hour. I can live in a small room with two beds and three chairs for months. I can watch my little girl heave over a small garbage can every night and know the drugs I've just given her caused it, and the other drugs I gave her to prevent it were just not as powerful. I can fold other people's laundry for hours and move clothes mindlessly from a washer to a dryer, waiting my turn to get the sheets and towels I wash every day clean. I can carry a heavy backpack everywhere we go and hold my daughter's hand to make sure the tubes that connect her to it do not get pulled right out of her chest. I can sit through a huge meltdown during which my once mild-mannered child throws a vomit basin across a room and demands that I KILL a nurse. I can watch her thrash around the bed and jump out of it—first on one side then the other, KNOWING she can't go ANY further than that no matter how far she might want to run away and KNOWING how helpless and out of control she is no matter how much she might want to pretend that she has some control over her world. I can do all this and much more, much worse, much, much worse. I just want to know there's an end, and that at the end there's some peace, some stability, some health and happiness and joy and some real childhood for my little girl. That's all. But, it doesn't matter what I want. I HAVE to go through it ALL, not knowing what it will produce.
My sister told me recently that she thought the worse thing that could happen to a parent is for their child to be abducted and murdered. Sick as it is, I'd thought of this before in the context of searching for things that were WORSE than I was going through. But I said to her, always one to play devil's advocate, maybe not. If a child is murdered and dies quickly that COULD be better than suffering a long, painful illness only to die at the end. But I realize the futility of such horrible meandering thoughts. As I've said before, I do not believe in comparative pain. A young father and I see each other in the hallways of the hospital or the kitchen of Ronald McDonald House and always ask how each other's daughter is doing. His just had a transplant for a very rare form of leukemia. He is the one who told me about the parents of the little girl who has a brain tumor. She is 3 or 5. I can't remember. I just know she's the same age as one of my girls. The tumor is inoperable. IF radiation works, she might have a year to live. She was perfectly healthy until a few weeks ago. A few headaches and fatigue sent these devoted, loving parents to the doctor right away. I think about them every day. I pray for them every day. Watching my daughter improve the last two weeks has been such a gift and I try hard NOT to feel smug. I never feel safe in any secure feeling. Audrey and I talk about that a lot, the fact that we will NEVER feel safe again. It's like losing trust big time. You can love someone again whose broken your trust, but you can never truly, totally trust him or her again. That which could not happen to us has happened. TWO in a MILLION chance. Never again.
Yesterday, Jillian and I were sitting in the dining area of Kathy's House, the place where we are staying. We were alone in the room which is unusual, eating dinner. Jillian said, "How's your daughter doing?" I said, "What?" and she repeated it. I said, "She's doing better." Three-year-old Jillian said, "Is she all better or just a little better?" I said, "Just a little better. How's your sister doing?" She said, "Oh I don't have a sister, but I have a Po Po, and he's better." I asked, "All better or just a little better?" She answered, "Oh, just a little better today." A few minutes later this all started again: "How's your daughter doing?" That was the scene she's witnessed several times in that room, the only conversation she'd heard in that room really. She cries sometimes and says she wants Kinsey to be all better NOW." She fights with her other times and even forgets enough to try to jump on her back or throw a ball at her too hard.
Kinsey cried last night saying, "I want to go home. I just want to go home Mama." Audrey told her, "We will baby. We'll go home one day soon and we'll play at the park; we'll be in our house again; we'll visit Mommy at the Red Cross and have lunch with her; we'll see Ms. Pressley and Ms. Grandjean and all our friends there." Kinsey stopped her list, saying, "But I'll have to wear a mask Mama." I stepped out of the bathroom (where I was no doubt scrubbing something with Clorox) and said, "No, no baby, you wont' always have to wear a mask! You're going to get well and be healthy again and have as many neutrophils as other kids. Really."
Speaking of neutrophils, the number today was 96. So for the last four days that's 130, 99, 130, 96. That beats 26, 48, 78, 0, 36, 0.
Since I've been typing I've taken her temperature again and it was 97.4. Perhaps turning the AC up and taking the covers off her was a bit much. I covered her up. She's awakened a few times crying out words that make no sense: "No, no that's too much. That's not going to work. Stop, stop." I pause to pat her, reassure her, and ask, "Can I take your temperature with the real thermometer?" "NO," she screams. "Okay," I say quickly and touch her forehead lightly, sweeping her hair back casually and trying to determine how warm she is. I can't help it. I know I will touch her 100 times tonight once I go to bed. Okay maybe only 50.
Doctor Margolis told Audrey a couple of days ago, "We don't have to look at these numbers everyday. We don't have to do labs everyday. But to be honest with you I'm sort of addicted to it." Audrey said, "So are we."
She still calls me as soon as the numbers come back. We've gotten into a sort of routine. She, Jillian, and Kinsey go to sleep after 10 when I hook Kinsey back up to everything. I stay up until 3 or so giving meds and then get back up at 6 to get out more and then again at 8 to give another one. Audrey, too, gets up at 8 and gets ready to take Kinsey to the clinic. I get her pills ready (liquid injected into gel caps) and then go back to bed when they leave. Jillian and I sleep in this dark, cool room until between 11 and noon or until Audrey calls with numbers.
We have a fridge just for meds and it's about 3 feet tall and FULL. We also have four drawers beside it full of needles, syringes, tubing, tape, claves, bandage packs, alcohol swabs, saline, vials of room temperature drugs, batteries, and much more. I generate a garbage can full of waste each night, excluding the needles which go into the sharpie container. Audrey is still too intimidated by all of it for us to alternate roles. It's because I took the full 7 hours of training and she skipped out on the last few in order to feed the children and prepare them for bed. I have made a few brain-lapse mistakes but not serious ones I am told, not as bad as some of the others I've witnessed professionals make. But I take it VERY seriously, probably too much so but then the stakes are high. And it's hard to get over the fact that I am injecting powerful drugs into my child through a double main line going directly to an area just outside her heart. One line has a Y to accommodate three hook-ups at once even though only two drugs can go in at a time and they must be compatible.
Kinsey had to spend more than 9 hours at the clinic and so lost her window of free time. This was probably the cause of the major meltdown I referenced earlier (the one that involved projectile barf bucket). I made a deal with her tonight that I'd unhook her for one hour (even though I couldn't make up the lost time) if she ate most of a banana. She did. I did.
My dad and stepmother visited this weekend and brought my 14 year old niece Brittany. We enjoyed their visit, especially Jillian. They leave tomorrow but Aunt Ann is back! Friends and family continue to provide incredible support, without which I have no idea what we would do.
I just checked Kinsey's temp again and it's 99.9. I feel sick. Time to start the first of two growth stimulating factor drugs of the day. They help white cells mature quickly.
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