At 6 a.m. I asked the nurse if Kinsey's numbers were back. She said they were, would I like to see them. "Yes, I would." As she handed them to me a few minutes later, she said, "She has a few more neutrophils." She does!!! This morning, we hit an all-time high of 5%!!! Based on her total white count number that would be 60 neutrophils. However, based on their formula for calculating the ANC (absolute neutrophil count), it is 48. Yesterday it was 26. She also has more monocytes which is a good sign. Bands and Segs are necessary for neutrophils and are part of the formula and she has an all-time high of 4 of those (only 2 yesterday). Overall, very encouraging and it's hard not to dance in the streets, but the doctor said this morning, "With your permission, I am canceling her radiation tomorrow and I want you to understand there are risks with doing so." I'm looking at him like, "Hey, didn't you see the numbers!" I said, "Aren't you much more optimistic than you were a week ago?" He said, "More optimistic, yes. Much, no. We are not out of the woods yet. These numbers are still really small and they are still going up and down (he drew a little roller coaster on the bottom of the report). When they are like this (he drew a little straight line going upward) I'll be happy." I asked, "What number does she need to be at for you to feel much more optimistic, 500?" He said, "No, given her condition, if she can get to 200 and be steadily going up, I'll know she will keep going up and then I will be relieved."
I asked him about the cause of this sudden change, the new drug he just added last week, the cousin to a growth factor drug she was already on or was the actual treatment for Aplastic Anemia (the ATG and cyclosporine) having an impact. He said he felt the ATG/Cyclosporine was beginning to work, but we couldn't be sure it would work well enough or continue to work until things were more solid. This was great news to me because I had understood that getting a few neutrophils did not necessarily mean the treatment was working on the overall disease. He cautioned me again to be "cautiously optimistic" saying she could be "sicker than a dog in two days." I asked what we would do if she did become sicker than a dog in two days, and he said, "Manage her until we could get her to transplant," which now would be 2 weeks from tomorrow. He is going ahead and scheduling her for that on the basis that it's too early to burn any bridges. He wants me to continue seeing the doctor and being worked up as a donor. He wants to continue looking for a better donor. And for now, he wants to continue watching and waiting while she takes the 10+ powerful drugs she is on.
Her fever curve continues to be better and she continues to look better. Yesterday, we went on pass to see the movie Spirit and then over to Ronald McDonald House to let her and her cousins Kayla and Miranda play. Jillian was kept at a distance as she still has a fever. Audrey, who was "sicker than a dog" yesterday also stayed away, near a bathroom all day. (We are hoping her ailment is related to bad food).
Kinsey told me earlier yesterday, "Wouldn't it be great Mommy if people only got sick when they acted sick and if they could be well when they acted well?" And then when we got to Ronald McDonald House, she started crying. I thought it was because Jillian couldn't get near her. She told me it wasn't about Jillian. I said, "Tell me why you were crying." She said she didn't want to but that it had nothing to do with Jillian. I reminded her that little girls could tell their mommies anything. And she said, "Well, I was just crying because even if you act well, it doesn't mean you are well." Then she ran off to play and I started crying. My sweet little girl felt normal for an instant and she just wanted to be normal, but she knew no amount of pretending she was well could make her so. And yet, pretend away she did yesterday. She refused to use the wheelchair, which meant her cousin Sean or I carried her on our shoulders some, but she mostly walked, crawled, climbed, and even ran a little. She told me, "Mommy, quit asking if I'm okay. I don't even feel sick. I don't feel like I should even be in the hospital. Actually, I only am because you say I have to be." I reminded her that she was in the hospital because the doctor thought she needed to be. She said, like a 13 year old, "Whatever," and proceeded to play some more.
We all ordered pizza and she shocked everyone by eating nearly 2 pieces. But much too soon for her, the time came to get back to the hospital. I told her if she would take her medicines (one nightly pill and a mouth swab) her cousins could stay at the hospital awhile and play with her or watch a movie. She did and they did. A new nurse (Kinsey still hates all new medical staff, believing that they are bad until they prove otherwise) gave her a med too quickly and she choked (that happens sometimes with broviacs). A second time she pushed a med too quickly, Kinsey began to cough and lost all her pizza. The nurse said, "You know cheese is hard to digest. Any dairy product is." About 11 she was tired enough they left and she took a 30 minute nap. Then she wanted me to read to her. By 1:30 a.m., my eyes were crossing and I had to insist we turn out the light and go to sleep. We did and she slept better than she has in a long time (partly because the nurse gave her the huge dose of IV fluids earlier than she meant to and Kinsey had already had 4 potty visits prior to 1:30.)
Right now, at 9:55 a.m. she is still sleeping (although I have already gotten her morning oral meds over with). Right now, she looks peaceful and beautiful. Her color looks better and with her eyes closed the "bloody" eye is not visible, let alone startling. Her long, long dark eyelashes are resting against her pink cheeks and she looks great. "How is she?" the doctor asked me this morning. "Great." I told him. She's great. For today, she's great. I am great. Audrey feels a little better and I think Jillian is a little better. We will take another pass today and Kinsey will spend a little more time with her Kentucky cousins before they have to leave. Tomorrow...
I choose to believe we'll go over 50 neutrophils! I actually lay in bed this morning thinking if we could have 4 bands or segs and a white count of at least 1.3, that would put us over 50! We had 4 with a white count of 1.2, close enough for today. (You multiply the total bands and segs with the white count [4 x 12] to get the ANC). We will wait for tomorrow. And live as fully as we can today.
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