Audrey wanted 1000 neutrophils for her birthday, and unlike me—she got her wish early: 1408 last Wednesday. Friday's were about the same with 1410. However, the hospital staff are focused on other numbers now. Now that a white cell response (even with serious support) is obvious, we need to see a red cell response. Something called reticulocytes (baby red cells we think) indicate some activity there. That number was at 0 then .1 forever and finally moved to .2 a couple of weeks ago. This excited the doctor but then they stayed there and her red cells are dropping more rapidly than they were (she used to need a transfusion about once a month; the last three have been about 10 days apart). The reticulocytes (which they check weekly) moved up to .3 last week. Today, they were .5 (which is the bottom of "normal"). Her red cells (hematocrit and hemaglobin) are still dropping but we keep hoping that will turn around and we will see a sign that her body is actually producing its own. This needs to happen fairly soon to hold out much hope for a drug protocol response.
Finally, the platelets usually come last. And they are NOT doing well at all. She needed three platelet transfusions in four days recently. At best, she is getting them twice a week. They like to wait as long as they can, but she is feeling well enough to be really active and so it is dangerous to let them get too low. She's pretty bruised up just from regular five-year-old activity (and our still having to hold her arms for the nightly mouth swab). If we can just see some red cell activity we will have greater faith that the platelets will follow. Until then, the rapid loss of platelets is a little scary.
Kinsey got to be in a 4th of July parade and thought it was "fabulous." This, despite the fact that she and Kailee (the other little girl from Albuquerque with AA) rode in the only vehicle that broke down in the parade- a Model A. What can you expect from a 70 year old car on a hot day?). They were transferred to another Model A and finished the parade out between two adults- Kinsey in the rumble seat, Kailee up front. By the time they got to us at the end of the route, they were eager to get out. Probably had something to do with the serious sweating they were each doing in their pretty dresses. Kinsey had very much wanted to wear a dress and because the few we bought her do not fit anymore, we had to buy a new one, complete with sandals to match. That morning she said, "Mommy, I just can't wear that back pack and have tubbies coming out from under my dress." I looked at those big brown eyes and did what any mother would do: unhooked her. This just meant that she had to be hooked up all evening but she was very pretty in her pink dress. She even felt pretty for a change. She asked me that night, "Mommy, am I still pretty even with all this hair all over me and with all these bruises?" I assured her she was beautiful inside and out and so smart and so special. She said, "Do other people think that or just you?" I assured her that anyone who wasn't blind would agree totally. We decided it was time to get her some more clothes that fit well and looked nice, especially some dresses or skorts (shorts that look like skirts for those of you who, like us, are fashion impaired).
The other day, we were at Target, looking for clothes for Kinsey. She has outgrown all her old ones. Odd that while throwing up daily and not eating, she gained 5 lbs. The good news in that area is that she has stayed off the dreaded TPN (IV nutrition) and has been doing better each day with eating and NOT throwing up. She's still on 18 hours a day of hydration. She will beg for me to unhook her and I do make sure those few hours are awake ones when she can play and be active. But I digress: we were at Target, and Jillian suddenly dropped her pants in the middle of the girls' clothing section. I looked up just as I heard a young girl say, "Mom, what is that smell?" The smell and the sight of Jillian's bare bottom hit me about the same time. I did what any parent who is with her spouse would do. I said, "Audrey!!!!" She was at a nearby rack and came immediately to find Jillian and me playing tug of war with her pants. She wanted them DOWN and I was pulling them up despite the fact that they were full of poop. I said, "Take her to the rest room. I'll buy some clothes and be there in a second." Kinsey said, "Can I go with Mama to help?" I said, "Sure," thinking she wouldn't be a lot of help but I could sure move faster. I raced to buy clothes and panties, stood in line (the "guard" near the restrooms wouldn't let me go in despite the fact that I assured her I would deliver the tags to a cashier and pay), and rushed in the restroom, which was out of paper towels. So I rushed back to buy wipes (a lot of wipes). By the time I returned, Audrey had discovered that the clothes were too big. I carried Jillian out in her panties and shirt while Audrey stood in line to exchange the clothes for the right size. They didn't have the same outfit in the right size, and for time's sake we wanted something the same price. We had to settle for yellow even though Jillian will rarely wear anything that isn't pink. As I was dressing her between racks in the girls' section (Kinsey who had truly been a big help to Audrey by the way, was helping to shield us), Jillian was pulling at my hair. I said, "Jillian, stop it! It's burning up in here and Mommy is sweating. Please don't pull my hair into my face!" She said, "Mommy, it's cool in here." I said, "Be quiet."
Audrey's cell phone rang and it was the hospital saying that Kinsey's platelet count was 5 (she had had a lab draw that morning) and that we needed to bring her in for a transfusion. As we quickly gathered the items we needed to buy, I kept thinking, "Okay, now Kinsey just needs to stay calm. Stay calm. With a platelet count that low, she can't get upset or excited or... She needs to STAY CALM." Then it hit me as I looked at her: SHE is calm. I'm the one who is a nervous wreck here!
One of the Home Health Care pharmacists recently asked me "Wouldn't it be easier to have her in the hospital? In my eight years I've never seen anyone do as many meds at home as you're doing, at least not without having 24-hour nursing care in the home." I said, "She's five, and she feels like playing and doing things a five-year-old likes to do, so I will do anything to keep her out of the hospital." But it is stressful. They no longer do any meds at the clinic, only labs and transfusions. I do all IV meds and Audrey does all oral meds here at Kathy's House. We recently dropped one biggie because of decreased kidney function and we are praying it wasn't the one that was fighting the lung infection. The low-grade fevers have returned and I am scared there might be a connection. She should have another CAT Scan soon and we will see.
Part of what she does at the clinic, too, is school and counseling. She loves both, especially school. She is reading everything. It's amazing, and no one taught her to read. She's just been read to so much and has tried to learn and sound everything out that she's really gotten it. Today, Jillian offered to "read" to me and I smiled, thinking "yeah, right." She read an entire book missing only one or two words, having memorized it. I couldn't believe it, and I realized how often I underestimate her. She's never had the same drive to learn as Kinsey and as the baby, we don't push her as much I guess, so we forget how smart she is sometimes and what a big girl she is becoming. She is being so brave for her twice weekly blood tests. I am amazed when she will say, "Mommy, is it time yet for my blood test? Okay let's go." She hates it despite the numbing cream I apply an hour prior, but she doesn't dread it the way Kinsey dreads all such medical procedures and when it's done, it's done. She is at the age of vacillating between being a baby and a big girl and the shifts are fun to watch. When I call her a baby, she says, "I'm a big baby." I tell her she will be my baby when she's 40, and Kinsey will, too.
Speaking of babies- we are going to have another one. My sister Teresa did it!!! She got pregnant on the first try!!! We are excited and frightened at the same time. Audrey said, "Do you realize we are having a baby and we don't even know where we will be living when it is born? Will he or she live here at Kathy's House with us if we're still here in 9 months?" I said, "Audrey, I don't know. Given what's going on with us, I think it would be totally irresponsible to buy a puppy, but we've done the right thing and it will work out somehow." We are both comforted by the fact that we can KNOW we've done everything we could do even if this baby is not a match for Kinsey. We will not look back and think, "If only..." Of course there is the matter of the 12 remaining embryos-representing two more pregnancy attempts. We discussed those yesterday and decided the only thing to do for now was wait and hope and keep paying for their storage.
We were on our way to Kinsey's favorite restaurant: Rainforrest Café, just outside Chicago, when Teresa called with the news. The restaurant is inside a huge factory outlet shopping mall, and we had to, of course, purchase a few baby booties-in neutral colors of course. I was talking to my dad and said, "We gave away ALL of our baby stuff. Everything!" Dad said, "Now you know better than that. You never give away baby stuff. It's a sure thing if you do you'll have another one!" I said, "Dad- I'm a lesbian and I had a hysterectomy. It wasn't like there was a possibility of an accident!" "You have a point," he said.
Audrey and I are going to buy shirts that say, "I am NOT the grandma!" My dad says he'll be the only grandfather who can say he has a grandchild by BOTH his daughters. My sister's significant other is telling all his friends that his girlfriend is pregnant and he's not the father. He quickly adds that she's not the mother. All in all, the reality is pretty strange and surreal but we are all happy about the new addition. I told Audrey ALL that counts is that in March we have three healthy children. Where we live, how we are managing financially, all the rest are details to be worked out. We have the ability to work those things out if God and the doctors and the angels all do their part to take care of the one thing that does matter, the thing that we seem to have no control over. Our hope is that this baby will be a perfect match and Kinsey will never need it. I teased her one day and said, "Hey, since this baby might help make you well you think you'd be willing to change some diapers?" She said, "Mommy, I will change diapers when I have babies." Okay. Sounds good to me. Sounds really good!
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