Things have not been going well the last couple of months. Our high hopes for the red cells to take off evaporated as her counts began to drop. Her white cells, too, began to drop pretty dramatically, which was the real concern. Those blessed neutrophils got down to 430 at one point and are remaining lower than they had been. She's had a cold which has been rough on her and caused a cough and low fever for almost 3 weeks now. She was re-hospitalized due to a suspected bacterial infection in her blood stream. False alarm so we got to go home after 2 days and 1 long night. Her doctor has officially declared the first course of treatment a failure and plans to put her back in the hospital within the next couple of weeks for the rabbit ATG (more serious chemo). It is less likely to work, but the only current option that makes sense. We are still praying that baby Morrison (who is probably, it seems, another GIRL) will be a match! We will know soon.
All is well with baby and my courageous and wonderful sister. She is nearly 18 weeks now! We discovered that the technology exists to test embryos and could seriously hurt someone for not telling us this a few months ago. It is still pretty rare but has been used in a few cases (one Aplastic Anemia) to successfully produce a sibling match for a bone marrow transplant. So, of course, we have to consider should this baby not be a match and should the rabbit ATG appear to be failing—if we try one more time knowing if a pregnancy occurred, the baby WOULD be a match for sure. Lots of details to work out like who would carry this one, etc.
Kinsey had a great 6th birthday and truly enjoyed Six Flags with all her cousins and aunts. There were 14 of us and a fun time was had by all. She is insistent that she wants an even larger group to attend the Kinsey is Getting Well Party in Disney World. Not sure when that will be as all plans are somewhat on hold until hospital stay is worked out. (Thank you Sean for the platelets that allowed her to ride rides and for the platelets that come every week and are keeping her going.)
In preparation for the next hospitalization and in an effort to determine the true nature of her fever and cough, she's had CAT Scans, blood cultures, X-rays, an echocardiagram, and—tomorrow—another bone marrow biopsy (to ensure this hasn't morphed into something worse which happens but is unlikely at this point). These tests have shown so far that everything is "normal" other than the fact that she has a sinus infection. For that, they've started another medication. And she's back on one of the ones previously removed to help white cells grow.
She's pretty scared as are we, but we are all trying to remain optimistic and not dwell too much on the what ifs. The doctor seems optimistic but "concerned." For now, her energy level is good and she feels pretty good. She's had to miss a lot of school to ensure she doesn't pass her "cold" onto the other two girls with Aplastic Anemia and she's hated that. But today he let her go back, and in the meantime she and I have been working on a musical version of the "Three Little Pigs"—complete with props (really good ones of course). We continue day by day, but these last few weeks have been rough given that we've been at clinic almost every day for one reason or another and most of those days have been long ones. Kinsey asked me, "What if the rabbit ATG doesn't work?" I told her we'd do a transplant from the baby (if a match) or me if necessary. She said, "What if a transplant doesn't work?" I said, "We'll try something else. Look at Brooke and Kayla who've been living with Aplastic Anemia for a few years and have tried lots of things." She said, "So I'll probably at least have a couple more birthdays?"
I told her we were working on another 80 or 90 but—God—those words stuck in my head and I choke when I rehear them play over and over in my mind. My sweet little six year old baby wants to know if she will at least have a couple more birthdays! She said to Audrey a couple of days ago, "I just wish things could be the way they were Mama, you know—we get up and I can just lie on the couch for a little bit and watch cartoons while you read the paper and drink your coffee." She meant instead of the morning medicine ritual which is intensive and worse than the afternoon one but better than the evening one. Audrey said that nearly killed her. She so wants to be "regular" and wants life to be "regular" again. We are finally learning that even in the best case scenario, it never will be again. Our new goal is to make it to the day when we'll be visiting clinic once a year. "God, Mommy, wouldn't that be great?" Kinsey said after her nurse mentioned the distant dream. "Yes, baby, it sure would."
I'm leaving in a few hours for Albuquerque to finish packing and load the U Haul. My dad is meeting me on Saturday and we'll start the long drive back on Sunday. Anyone in Albuquerque who wants to reach me while I'm there. The number is 414-232-0619. I'm renting a car, but I'll mostly be at the house working. Saturday and Sunday will be the hard labor days. Here we are all looking forward to real beds, a couch, a real TV, a real stereo, and toys. Jillian dreams of reuniting with all her babies and believes they are the true reason I am returning. Lots more to tell but I've hit the highlights and probably need to hit the sack for a few hours anyway before Audrey and Kins head to the hospital and I rent a car and head to Chicago to catch a plane. More later. And thank you to all of you who sent birthday cards and gifts. Kinsey and we truly appreciate it. She started on thank you notes and then got sick. She will get back to them and wants to do them herself so its slow going. But, for the moment, thank you all for not forgetting her birthday and thank you for not forgetting us as we continue this long and incredible journey.
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