I certainly cannot used the "not much has changed" excuse for being so long in writing an update this time.
Our lives continue to evolve with only a small amount of direction from us. As we continue to ride this roller coaster in the dark--the dips and drops, the curves and peaks and climbs, the sharp and sudden banks that jar your teeth and entire skull continue to surprise, delight, frighten, nearly kill, and thrill us--day to day to day. This makes Audrey say, "Let me off this damned thing! Give me a scary movie involving other people's lives any day!" It makes me say, "Okay, okay--we're here but can you please turn the lights on or better yet, let me sit in the control box." Kinsey and Jillian simply cry or whine during the worst of it and squeal with delight and laughter during the best of it--only sometimes (rarely) questioning it at all.
It has been a time of change, change, and more change. As I struggle to establish routines (breakfast, medicines, lessons, baths, bedtimes), even Kinsey's clinic and home-school schedule changes week to week outside our control. And yet, we seem to have settled somewhat into a life of certain uncertainties. In the midst of these little changes (what day her teacher will come, what day she will need a transfusion, what medications she will take), we have celebrated some victories and birthdays.
On March 21, 2003, in a diner in NY where the waitstaff sing, we celebrated the one year anniversary of the dragon (aplastic anemia). We called it a "Dragon Slayer Party" and we toasted to the many, many dragon slayers who were not there and to those of us who live with him (can't tell you why he's a "he" but he is) every day. We went to a Broadway play. We rode to the top of the Empire State Building--all this after spending the morning at a New York clinic where Kinsey got a platelet transfusion, three days after getting three transfusions prior to travel. The dragon is not dead, we acknowledged, but he is weaker than he was at his birth and we are stronger. We are winning. This time next year, he will be slain! A few blocks away from thousands of war protesters and thousands of miles away from a war we hardly have time to think about, we celebrated our own war. We celebrated in a city braced for another terrorist attack with little fear as we felt our September 11 had come and gone and any future ones would not be in New York for us any more than the first one was. We celebrated and it was a great party. It may seem odd to celebrate such a day, but it was that or cry all day. There are those days we each have personally, nationally, globally from which everything is marked as before and after. March 21 is our September 11. Nothing will ever be the same again and we always talk in terms of before and after.
A free lance writer from Mississippi who wants to do a story on us called the other day and we were talking and she said, "But it might be normal again. You might be able to go back to your old life."
"No," I told her, "it may be great again, and we appreciate how wonderful it is right now because we know how much worse it can be, but we will never go back and it will never be the same. We no longer feel safe because one of those things that can't happen to you, that only happens to those poor awful souls your heart breaks for happened to US. So who is to say it won't again? That invisible shield that protects us from the most horrible, most unbearable pain was shattered on March 21, 2002. We will never be the same." And so we mourn the old life silently and celebrate the new one outwardly--each of us in our own way. That day in that city, which as Kinsey says "is a wonderful place to visit but never live," we celebrated the anniversary of the birth of the dragon and the likelihood of his coming demise, and all those heroes who have taken up swords against him.
With us to celebrate was probably the single most significant dragon slayer--Teagan Carter Morrison, Kinsey and Jillian's new baby sister. On the day we were supposed to travel to New York (February 19) she decided she didn't want to wait any longer to join us in this journey. Teresa called me at about 4 a.m. and said her water had broken. Okay--it wasn't exactly like that. She cried and I said, "Teresa, what's wrong?" And she cried. And I said, "What's wrong?" Through her tears and my pounding heart we concluded that her water had probably broken. She called her doctor. I called Dr. Margolis to tell him he wouldn't be going to New York either. Then I called the reporter from People Magazine (because they wanted to be there for the birth). Teresa called back to say she was going to the hospital. Irrationally, I ran downstairs and threw a load of baby laundry in the washer, after snipping the tags off. Then I grabbed a couple of things out of the already packed bags stacked in the living room, and Kinsey and I took off for the Chicago airport (knowing a direct flight from there would get us to Louisville sooner than one from here with layovers). We made it to Chicago 16 minutes before the flight departed but were told we couldn't board due to security, even though we had no luggage. So we jumped back in the car (Aunt Ann's car) and kept driving. Audrey, Ann, and Jillian were not far behind in the van and our detour allowed them to catch up. We all arrived about 8 hours after Teresa and about 19 hours BEFORE Teagan would finally show up. She was born at 10:41 on February 20th (the 6th anniversary of Audrey's mother's death), weighing 5 lbs and 10 oz. Kinsey, Audrey, Ronnie (Teresa's significant other), and I were there to watch the birth. Teresa's older daughter Brittany also spent the night with us in the delivery room. Kinsey talked to Teresa, held her hand, and said, "You can squeeze my hand; it's okay" during her contractions. After deciding to make her early entrance, Teagan was taking her time and we all slept on and off on the floor, in chairs, and Kinsey and I shared a little cot. After the birth, Teresa freshened her make-up, brushed her hair, and looked radiant and fully recovered within 10 minutes. Not true for the rest of us--especially me and Audrey.
Teagan Carter- so named to have the initials T.C., as in Aunt Tee Cee (Teresa), "Carter" uses the first three letters of Audrey's sister Carrie Ann's name and the first three letters of Teresa's name and is also the maiden name of our very dear friend Bettye Carter Pressley. And so an angel was born that day. And she is so sweet, truly a "good baby," the kind I'd only ever heard about before. She eats and sleeps and now that she's grown a bit, opens her eyes more every day and just usually looks around happily. Sometimes she just wants to be held, but that's okay because sometimes we just want to hold her. The girls love her very much and are learning lots about helping and about independence.
The first morning I took the three of them to the clinic alone, I had allowed nearly two hours to get them all ready; it wasn't nearly enough. I said to Jillian, "Please honey, just put your shoes on," as I was finishing Teagan's bottle. We arrived at the hospital where Audrey joined us from work and I said, "Look," pointing to Jillian's shoes. They were on the wrong feet. While Kinsey loves the role of "big, big sister," and wants to pick Teagan up all the time, carry her around, and loves to feed her and HELP in most any way, Jillian doesn't quite feel the same. She's become a mixture of "Mom--I'm 16 years old!" and "Mom--can I have my milk in a bottle?" We simply say, "Wow, you're kind of short for a 16 year old. Can you drive yet?" and "Sure, I'll get you some milk in a bottle."
One night recently, Jillian was crying, sitting on the potty, saying, "It hurts Mommy. It really hurts." Kinsey was practicing guitar and Audrey was burping Teagan. I held Jillian, trying to press my chest into her little belly, saying, "I know it hurts baby. It's just this thing called constipation that you've never had before. It will be okay." She continued to cry, "Mommy it won't come out and it won't go back in and it H---U---R---T---S!" Kinsey began yelling, "Mommy, come listen, come listen!" Audrey was still trapped with Teagan and her bottle, but willing to listen. Kinsey wanted us both to listen--NOW. Teagan began to cry. "MOMMY--come listen! I knelt there in the bathroom, holding Jillian against me with my face near the toilet (already partially filled), and I thought in that moment, "Today I have been pissed on and slimed with spit up, and now I have my face in a toilet filled with 'doo doo'; this is what my life is about and I am so happy to be in this role. If only it weren't for . . ."
Audrey and I were looking at some photos the other day, which is one of the hardest things to do. We always see them and remember that we were that family with happy, healthy children, that we were living that charmed life before, before March 21, before the dragon entered Kinsey's body and our lives. I said to her, "You know, I can wax philosophical about how much we've all learned and grown, how much better we are as people because of this, and that's all true, but the real truth is that I want my old life back. I could handle knowing less, being less. I would trade in everything we've gained and all that we've grown to have it back--save one: Teagan. She will be perhaps what makes the difference in more ways than one.
Kinsey, Jillian, Teagan, and I were in the food court of the downtown mall across the street from the Federal Building where Audrey works a few weeks ago. I was getting a bottle ready and Kinsey was holding all (at that point) 6 lbs of Teagan. A man sitting at the next table said, "Oh my God! That's a real baby! I thought you were holding a doll. Wow. What a great big sister you are!"
Jillian said, "Me, too."
Kinsey said, "Well, she's a great little sister. She's going to save my life." She went on to tell the story. I nodded validation as he occasionally looked at me as if to say, "Is this kid for real?" Before he left, he said he wanted to make a donation to help but he didn't want to offend me. I told him Kinsey had a fund and I referred him to the website. He asked me to write it down, and as I searched for paper, he just handed me some money folded up and said, "Here, just take it please. I was going to the bar tonight and blow this but giving it to you will make me feel a lot better." We thanked him, and later when I saw that it was $100 we all got excited. We had Mexican for dinner that night--Kinsey's treat.
One more party that was truly significant in our lives was the Kinsey Is Getting Well Party at Walt Disney World in January. Twenty-three of us (should have been 24 but Ms. Fran went to the E.R. instead) gathered in Orlando, Florida, to celebrate the Kinsey is Getting Well Party. It was fabulous! Kinsey had the time of the life, literally, and loved every minute of being the center of attention as well as bossing everyone around: "Next, we're going to ride the Test Track. Follow me everybody. Mommy--which way?"
Lots of dragon slayers attended: Aunts Tee Cee, Ann, and Dee Dee, cousin Sean with his family (Jacki, Kayla, and Miranda), Grandma Nancy and Grandpa Jerry, cousins Payton, Jeff, and Jennifer. Godparents Jill and Jim with four wonderful young men from Sudan, who really added a lot to the celebration: Gatmuon, William, Angelo, and Mading. Kinsey loved the fact that they didn't know Mickey Mouse from Donald Duck and had never ridden a roller coaster or merry go round. She liked helping introduce them to the "happiest place on earth." They were great to carry her or Jillian, too, when they were too tired to walk but didn't want to ride in a stroller. We got to eat breakfast with everyone from Pooh to Mulan to Minnie to Sleeping Beauty to Goofy. (That's where you pay a lot of money for "food" to eat a little in between snapping photos of kids who are going to eat nothing). We saw parades and rode rides and more rides and more rides. With the small exception of Splash Mountain (it was too chilly), Kinsey rode everything she wanted to with the people she wanted to--often more than once. The experience was truly a memorable if exhausting one for all and we can't wait to go back for the Kinsey IS WELL party in February, 2004!
Okay, so we celebrated a couple of births and had a few parties. The rest is kind of small stuff, but for those of you who want some details or care more for facts than philosophy--here's a bit more of the story:
Kinsey's counts have been like a roller coaster (big surprise). While her red counts finally took off and her white counts became sometimes HIGHER than normal--her liver started having serious problems again. A liver biopsy was scheduled and canceled several times before she finally had one in March--which showed indirectly (read: process of elimination) auto-immune hepatitis. So the good doctor treated that with steroids and problem finally solved (for now). Kinsey gained 7 lbs in 10 days and got the puffy cheek syndrome, but is now off the steroids and starting to slow down. The doctor took her off her white cell stimulating medicine and put her on a new immuno-suppression drug (one we hope will help the liver stay calm AND help the AA). Her white counts dropped like a rock. Neutrophils that were 11,000 a couple of weeks ago were 304 Friday. She's back on the GCSF (Growth Colony Stimulating Factor). Red counts are still doing well all on their own inching toward normal, but as of about 6 weeks ago her platelet consumption peaked with a 3 week transfusion period before beginning a rapid decline which now has her back on a twice-a-week transfusion schedule with bruises from head to toe. She has bruises on her butt from sitting and LOTS more from playing and playing (as her energy is excellent; thank you red cells). We have to constantly remind her not to run, jump, or do anything that could result in a minor accident causing major brain damage.
The current status on the transplant is this: Two experts agreed that the 250,000 stem cells contained in Teagan's cord "should" be enough. Dr. Margolis said he didn't like the word "should," and would prefer to wait until Teagan is 4-6 months old to get a little marrow from her (a very minor procedure for her with no negative side effects). The race now is between Kinsey's platelets which she seems to have built up antibodies to and Teagan's growth. Weighing the risks of waiting (Kinsey could have a bleed) with not waiting (might not have enough cells to work) is a difficult balance. Dr. Margolis is so far hanging onto the idea that we can wait and the transplant will probably take place in July or August. Audrey and I are willing to lock Kinsey in a padded closet if necessary given the difference in pre-transplant regimens. The drugs she would have to take vary greatly depending as do the serious and long term side effects. I will do another update soon dealing with some of the transplant details as I learn more and know more. For now, we wait and prepare ourselves as best we can for what Dr. Margolis calls her "one shot" at a cure. It's the best shot she could have under the circumstances and it's a good one, but not--he is quick to remind us--100%. "If it doesn't work?" he was recently asked by John Walsh during the taping of the John Walsh show. His answer: "She will die."
Kids always talk about what they want to be when they grow up. Kinsey is no exception. She said a few weeks ago, "When I grow up I want to be a "S.O.A.A. and not D.E.A.D." She likes to spell everything out as she becomes better and better at spelling and word recognition. S.O.A.A., she explained to us, stands for "Survivor of Aplastic Anemia" and D.E.A.D. is just dead. But as she told a People Magazine reporter a few weeks ago, "I'd rather be with Dr. Dave than in the grave." Us, too. We continue to be glad we brought her here and know she is in the best hands possible with the best chances possible. Dr. Dave told us in a year or two at most, he would like to present us with a well child. We'd like that, too. We dream of that. For now, with serious money struggles, insurance confusion, and paperwork pile-ups (none of which are real problems in the scheme of things) we wait for that--happy, healthy, whole.
Karen
Audrey, Kinsey, Jillian, and Teagan
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