One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Saturday, February 28, 2004

I finally posted some new pictures. I'm a little behind on getting my website updated. Oh, well, a little busy right now... I still have lots more pictures to get up, plus a new video clip, and I'll let you all know as I get them up there. Anni continues to amuse us with her antics. Yesterday she wanted my sterile latex-free gloves after we had finished changing the extension tubing on her PICC. She started with them on her hands, but pretty soon they ended up on her feet. "Look, I've got duck feet!" she exclaimed. I've also been working on German numbers, colors, and animal names during the day with her, and her daddy also reads her stories in German. Lately, she thinks the funniest word in the world is the German word for 5, "fünf." She throws her head forward and yells, "fünf!" and then giggles and giggles. One night as I was leaving her room for the night she told me, "I'm going to sleep now and I love you, fünf!" I laughed so hard I had to go back in and give her another kiss.

Wednesday, February 25, 2004

We're back home. Whew! The news from Chicago essentially depends upon whether you are a "glass-half-full" or "glass-half-empty" kind of person. The CT showed essentially no change. She still has abnormal lymph node masses throughout her abdomen. However, they have not gotten any worse. They told us that 2 weeks was probably just too soon to expect to see any improvement. So we're going back again in 2 weeks to do another CT, and hope things look better next time around. We came home with the PICC line still in, unfortunately. I was hoping to lose that thing with this visit, but I guess I was just a little too optimistic in my expectations. The good thing about that, though, is that she won't have to have a needle poke for the frequent labs she needs to monitor her condition, as they can draw right out of the PICC line. They also decided not to restart any immunosuppression with her as those stinking nodes are still there. Still, so far, no sign of rejection. We also got a chance to talk with the surgeon about the surgery to correct the blood clot in Anni's portal vein. Basically, he told us that his experience with doing the surgery on patients like Anni who've had living donor transplants has not been great, so he would only want to do the surgery if he's forced to by complications from the clot. The sorts of complications possible are: possible loss of liver due to decreased blood flow (right now, her liver looks very healthy), or major GI bleeds (because the blood clot causes blood to "back up", putting pressure on other vessels). In those cases we would have to try the surgery, with the knowledge that it could not only fail, but leave her worse off than before. So we're essentially just waiting right now. The good news is that the complications mentioned might never occur! We'll just have to wait and see... The trip itself was pretty yucky. We went in the night before as Anni's CT was first thing in the morning. The first thing that went wrong was that Anni didn't take her nap that day. She was too excited by the prospect of going to the "hossy-pal" (hospital). Given that her last couple of trips have been no fun, it's a real testament to the kindness of the staff there that she still looks forward to going. She kept telling me that she wanted to show her new doll, Carla, to Beata, our favorite nurse. So by the time we hit the road at 6 pm, she was wired from lack of sleep. Frankie, true to form, fell asleep almost as soon as the car began moving. However, after an hour of grumpy Annika's yelling at the slightest provocation (she doesn't do well without sleep), Frankie was awakened. Now Frankie is the sweetest little baby, except if you interrupt her nap time. So... there we were hurtling down the road at 70 mph with 2 kids wailing at the top of their lungs. Pretty soon, Anni realized that she just couldn't compete with a screaming baby, and so she settled down and pretty quickly fell asleep. Once Anni stopped wailing, that helped a lot with Frankie, who was pretty happy when I gave her my knuckle to suck on, until she realized that milk didn't come from that particular part of mommy. By that time, though, she was calm enough for me to distract her with a rattle. So the rest of the trip was peaceful. One good thing about going to Chicago the night before was that we had a chance to meet the family of a baby who was just transplanted last week. He suffered a collapsed lung over the weekend, but is now slowly showing improvement. They are a very nice family, and reminded me that I need to remember how far Anni has come. I hope that seeing Anni gave them hope for how good life can be after transplant, even when things aren't going perfectly! We all slept together in a tiny room at the Kohl's house, which is when I realized that Frankie *is* actually a noisy baby at night, after all these times that I've been reassuring people that she's really not so loud. The problem is just that she's not noisy the way you expect a baby to be when she wakes up. Instead of crying, she makes all these happy baby squeals! I was worried that she was going to wake up Joerg and Anni, so I kept trying to stick her on the breast really fast to quiet her down and get her back to sleep, but she kept pulling away to make more of her loud little "I'm so happy" noises. Luckily, they were both so tired that they slept right through it. Anni was pretty happy when she woke up at 7 a.m., and saw that everyone was in the room with her! So we hurried over to the hospital to get her ready for her CT. There's a lot of preparation that goes into getting a child ready for a CT, so it was 9:30 before we got her back to the room and ready to start drinking the contrast fluid. Of course, Anni refuses to drink the contrast, so we had to get an NG tube placed (a tube from her nose down to her stomach). Anni fought that tube so hard, screaming and crying so hard that sweat was pouring down her forehead. When they started pushing the contrast into the tube, Anni screamed and screamed. Pretty soon, she was throwing up the contrast, mixed with blood. Of course, Annika's favorite position for throwing up is with her face buried in my chest. I joked with Joerg afterwards that I'm just going to start calling my bras "vomit catchers." Anyway, she just couldn't keep the contrast down, and screamed and moaned in between tries. We all felt just terrible for her. After much concern that perhaps the tube was placed incorrectly, they finally gave her a little Versed to help her calm down, and she managed to keep just a little of the contrast in. At 1 p.m. they finally said "enough!" and took her to CT. Frankie and I waited in the room, while Joerg went with Anni. We waited and waited and waited, much longer than is usual for a CT. It turns out that she hadn't managed to keep down enough contrast, so they had to give her extra in the IV. On the positive side, Joerg pointed out that she must be feeling better to have the strength to fight against the NG so hard... By the time we talked to the docs and got her CT results, it was 3p.m., just the beginning of rush hour, so we *ran* to the car to try to get out of town before the traffic got too bad. Of course this meant that we didn't take time to eat. Since Anni had been NPO (nothing by mouth) for the CT, Joerg and I had just been grabbing quick snacks out of Anni's sight. So none of us had really eaten when we hit the road. I had some cookies that I had made over the weekend with me, so we all shared those to stave off starvation. We had been on the road about an hour, and were almost through the worst of the traffic, when Anni got a look I knew too well on her face. Yup, she tossed her cookies. What a mess! We got off the highway and cleaned her up. Anni looked over at Frankie and said, "Frankie, I spit up a little bit!" The rest of the trip was pretty uneventful. Anni had a good time dressing and undressing (and dressing and undressing and dressing, etc...) her new Barbies that I got her for the road. We're keeping them in the car for special "going to Chicago" entertainment. Once again, Frankie was so good on this trip that I told Joerg we ought to call her "easy Frankie." Joerg vetoed that idea, pointing out that that is not the sort of nickname we want following her into her teen years. In other, non-hospital, news: we are enjoying watching Frankie's sweet personality emerge. A few days ago, she started playing a "peekaboo" game witth her daddy: she would look at him with a big grin, and when he grinned back at her, she would hide her face in my chest. After a few seconds, she would look back uo at him and repeat the game. And she still watches Anni with a concentration that is a sure sign of coming big sister worship. Anni has come up with her own nickname for Frankie--she's started calling her Frank! But she is very careful to inform people that "Her name is Frankie, but her *name* is Franciska." I don't think she wants other people calling her Frank! Anni has also been doing her best to give me a heart attack with the things she's saying lately. A few mornings ago, she headed to the stairs with an armful of stuff: too much to hold onto the railing as she descended. I called, "Anni, wait for me to help you!" She answered sweetly, "That's OK, mommy, I'm going to fly." You should have seen me run to the stairs, yelling, "No, don't fly!!!" She waited for me, but looked like she thought I was crazy. And then, shortly after that, we were sitting downstairs while I nursed Frankie on the sofa. Anni wandered into the kitchen, and I asked her what she was doing. She answered, "I'm taking care of myself. I'm taking some medicine." Another heart-stopping moment, as we, obviously, have quite a few high-powered meds that could be dangerous even in quantities just a bit over her usual dose. Of course, we usually keep those meds up and away, but I panicked, wondering if we had somehow forgotten to put them away that morning. Turns out that she had just found the dropper for the baby anti-gas drops, so no big deal. But, boy, it's easy to see how little kids can get hurt so fast.

Sunday, February 15, 2004

2/15/04 So, life goes on... Annika's been off immunosuppression for 10 days now, with no sign of rejection, thank goodness. She's being watched very carefully with blood draws twice a week to make sure we don't miss it if she does start to reject. The PICC line we have in to give her the I.V. drugs is a real pain, but we're so glad that she has responded to this relatively mild treatment. So far the only real side-effect that we've noticed is that she has absolutely no appetite (except for the milk-free "chocolate" chip cookies that Jennifer, Riley and Shelby's mom, sent to her!). In one week, we go back to Chicago to make sure that the lymph nodes are still shrinking. I have calmed down quite a bit. Just hearing PTLD mentioned in connection to Annika freaked me out. A lot. Then to hear that the portal vein was clotted... I asked Dr. Alonso about their success rate with the rex shunt surgery to correct this problem, and she told me that it had mainly been done on non-transplant patients and that the success rate was very good. So I asked her about the success rate on transplant patients, and she told me, "Well, it's been done 5 times, and we lost the graft twice." That is, 40% of the time they had to retransplant. Needless to say, I didn't like the sound of that. However, I have since done some more reading on the procedure, and I think that we have every reason to believe that Anni's chances of success with this will be more like the success rate in the non-transplant population (which is something like 90%) because her liver is really very very healthy, even with the portal vein being clotted. We'll be talking to the surgeon next week, plus beginning tests on her to prepare for the surgery, so maybe I'll have more info to share then. I'm finally caught up on the "hospital laundry" (somehow, Frankie had blowouts at least once a day while we were there--much more frequently than usual), and Joerg's been working this weekend to get himself caught up at work. Some of the moms from Anni's summer playgroup have been bringing by dinners for us, which has helped immensely to give me the time to rid the house of cat hair, get unpacked, and get used to taking care of an I.V. again. The trip to the hospital completely disrupted Frankie's fledgling sleep schedule. She's back to wanting to be held while she sleeps. I guess the change in routine left her feeling less secure, plus she probably sensed our worry and tension. However, she did manage another first this week--she rolled over! Of course, it was completely by accident, and she was actually really mad about it when she realized what she had done, but still! Thank goodness for after-Christmas clearance sales! Joerg and I had been buying little toys for Anni here and there as we noticed things on super cheap clearance. We stashed this stuff away, planning on saving it for her birthday or other occassions. It has really come in handy to have that stash of new toys, though, to add a little excitement to her day, as she gets a bit stir-crazy from staying inside all the time. Plus, she misses hanging out with other kids, as she is so social. She has really been very good about not messing with her I.V., though, much to my amazement. I did catch her once trying to flush her line herself, with a syringe full of air. Gulp! Luckily, the cap is actually pretty hard to attach to fully. I guess the manufacturers did probably realize that they needed to make it relatively inaccessible to toddlers. Some funny things from Anni lately: She has a new dining room set for her dollhouse, which includes the setup for a birthday party. This means that it is a birthday party for Tebby Tebby (the name of one of her favorite dollhouse dolls) everyday. Tebby Tebby is a toddler, and so she has a booster seat. Anni insists upon calling it a "rooster seat," despite our attempts to correct her. We've just given up! Also, in the hospital, every time Frankie had another blowout, I would say, "Mama Mia! What a mess!" So now Anni has taken to calling me "mama mia." As in, "Mama Mia, do you want to go upstairs and play??" It's funny to realize how much your own lifestyle influences your child's view of things. One of the toys Anni got recently was a "beauty set." I'm proud to say that she knew what to do with the hair dryer and the curling iron. She thought the curlers were just weird. It also included a manicure set. Now, my own version of a manicure is nails clipped very short to avoid getting dirt under them and a quick swipe of vaseline. So she was pretty stumped with the pretend nail polish and fake nails. Last I saw of the fake nails, they were stuck to daddy's sock. But the real eye-opener was when she saw the very pretty little perfume bottle and said, "Oh cool! Hand sanitizer!"

February 9, 2004
We finally heard from the docs today. We were getting a little worried because it took them so long to get back to us. We thought that if the news was good that they would be in quickly to let us know. Turns out that they found a new wrinkle. However, the extremely extremely good news is that she is responding to treatment for the PTLD. Her CT looked much better today than it did on Thursday. That is fantastic, as PTLD is a really scary disease. They are going to leave her off the immunosuppression, and send her home on the I.V. drugs that she is getting here in the hospital. So we'll be going home tomorrow. But there was also some bad news. It looks like she has suffered another blood clot (she had a blood clot before her first transplant which made the transplant much harder, and then she had another blood clot after her first transplant, which made the second transplant necessary). Unlike last time, though, this blood clot is fixable with surgery. If the surgery fails, though, she will most likely end up needing another transplant. The surgery is called a rex shunt, and it restores blood flow to the liver. Children's Memorial is one of the only hospitals in the country to perform this surgery, and so we are again in the best place to be. We'll have more information about this after we talk to the surgeon. First, though, they need to make sure that they definitely have the PTLD under control, and that she doesn't reject. So we're going to be having blood draws twice a week to keep close tabs on her liver, and we're coming back in 2 weeks for another CT scan to check on the PTLD. So all in all we are happy that she has responded immediately to the treatment, and are looking forward to going home tomorrow. I'll keep you up to date on what we find out on the ever-complicated Annika.

February 6, 2004
We are at the hospital in Chicago again. Unfortunately, Annika has PTLD. This is a disease that transplant kids get that can lead to lymphoma. They don't yet know if Anni's lymph nodes (she has a huge mass of them in her abdomen) are cancerous or not. However, they are treating her very aggressively to try to stop the proliferation of lymph nodes (and to reduce the size of those already there). She is off all immunosuppression, and getting a chemo-grade drug, although she is not on chemo. That will happen, though, if she doesn't show improvement by Monday. Actually, they will have to open her back up again next week if things don't look better in order to get a better look at those rogue nodes. The good news is that it looks like they caught the PTLD in Anni very very early, so we have a much better chance of stopping it without having to resort to chemo or radiation or anything even more aggressive. We are all feeling pretty yucky up her in cold Chicago. Firstly, we are just worried about Anni. Then we are all sick with RSV (a respiratory infection). Anni, Frankie, and I all have it. RSV can be very very serious for young children, but it looks like Frankie is handling it pretty well. Of course, we are already in a great hospital if anything comes up with her, but my feeling is that if she was going to have any major problems that they would have already developed. Anni is the one that is sickest with the RSV, but now we know that she is simultaneously battling PTLD, so no wonder. To keep it in perspective, though, in the end this could all turn out very well. With PTLD, you have to stop the immunosuppressive drugs altogether. This leads to rejection in some kids, but some kids do just great, and then they get to go home on no immune suppression whatsoever! So let's hope that she responds well to the treatment, and that Cliff's liver has decided to be Anni's liver now so that there is no rejection! Well, I need to get a bath for Frankie, who recently threw up all over herself. Yum!

1/29/04 Having kids really is a rewarding experience. This afternoon I took Anni outside to play in the snow. She "helped" me shovel the driveway, and then we went to visit all our neighbors' geese (little stone statues of geese are popular porch decorations around here. I don't get it, but Anni loves them...). Finally we went to the backyard and Anni asked to swing. Mind you, it was 10 degrees fahrenheit and I had to chip the ice off the swing before she could sit down, but swing she did. As I pushed her higher, she began to practically howl with laughter, kicking her feet back and forth in the air. I yelled up to her, "Anni, you are silly!" And she called back, "Nope, I'm HAPPY!" What a perfect moment! Anni had a chance to play with Sarah today, which made her very happy. She loves showing and sharing all her new toys, and Sarah hasn't been over since Christmas time. Sarah's mom, Nanci, got several huge grins from Frankie, and then she observed that Frankie looks very much like a cabbage patch doll. I leave it to you to decide:

We will be going to Chicago next week for a full workup on Annika. Her liver numbers have been steadily climbing the past couple of weeks, so it's another biopsy, plus a head and abdominal CT scan. We'll be staying at the hospital 1-2 nights. We'll let you all know if we find out anything, but thus far Anni has been a mystery to the doctors there. Once again, I hope this message finds everyone healthy and enjoying the winter (which I, frankly, am quite tired of...) Love, Moreena