Annika's transplant story

After the surgery we waited anxiously for the appearance of poop with color, any color--brown, green, we would have taken purple, even. Having colored poop is a sure sign that there is bile flow. The waiting was hard, contemplating the fact that our tiny baby could have gone through all this pain for nothing. Knowing that 80% of Kasais are eventually failures. Soon after surgery she had a green poop, and we were just so happy we wanted to hold onto that diaper for the scrapbook. When we told the surgeon, an older and quite impressively solemn Asian man, who had actually studied with Dr. Kasai himself in Japan, about her fantastic diaper contents, he didn't get excited at all. "It's too soon," he explained, "that could be bile just draining out from the surgery, and not actual proof of normal bile flow." So we waited some more, and were finally rewarded with some color. We thought that maybe Annika would be one of the lucky 20%.

We tried to go back to life as we had planned it. I started to teach, part-time, again, and we hired a wonderful sitter, Lauren, to watch Annika for a few hours each week at my office while I taught down the hall. But it only took 3 months for signs of Annika's continuing liver failure to appear. Anni was diagnosed with ascites, which is fluid that accumulates in the abdomen due to liver failure, and esophageal varices, which are blood vessels that become dangerously enlarged due to pressure caused by a progressively hardening liver. The varices put Annika at risk for a life-threatening bleed, and the ascites could become infected, again a possibly life-threatening complication. Despite these signs that the Kasai was failing, our center decided not to list her. In hindsight, that was certainly a mistake, but there was still some hope that perhaps her situation might turn around.

Our sitter, Lauren, was a real trooper throughout that long semester. Annika became progressively crankier, and wanted to nurse constantly. Lauren walked her and walked her, humming, and never complained about being given charge of a difficult baby. Finally, the semester was over, but before we had a chance to contemplate what our next move would be, Annika's bilirubin shot up, practically overnight. We took her back to her G.I., and an ultrasound showed that she had developed 2 large bile lakes in her liver. She was 7 months old, just 6 months post-Kasai. This time it was clear that she needed to be listed for transplant. Anni was taken back for another procedure, and two bile drains were placed, which emptied the bile successfully.

Within a week, Annika's bilirubin was back to normal, and, most shocking of all, it looked as if her ascites had completely disappeared. We were amazed at the near instantaneous results. By the second week, though, we were beginning to wonder if there was trouble. Anni seemed a bit too quiet, which was at first a welcome relief from her crying, but soon began to seem a bit weird. We headed back to our GI again, a 3 hour drive each time, and on the way Anni fell asleep. Strangely, she didn't wake up when I took her out of the car. We were in the waiting room, and we began to get a bit panicky, as she wasn't even waking up for her usual nursing session. So I actually tried to wake her, stroking her head, calling her name, moving her around, but nothing worked. We got a nurse, who grabbed us and ran us straight back to a room. While one nurse tried cold cloths, another ran for Dr. Bishop. They took blood from her, which also didn't wake her.

Now, for some reason that I cannot comprehend, Iowa City actually has the Glasgow coma scale posted in many of the rooms (the lower the score, the worse the prognosis). Anni was scoring pretty damn low, and don't think we didn't notice that. The G.I. let his resident put the I.V. in her, which normally would have had me cringing, but Anni did not even respond when it took her 3 very long tries to get it in. The labs came back, showing her sodium levels alarmingly low (136-145 mM is normal, under 125mM can lead to seizures and coma, and she was at 16mM). They began giving her massive quantities of sodium through the I.V. and called for a PICU room (Pediatric Intensive Care Unit). There were no rooms available, so a PICU nurse was stationed at our door on the regular floor. They came to check her sodium levels every 2 hours with a heel stick. After 8 long hours, she woke up.

That night, of course, they continued to do heel sticks every 2 hours to monitor her. But, of course, we managed to get The Night Nurse Who Does Not Know How To Do Heel Sticks. After her third try at the midnight check, which was again unsuccessful, I insisted that she go get someone else. Which was when it was discovered that the nurse had been using the wrong equipment. The next morning, exhausted and stressed, I complained to the doctor in charge that that should not happen again. He lectured me about the fact that the blood draws had to be that frequent because she had been so critical. Aaarrrrgggh. I pointed out that it was not the number of blood draws I was objecting to, but the fact that we had been given a nurse who didn't know how to do them and for some reason would not ask for help until I insisted she do so. I told him that I expected we would be given more experienced nurses when she was in such a bad state.

If we had been at home when she "went to sleep," would we have known what an emergency she was in? Would we have gotten her to the doctor quickly enough? What if it had happened at night? We had been told about the possibility of bleeds, and when they happen, you just know it is an emergency and to act quickly. But Anni slipping away from us as she did was just so quiet, so unspectacular, and nothing that we had been warned to watch for. Hindsight can be a terrible thing. When you look back and recognize the mistakes, it's hard not to agonize over them. But even when hindsight shows you how lucky you were, you can even drive yourself nuts recognizing how easily it could have turned out differently.

After a few days we were sent home again, now with a sodium supplement. We didn't stay home long, though, before Anni spiked her first fever, in a pattern that was to continue for the next 5 months. We brought her back to Iowa, where they put her on I.V. antibiotics. They could find nothing wrong with her, so sent her home. Off the antibiotics for 2 days, the fever returned, and so back we went. Again she was put on I.V. antibiotics while we waited for any test results to come back positive. Again, nothing. Again, we went home. For 3 days. And, yes, again a fever.

And repeat that pattern for the next 3 months. The first few times we came home relieved, happy, and optimistic that whatever was causing the mysterious fevers was finally over. But with every return of the fevers, higher and higher each time, we began to wonder what we were doing. During one inpatient stay they had decided to run some test for which she need to have anesthesia. I came to the post-anesthesia unit and they were preparing to move her back up to the room, when her fever shot up from normal to 105 in about 5 minutes. At the same time her belly expanded to 3 times its usual size and became rock hard. Again she was rushed to the PICU, and they placed a central line in her femoral artery. She recovered from that strange episode fairly quickly, and that was the first time that they managed to catch the bacteria which was causing her fevers. The femoral artery line, however, caused her to develop a blood clot in her leg, and we had to begin giving her shots twice a day to break up the clot, as if the frequent I.V.s and blood draws weren't enough.

Meanwhile, we had begun to look at living donor as an option. Jörg and I were devastated to learn that neither of us had blood types compatible with Annika's (there was a 75% chance that one of us would be compatible). It's so hard to explain how terrible the feeling is to contemplate a living donor. On the one hand, the doctors were telling us that Anni could be transplanted at any time with an organ from a deceased donor, but the idea that your child will be saved from someone else's loss is just an idea that cannot be easily reconciled in your head. You just can't wish for it to happen sooner, because that feels too terrible, as if you are waiting for someone else's tragedy. This is not how I think about it now, but those thoughts and that feeling of "oh, no, this is just unbearable to think about it" are there at first for most parents that I have spoken to. Then there is the fact that perhaps no organ would be donated for her in time, so the doctors suggest a living donor. If it had been one of us as a donor, we would not have hesitated one second. That's just what parents do for kids, and no question. But to have to ask our families...it was incredibly hard, and I felt incredibly lousy for doing it. My sister and her husband agreed with no hesitation whatsoever, but still I knew that they had a child (and now have three) and that the surgery would put their lives at risk, and that at the very least, they would suffer pain and several weeks off work. However, neither of them had compatible blood types. My brother was the sole support for his wife and new baby, and didn't have a job that would offer him the flexibility of taking a few weeks off. On Jörg's side we had little hope, as his family is quite small, and mostly older, meaning they would not be great candidates as donors. We really did not have many options. We agonized over this as we watched Annika getting sicker and sicker. Finally, we talked to the transplant surgeon about the difficulty we were having finding a living donor "back-up" option. He really did seem somewhat surprised that we were having problems, as if asking someone to undergo major abdominal surgery, losing 1/3 of their liver in the process, was no big deal. He told us that he would consider using Jörg's step-brother-in-law as a donor, even though he was over 50, as long as he was in excellent health. Jörg called him, and he bought plane tickets for him and his wife to come to this country to be tested (did I mention all of Jörg's family lives in Germany?).

We breathed a sigh of relief that perhaps we would at least have a plan in place in case Annika should take a sudden nosedive and no longer be able to wait. At the same time, though, we were beginning to question whether we had Annika listed at the right transplant center. We knew that Iowa City did not do a lot of pediatric liver transplants when we listed her, but we really trusted Annika's G.I. there, and he told us that the transplant surgeon was excellent. However, we were frustrated at how long it took the transplant team to get in touch with us, even when we made requests while inpatient. We were worried at the lack of communication, and at their seemingly nonchalant view of the living donor option, at the fact that we were bouncing back and forth between home and hospital, being discharged with no clear answers and no clear plan of action. In the past 3 months, Anni had had approximately 18 I.V.s placed, and they were getting harder and harder to place. In one particularly atrocious 24-hour period, Annika was stuck with a needle 14 times. Then the transplant surgeon dropped a bomb on us.

A few days after we told them that Jörg's brother-in-law would be arriving from Germany to be tested, we were told that the surgeon had reviewed Annika's MRI (done nearly 3 months earlier, when she was being listed) and decided that she was not a good candidate for a living-donor transplant after all, due to problems with her portal vein. We were furious. Spitting nails, screaming at the phone, FURIOUS. We simply could not believe that we had spent all those months going through the agony of asking people to make this huge sacrifice, only to be told that it was not even a possibility, based on tests that should have been read when they were actually performed. Had we known that Annika wasn't a good candidate for a living-donor transplant, we would have immediately double-listed her, to increase her chances of getting transplanted before it was too late. We might have looked at centers in regions with shorter wait times. As it was, we were simply left with our fear that Annika had not accumulated enough time on the list to even have a chance. We immediately contacted Children's Memorial Hospital in Chicago to get a second opinion and list her for a transplant there.

The doctors in Chicago took one look at her, and told us that she was in terrible shape nutritionally (beginning to lose muscle mass--her body essentially attempting to digest itself) and that she should have a semi-permanent I.V. placed for long-term antibiotic use and to receive intravenous nutrition. We were so relieved that she would no longer be subjected to all the needles, as most labs and all her meds could be given through her PICC line, which could stay in for months at a time. We tried once more to go home and wait for transplant, but Anni's fevers were relentless, even returning when we had her on the I.V. antibiotics at home. So rather than bouncing in and out as we had the past several months, seeing home for only a day or two at a time, Chicago decided to admit us with the expectation that she would stay hospitalized until transplant.

My mom, a retired schoolteacher, had been staying with me in the hospital with Annika when Jörg couldn't be there, or staying at our house to take care of the cats while Jörg came to be with us. My dad had been spending time down with his family in Oklahoma while my mom was gone. One day my mom got a call that while they were both out-of-town, their house had caught fire. They lost most of their possessions, and the inside of the house was mainly gutted. So my father had to come home and begin the long and arduous process of trying to salvage what he could, and dealing with the fire investigators, insurance, and contractors to find out about rebuilding, all while living alone out of a motel room. It wasn't long before my mom got another call, this time that my father had had a heart attack. He needed a triple by-pass. My mom headed home to be with my father, and Jörg came to Chicago as often as he could. His amazing colleagues at the university helped him cover his classes, and came to feed our cats.

Meanwhile, it was clear that Annika was getting worse by the day. The doctors in Chicago encouraged us to list her at another center, as the wait times at their center were so long that they were fairly confident that she would be in the PICU before an organ would be available for her. The transplant center in Omaha, Nebraska, had considerably lower average wait times, so we decided to go there (I should note that the system for organ allocation has since changed, and organs are no longer given based solely on wait time on the list, but instead according to sickness of the patient determined by certain lab values). However, every time we had an appointment set up to get her evaluated and listed in Omaha, Annika would have another setback and the doctors did not feel comfortable releasing her, even just to drive straight to Omaha. Finally, they decided to send her by ambulance, and our insurance, amazingly, agreed to foot the bill. This was her fourth trip in an ambulance, and neither of us was looking forward to it. An ambulance has to be the most uncomfortable mode of transport ever invented.

Finally listed in Omaha and Chicago, we headed back to Chicago to wait again. There still was no clear reason for Annika's fevers, which came daily and often reached 105 before subsiding, but Chicago had finally had some luck in catching some bacteria in her blood stream to culture. This, at least, gave them more information about what they were dealing with, even if they did not know exactly where the bacteria were living. The suspicion was that they were probably somewhere around the bile drains that had been placed to empty the bile lakes. However, they worried that pulling the drains might end up making things worse for her, and so they stayed in. The bacteria, there were 3 that they had managed to identify with cultures, were very mean creatures--resistant to most antibiotics. So Anni had been placed in isolation, meaning that she was not allowed to leave the confines of her small room, even to walk the hallways in my arms. She was added to the rounds of the Infectious Disease doctors, who made clucking noises about making sure that the VRE (the meanest of all her bugs) did not leave the room. She began to receive antibiotics that had to be signed for specially by the higher powers before the pharmacy would dispense them. They were not the kind of drugs that have been tested for side effects in children, but they kept the bacteria in check for a while, at least. She developed drug allergies. She stopped interacting with us. Her labs were deteriorating at an alarming clip, and she began to sleep most of the time. When she did wake, she would scream and scream until I gave her breast to nurse on. At nearly 1-yr-old, she was still nursing every 2 hours, even through the night. It was clear that she needed to be transplanted soon. The surgeons in Chicago agreed that a living donor surgery would be very risky for her, but it was also clear that her liver was not lasting, and her infections were becoming scarily drug-resistant. My Aunt Jane came to Chicago to be tested, but the doctors quickly disqualified her when they discovered she had had her gall bladder removed some years ago, leaving significant scarring. Next, my cousin Eric volunteered to be tested. All tests were looking good for him to be a donor, but they decided to do an arteriogram to make sure his blood vessels would work for the transplant. Anni has had several of these procedures done, and we thought it would be routine, but Eric suffered an unusual complication (machine malfunction, it was thought) and had to have emergency surgery to restore blood flow to his lower body. He was disqualified as a donor for at least several weeks.

At some point around this time, Annika began to refuse to sleep anywhere but in my arms, preferably right next to my bare skin. When I would try to lay her down in her crib, she would begin to scream in that terrible high-pitched scream she had developed. The nurses found me extra pillows and I used medical tape to secure 6 of them to the seat, back, and armrests of the wooden rocker I had in Anni's room. From then on, I spent almost every hour of the day in that rocker, holding Anni. I slept there (holding her) and ate there (holding her). Jörg brought me food from the cafeteria so I wouldn't have to put her down. The only time I left was to go grab the occasional necessary shower. I remember handing Annika off to my mom while Anni slept. To avoid waking her, my mom stood and rocked her back and forth while my Aunt Pat (Eric's mom) leaned in close to Anni and rocked back and forth with my mom, singing "Tell Me Why" to her. Annika was completely enveloped by such love and such tender effort to avoid her waking terrors that she often slept on, allowing me to go take a shower without the guilt of leaving her. Remembering this scene, I am amazed at how much love was concentrated on our little baby.

Still, I have to confess that I was losing it a little bit. I was beginning to panic. It was painfully obvious that she was in serious trouble. The nurses had begun to monitor her breathing and the amount of oxygen in her bloodstream was on a steadily downward trend. The antibiotics were no longer able to keep her fevers in check, and the fact that her sleeps were becoming deeper and longer had me frantic, remembering our close call of a few months before. I knew that bringing her back this time would not be as simple as giving her some sodium to perk her up. Somehow, all of this was bringing out my inner bitch with a vengeance. My mother, who had been nothing but kindness, generosity, and a huge life-saving help to us, took the brunt of my rudeness. When my sister, who had also come up to Chicago for the transplant, suggested that I try to be a bit more sensitive, I had a huge screaming breakdown during which I screamed obscenities at the top of my lungs in the middle of the transplant family house while simultaneously crying and trying to throw everyone out of the hospital. Not my shining moment.

Then what I had feared all along happened. The doctors decided that Annika was too sick to stay on the regular floor anymore. Her breathing was so bad that she might need intubation at any moment (a tube put down your throat, which is hooked up to a machine that can breathe for you). I was not sleeping anymore. I stared at her chest for hours on end, making sure that it was still going up and down, holding the oxygen mask up to her face.

In the midst of all the drama, Eric's brother, Cliff, decided that he would like to be tested to be a donor, despite the fact that he had had some bad experiences that left him quite terrified of surgery. He was quickly tested and determined to be a great candidate. Annika had been in the PICU for 3 days, and her transplant was scheduled for the next morning with Cliff as the donor. I sat in the dark PICU, where children, but no children's voices and no sounds of children running and really just no children's sounds to be heard at all surround you. I listened to the oddly soothing sounds of ventilators puffing up and down, and watched the lights of all the machines, blinking like fireflies on a warm summer evening. And that was definitely my lowest moment. The next morning we were going to send Anni off to a surgery that the surgeon himself was not convinced would be successful, due to the problems with her portal vein. But she was bad enough off that there was simply no more time for waiting and hoping. All those long months I had made sure that I never cried in front of Annika--saving it for the shower or my meltdown over at the Kohl's house for families. But that night I just rocked her and cried and cried. I don't think she was aware of much of anything by that point anyway, which of course just made me feel worse.

Then the charge nurse came in to the room to tell me that I had a call. I don't remember her name, but I will never ever forget her face because I took one look at her expression and I just knew what that phone call was all about. And, yes, it was the hospital's procurement coordinator telling me that a donor had been found for Annika. I think maybe that the nurse expected me to scream or whoop or something, but all I felt at that moment was just peace. My tears stopped and I suddenly felt a certainty that Annika would be all right. But celebration just wasn't possible because I knew that somewhere nearby there was another family in an ER or a PICU room like the one I was in, who were now feeling a pain infinitely deeper than that I had just been feeling as I rocked and cried. And I just couldn't imagine living through that pain, but they were reaching out to save my little girl, a stranger to them. I called Jörg and he came over to sit with us while we waited for the preparations to be made. We called Cliff to give him the good news. Jörg and I sat together and talked while we took turns holding Anni, and I think he felt exactly the same way I did.

Annika was taken off to surgery just a few hours before the living donor transplant had been scheduled. I went to take a shower and sleep in a bed for the first time in weeks. I had expected the transplant to take 12 or 13 hours, but instead it lasted only a little over 8 hours. The surgeon told us that they very nearly lost her as they were trying to remove her liver. They finally found the source of her terrible infections--two huge abscesses that had been hidden behind her huge liver. And the most astounding news from the surgeon was that he discovered upon opening her up that her portal vein problem was so bad that a living donor surgery would never have worked for her, which meant that we had just been a few hours away from sending her off to a surgery that she may not have come back from.

Annika took a long time to get off the ventilator after her transplant. The fluid in her abdomen from her failing liver had pushed up into her lungs, which explained why she had had so much trouble breathing before transplant. She made some progress toward getting off the ventilator, and then they would discover that she needed to go back to surgery again and the whole process started over again. But then 12 days after transplant, she was finally extubated and from then on she showed amazing improvement.

I can't keep using the word "amazing" over and over again, but that is really the only one that can describe the next few weeks. At 14 months, just a few weeks post-transplant, Annika rolled over for the first time. She was gaining weight and sleeping well. But the most wonderful part for us was that for the first time we really got to see her personality. Not the grumpiness that comes with sickness or the sleepy baby that cannot smile or respond to your voice or the screaming banshee that comes as the failing liver leaves toxins to attack your brain, but finally the smiling baby interested in discovering the world.

We took her home just before Christmas, nearly 2 months after her transplant. But 10 days later we were back in the hospital again. Annika had suffered a clot in her hepatic artery that had killed off a small portion of her new liver. The doctors feared that the bacteria that had made Anni so sick before her transplant would colonize that necrotic tissue, and start the whole process over again. The bacteria were already so drug-resistant that the prognosis if that were to happen was not good. The surgeon recommended that she be retransplanted, immediately.

At the same time, he told us that this was pretty much the absolute worst time to try a retransplant, surgically speaking. Her abdomen would be full of adhesions from the first transplant that would be likely to stick together and bleed profusely. When a retransplant is done immediately after the first transplant, all the cuts and connections are still fresh and the new liver can be connected more easily since the healing process has not had time to start. And when a retransplant is done more than a year after the original transplant, then the site has had enough time to heal and also will not bleed as much. Despite telling us how much more difficult this second transplant would be for him, he still recommended that we go ahead and do it immediately. Remembering that he said that he almost lost her during the first transplant, we were again back to that old fear. This time, however, Annika was not a sick child that we were watching slowly die. She seemed healthy, and most definitely happy. It was hard to grasp that we really needed to send her off again, this time to a surgery even more dangerous than the first.

Cliff again agreed to donate a portion of his liver, and got a flight back to Chicago. Annika could receive a liver from a living donor with no problem this time because her original donor had provided her with a new portal vein that could be used for this transplant. Jörg's mom agreed to come help me in the hospital after the transplant (my mom was at home helping my father recover from his bypass surgery). So we scheduled the surgery for three weeks later, and again Annika needed to stay in the hospital to wait until transplant.

This surgery was much longer than the first. They used a donated vessel taken from Cliff's leg to replace her clotted hepatic artery, but that vessel clotted again as they put in Cliff's donated section of liver, and they spent several hours trying to get blood flow back. We sat in the lobby nervously waiting and wondering why they weren't calling with the usual hourly update.

Finally they wheeled her out to the PICU, with good blood flow to her new liver. That night she was not looking good. She needed constant blood transfusions, her blood pressure was dangerously low, and doctors came running in and out of the room, holding conferences right outside her door. They took her back in to surgery that day, and quickly discovered that she was bleeding into her abdomen. A quick fix, and she was back. Getting off the ventilator took only 5 days this time, much to our relief.

Her recovery was going even more quickly than after her first transplant, thanks to the fact that she went into this transplant with a liver that was still working. We thought we were definitely going to be home in record time, but then the viruses hit.

Annika had bled quite a bit during this second transplant, as anticipated, and then her bleeding after transplant had required more transfusions. Maybe this was the reason that she got hit with so many viruses all at once. When they ran a viral panel to try to figure out why she was so sick, she tested positive for 4. So we were forced to ride out that viral storm in Chicago for several more weeks. Soon after that Annika experienced her first bout of rejection, which required several more weeks of treatment.

Although I lived in a hospital for nearly 10 months with Annika, I really think that this time was much harder on Jörg. I got to focus all my attention on Annika and getting through this with her. But Jörg had to divide his attention between work and all of Annika's issues. Although he was in Chicago with us as much as possible, he still needed to keep teaching to support us financially, and to make sure that we kept our insurance coverage. And he knew he needed to do a good job to make sure that he was able to keep his job so that we wouldn't lose our insurance in the future, either, knowing that Anni's post-transplant care was still going to be quite expensive. So he made the 2 1/2 -3 hour one-way drive at least 3 times a week, often getting to the hospital to find a very tired and grumpy wife. Not so much fun. One afternoon he attempted to make the drive to see us, despite the fact that he was exhausted and not feeling well. He passed out while driving and ran the car off the road. Fortunately, neither he nor the car suffered any serious damage.

Finally, in the spring of 2002, we were able to take our girl home. She started physical therapy and speech therapy to help her catch up, and she made great strides. She was walking and talking by her second birthday. Her verbal ability is now completely normal, although she does still have some delays in gross motor skills.

After Annika's second transplant, we waited for her labs to return to normal as they had after her first transplant, but it never happened. After a year, the doctors decided to try to figure out why her labs were still saying that her liver was unhappy. After running every test that they safely could, they still had no answers for us. It was decided that we would just take a "wait and see" attitude.

Shortly after her 3rd birthday, and also shortly after the birth of our second child, Annika was admitted to the hospital in Chicago in terrible shape. It did not take them long to suspect PTLD, a very dangerous post-transplant complication that can lead to a form of lymphoma. All of Annika's immunosuppressant was stopped to allow her body to fight the virus that was causing the PTLD. In the course of diagnosing her PTLD, the doctors also solved the mystery of Annika's abnormal lab values--her portal vein had again clotted, cutting off some of the blood flow to her liver. Two major post-transplant complications discovered in the space of a few days left us all, Anni included, feeling very apprehensive.

It was decided not to try to correct the portal vein thrombosis surgically, although there is a procedure, which can reroute the blood flow around the blocked portal vein. Our surgeon, though, felt that this surgery had the chance of leaving Anni worse off than she was before, so decided to wait until complications, like bleeding, would force them to try it. Once the immunosuppressant was stopped, Annika felt better almost immediately. We got to take her home within the week, coming back for CT's every other week. After a month off the immunosuppressant, though, Annika's immune system started rejecting her new liver. Because the doctors had to be careful about reintroducing the immunosuppressant so as not to aggravate the PTLD, this rejection episode took a full 3 months and 3 courses of major intravenous steroids to get under control.

Annika is now 4 years old. She started preschool this year with all the other kids her age. She does gymnastics to try to strengthen her still weak upper body. She is the friendliest kid I have ever seen. She shares her toys with her baby sister, and can't wait to teach her everything that she knows. Her laugh makes other people laugh along with her, coming as it does from the pure joy she feels at the smallest little things. She says, "I love you, Mommy" at least once every single day, and it makes my day every single time.

She is just our beautiful, sweet little bundle of goofiness, but she is also our constant reminder of how lucky we are to be living life together, and a testament to the kindness and generosity that human beings can show to one another. We can never express the gratitude we feel to Annika's two donors, or for the wonderful care given her by so many doctors and nurses. I send them pictures, hoping that just knowing that they have played a part in keeping that smile in the world keeps them going.

Annika on her first birthday, spent in the hospital. She cried when the nurses sang happy birthday	Annika, shortly after her first transplant	Annika with Cliff