Saturday, February 28, 2004
Wednesday, February 25, 2004
Sunday, February 15, 2004
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!
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