A Little Explanation

I want to take a minute to explain what remission is. I have gotten a couple of calls and comments that made me realize I didn't explain it very well. I think we have all heard remission, it is the big Cancer Word that everyone wants to hear. It is a very important thing to be in remission and very good news to be there, but it just a stepping stone in someones fight against cancer. It unforunately does not mean cured. Remission just means that we have been able to kill almost all the cancer with in her. There has to be less than 5% to be considered in remission. Then once you are in remission you have to continue to fight off the cancer that continues to try to grow and take over again so that you don't have "relapse". If the cancer grows and takes over more then 5% then she will be considered in relapse. I have had several people want to know when we would go home and unfortunately that is still a long time off. She is still very sick.
We did finally get insurance approval today to have our other kids tested as possible bone marrow transplant matches for Avarie. They are going to be tested on Monday. They just have to have a little syringe of blood drawn. They are also going to type Craig and I, but really there is very little chance of one of us being a match. When they are testing for a match they are looking at the genetic makeup of the marrow, not just the blood type. Avarie is part me and part Craig and so there for our kids would be the best match for her because they are also part me and part Craig. The chances of finding a match outside of a full sibling is not very good, but it does happen occasionally. That is why they have a bone marrow registry. I heard a story about a dad that was typed for her son here in the NW but didn't match his son, but did match a little girl in Ireland and so he was flown there by her family and donated for her.
We want to do the transplant if we can because right now, even though she is in remission, she only has a 70% chance of survival. It use to be 95% when she was first diagnosed but because she didn't respond to treatment and had to be moved in to the extremely high risk category it dropped her survival rate to 70%. With the bone marrow transplant her chance of survival goes up to 80%. We want to give her every opportunity for survival. There are a lot of scary possibilities with the transplant but she could be cured from leukemia in maybe 6 months vs the 3 1/2 years of chemo before she is considered cured.
We have gotten back some of the pathology results on the biopsies Avarie just had this week on her kidneys and a couple of other nodules. The other nodules they biopsied last week did not give us anything except to show inflamation of the veins. The biopsies from this week have come back showing fungal infection. They said it looks like mold. They don't know what kind of mold it is yet. It will take about a week to finish growing the samples, but they are pretty sure it is some form of mold. Some molds are easier to treat then others so we will need to know for sure what kind it is, but for now they can change up her meds to start treating specifically for mold.
Avarie has been feeling pretty yukky the last 2 days. We had to stop her feeds that she was getting through her veins. She is getting too many meds between all of her chemo and antibiotics and fluids needed to flush the chemo that her body just can not handle more fluid going in to her veins. So we started the NG tube again, thats the tube that feeds her through her nose to her stomach, she has only been getting a tiny bit only about 10% of the nutrition and calories that she needs for the day through her nose feeds. Thats all she can tolerate. Even then she is not tolerating that well. She keeps getting sick and throwing up. Between the chemo, the fevers and her body trying to digest food again it is just all a little much for her system to tolerate. So she has been sleeping alot. She also had to have a blood transfusion today because her red blood cell count got down really low, but she had to wait until tonight to get it because she has had too many meds going. She didn't have a free IV line to put it in. She has so many tubes going in her right now and they are talking about trying to put another one in, but they just don't know where. They are hoping that since they have some answers on the infections that they will be able to cut back on a few meds and so they may not need it, but it is being discussed as a possibility right now.
We are excited for a Christmas Party here at the hospital on Saturday morning. Santa is coming and I have heard that he rides in on a train. Avarie is excited to see Santa. Well as excited as she can be. She stares right at me as I talk about him, I can tell she is really interested in hearing about him. A friend has a friend that dresses up as different characters and visits kids in the hospitals. He is going to come visit Avarie dressed as Santa. I think she will like it. I worry that she will just make her grumpy moany noise at him, but I am hoping that he will understand if she does. She just isn't happy about much. We got her smiling last weekend for a couple of days we got her to smile several times, but that has stopped. She is just not feeling good right now. I think next week as long as the infections don't get bad again or new ones pop up she will be doing much better and may even start smiling again. We are nervous what will happen this next week when her immune system is gone again, but we are hopeful that we can keep stuff under control through it with the right drugs now that we have some answers, we just hope that nothing new pops up.