Monday, August 22, 2011

Last Week Doctors Visit

I have been meaning to write but life is so crazy busy that I havent had time. With school starting and my two oldest starting school and then to have Aubree have her own schedule on top of Nelson and my school schedule. We just started today so it should be just crazy from now till December! Aubree is doing good, they took her off of her antibiotic and her anti fungal last week. They are also allowing us to try an oral magnesium, and if all goes well then she will be IV free, and could get her line out. But I am not sure how likely that is going to be. She is getting major diariha from the magnesium, so my guess is they will put her back on the IV mag. But they also started her ween on her rejection drug. They did a pretty big drop and are having her taking it only two times a day instead of three! I am loving not having to get up at 6 am to give it to her. They did this because her kidneys are having a hard time and she has very high potassium levels in her blood. They hope with taking her dose down that her kidneys will do better, I am not sure what they will do if they are still having a hard time this week. I have nightmares of her kidneys failing and then we having to decided if Nelson would give her a kidney. We already now he's a perfect match from the last donation he made to save her life. I am just crossing my fingers that her levels go down and all is good!
My emotions are always just right under the surface and are always there and I seem to cry all the time at anything. I always cry when reading others blogs, I cried when I read about my friend receiving a bed! But my heart is broken today as I heard the news of another child loosing her battle. I was talking to my mom today and she asked what was going on and told her I couldn't read his blog because it is to hard. It is such a reality and a possibility for me. But my thoughts are with this family. I met them only once and their story has touched me. The parents were married at Primary Childrens so that their son could attend and he was inpatient. She is pregnant and he will never meet his sister. He had only weeks to live after finding out on a routine MRI that he had relapsed. He was 7, and he was loved!

Sunday, August 14, 2011

Test Results

We went in on Wednesday to find out what they found with the bone marrow biopsy! They found nothing!!! We are so excited that they found no trace of the Leukemia anywhere. They also said that all her bone marrow is Nelson's still. So we are going to keep going with the course that was set. She will start her ween of the rejection drug next week and hopefully come off a couple of other drugs. We found that she takes her milk best from a syringe, instead of a bottle or sippy. I am still needing to get more fluids in her and that is what we are going to work on this week. So fingers crossed she wont be dehydrated when we take her in this week for her appointment!

Friday, August 5, 2011

Dr's Visit

We took Aubree in yesterday for her Dr's Visit and her bone marrow biopsy. There were a few really important things that happened. First, we found out that in her blood work last week they saw some blasts. They weren't Leukemia, but they werent supposed to be there and that is what triggered the events of taking her off her steroids and the bone marrow biopsy yesterday. I have always wondered if doing the bone marrow transplant was the right thing to do because it has been so rough on everyone involved. But with everything that has been happening it confirmed in my mind that yes it was right, that she would have relapsed if we didnt and she would have relapsed soon after the chemo was stopped. So we will see what the tests show from yesterday to see where we go from here. There are several things that could happen, but we will deal with them as they come.
The second big thing yesterday was that Aubree gained two pounds in a week! That means that she is eating way more calories than I have been thinking. So after talking to the Doctors we decided to pull her NG tube out and see how she does. She has never been allowed to truly be hungry and have that relationship with food that we all have. (She has it with her little red backpack that houses her feeding pump!) When she woke up yesterday from her Anastasia, she was so mad because she was really hungry. I showed her a bag of Doritos, her favorite and she stopped crying and started eating them. She was hungry! This morning she woke up at 6 am hungry and drank two ounces of milk. She has never drank that much at one time before. So I really think it will work. As the days go on she will be able to drink just a little more and eat a little more and she will be ok without her tube! I cant believe that its coming more to a close! I thought this day would never come! It has been such a long road with her eating. Now if only we can get her to have normal blood tests and get her central line out. That will be the day!