Good News

We got some really good news at the Doctors this week. They are going to schedule to have Aubree's central line taken out! YEA, I am so excited because she really needs a bath more than once a week, and she can get wet without me freaking out and its one more thing to being normalish again! She is doing so good. She is eating like a champ, being weened off her rejection drug and only on two other medications. So we are so happy with her progress. It has been such a long road and its nice to be able to just feel like we have a toddler not a sick child.

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!

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!

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!

A phone call.....

We got a phone call from the Doctors yesterday. I didnt get the phone so they left a message. This is nothing abnormal, Aubree was seen in clinic on Tuesday and they are always adjusting her rejection drug level. When I listened to the message I started to get worried, all they said was to call them back.
I got a call from them today and was told that we needed to stop her steroid, she still had one week left on it. We were also told that her rejection drug level was low but they wanted it to stay there. They want all this because they want to retest her bone marrow. Her last biopsy showed some questionable cells and they want to see what will happen when they take her off some of these medications that are suppressing her immune system. The hope is that Nelson's bone marrow will take care of all these questionable cells and she will get a clean bill of health.
Its a little unnerving because when we talked to them about the results they said if they were worried they would push her to get off her drugs a little faster, isnt that what they are doing now? So we are hope that her tests will come back clean this next time and we wont have anything to worry about!

Hairy Aubree

This is Aubree now, just a few days ago I took this picture.

Here is what I think if whenever I think of Aubree. My sweet bald little girl. This picture was taken maybe 3 months ago. So it's hard to believe how much hair she now has. The rejection drug that she is taking is making her hairy! Since she is a baby she is even more hairy than most. These pictures of her hairy back just crack me up. I did spear her the embarrassment of having a picture of her butt, its just as hairy. I'm not sure if its the chemo or the rejection drug that has made her skin darker. But she really is another little girl now. She looks so different.

Cure Search 2011

Aubree with her face painting

Nelson as a tiger.

Rachel and Me with Mikhael and Aubree. We went through treatment together.

Releasing the white balloons for those children who did not make it. A very sweet moment.

On stage with other children who have had cancer.

Our shirts that we made

The back of your shirt if you were a girl.

Our friend Erin, she was in treatment with AML when Aubree was diagnosed.

Our team minus a few people who got lost in the crowd.

Our friend Liz who took many of these pictures for me. Her son Jacob is in the middle of treatment with AML. Her son was at the hospital that day. Jacob has Monosomy 7 like Aubree and will receive a bone marrow transplant from his 3 year old brother. This family is inspiring!

Rachael Steele, her room was right next door to ours when Aubree was diagnosed. She was going through her bone marrow transplant and so we always had the same nurses. We were able to watch her fight, and it gave us hope.

We were able to participate in the first Cure Search Walk held here in Salt Lake City. I am so glad that I decided to make a team and go. It was such a special experience for me. First we were able to watch as people so generously gave to our cause. I was so touched by my cousin who with in a couple of hours of my first post signed up and donated money besides just paying her walk fee. A week before the walk I noticed that she has raised more money. I later found out that her children had lemonade stands and gave the money they earned to the walk. I am so touched by her love and involvement in Aubree's cause. Her whole family is amazing. There were so many other people who gave and then came out and supported us. Thank you all for doing this!

The day of the walk was fun, we were able to see so many people that we love. I was able to see one of my friends who's son lost his fight. I have not seen her since before who son passed, and it was so touching to see that she came up with the courage to come so soon after. It was so good to see her, and I love you.

There were so many people there, they had over 1400 walkers. The walk was only 1.5 miles but it was a very slow pace because of all the people. I will continue to do this every year that I can. Because of what Aubree went through I know there needs to be more research done and improvement to treatments for these kids!