1 Year

It is hard to believe that it has been one year since we started our journey. One year ago today, Aubree was in emergency surgery getting a central line placed on a holiday, and it was Sunday. Yesterday was her one year mark of when she was diagnosed. Its bitter sweet to remember, but how much easier this time is because she is here with us and almost done with treatment all together. We have about 3 more months of medications to give, we have doctor appointments once every 4 weeks. We almost feel normal again. We are excited to be able to go trick -or-treating this year, my children are so excited! Aubree loves candy and loves getting candy in her pumpkin. It is going to be a great day!

Update

Aubree is doing so good, the Doctors even moved her weekly visits to every three weeks! Its nice not to have to go every week. She also has only 5 more weeks left on her rejection drug and then her immune system can try to get back to normal and then we can get back to being more normal. But our life is really getting back to normal, Aubree can go outside and play and she loves it. She is walking now and so she is every where! A couple of weeks ago she decided to follow Nelson to the bathroom, but he didnt want her in there with him, so he slammed the door, never a good thing! It cut into her finger, so we got to go and visit the ER. I was at my friends house without Nelson, and so she watched Nelson and Aundrea while one of her friends rushed me and Aubree over to Primaries. We stayed there most of the night, but we didnt have to stay over! Her thumb looks really good now, she may get a nail back someday, but she can use it. It was a weird knowledge to know that the blood that was coming out of her fingers was Nelson's. The body is amazing! Aubree is amazing, she wasnt given any pain medication for her thumb for over 4 hours, and during that time she did so good, she would even laugh at me sometimes! She also had to get an IV in the other had so she couldnt use either of them for awhile, but they had to give her a big dose of IV antibiotics right away so she didnt get a huge infection. Here is a video of her after it was all done and she was just feeling good, I just laugh at her every time I see her so "high".

Finally, Aubree can have a BATH!

Here is Aubree yesterday as we were waiting to get her central line out. Yes, she got it out yesterday! We got a phone call on Tuesday from surgery wanting to know Aubree's medical history. Someone from the bone marrow team forgot to call us and let us know that she was going to have it taken out yesterday. I didnt care as long as she was getting it out! She also went to every two week appointments. We are so excited about that also. She is moving up and getting so much better.
I found this picture of the first time she had her line replaced and I couldnt believe the difference! It was a week after she got out of the hospital for her transplant at end of May, so a little over 4 months ago. It was before she was diagnosed with Graft vs Host and I remember checking in for this and having her throw up while I signed papers for the surgery. I had her on my lap holding the emasis basin with one hand up to her mouth and the other hand with a pen signing the papers. The girl checking her in was so impressed that I was doing it all. She looks so sick here, I cant believe that I never saw how sick she was while she was so sick! I am just so thankful that she is so much better and it happened so quickly!

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!