Erin

Here is a video that Erin's Mom made for Cure Search. If you look to the side her blog is on the my blog list as Little Air Bear. She was diagnosed the same day that Aubree was born. We were in treatment at the same time. Erin is in remission, but her family still lives with the fear of relapse. If we could find a cure for childhood cancer then families wouldnt have to go through this!

Aubrees Birthday Cake

Aubree's First Birthday

Aubree was still in the hospital when her birthday rolled around. We thought for sure that she would be out. It was very uneventful for her because she went into surgery that morning so the rest of the day she was sleeping of the effects of the drugs. I felt so bad because the staff kept checking on her to sing her happy birthday and to give her some presents, but she was always sleeping. Finally at 6 pm she woke up and we were able to give her a present and have cake. The staff rounded up as many people as they could to come and sing, it wasnt what we wanted but I was so glad that we were able to celebrate her first birthday.

One reason I like going to clinic is that you get to meet so many different people. Yesterday I had to run Aubree up to clinic because she was bleeding from her entry site on her central line. It wasnt a lot but they changed the bandage to one that would soak up the blood from the plastic one that she had. When I was waiting to check in I was able to talk to a mom who had a daughter who was 2 years old. Her daughter did have cancer but had SCID, the bubble boy disease. The way to "cure" that is to have a bone marrow transplant. Her daughter was around the same age as Aubree was when she had her transplant. I asked her about eating (that being my biggest frustaration) and she said that her daughter still has a hard time eating over a year later. In fact they had an NG tube for a year feeding her at night through it! It is good to know what to really expect, and granted every child is different but with Aubree not really eating anything but cheetos I think we are really in for a long hard battle. To think about it makes me so tired. I am so ready to be done, have her better, but I just dont think that its going to be that way.

CureSearch

Here is a video of Children HERE in Salt Lake City who are going through treatment at this time. Help us find a cure. Come walk on July 9th at Liberty Park. If you cant come then help us by donating any amount, Or become a virtual walker. Join team Aubree. http://curesearchwalk.org/saltlakecity/aubreesfight

Home

Aubree came home last night. She was able to get her new central line and did very well. We were worried about pain but we relieved when it turned out to be her sedation hadnt worn off completely yet, so the Doc's felt good about sending her home. It is so nice to be home and to be able to sleep in our own beds. Aubree also started eating a little. I can usually get her to eat 2 out of 3 meals. She still doesnt eat enough at each meal but I am ok with this. Its huge that she is just wanting to eat at all. She will be on anit-biotics for 2 weeks, so we dont think that she will get sick while she is on that, so we have two weeks at home at least. We hope she doesnt get sick at all anymore, but with still being on steriods there is the possibility. So we will enjoy the time we have here while we are here!

Cure Search

Cure Search is having a walk July 9th, they give 100% to childhood cancer research. Please join Aubree's team and we do not want children to go through what she has. Remeber that this vidoe was made before her transplant. There are many more months of pain that she has gone through since. Please help, donate anything. Be a virtual walker if you cant come, support Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight

Update:

Aubree's blood cultures came back with no more bacteria in it. Taking out the line was what needed to happen. She will get her THIRD central line tomorrow. I am not sure when she will be able to come home but hopefully soon.

No central line

Aubree had her central line taken out today. They were very nice to take her at noon instead of 8 pm tonight. I was not looking forward to having a starving child today, and I was kind of sad that she wouldnt be able to dig into a cake, but now she can. Getting her central line out isnt so bad if she doesnt need it anymore. Her line goes into her chest into a major vein right into her heart. The tip of it ends about 3 inches from her heart. This makes giving medications more efficient because it goes right to all of her body at once. Also its a double lumen meaning there are two spots to put medications into that are not compatible with each other. If you get two drugs together that shouldnt be the drugs the drugs could solidify in her line. (one example) This makes things much easier when giving her many medications at once. When she was going through transplant they almost needed three entry points into her body because of everything that she was getting at one time.

The bad thing about her getting it out is that she still needs it. You can draw blood out of the central line. This means that Aubree does not have to be poked a couple times a day for her labs on her blood. You can not draw blood out of an IV. This means that for the next couple of days Aubree will be poked multiple time a day. That means more pain for her, not to mention the pain from the IV in her foot, and the extra pain that she is having due to the infection in her body. One so small should NEVER have to go through this much pain. I always feel so bad when I have to rip the badage off her face to put a new one on for the NG tube, her face is so hairy right I can only imagine how painful it is.

She can not go with out a central line which means another one will have to be placed in the next couple of days. This means another surgery, that will have the surgeons cutting into another vein close to her heart. Plus more anesthesia. Every time you get put to sleep there are risks involved. This time when she woke up she was breathing fast and they had to do more than usual to make sure that she was breathing ok. What that was I dont know, I didnt ask not wanting to know what they had to do. I know that wasnt the best choice but I can only process so much.

The worst is that she is getting all this done on her birthday. I know she is only 1 and wont remember all of this but its a day that we should be celebrating her birth not having to do procedures to save her life. If we kept the line in the bacteria would have just kept infecting her growing resistant to the antibiotics, making it hard to clear her of the infection. My hope is that tomorrow the blood that they take will not have bacteria in it still, and that we can go home soon.