Wednesday, June 29, 2011

100 day test results

Today was a busy day. Aubree had a CT scan as a follow up this morning for when she had lung nodules back in December. We then went to clinic and met with the Doctors to find out what her test results showed from last week.
For the most part they were all good. Her bone marrow showed that it was all Nelsons! YEA! Her blood under the microscope was clear of the Leukemia. They also did an even more sensitive test and that showed 0.02% that might be blasts. Since she is on her rejection drug and the steroids they are not sure if they are AML cells or not. They will probably repeat the test later on when she is off her rejection drug for a couple of months to see if these increase and if they can tell for sure what they are. She will not be off her rejection drug for another 4 months though so no use in stewing over the .02. They arent worried enough to try to hurry and get her off of her drugs to see so that is good.
The other thing that we found out is that she will probably be on her rejection drugs for at least another 4 months. That means no problems at all, and that just hasnt been the case for us, so probably longer. She will need her central line till she is off them also, because her body isnt very effective in absorbing magnesium because of the rejection drug, so she gets magnesium every night through her line.
They did start her taper again on her steroids so that is good. Also her red blood counts are normal and her hemoglobin is in normal range finally. We are still waiting for the platelets to be in normal range but they seem to go up every week. Her white count is "normal" but its not really, the steroids kind of screw it up and make it look high when its not. So that is all really good news!
We are so excited that she is doing so good. We are so happy with her results, and kind of bumbed that she has to have another bone marrow biopsy later, but we will take all the good news that we can get!

Wednesday, June 22, 2011

100 days!

Aubree went in for her 100 day bone marrow biopsy yesterday. Her 100 day mark was officially June 18th. The will be looking at her bone marrow and seeing how much is her's and how much is Nelsons. We hope that all of it is Nelson's since Aubree's marrow makes leukemia. We will find out the results next week when we meet with the doctors unless its bad new then we will here before. So lets hope to hear on Wednesday.
She is doing really good at home. She gets into everything around here. She is right on track for her age. Opening cupboards and pulling everything out, putting everything in her mouth. She keeps us busy. We are concentrated on getting her walking so that her hands arent all over the dirty floor. She still is not eating at all, she was drinking out of a sippy for a couple of days but that excitement as worn off and she is back to getting most everything through her feeding tube. It could be a very long road before she eats again, she just is not interested at all. But talking to people who have gone through chemo say that it messes with your taste buds and nothing sounds or tastes good and it takes awhile to wear off. So maybe when that does things will start to taste good and she will want more.
I was reading somewhere about childhood cancer statistics and here are some. 35 children per DAY are diagnosed with cancer, 1 out of 4 will not survive, 4 out of 5 that do survive will experience late effects from their treatment. Its hard to believe that on the same day that Aubree was diagnosed that 34 other families went through it with us. That was a horrible day for us, but so many others had a horrible day with that news also. If you look at my blog list I have I think 6 blogs linked there, two of those Angles did not make it, this is why I want to start to contribute to the fight to get help with research. There are things that can be done, and people are trying to find a cure, or just better treatment with better odds. But they need money to do it. This is why I am walking on July 9th with Curesearch. That organization gives 95% of what they make to the research of childhood cancer! Please join or donate to team Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight

Thursday, June 9, 2011

Erin

video

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

Wednesday, June 8, 2011

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.
video

Sunday, June 5, 2011

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!

Friday, June 3, 2011

Cure Search




video




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.

Wednesday, June 1, 2011

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.