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!
Thursday, July 28, 2011
Sunday, July 17, 2011
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!
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!
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
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
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!
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