Thursday, July 28, 2011

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!

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!