Saturday, 30 June 2012
Thursday, 28 June 2012
When I was a little girl I loved 7 Brides for 7 Brothers and I watched it with her today. She giggled the whole way through. She loved it when the girls were tricking the boys and dumping water on their heads, but her favorite part seemed to be the dance scene when they are fighting over the girls before the barn raising. It was always one of my favorite movies and it made me giddy to watch it with her.
She hasn't wanted anyone else to stay with her at the hospital as she wants to be with us as much as possible. Jeff (Brady's dad) offers nearly every day to come spend the night with her, but she hasn't let him during this stay. Brady talked to her about it, and she was happy to have grandpa come as long as Brady stayed until she was asleep. It will be so great to spend some time with Brady. It seems we only see each other for moments as we trade off shifts at the hospital.
Austin spent the day with his nana (Brady's mom) and he had a great time. He couldn't stop talking about the deer he saw at her house. I also came home to sparkling floors which was a wonderful surprise. Thanks mom! Cousin Sherry also called and offered to make my tutu for Millie's Princess Race on Saturday, so now I don't have to worry about that either. I am always amazed at the love everyone has for us and how willing they are to help. Honestly don't know what I would do without the support of so many people.
Another day down, and with each passing day, we feel encouraged.
ALSO, Tune into KSL tomorrow at noon. Millie's race is being featured!
Wednesday, 27 June 2012
She has been complaining a little about her throat. She says it feels weird. Our nurse thinks there are probably sores forming down it. Just because she doesn't have any in her mouth doesn't mean they can't form anywhere else in her digestive tract. I kind of had the impression that it would be mouth first and others parts later, but that's not the case. Hopeully it's nothing and her throat really does just feel weird.
Austin and I ran around all over town trying to get everything done I have to do in a week. He was great until it came time to get my hair cut. Then he decided to scream randomly and drive a motorcyle on my head. Very helpful. Tonight he is home snuggling his daddy and couldn't be happy.
Here's to another uneventful day and hopefully night.
Tuesday, 26 June 2012
Monday, 25 June 2012
Sunday, 24 June 2012
Millie was starting to feel a little ill again tonight, but now she is fast asleep and I hope dreaming about something beautiful. Although, she told Brady that sometimes dreams are sad because you may be dreaming you live on a Disney Cruise and then you wake up and you're here. She is so silly.
I can also tell the the reality of what is about to happen to her body is setting in. I had to prepare her for the fact that soon her mouth will erupt with sores as we can see them forming, and tonight before falling asleep she told me she was scared. She shouldn't have to worry about this crap and sometimes it makes me so mad. Thankfully her nurse tonight was handsome (her words, not mine) because he was able to distract her and get her giggling again. So thankful for the amazing staff here at Primary Children's Hospital. Don't know what we'd do without the love they have for my baby girl.
Let's see, as for Austin he also had a pretty good day. I'm trying to remember what we did before we came to the hospital, but I honestly don't know... The days are blending. Brady did take him to his cousin's birthday party this evening and he had a blast. He loves his cousin Lincoln. They are so funny together. He also got his first haircut since we shaved it all off months ago. At first he was freaked out, but once he realized his Aunt Kim was only cutting off a little and not all of it he was fine. Apparently I traumatised the kid when I buzzed him. Sorry little man.
Pictures... I did get some today, but they are on my phone and it doesn't want to load them for some reason. Oh, the one I really was looking forward to posting was of a book Millie made for Austin today. It was the sweetest thing. It was full of all the pictures and stories of the fun things they like to do together. I'll post when I can get it working.
Saturday, 23 June 2012
In the early evening Austin and I headed out to grab some special request items from the Miss and then headed straight to the hospital. When we first got there Millie was asleep and Austin was so bummed he wasn't going to get to play with his sis. Finally we decided we'd try to wake her up since it was too early for her to go to bed for the night anyway. Brady and I were a little nervous since Millie really does not like to be woken up, but I'm so glad we did. My little bugs couldn't have been happier to see each other and it was actually the best time we have had together as a family since Millie has ever been in the hospital. Being 2, Austin can be a bit tricky around a lot of buttons and things he isn't suppose to touch. It was a great night filled with giggles, playing temple run on the iPad, snuggling, and watching Bolt.
When Austin climbed into bed with Millie he said, "I miss you", and gave her a kiss. Then he asked Brady if she was coming home. When Brady told him no, not yet, Austin said, "but I need her".
Friday, 22 June 2012
Thursday, 21 June 2012
First, let me just apologize for the length of this post. This blog has been wonderful for us. It's allowed us to communicate with friends, family, and other well-wishers so that everyone knows what is going on. It's also functioned as a family journal to record what is happening.
Wednesday, 13 June 2012
Sunday, 3 June 2012
Saturday, 2 June 2012
Dear family and friends,
We heard back from the hospital.
When she relapsed in February, it was 80% cancer blasts in her bone marrow. After the first round, it was 3.5%. After the second round, it was 1.5%. Ideally they hoped that the third round would take her to 0.001% or below. She did not quite make it there, but she did drop to 0.6% and her doctors still feel optimistic going ahead with transplant.
They can't do another round of chemo at this point. In the few days leading up to the transplant, she'll get 4 days of radiation and extremely high doses of chemotherapy she hasn't seen yet. The hope is that it will destroy any cancer left in her marrow.
They are hoping to start things ASAP. Originally, they were going to spend next week testing and admit Millie to the hospital on the 11th. They're now going to start ASAP. We'll probably be admitted mid to late next week. They have already ordered the chord blood and are beginning preparations.
The fact that her cord blood is not a perfect match increases the chances that she'll have graft versus host disease, which could cause serious complications. However, some graft versus host can be good as the new bone marrow can attack the cancer left in her body. We're hoping that if she has graft versus host that it will kill any cancer left, but that it won't cause too much long term damage.
We're trying to stay positive about this, but the reality is, it isn't the news we were hoping for. At the end of the day, what we have to remember, is that despite what the odds may be, she's not a statistic, she's an individual and a fighter. We're going to do everything we can to beat this and pray for a miracle.
Thanks for all of your love and support,
Brady, Amanda, Millie, and Austin