Doing better

Aubree is doing much better today. She started to play a little and she is eating a little. The antibiotics are kicking in and she should be feeling completely better here in a couple of days. So we are waiting for her numbers to go up and then we can go home. After talking to people about Aubree's situation, I know realize just how bad it was. The Dr kept saying to me, the cultures grew in just 6 hours??. She asked me this a couple of times. I talked to a nurse about this and they said that it usually takes a couple of days for cultures to grow. Also I didn't realize it, since I was delirious from not having any sleep, but she went down hill with in only an hour or two. This was probably because of the fast growing bacteria. I am so grateful for the nurses that we had that night. We had a nurse from the surgical floor who did an amazing job taking care of her, even though she doesn't usually take care of these type of patients. Also our charge nurse did an excellent job on getting the help that was needed that morning. I know this is weird but I am really grateful that PICU was full that morning and so they couldn't send us down for a couple of hours. Because of this they were able to stabilize her in ICS. It worried me to be in PICU because there are so many sick kids there that could have got Aubree sick. I am thankful that we are at a hospital with such excellent nurses and Dr!!

Fever

The night before last Aubree came down with a fever. It was quick and wicked. About 9:30 pm I noticed she felt warm, but it wasnt a "real" fever, but it still worried me. By 10:15 she had a fever and blood cultures were drawn. It is standard to draw blood cultures with fevers with children like Aubree. She got worse as the night went by. At 7 AM our room was a zoo, she had so many medical personal in there. They decided to call the rapid response team from the picu (pedeatric icu) to come and evaluate her to see if she needed to be transfered. We also had the oncology docs there checking things out and about 4 nursed doing different things and answering questions that came up. Her condition was, she had wide spread blood pressures, like 120/30. She also had a pulse of 225, normal for her is 130. Also they could not get her fever to come down and she sat in my lap wimpering and shivering. I felt so bad for her, but they were able to give her fluids, but they gave her a lot of fluids, it was something like 60 ounces in like an hour, it was some crazy amount, they gave her more fluids than they usually allow on the ICS floor, but that is what she needed. They were able to keep her stable up on the ICS floor, but all day it was talk about how she was on the line and if she got worse she would be sent to PICU. Today we are still on the ICS floor and I am so gratefull that we are. She still has fevers but a second blood culture that was drawn 12 hours after the first showed that there was no more bacteria in her blood. They got on it way fast and were able to help her little body fight it off. Now its just time till she gets better. She is on the up and up.

Some thoughts

This round of chemo has been very difficult for me. Nelson and I had some questions about the bone marrow transplant and so against my better judgment I went out looking for the answer. In the process I came upon blog after blog of children who have passed. This consumed all my time and thoughts. I started looking at Aubree as if she had no chance at all. This weighed heavily on my heart, and if you can imagine it made time up here very rough. I dont know why, I didnt even know these people, and every case really is its own despite what the stats are. I am doing much better, Nelson gave me a priesthood blessing and I am doing so much better, in fact I have done a 180 and I know look to the future with Aubree, I know that she will make it. But my heart hurts tonight as I read a blog of a patient that I do know. She was the family that I watched as her sister gave her bone marrow to save her sister. I talked to her mother about the procedure as I myself was going to have to do the same thing. I do not know what has since happened with this family, but my heart goes out to them. I am so thankful for the love of our Heavenly Father and all that he does for us. I am so grateful for priesthood blessings that make going through this so much easier. I am thankful for the peace that the spirit brings, for the spirit that is here in this hospital. I am just so thankful for the love of everyone around me, and the support that is given to me on a daily basis by wonderful parents and siblings. I one day wish to be with them in eternity. I have learned how fragile life is, and at any time it can be ripped from us. For this reason I am grateful that I have the beliefs that I do, that no matter what happens, I will be a forever family.

www.prayforari.blogspot.com

At 0 FINALLY

Aubree in her activity center playing with her favorite toy, a syringe!

Aubree's ANC today has finally dropped to 0. It seemed that it took forever, and I wasnt sure it was going to happen. It may not be a bad thing because she is suppose to start coming up soon, so her numbers may have protected her from getting to sick. She does have a little cold, but it doesnt seem to be getting worse and we hope it stays that way. The bone marrow doc's came by today finally and that was good, I was able to get some answers to my questions. But it seems that when her numbers are at 500 they want to start the chemo for transplant 2 weeks after. They dont want to go much after that so it seems that we will be really busy with tests for both Nelson and Aubree along with teaching for Nelson and me. I think we will have a week at home with nothing I hope but it sounds like we will be busy with stuff during our break.

Doing good

We are still at the hospital. Aubree finished her chemo on Tuesday and so we are just hanging out. We are waiting for her numbers to fall so that they can come back up. Today she was at 300 down from 500 yesterday. So probably by Monday she will be at 0. Her platelets are also at 11, and so they will give her a transfusion on Monday of those. They wait till they are in the single digits to do it. We just have to be careful to not let her hit her head really hard. So we are doing really good, she is eating like a champ and I am really trying to fatten her up so if she gets sick she doesn't loose weight. I put cheese and gravy on everything! Well not everything but I really try to put high calorie foods in with what she eats.

Here are some pictures of Aubree getting her CT scan done last week.

Almost Done

Aubree is almost done with this round of chemo. She has one dose left at 6 am and then she is done. It was a short round but it seems to have been hard on her. She is more nauseated this time, and her energy is gone. Today she would be awake for 15 to 30 minutes and then have to take nap. Some of the problem is that she is in need of blood. She will get it in the morning after her chemo. I am surprised that her numbers dropped so fast this time, she still an ANC of 1100 and her platelets are still pretty high. But they have all dropped a ton since they ran tests the first day. I dont know why but this round of chemo seems to be so much harder for me. I keep thinking about the bone marrow transplant and all that will come with that. I am very hopeful that it will work and it will be the end of the road for us with treatment. But I have been reading a lot of blogs lately and I dont know if I am reading only the blogs of people that havent survived or if not a lot of people do survive from this diagnosis. I know that its not about numbers, but its more about if Aubree's time is up here, or if she has more things that need to be done. I try not to think about these things but at times you cant help but think about them. I cant talk to people about it either, its hard to try to find the words to express yourself when these thoughts are running through your head. I just pray that Aubree will survive and that we will be able to watch her grow!

Day 2

This round is turning out to be a bit harder than I had anticipated. Aubree is having a rough time. The drug that has gone up a lot, ara-c, is really causing problems. She is getting rashes and the dreaded fevers. Well not real fevers, they go up just enough to be considered a fever and they hover there. Its so hard because of the last round and the battle we had with them. Her heart rate is also a million miles a minute. The first I noticed was yesterday and she was around 160, this morning she was around 180! Its so hard not to freak out. The Dr's are trying to figure out what is wrong but I think that the high heart rate is pain. After we figured out her dosage and she was getting enough she was able to go to sleep finally. Did I mention that she is not sleeping? Just when she gets comfortable enough to sleep, something keeps her up. She did not sleep at all yesterday, 45 minutes between two naps, and then last night she didnt sleep much either. This morning was really hard because it was flash backs to a couple of weeks ago! But we only have three more days of the chemo drug starting day 3 tonight. I hope that we figure out what is going on so that she is more comfortable and we can make it through this round with my nerves in tack!