Saturday, January 29, 2011

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.



Monday, January 24, 2011

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!

Saturday, January 22, 2011

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!

Friday, January 21, 2011

Round 3

We are back at the hospital! Aubree feels like she is home. I loved being home and it felt so good to me, but for Aubree she didnt know where she was! It was hard because she always wanted me next to her. By about the time we were ready to come back she was starting to get comfortable. This week we had a bone marrow aspirate, her lumbar puncture, and her CT scan done before coming in. All three tests came back with flying colors. It looks like we are on track to doing the bone marrow transplant after this round. This round of chemo is 5 days with two of the three drugs that she previously had. Both drugs dose has been upped, and one is 10 times as much as she got last time! She seems to be taking it all pretty good, but it doesnt seem to be the chemo part that is hard for her but the count recovery. After reading blogs of older kids and seeing how the feel when there numbers are low, I can see why this would be the hardest part for her. It was hard to come back but we are happy to be here and gettting it done!

Sunday, January 9, 2011

We are home!!

We are home!! We came home yesterday and man does it feel good! Aubree and I got almost a full nights sleep with out any interruptions! Aubree went in for her CT scan on Sunday and it came back very good. The nodules were gone or almost gone. So they decided that there was no need for the biopsy. Also they took her off her medications and her fevers went away. So with no biopsy and no fevers they let us go. The only thing that was kind of keeping us there is Aubree is still very nauseated and is having a hard time eating. I think she is also a little confused. With all the tests that she has, she cant eat before any of them. She gets hungry and we wont feed her so she goes to sleep. I can see her doing that here. So I need to work with her on that. But I don't care because we are HOME! We go back a week from Wednesday and I am not looking forward to it, but I will enjoy being home for now!

Friday, January 7, 2011

Fevers Still

So Aubree still has fevers. We thought for sure that they were gone a couple of days ago but they came back yesterday afternoon and they are still here! We can control them with Tylenol though so that makes it easier for Aubree. She is feeling better, she was up and playing in her crib today. It was so nice to see. They think the fevers could be linked to her fast growth of cells. She shot up to 1000 for her ANC. That is high enough to start chemo again! They said they would know if it was because she would stop having fevers in 48 hours. So they should go away by Sunday.
She had an echo cardiogram done yesterday to see if there was a blood clot on the end of her line that was throwing pieces into her lungs and that was what the spots in her lungs were. But it wasnt. It was funny, the nurse came in and said ok we are ready to go down to echo, and I looked at her like, lady you got the wrong room we dont have and echo. She could tell I had no idea what was going on. No one decided to inform us of the echo. But I didnt feel as bad when I found out that the nurses had been left out of the loop also. We almost had that happen to us tomorrow, they have scheduled a follow up CT scan for her, the nurse thought the resident was coming in to tell me, but she didnt. Guess it was a good thing the nurse was looking over her shoulder when she wrote the order! So they are doing a follow up CT scan tomorrow to see what the spots in her lungs are doing. With her ANC so high her body should be attacking those spots and doing something with them. They hope to get some more insight on what is going on. If the spots are still there she will go into surgery on Monday to have a biopsy taken. This does not sound fun at all. In order to get a biopsy of her lung they have to collapse it. They will put in a breathing tube into the other lung so she is still breathing while they do it. She might be to small to use a scope so they would have to make an incision where they would be getting the biopsy and use a rib spreader to get access to the lung. I am really hoping that the spots are gone tomorrow so that we dont have to go through that. I think that would be really hard on Aubree's little body. Also that means we would stay here for a guaranteed 5 more days for recovery from that. And then it would be time for her third round of chemo. Maybe they will just keep us here and not have us go home at all!

Wednesday, January 5, 2011

Getting Better

Aubree is doing much better today. Her fevers arent so close together anymore and they arent as bad either. We are able to control them with Tylenol and ice packs and they go down pretty quick. They want to put her on a feeding tube and give her breast milk, but Mom and I are trying to get her to take a bottle so she doesnt have to go on a feeding tube. She is to weak to nurse, and so she doenst eat from me. But if she gets eating again she will get her strength back and hopefully she will start to nurse again. It means that I still have to pump and I hate it, but at least I have a hospital pump in my room and that makes it a lot easier! She went down for her CT yesterday and she did really good. They didnt have to sedate her all that much because she had a big dose of morphine right before going, but she still slept all night. Its amazing how much she sleeps. You would think this would make my life easier, but she wont sleep in her crib because she doesnt feel good, so somone has to hold her all the time. But with her getting better she should start to sleep in her crib again.
So about her tests, we will start with the good. Her blood tests show her numbers coming up. Her ANC, the magic number, was up today. It could go down agian tomorrow and then take a week to come up again. Thats what happened last time. But it shows her bone marrow working. She is also making platlets and red blood cells on her own so she wont need any more transfusions this time around. This could also be the reason her fevers are going away.
Her CT came back and it shows nodules in her lungs. They do not think they are viral or bactirial because they arent behaving that way. They do think they are fungal. They are going to do some blood tests and see if they can find out what kind of fungus it is. They can then put her on a medication to help with it. Fungal infections are very serious, the boy next door had his spleen taken out because it was so run over with fungus. I am really nervious about it, but when Aubree got sick my Dad and Nelson gave her a blessing saying that she would get better from what was wrong, and we needed to have faith. So this is what I am doing, I am looking at the positive. They found the infection before it got really bad, and hopefully they will find the right medication to treat it and get rid of it in her body. They also said that because of this, it will change how her treatment will be in the future. I am not sure how yet, I think they want more information on what is going on before they say anything.

Monday, January 3, 2011

Up and Up???

Aubree's purple foot from really bad circulation
Her red nose from allergic reactions to some of the meds

Looking out the window with Grandma


All of her pumps and meds, she has all of them going multiple times of the day


Her pumps at night, we have our own night lights
All of the lines going into her crib, they are a tangled mess most of the time.

Mom taking her turn sleeping, good thing she is still asleep while I post this!





So we thought that Aubree was on the up and up this morning. We were controlling her fever from going up with the Tylenol, and she was up and playing and feeling pretty good. So good that Mom thought about going home to spend the night. She went back to my house to help out and then she was going to go home. Before doing so she called me to see how things were going. Aubree's fever had come back and she was getting worse. I decided that she needed to come up here and help me again tonight. It was a good thing, Aubree got worse as it got later. Her fever started to spike and her resting heart rate was around 175. She wouldn't let us touch her to move her at all, she would cry out in pain at the littlest movement. It was time for oral meds, and I was waiting for them so she could get her dose of Oxycontin to help with her pain, but I couldn't move her, so I decided to give her morphine so she could take her other pain medication. HA This was a very good thing because the Dr was able to come in and see how much pain she was really in, we also found out that the morphine will take away her acute pain, and the oxy will help with underlying pain. So we have started her on morphine for awhile till we can figure out what is causing all the pain or it looks like it is going away. I am worried about all the medications that she is on, but if she needs them, then she needs them and I will give them to her. With the pain medication I am able to finally get her to sleep in her bed. She wouldnt sleep there before because of all the pain she was having. I feel so bad that it has taken 5 days for me to figure out how much pain she was really in. With the morphine, Oxycontin, and the benadryl in her system she is on oxygen because she is not breathing in deep enough. But this is normal and it doesn hurt her at all to be on it. She is feeling so much better with it though, with fluids, the pain meds and they Tylenol, her heart rate is down to the low 120's and I am so happy about it!







Tomorrow we have been scheduled for a CT scan to scan her whole body. They are going hunting to find a source for the fever. They may not find it, but at least we know she doesnt have something that nothing is being done about. I will let you know what the results of that is. The xray came back normal from yesterday, but that was to be expected because you can really see much on a xray. I also dont know if I mentioned that she is being fed through her IV, she stopped nursing about 6 days ago, and I have been pumping since to keep my milk. I was excited tonight though because she did nurse for a bit after the pain meds, I am wondering if its because of the pain that she stopped eating and is so nauseated. We will see in the afternoon tomorrow, she cant eat in the morning because she might need sedation from the CT.

Aubree's favorite video to watch at the moment, its Aundrea and Nelson dancing. They think that after a movie is over the songs that are played as the credits role are put there to dance to!

Sunday, January 2, 2011

AUBREE IS STILL VERY SICK. THEY ARE DOING EVERY THING THAT THEY CAN, SHE IS EXPECTED TO GET AN XRAY THIS AFTERNOON OF HER BELLY, BUT THEY DONT THINK THEY WILL FIND MUCH AND WILL USE IT AS A BASE LINE FOR IF SHE DOENST FEEL BETTER IN THE NEXT COUPLE OF DAYS. SHE IS RECIEVING BLOOD TODAY AND THAT SHOULD MAKE HER FEEL BETTER. MY MOM CAME UP AND IS TAKING SHIFTS HOLDING AUBREE IN THE ROCKING CHAIR SINCE THIS IS THE ONLY WAY SHE WILL SLEEP. SHE WONT LET US PUT HER DOWN AND THERE ARE SOME THINGS I MEED TO DO DURING THE DAY LIKE EAT SLEEP I ALSO HAVE TO PUMP SINCE SHE IS NOT EATING. SO IT HAS BEEN AWSOME HAVING HER HERE. SHE ALSO TAKES SHIFTS SLEEPING AT NIGHT SO I GET SLEEP ALSO! YEA! SO THANKS MOM, YOU ARE THE BEST MOM ANYONE COULD ASK FOR!

Saturday, January 1, 2011

Aubree is still not feeling better today. Her fevers are still very high, and there is nothing that can really be done for them. She is given Tylenol but it only lasts for a couple of hours and its given every six. Today she is on a total of 3 antibiotics, 1 anti-fungal, and 1 anti-viral. They changed her antibiotics to stronger ones also. Yesterday she was given one, but someone down in pharmacy didn't mix it, and she was given saline instead of the drug. They found this out because they tested her blood before and after getting it and there was no drug in her system after. Who ever did this did it for every child getting the drug yesterday. I hate to be that person today!! They dont know for sure what it is but they think its bacterial septic. So that is why they are just giving her so much. They still dont know for sure what it is, they are still waiting for them the results of the cultures. So far they are not growing things but it takes about 2 days to really get results. When and if they do they will then gear a drug more for that. But for right now they aren't going to wait to find out what it is. This is an Aubree sandwich. We went old school last night and we put ice packs on her back and her stomach and a wet wash cloth on her head to cool her off. It did work and whenever she would get to hot, 102* plus we would do this.

This is her when she was awake for about 10 minutes during the night, she really liked the wash clothe on her head because she was so hot with a fever of 103*