Chemo Drugs

Erin this one is for you!! I don't have time to figure out your email, Aubree is actually playing in her crib and I know that it wont last long! The drugs that she is on are, the first four days Busulfan, and the last four days it is Cytoxan. She also will get four small doses of methotrexate on days1,3,6,and 11 after transplant to kill any T cells from Nelson.
Lizzie, in theory when breast feeding you can transmit viruses and she would get sick and then put the bone marrow transplant in jeopardy and they could be fatal to her. This was a big help in making the decision, but after I see so many other benefits of doing it. One a bottle really is easier for her to drink from so she is eating a lot better from a bottle then she ever did from me Also it helps me get out more. I am not always freaking out because I am scared my mom has hungry baby on her hands because I took to long to get back. The Docs differ on what they say about breast feeding, the younger doc seems ok with it and the older one is against it. (thats the one I talked to) All in all I am happy with my decision to stop, she got the benefits for a long time, I wished that I could have done it longer, but it has made all out lives easier, and anything that makes Aubrees life easier is better!
Anywhoo there are the answers for today. She seems to be doing good, she is getting mouth sores though, she is drooling and not eating. We started her on pain meds today, her heart rate was up and went down with them so that is an indicator that she was in pain. But all in all it is going good.

Starting to feel it.......

Aubree started the second chemo drug last night. She breezed through the first drug without much problem, but this one seems to really be taking out of her. She is really starting to feel miserable and irritable. The doctors told us that she probably would with this drug and the nurses tell us that it takes the cake of all chemo drugs. I feel so bad for her, she still has three doses left and I hope that she makes it through it without to much more discomfort. I am at the point that I hope she just sleeps because it would be better for her. She is on so many drugs and she's not even sick yet. I cant imagine what her IV pole and her lines will look like here in a couple of days when they have everything on there! Her appetite is really going down so I imagine here in the next week she will be put on TPN, but we will see. We are gearing up for the transplant and Nelson's role this week. Aundrea has a date with her cousin to sleep over for a couple of days and Nelson doesnt know what is coming. At times I feel so guilty for doing this to him, and I hope that he bounces back with out flinching. I am so grateful that Aubree has a match in him. Thank you for all your thoughts of love and prayers. We feel them, I feel them daily!



Aubree in her crib. My mom made these bumper pads for her so that we dont have to worry about her hitting her head when she has not platelet counts! They are really cute. This time around we got a 1960's crib and none of the nurses can work it. We have to have each night nurse come in and figure it out before she goes to bed. But I like the crib because its so big she has a lot of room to move around and play in.

The view from our room! I love it! Its great because I get to look out over the valley and Aubree gets to watch everything that is going on out on the road and in the emergency room parking lot. (its usually very busy).

Aubree looking out the window. I know that this will keep her happy for at least a couple of minutes. This is also a good picture of her broviac line. I have decided that she feels like it is a part of her and she gets upset when the nurses have to come and do anything with it like they were touching her. But she has has it just as long as she didnt have it, so it makes sense.

Transplant round

watching her brother and sister in the bath tub wishing!We are back in the hospital again. We were admitted on Tuesday at 5AM, and Aubree started chemo at 6 AM. She is doing good still, we started her on a second nausea medication yesterday and that seems to be working. I am sure that we will have to start all three again here soon, but for now she is good. She is not showing any side effects yet, but it usually takes about 7 days, and she is on day three.

This round is different than the others. They started her out with antibiotics right off the bat, they also have her on a calorie count. I stopped breast feeding her so now she is on formula and that is a different monster all of its own. I dont think that the dietitians like me much. I hate not having control over what my child eats, and everyone telling me what they should and shouldnt eat and how much. I am sure that I will get over it, its only 6 weeks right?

We had so much fun at home, its so sad to be back in. Aubree learned how to army crawl and by the end of our time home, she loved to just play with her brother and sister. We did opt for the 1960's crib because its a LOT bigger and she can play around in it so much better, since I never put her on the floor to play. Heres to wishing that everything goes well, even though I am pretty sure that she will get really sick this time also.

Aubree's Movie

I made this movie while I have been home this time. I have found it very therapeutic, as I think about what lays ahead of Aubree this next round. Its going to be very difficult. I found out today they may not even let me nurse her anymore. This has been very hard for me to think about, and I hope that I will still be able to. I will find out next week for sure. Home has been great, we have a lot of Dr visits, and next week there are so many more, but sleeping in our own beds has been awesome. Thank you for all the support that has been given! We have gotten this far, and we will make it through the next part, but I think its going to be the most difficult part yet. So please keep praying her, bless her heart she has been through more than any child should ever have to go through. She is a fighter, and our Angel. She shows me everyday to smile even when you don't feel good. I think any nurse that has taken care of her can attest to that!

We are HOME!

We came home yesterday! It took forever to come home, but it was so worth it. The Dr's came by and said that her monocites were going up and she had an ANC so we could go home. We were really surprised because Saturday they said it would be 4-5 days before we were going to be able to go home. After we were told we could go home, we realized that she had an antibiotic due at 2 and that home health would never be able to get the medicine out to us in time. So we had to wait for her to get that before we could go home. Then when the nurse tried to give her her medicine in one of her lines, it wouldnt work. It had a clot in it. Thankfully she had two lines, so one got the antibiotics in it and the other a really strong anticoagulant in it. Usually it takes an hour or so to get them working but it took 5 hours! We just wanted to go home! Its so weird because it seems that we always take forever to get out of there, but I see people leave at 10 AM. I dont know how they do it! So we are home, we are still on two antibiotics, and this time we are using a pump for one that runs over 2 hours. Its a pretty straight forward pump so I am feeling comfortable to get it. She also has a number of other meds that she is on. I had to upgrade from a basket holding her stuff, to a box. I feel so bad that she has to take so much, but its all necessary. I can only imagine what she is going to be on when we come home next time! But we wont think about that we are going to enjoy being home. I was able to go outside today and visit with some of my neighbors and it was just so nice to feel normal and not have the nurses as my source for conversation!

update

Aubree is doing well, she still is getting fevers on and off. She has gone almost 24 hours without one, and that is really exciting. They did take her off of one antibiotic today that was really hard on the kidneys, so that means she can be taken off fluids during the day. We are hoping that will help appetite and she will start to eat again. She will still nurse but its not a lot, and I worry about weight loss since that seems to be a big thing with the Doc's. We also found out that the bacteria that caused her infection was the bacteria that is found on the skin. Its just crazy that something like that can make her that sick. So hopefully we will go home soon! She still does not have an ANC, but every other number came up so any day she will have one and we hope it shoots up so that we can go home! I am really tired of being at the hospital and I think about the bone marrow transplant and my bum starts to hurt because I know that I am going to spend weeks in the rocking chair holding Aubree! We are told that most likely she be admitted for her transplant on March 1 or 2. Its not set in stone yet but that is what they are looking at. It will be sometime that week. We start Dr appointments for it on Tuesday with Nelson Leland, so its becoming a reality here very fast! We are going to have a fast for both of them on Sunday the 27th of Feb. for anyone that would like to join us!

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!!