Thursday, March 31, 2011

Do we know what we have?

Today I left my room irritated by Aubree's nurse, and saw some of my friends in the hall. After talking to them I found out that one of my friends daughters was not doing good. Earlier today she slipped into a coma, and the Dr's are doubtful that she will come out. Some of the moms had talked to my friend earlier and she asked if mothers with babies really know what they have?. And I had to think, even though I am going through hard times, my daughter is making it. She is winning the fight, do I know what I have? I have two healthy children, and the other is on her way to being healthy, do I know what a blessing they are to me? It kind of puts things into perspective for me. I am in my room having a pity part, and down the hall a daughter is loosing her fight. The problems that I have are not big, I need to look for the good things in all people, in all the nurses, and spend my energy in good things, in enjoying my children. My heart goes out to my friends family at this time, my thoughts and prayers are with them.

Tuesday, March 29, 2011

Day +19

Aubree is doing very well, she seems to be getting better every day. Yesterday was exciting because she had an ANC count of 100! To be considered engrafted she has to have an ANC of 500. Today it was 0 again, but other white cells are going up, so her body is just using the nuetrophils that she did have to heal her body. She has started to slowley start eating, which the Docters said would be one of the hardest things to get her to do. With her being so young, they forget that they need to eat after not eating for 3 weeks. Her red blood cells are just barley dropping, and her platelets are going up. She is still on her platelet drip, so hopefully she will be able to come off of that here soon, and just go to platelets every other day for awhile. Platelets are the last cell to start producing after a bone marrow transplant, so she will still need them for awhile. The only thing that is not so good with her is her blood pressure his high. She started on a blood pressure medication yesterday and they are still tweeking it so that her blood pressure will come done. High blood pressure is a side affect of her immune suppresent drug, so as she comes off of it she will be able to come off of her high blood pressure drug also. We are just so pleased with her progress. She still has a long way to go and she is still in pain and is very nauseated but we are on the way up! Thank you for all of you support and love that we have felt during this time, it was defentitly one of the hardest three weeks of my life and the love and prayers were felt and helped me pull through.

Sunday, March 27, 2011

Day +17

Aubree is doing very good. They took her off of her pain pump for continuous feed yesterday and took her off of it completely today. She is off of morphine and back on oxycodone. This was is a big step! She is also up more playing and just not sleeping as much. So we are really pleased with how well she is doing. She is also starting to get some white cells and not eating through her platelets and red blood cells quite as fast. So she is on the mend. We still have a way to go, she refuses to eat anything, and she is throwing up multiple times a day. But I am just really excited that she is getting better and one day we will be able to go home!

Friday, March 25, 2011

Day +15

We are 15 days out from transplant, its hard to believe that I have been sitting in the rocking chair for that long. Aubree is doing better, her mouth sores are getting better and she seems happier. She stopped throwing up blood and that helps calm the nerves. She is still throwing up several times a day, but I can deal with that. She will probably be nauseated for a few more weeks, maybe months from what I understand. Her white counts keeps playing with having numbers. But slowly it is starting to be .1 more than 0, so maybe soon she will start really producing all the cells that her body needs so she wont have to have a platelet drip and blood transfusion every other day!!

Wednesday, March 23, 2011

Nothing New

There is not much new news here. Aubree is doing the same, they struggle to keep her platelets up and keeping her blood up. She is getting blood every other day, and then is still on a platelet drip. They increased her diuretic drip, so she has stopped gaining weight but she is still hanging out at 10 kilos, 2 kilos up from where she was. Some days are better than others, but she is not doing anything that the doctors say is not normal so that is good. Thanks for all the love and support, it keeps me going and my spirits up!

Sunday, March 20, 2011

What more can sores do?

When we were first starting to get ready for transplant the dr's were talking about how sometimes they would have to give two platelet transplant a day. I kind of laughed it off thinking that Aubree would never need something like that. But Aubree's sores are getting worse. They are chewing through her platelets so her sores are bleeding and cant clot off. This is why she is throwing up and pooping blood. She started getting two transfusions a day of platelets, but that didnt work either, her counts were still very low. So they Dr's decided to put her on a platelet drip. She gets platelets for 12 hours a day. Aubree has a double broviac, meaning that she has two tubes coming from her chest to run IV lines into. Platelets can only be given by themselves in a one of the lines, that means that all other medications have to be run in the other line. But not all the medications are capadable, so they decided to give her platelets for four hours and then off for four hours, making a total of 12 hours. In the morning its still a little tricky and they have to take her off of her IV nutrition to give all her medications, but she is only off for about 2 hours and then they can hook it back up again. Its crazy to see her IV pole it is full, if they need to add another pump they will have to get a bigger one. Today they also added a diuretic drip. She is gaining weight everyday no matter how much medication they give her to get it off her. So instead of giving her high doses at different times of the day, its easier on her kidneys to just have a constant stream of diuretics into her body. Hopefully she wont gain anymore weight. She is now over 2 kilos, almost 6 pounds. She looks like a little Buddha. They are also watching her liver really close because all her symptoms point towards liver trouble, but her blood tests do not show any signs. Her side that her liver is on is also enlarged, but they are doing what they would if she did have the trouble with her liver. They may increase the medication that they are giving her, and maybe increase her diuretic drip but that is all that they would do. They would really just try to help her through till her counts come back and her body can right its self. We are hoping that this week brings nothing new for her body because she wont en graft at least for another week and a half.

Friday, March 18, 2011

Bad Days

Aubree has not been feeling good the last couple of days. The chemo side effects are really getting to her. The Dr's said that a week after transplant, that would be today, are the worst. So hopefully we are on the up swing with her.
Aubree refused to sleep by herself in her crib, which I understand you feel horrible all you want is that contact to make you feel better. So to help me not to have to sleep in the rocking chair every night I was able to switch out her crib for a bed. Aubree and I sleep in this bed every night, when she gets feeling better we will get the crib back.

Aubree has been throwing up a lot lately, her sores in her mouth and throat produce a lot of mucus and its very thick making it hard to swallow, not to mention how painful it is to swallow with all the sores. We have to suction out her mouth to help her get it all out. She was so tired after that she passed out in my arms while I was waiting to make sure that she was all done.


She does like to play with her suction when she is awake. This is really cute because she will put it in her mouth all on her own making our job so much easier.


With all the cell brake down she is really holding on to fluids. They give her diuretics everyday but she still continues to swell. They are going to try something else today but I am not sure what because I haven't talked to them yet about what is going on, I am still at home.


Here is where they took the bone marrow from Nelson. He is doing good, he is off all his pain medication and just is tired a lot. But this is expected because how much they took from him. He is doing really good. He should be back to 100% here in a couple of weeks.
Thanks everyone for you love and support. It has been a rough couple of days, yesterday was really bad. Aubree's platelets were low and so when she would throw up there was blood also because her sores could not clot off. (she got platelets twice yesterday with more today. They are going to keep a close watch on them and will give them to her as often as she needs them) That was really hard to see and just to see her so sick. I feel like at times I am in pieces with a tiny string holding me all together. But the love that I feel from so many places is what helps that string stay.





Tuesday, March 15, 2011

Update

Aubree is doing good, or should I say that she is doing what the Dr's expected. She has mouth sores, and those have caused her to stop eating completely. We suction out her mouth because she doesnt even want to swallow. The mouth sores make her saliva very thick and it also makes her nauseated when its in her stomach so we suction out her mouth as much as possible. Her little body is stressed and we can tell because her heart rate is high, a resting heart rate for her right now is about 140, normal would be around 110. When she is up and active it goes up to 175. There is nothing that the Dr's can do about this, she is getting enough fluids, she weighed in today at 9.2 kilo, that is up from yesterday .2 kilo's and she had lasics last night to help with a little water weight. When she came into the hospital she weighed 8.1 kilo's, so she is up more than 2 pounds and when you only weigh 18 pounds that is a lot of weight for a little girl. But over all she is doing good, and when she is awake she is usually happy, but she is not awake alot these days. She is on day +5 so hopefully only 15 more days before she engrafts and then she can start to heal.

Friday, March 11, 2011

BMT Birthday

Yesterday was such a great day! It is awesome to know that it is done and that Aubree is on her way out of the hospital and with her battle with leukemia! I am going to let the pictures tell most of the story!



Aubree's second chemo drug made her retain fluids so they had to weigh her night and day, here they are weighing her at night and she never even woke up. HA!




Here Nelson is after we checked into same day surgery. He was not to keen on these pj's, but he put them on for me and then posed! He was so good, he woke up at 5:30 AM to be there on time at 6 AM! After they took us to a big room to weight for him to go back and talk to the Dr's. He was excited because he got to play Mario Cart, so the pj's were worth it! Here we are chillin and waiting.


Nelson had some drugs before going back to the OR, so he got a wagon ride there, they wouldnt let him walk, and its so much more fun than a wheel chair!We couldnt go back to the OR with him, and so here is the line that parents can not cross, the Dr is distracting him so he wont care that we werent going with him!
Bye Nelson!



I went to see Aubree before going home to shower for the day, here she is on the day of her transplant, waiting for her new bone marrow.
Nelson in his tiny bed after surgery.
After he woke up the first thing he asked for was to play Mario Cart, but he settled for a root beer slushy. He loved it and drank almost all of it.Nelson playing with his toys that he got from strangers that had heard about what he was doing. We were so touched that people were so generous to our family.Resting with grandma since we didnt have the Wii yet.We finally got the Wii!He did take a break to play with his cars every once in awhile!Dave our nurse for the day setting things up for the transplantWaiting. We were supposed to start around 3:30, but when we finally did start it was around 5:30.The guy from the U who walked the bone marrow over from the lab.Nelson's bone marrow. Aubree was suppose to get two bags like this. But they divided into two because Nelson's and Aubree's blood type do not match so they didnt want her having a huge reaction to the red blood cells that were left in the bag. As it turns out Nelson had such good bone marrow, if they would have given her both bags it would have been enough for 3 transplants. So they took the second bag and froze it just in case Aubree needs it later on for one reason or another.Hooking her up and starting the transplant. The bone marrow team calls this the patients second birthday. These transplants are life saving, Aubree would have had a 10% survival with out it, and with it her odds jumped up to 90%. We liked them better. Because its a birthday to them they come and give presents to both the donor and the patient. They also sang happy birthday. It was really sweet.Here Nelson is ready to go home, he really was that pale from giving his bone marrow. We have to make sure to feed him iron rich foods, and give him extra iron supplements to help him.His bag of loot of everything he got. He really scored in the toy department!Dave "washing" out the bag making sure that all the bone marrow gets inside Aubree.We are done!! The transplant finished aroun 7:30 at night. We were all exhasted and so happy it was done and able to go to bed! Nelson today, he is really tired but he has grandpa looking out and taking care of him. He also was playing with all his new toys! He loves them so thank you to everyone to gave him things!

Thank you to my parents, we couldnt have done this without your help! Also you will notice that Aundrea is not in any of these pictures. Thank you Amy for taking such good care of her! I never have to worry about her when she is with you and you always take her so willingly whenever we need your help! Thank you so much!

We are so excited to start the next phase. No more chemo but Aubree will be on immunosupressents for over a year. We will still have to be careful and crowd free, but we have Aubree and it is ALL worth it. I would do it for years more if it ment having her here with us. She is really the trooper here and Nelson. They are the two heros of the experience! I am so grateful for them both!