Thursday, December 15, 2011

normal???



Sometimes I think that we are normal. I am use to not being able to go to the grocery store with all my kids, at it is so nice to not have to take them all, and not going all that many places. At times we start to feel normal. We forget about what Aubree went through, we still think cancer everyday, but its normal because we have been thinking cancer everyday for a year. I do think we do go some days without thinking it, but with still having to give Aubree medication everyday, we still think about it a lot. We were getting causal of where we would take her and we enjoyed going out as a family.

It wasnt till Aundrea's recital for Kindergarten that I realized that we are not normal at all. My sister needed help at her house, and so my mom wanst able to come up at watch Aubree, so my husband and I decided that we would just take Aubree with us. I walked in and was a little uneasy, but it was all grownups and very few children. Then the school started to file in, and I started to panic. I know that some of those kids were sick, and I didnt want Aubree around them. I had a mask in my purse out of habit and I put it on fast and got up and went to the back of the room. I was disappointed to be at the back of the room because all of our pictures an video of Aundrea are not good. Aubree got a runny nose the next day and I know its because of being in the school with all those kids. So we are not feeling normal again, and are more careful of where she goes.

Monday, December 5, 2011

Thoughts

I dont know that anyone really reads this blog anymore with Aubree doing so good. But that doesnt bother me, I started this blog to help me put down my feelings. To help me deal with what our family is going through. At times, I believe, it was a way to get information out to a lot of people. With that said, tonight is a night that I am just need to write.
Tonight I learned of another child that has relapsed. I dont know them personally, but they did end treatment a month before Aubree was diagnosed. It makes me scared, my heart hurts for these people, but there is also fear for Aubree. But not only Aubree, there are so many other children that I have got to know that I think what if. I know that she will be ok, what else can I tell myself? But the what if's always sneak in, I dont know that I could do it again. I am just glad that I have so much to do, that I dont have a ton of time to think about it, but I still do.....

Thursday, November 10, 2011

No more Cyclosporine!



Most days are starting to feel normal. Aubree is doing just what she should do for her age. Nelson and Aubree fight all the time, but then are best of friends. She is starting to climb everything, I found her on my desk one day, and gets really excited when bubble guppies come on. But then things happen and I remember just how not normal she is. For the past 6 months I have had to give her medication around the clock. This last couple of weeks it has only been twice a day. I have only forgotten to give her medications to her I think three times. That is huge for me, but the one drug that if forgotten to be given is no more. Aubree took her last dose of Cyclosporine, (her rejection drug for her bone marrow transplant), on Tuesday this week. She is still on two medications for another three months, but we can handle that.
This last week we found out that one of the families that we went through treatment with has relapsed. This has really affected me, she had a sibling bone marrow transplant, and will have to have another transplant. When you go through transplant you think its a cure for the cancer, but this has made me realize that its not. That we could be going through it all over again, and I cant even imagine that. To know what we were in for and how long and the emotional toll it took on all of us. I would be devastated. So pray for sweet Brielle, she is the sweetest 8 year old.

Monday, October 31, 2011

1 Year

It is hard to believe that it has been one year since we started our journey. One year ago today, Aubree was in emergency surgery getting a central line placed on a holiday, and it was Sunday. Yesterday was her one year mark of when she was diagnosed. Its bitter sweet to remember, but how much easier this time is because she is here with us and almost done with treatment all together. We have about 3 more months of medications to give, we have doctor appointments once every 4 weeks. We almost feel normal again. We are excited to be able to go trick -or-treating this year, my children are so excited! Aubree loves candy and loves getting candy in her pumpkin. It is going to be a great day!

Friday, October 7, 2011

Update



Aubree is doing so good, the Doctors even moved her weekly visits to every three weeks! Its nice not to have to go every week. She also has only 5 more weeks left on her rejection drug and then her immune system can try to get back to normal and then we can get back to being more normal. But our life is really getting back to normal, Aubree can go outside and play and she loves it. She is walking now and so she is every where! A couple of weeks ago she decided to follow Nelson to the bathroom, but he didnt want her in there with him, so he slammed the door, never a good thing! It cut into her finger, so we got to go and visit the ER. I was at my friends house without Nelson, and so she watched Nelson and Aundrea while one of her friends rushed me and Aubree over to Primaries. We stayed there most of the night, but we didnt have to stay over! Her thumb looks really good now, she may get a nail back someday, but she can use it. It was a weird knowledge to know that the blood that was coming out of her fingers was Nelson's. The body is amazing! Aubree is amazing, she wasnt given any pain medication for her thumb for over 4 hours, and during that time she did so good, she would even laugh at me sometimes! She also had to get an IV in the other had so she couldnt use either of them for awhile, but they had to give her a big dose of IV antibiotics right away so she didnt get a huge infection. Here is a video of her after it was all done and she was just feeling good, I just laugh at her every time I see her so "high".


Wednesday, September 7, 2011

Finally, Aubree can have a BATH!

Here is Aubree yesterday as we were waiting to get her central line out. Yes, she got it out yesterday! We got a phone call on Tuesday from surgery wanting to know Aubree's medical history. Someone from the bone marrow team forgot to call us and let us know that she was going to have it taken out yesterday. I didnt care as long as she was getting it out! She also went to every two week appointments. We are so excited about that also. She is moving up and getting so much better.
I found this picture of the first time she had her line replaced and I couldnt believe the difference! It was a week after she got out of the hospital for her transplant at end of May, so a little over 4 months ago. It was before she was diagnosed with Graft vs Host and I remember checking in for this and having her throw up while I signed papers for the surgery. I had her on my lap holding the emasis basin with one hand up to her mouth and the other hand with a pen signing the papers. The girl checking her in was so impressed that I was doing it all. She looks so sick here, I cant believe that I never saw how sick she was while she was so sick! I am just so thankful that she is so much better and it happened so quickly!

Thursday, September 1, 2011

Good News

We got some really good news at the Doctors this week. They are going to schedule to have Aubree's central line taken out! YEA, I am so excited because she really needs a bath more than once a week, and she can get wet without me freaking out and its one more thing to being normalish again! She is doing so good. She is eating like a champ, being weened off her rejection drug and only on two other medications. So we are so happy with her progress. It has been such a long road and its nice to be able to just feel like we have a toddler not a sick child.

Monday, August 22, 2011

Last Week Doctors Visit

I have been meaning to write but life is so crazy busy that I havent had time. With school starting and my two oldest starting school and then to have Aubree have her own schedule on top of Nelson and my school schedule. We just started today so it should be just crazy from now till December! Aubree is doing good, they took her off of her antibiotic and her anti fungal last week. They are also allowing us to try an oral magnesium, and if all goes well then she will be IV free, and could get her line out. But I am not sure how likely that is going to be. She is getting major diariha from the magnesium, so my guess is they will put her back on the IV mag. But they also started her ween on her rejection drug. They did a pretty big drop and are having her taking it only two times a day instead of three! I am loving not having to get up at 6 am to give it to her. They did this because her kidneys are having a hard time and she has very high potassium levels in her blood. They hope with taking her dose down that her kidneys will do better, I am not sure what they will do if they are still having a hard time this week. I have nightmares of her kidneys failing and then we having to decided if Nelson would give her a kidney. We already now he's a perfect match from the last donation he made to save her life. I am just crossing my fingers that her levels go down and all is good!
My emotions are always just right under the surface and are always there and I seem to cry all the time at anything. I always cry when reading others blogs, I cried when I read about my friend receiving a bed! But my heart is broken today as I heard the news of another child loosing her battle. I was talking to my mom today and she asked what was going on and told her I couldn't read his blog because it is to hard. It is such a reality and a possibility for me. But my thoughts are with this family. I met them only once and their story has touched me. The parents were married at Primary Childrens so that their son could attend and he was inpatient. She is pregnant and he will never meet his sister. He had only weeks to live after finding out on a routine MRI that he had relapsed. He was 7, and he was loved!

Sunday, August 14, 2011

Test Results

We went in on Wednesday to find out what they found with the bone marrow biopsy! They found nothing!!! We are so excited that they found no trace of the Leukemia anywhere. They also said that all her bone marrow is Nelson's still. So we are going to keep going with the course that was set. She will start her ween of the rejection drug next week and hopefully come off a couple of other drugs. We found that she takes her milk best from a syringe, instead of a bottle or sippy. I am still needing to get more fluids in her and that is what we are going to work on this week. So fingers crossed she wont be dehydrated when we take her in this week for her appointment!

Friday, August 5, 2011

Dr's Visit

We took Aubree in yesterday for her Dr's Visit and her bone marrow biopsy. There were a few really important things that happened. First, we found out that in her blood work last week they saw some blasts. They weren't Leukemia, but they werent supposed to be there and that is what triggered the events of taking her off her steroids and the bone marrow biopsy yesterday. I have always wondered if doing the bone marrow transplant was the right thing to do because it has been so rough on everyone involved. But with everything that has been happening it confirmed in my mind that yes it was right, that she would have relapsed if we didnt and she would have relapsed soon after the chemo was stopped. So we will see what the tests show from yesterday to see where we go from here. There are several things that could happen, but we will deal with them as they come.
The second big thing yesterday was that Aubree gained two pounds in a week! That means that she is eating way more calories than I have been thinking. So after talking to the Doctors we decided to pull her NG tube out and see how she does. She has never been allowed to truly be hungry and have that relationship with food that we all have. (She has it with her little red backpack that houses her feeding pump!) When she woke up yesterday from her Anastasia, she was so mad because she was really hungry. I showed her a bag of Doritos, her favorite and she stopped crying and started eating them. She was hungry! This morning she woke up at 6 am hungry and drank two ounces of milk. She has never drank that much at one time before. So I really think it will work. As the days go on she will be able to drink just a little more and eat a little more and she will be ok without her tube! I cant believe that its coming more to a close! I thought this day would never come! It has been such a long road with her eating. Now if only we can get her to have normal blood tests and get her central line out. That will be the day!

Thursday, July 28, 2011

A phone call.....

We got a phone call from the Doctors yesterday. I didnt get the phone so they left a message. This is nothing abnormal, Aubree was seen in clinic on Tuesday and they are always adjusting her rejection drug level. When I listened to the message I started to get worried, all they said was to call them back.
I got a call from them today and was told that we needed to stop her steroid, she still had one week left on it. We were also told that her rejection drug level was low but they wanted it to stay there. They want all this because they want to retest her bone marrow. Her last biopsy showed some questionable cells and they want to see what will happen when they take her off some of these medications that are suppressing her immune system. The hope is that Nelson's bone marrow will take care of all these questionable cells and she will get a clean bill of health.
Its a little unnerving because when we talked to them about the results they said if they were worried they would push her to get off her drugs a little faster, isnt that what they are doing now? So we are hope that her tests will come back clean this next time and we wont have anything to worry about!

Sunday, July 17, 2011

Hairy Aubree

This is Aubree now, just a few days ago I took this picture.

Here is what I think if whenever I think of Aubree. My sweet bald little girl. This picture was taken maybe 3 months ago. So it's hard to believe how much hair she now has. The rejection drug that she is taking is making her hairy! Since she is a baby she is even more hairy than most. These pictures of her hairy back just crack me up. I did spear her the embarrassment of having a picture of her butt, its just as hairy. I'm not sure if its the chemo or the rejection drug that has made her skin darker. But she really is another little girl now. She looks so different.


Cure Search 2011

Aubree with her face painting
Nelson as a tiger.
Rachel and Me with Mikhael and Aubree. We went through treatment together.
Releasing the white balloons for those children who did not make it. A very sweet moment.
On stage with other children who have had cancer.
Our shirts that we made

The back of your shirt if you were a girl.

Our friend Erin, she was in treatment with AML when Aubree was diagnosed.


Our team minus a few people who got lost in the crowd.

Our friend Liz who took many of these pictures for me. Her son Jacob is in the middle of treatment with AML. Her son was at the hospital that day. Jacob has Monosomy 7 like Aubree and will receive a bone marrow transplant from his 3 year old brother. This family is inspiring!



Rachael Steele, her room was right next door to ours when Aubree was diagnosed. She was going through her bone marrow transplant and so we always had the same nurses. We were able to watch her fight, and it gave us hope.

We were able to participate in the first Cure Search Walk held here in Salt Lake City. I am so glad that I decided to make a team and go. It was such a special experience for me. First we were able to watch as people so generously gave to our cause. I was so touched by my cousin who with in a couple of hours of my first post signed up and donated money besides just paying her walk fee. A week before the walk I noticed that she has raised more money. I later found out that her children had lemonade stands and gave the money they earned to the walk. I am so touched by her love and involvement in Aubree's cause. Her whole family is amazing. There were so many other people who gave and then came out and supported us. Thank you all for doing this!
The day of the walk was fun, we were able to see so many people that we love. I was able to see one of my friends who's son lost his fight. I have not seen her since before who son passed, and it was so touching to see that she came up with the courage to come so soon after. It was so good to see her, and I love you.
There were so many people there, they had over 1400 walkers. The walk was only 1.5 miles but it was a very slow pace because of all the people. I will continue to do this every year that I can. Because of what Aubree went through I know there needs to be more research done and improvement to treatments for these kids!

Wednesday, June 29, 2011

100 day test results

Today was a busy day. Aubree had a CT scan as a follow up this morning for when she had lung nodules back in December. We then went to clinic and met with the Doctors to find out what her test results showed from last week.
For the most part they were all good. Her bone marrow showed that it was all Nelsons! YEA! Her blood under the microscope was clear of the Leukemia. They also did an even more sensitive test and that showed 0.02% that might be blasts. Since she is on her rejection drug and the steroids they are not sure if they are AML cells or not. They will probably repeat the test later on when she is off her rejection drug for a couple of months to see if these increase and if they can tell for sure what they are. She will not be off her rejection drug for another 4 months though so no use in stewing over the .02. They arent worried enough to try to hurry and get her off of her drugs to see so that is good.
The other thing that we found out is that she will probably be on her rejection drugs for at least another 4 months. That means no problems at all, and that just hasnt been the case for us, so probably longer. She will need her central line till she is off them also, because her body isnt very effective in absorbing magnesium because of the rejection drug, so she gets magnesium every night through her line.
They did start her taper again on her steroids so that is good. Also her red blood counts are normal and her hemoglobin is in normal range finally. We are still waiting for the platelets to be in normal range but they seem to go up every week. Her white count is "normal" but its not really, the steroids kind of screw it up and make it look high when its not. So that is all really good news!
We are so excited that she is doing so good. We are so happy with her results, and kind of bumbed that she has to have another bone marrow biopsy later, but we will take all the good news that we can get!

Wednesday, June 22, 2011

100 days!

Aubree went in for her 100 day bone marrow biopsy yesterday. Her 100 day mark was officially June 18th. The will be looking at her bone marrow and seeing how much is her's and how much is Nelsons. We hope that all of it is Nelson's since Aubree's marrow makes leukemia. We will find out the results next week when we meet with the doctors unless its bad new then we will here before. So lets hope to hear on Wednesday.
She is doing really good at home. She gets into everything around here. She is right on track for her age. Opening cupboards and pulling everything out, putting everything in her mouth. She keeps us busy. We are concentrated on getting her walking so that her hands arent all over the dirty floor. She still is not eating at all, she was drinking out of a sippy for a couple of days but that excitement as worn off and she is back to getting most everything through her feeding tube. It could be a very long road before she eats again, she just is not interested at all. But talking to people who have gone through chemo say that it messes with your taste buds and nothing sounds or tastes good and it takes awhile to wear off. So maybe when that does things will start to taste good and she will want more.
I was reading somewhere about childhood cancer statistics and here are some. 35 children per DAY are diagnosed with cancer, 1 out of 4 will not survive, 4 out of 5 that do survive will experience late effects from their treatment. Its hard to believe that on the same day that Aubree was diagnosed that 34 other families went through it with us. That was a horrible day for us, but so many others had a horrible day with that news also. If you look at my blog list I have I think 6 blogs linked there, two of those Angles did not make it, this is why I want to start to contribute to the fight to get help with research. There are things that can be done, and people are trying to find a cure, or just better treatment with better odds. But they need money to do it. This is why I am walking on July 9th with Curesearch. That organization gives 95% of what they make to the research of childhood cancer! Please join or donate to team Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight

Thursday, June 9, 2011

Erin



Here is a video that Erin's Mom made for Cure Search. If you look to the side her blog is on the my blog list as Little Air Bear. She was diagnosed the same day that Aubree was born. We were in treatment at the same time. Erin is in remission, but her family still lives with the fear of relapse. If we could find a cure for childhood cancer then families wouldnt have to go through this!

Aubrees Birthday Cake

Wednesday, June 8, 2011

Aubree's First Birthday




Aubree was still in the hospital when her birthday rolled around. We thought for sure that she would be out. It was very uneventful for her because she went into surgery that morning so the rest of the day she was sleeping of the effects of the drugs. I felt so bad because the staff kept checking on her to sing her happy birthday and to give her some presents, but she was always sleeping. Finally at 6 pm she woke up and we were able to give her a present and have cake. The staff rounded up as many people as they could to come and sing, it wasnt what we wanted but I was so glad that we were able to celebrate her first birthday.
One reason I like going to clinic is that you get to meet so many different people. Yesterday I had to run Aubree up to clinic because she was bleeding from her entry site on her central line. It wasnt a lot but they changed the bandage to one that would soak up the blood from the plastic one that she had. When I was waiting to check in I was able to talk to a mom who had a daughter who was 2 years old. Her daughter did have cancer but had SCID, the bubble boy disease. The way to "cure" that is to have a bone marrow transplant. Her daughter was around the same age as Aubree was when she had her transplant. I asked her about eating (that being my biggest frustaration) and she said that her daughter still has a hard time eating over a year later. In fact they had an NG tube for a year feeding her at night through it! It is good to know what to really expect, and granted every child is different but with Aubree not really eating anything but cheetos I think we are really in for a long hard battle. To think about it makes me so tired. I am so ready to be done, have her better, but I just dont think that its going to be that way.

Sunday, June 5, 2011

CureSearch



Here is a video of Children HERE in Salt Lake City who are going through treatment at this time. Help us find a cure. Come walk on July 9th at Liberty Park. If you cant come then help us by donating any amount, Or become a virtual walker. Join team Aubree. http://curesearchwalk.org/saltlakecity/aubreesfight

Home

Aubree came home last night. She was able to get her new central line and did very well. We were worried about pain but we relieved when it turned out to be her sedation hadnt worn off completely yet, so the Doc's felt good about sending her home. It is so nice to be home and to be able to sleep in our own beds. Aubree also started eating a little. I can usually get her to eat 2 out of 3 meals. She still doesnt eat enough at each meal but I am ok with this. Its huge that she is just wanting to eat at all. She will be on anit-biotics for 2 weeks, so we dont think that she will get sick while she is on that, so we have two weeks at home at least. We hope she doesnt get sick at all anymore, but with still being on steriods there is the possibility. So we will enjoy the time we have here while we are here!

Friday, June 3, 2011

Cure Search







Cure Search is having a walk July 9th, they give 100% to childhood cancer research. Please join Aubree's team and we do not want children to go through what she has. Remeber that this vidoe was made before her transplant. There are many more months of pain that she has gone through since. Please help, donate anything. Be a virtual walker if you cant come, support Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight




Update:




Aubree's blood cultures came back with no more bacteria in it. Taking out the line was what needed to happen. She will get her THIRD central line tomorrow. I am not sure when she will be able to come home but hopefully soon.

Wednesday, June 1, 2011

No central line






Aubree had her central line taken out today. They were very nice to take her at noon instead of 8 pm tonight. I was not looking forward to having a starving child today, and I was kind of sad that she wouldnt be able to dig into a cake, but now she can. Getting her central line out isnt so bad if she doesnt need it anymore. Her line goes into her chest into a major vein right into her heart. The tip of it ends about 3 inches from her heart. This makes giving medications more efficient because it goes right to all of her body at once. Also its a double lumen meaning there are two spots to put medications into that are not compatible with each other. If you get two drugs together that shouldnt be the drugs the drugs could solidify in her line. (one example) This makes things much easier when giving her many medications at once. When she was going through transplant they almost needed three entry points into her body because of everything that she was getting at one time.

The bad thing about her getting it out is that she still needs it. You can draw blood out of the central line. This means that Aubree does not have to be poked a couple times a day for her labs on her blood. You can not draw blood out of an IV. This means that for the next couple of days Aubree will be poked multiple time a day. That means more pain for her, not to mention the pain from the IV in her foot, and the extra pain that she is having due to the infection in her body. One so small should NEVER have to go through this much pain. I always feel so bad when I have to rip the badage off her face to put a new one on for the NG tube, her face is so hairy right I can only imagine how painful it is.

She can not go with out a central line which means another one will have to be placed in the next couple of days. This means another surgery, that will have the surgeons cutting into another vein close to her heart. Plus more anesthesia. Every time you get put to sleep there are risks involved. This time when she woke up she was breathing fast and they had to do more than usual to make sure that she was breathing ok. What that was I dont know, I didnt ask not wanting to know what they had to do. I know that wasnt the best choice but I can only process so much.

The worst is that she is getting all this done on her birthday. I know she is only 1 and wont remember all of this but its a day that we should be celebrating her birth not having to do procedures to save her life. If we kept the line in the bacteria would have just kept infecting her growing resistant to the antibiotics, making it hard to clear her of the infection. My hope is that tomorrow the blood that they take will not have bacteria in it still, and that we can go home soon.

Tuesday, May 31, 2011

Boo

Aubrees blood culture grew out so they are taking it out tomorrow! Happy Birthday!

Infected Central Line?




Aubree had another fever today. That is not a good sign for her and her central line. Her blood cultures have all come back positive the last couple of days. They are waiting for her blood cultures to come back today to see if they grow bactieria or not. If they do they will pull her central line and replace it. She will have a regular old IV for a couple of days till they decide that the bacterial infection is gone, then they will decide what kind of line to put back in her. She will need a line for months to come, and we still use it, even at home, a few times a day and all night. If her cultures come back with no growth she will still be in the hospital for a couple of days because of the fever today. This means that she will be there for her birthday tomorrow. If she needs her line pulled, they will do it tomorrow. I am so sad that she will be there on her birthday and even more sad to think that she might go into surgery. But the only holiday she has spent out of the hospital is Easter so I guess its just one more "holiday" in the hospital!


Sunday, May 29, 2011

Doing better

Aubree is doing better, her fever is gone for now and she is sleeping after such a rough night. The doctors were able to identify what kind if gram negative bacteria that's infected her and say it's a common one and that it usually responds well to the anti-biotics they have her on. With gram negative bacteria after the first dose if anti-biotics they usually see them get worse before better because of all the toxins in the blood from the killed bacteria. They think this is what happened last night. They do not expect her to repeat it again and would be very surprised if she did. They think the latest she will get out is Wednesday afternoon, just in time for her party! Yea!

Saturday, May 28, 2011

Bacterial sepsis agian

Back to Primary Childrens

Aubree was admitted last night around 1 AM with a fever. If she gets a fever of 100.3 F, you get a bed automatically. So when I took her temp and it was 100.5 I knew that we were going back but we needed to call the Doc's to tell us to go. She had fevers off and on last night but seems to be ok today. She has to go two days without fevers to go home, so if she has no more fevers we could be home by Monday but most likely it will be Tuesday or Wednesday next week. She has not grown anything on her blood cultures so my thoughts are that she has what ever bug Nelson had last week. He had high fevers off and on for two days and then was just fine, so if she follows him we will be back home Tuesday just in time for her birthday on Wednesday!
I was reading somewhere that ranked Primary Children's Oncology as 38th in the nation. But I sure dont feel like they are when I go in. The one good thing about having to go in, is the staff. They are AMAZING! They are so warm in welcoming and I know when we go that Aubree is going to get great care.
My mom was suppose to have this weekend off, she was going to go to a wedding, she got my message this morning that Aubree was back in and came right up to relieve me so that I could go home and sleep. She knew that I hadnt had much sleep. My Dad didnt complain about going to the wedding alone, and freely let her come. I have the best parents in the world. They are so supportive and I would never have made it through this without them.

Thursday, May 19, 2011

Busy, Busy, Busy







Life with a moving baby is busy. Aubree learned to crawl and loves being able to go where ever she wants and get into everything. She has learned how to turn the DVD player off and on, this makes Nelson and Aundrea sooo happy when they are watching a movie! She has learned where all the big toys are, and crawls into Aundrea's and Nelson's bedroom to play with them. She is just to busy. Half the time she is hooked up to her IV medication so we are playing follow Aubree.

She is still not eating. We are so excited when she will eat 3 cheetos for dinner. I have been able to take her from continous feeds to just feeding her 5 times a day. This does mean that I am up at 2 am feeding her. But I am up at midnight and 2 and 4 and 6 anyway. Not to mention that I cant go to bed till after 10. She is just so busy with everything.

It has been a hard week for me. With the passing of Tanner and Kim, I know I shouldnt but I do wonder why is Aubree blessed to live. Before Aubree was diagnosed I knew that she was going to get sick. I would sit on my couch and think how I would handle being with her in the hospital all the time. What I would do with my other children. I would also see her in a small white casket, but because of the loving mercy of our Heavenly Father that will never happen. And I wonder why, but I am so greatful for the blessing of having her here and getting healther everyday. I dont know how long it will be till she is healed completly or if she ever will be. But I am just so greatful that she is here, and I feel selfish sometimes for it.

I hope that Andrew gets better soon. I went up and saw Lizzie and Andrew earlier this week and it brought back feelings that I never want to be dragged back up. So I hope that he gets better soon, that they can take him home and he can be a happy little busy baby.

Saturday, May 14, 2011

Home

Aubree came home yesterday. She responded very well to the steriods and her stomach started working with in a couple of days. She is eating a little and doing really good on her NG feeds. While we were in the hospital she got a bacterial infection in her blood and so we came home on two anti-biotics, and they also changed her anti-fungal to IV. I am very busy all day and all night with her medications, but its worth it to be home.
I am just glad that she is home and doing so good. I fell so blessed to have her on the mend. My heart goes out to Tanner and his family, I cant imagine what you are going through. My prayers are with you, and my heart breaks for you!

Saturday, May 7, 2011

Graft vs Host

It has been a rough week for Aubree. She has not been feeling good since the scopes that were done. She has stopped bleeding but she is no longer processing anything in her stomach. She throws up all the bile that she makes. When she was on feeds through her NG tube she would throw up. They stopped the feeds, and then the pressure of everthing in her stomach made everything come out of her NG tube. So she is no longer putting anything down her tube but it is being used for a drain. This is nice because at least she isnt throwing up anymore.
They have done a number of tests, including 18 biopsy's from her intestinal tract. Everything has come back normal. The only thing that didnt was a little bit of inflamation in her stomach. With her not being able to move anything in her stomach to her small intestines, with her cell counts dropping and with everything else that is going on they have decided that she must have graft vs host in her stomach. They have started her on steriods to help with this and put her on an IV version of her rejection drug. (she also is not absorbing her medication in her stomach well) These two things should help her to be able to start processing things in her stomach. The steriods make her very aggitated and she is not very happy. It could be a long couple of weeks for all of us!

Sunday, May 1, 2011

Back in the Hospital

Aubree has been throwing up blood this week as I mentioned before. Thursday she it was a lot and I called clinic, but I just couldnt bring myself to take her up there again, just getting out on Wednesday. So they agreed to just let me watch her and check on on Friday. Friday came and she was doing fine, then Friday night came and she started throwing up a lot of blood. So Saturday morning I called the BMT Doc on call and they wanted me to take her in and have a blood test run to see what her numbers were. Her numbers were good, so just as a precaution they decided to give her platelets hoping that would help with what ever was bleeding. They also started her on a new medication that is a lot of fun because she cant have any medication two hours before and after taking it. Good luck with that, I thought, she's on so many medications that its hard. But with a little juggling of her meds, we made it possible for her to take it 3 times a day. We went home and I was so happy that we didnt have to stay, I really hate sleeping there and having to stay. I LOVE being home. Last night I went to go change her diaper, and to my horror it was full of blood. So I was on the phone once again with the Doc's. This time Aubree won a bed on the ICS unit. They wanted to get more blood and see if her numbers had changed much from the morning. They hadnt but they still wanted to see if she would poop more blood and so we were there for observation. She has pooped blood every time since. Also her numbers this morning have gone down 3 points. So we are not going anywhere. Tomorrow she will have a GI consult and a scope on both ends to find the bleed and see what can be done to get it under control. We will stay in the hospital because there is always the chance that she will start to bleed a lot and will need emergency help. I would prefer her to be there just in case that happens. So we wont know much till tomorrow about what is going on.

Thursday, April 28, 2011

Line Break

Aubree's line never did make it back to working right. We tried all day Friday, Saturday, and Sunday. But Monday morning we were back up at Primary's for her line to be replaced. This was supposed to be an in and out surgery, and it is for most people, but Aubree was having a hard time breathing, because of her cold that she has had for over 4 weeks, so the Anesthesiologist wanted to keep her over night to watch her. That night her Oxygen level kept dropping, and an xray showed junk in her lungs, so they wanted her to stay to be monitored. So we got to stay the next night also, she gets really congested and so that makes it hard for her to breath and it is still making her oxygen drop but they decided to let us go home anyway and just keep an eye on her. I have to get up a couple of times at night and put saline in her nose so that she can breath better. She's also been throwing up blood here and there and today she it was worse, so I got to call clinic today also. They said that we didnt have to go in, but that we will chat tomorrow to see how things are going. So far she's doing ok, she had a little blood the last time she threw up, so maybe we wont have to go in. They will probably want to do a scope on her to make sure that everything is ok in her throat and stomach, so we will see.
Other than that she is doing good, she is starting to really crawl and I am sure by this time next week she will be really fast. We have her feeds up to where she is only on them for 14 hours a day. She is making progress. They only thing that really has me worried is she refuses to eat anything by mouth. I have to shove things in to get her to eat. I know that I need to be patient, but I really want some normalcy, like the feeding tube out and her eating and not always connected to a back pack that we have to lug around all the time. I also hate calling clinic everyday with something new that has happened. I really struggle with when to call them and let them know when something has happened. I dont want to be the mother that is always calling for every little thing, but I dont want to be the mother that doesnt call and she gets really sick. Hopefully she stops having things that I feel the need to call and let the Doc's know that something happened. That we can go a couple of days with out having to be in clinic or at the hospital. Ugh..... I will stop my ranting there! :)

Sunday, April 24, 2011

Being Home

I have to say that being home is really crazy. It takes so many people to do what was done in the hospital. I have two of my sisters coming up every week to clean, my mom is here everyday cleaning, my dad comes a couple of times a week to clean and my ward sends people over once a week to clean. (my ward has been awsome, all 6 months that we were in the hospital they brought meals three times a week over, now they are helping me clean. AMAZING!) I am in charge of Aubree's care and cooking, but my mom still does all the grocery shopping and cleaning of the food before she puts it away. My oldest sister came and took my kids to sleep over at her house one night last week to give me a break of taking care of all of this and my two other children. I am amazed that people do this all the time, there are many children who have their chemo at home the whole time, and their parents do this, you people amaze me.
Aubree is doing good, we have been able to up her feeds to 20 mils an hour, she does not throw up during the day to much anymore, if she does its usually just mucus from her cold. During the night she is still throwing up quit a bit, and last night I dont think she kept any food down. I am convinced that its the TPN and lipids. I think her body can only handle one type of nutrition at once. Two nights ago I did not give her the TPN and lipids and it was night and day. She threw up once, but it was hardly anything. I didnt give her TPN because she had a line break. It was her first line break and I thought that we were going to be able to make it without one. But no such luck. We went in to have it fixed and it wasnt working really well. It had clotted off, so they put TPA in her line, a product to help declot her line. She had to keep it in over night and we went in yesterday to see what was going on. If her line didnt unclot we were looking at surgery to replace her line if it didnt declot. But we were able to go in and they did another repair on the line and one side was working, I am waiting for home health to come and declot her other line. I dont think that they will take her to surgery if she at least has one line working. The bad thing is that the line that works in the line they can not draw a certain lab out of, so she would have to be stuck every time we went into clinic so they could get an accurate level of the drug in her body. Horrible if you ask me, its the one advatage of having the line in the first place. Other than that she is doing so good, she loves being home, she loves being with Aundrea and Nelson. She is starting to crawl to try to keep up with them, but she is very slow. They have to be really close for her to try or she has to really want something to crawl to get it. I feel as though I am rambling, it could be lack of sleep, so I am going to end here.

Coming Home



Aubree so was so excited to see Aundrea all she wanted to do was pat her, its her thing when she really likes someone, she likes to pat them.


The bell that is rung at the end of treatment. It says, "Ring this bell three times real well, the toll to clearly say, this treatments done, this course is run, now I'm on my way."


When you are done with your treatment the staff comes and sings to you, your chemo is over song, to the tune of happy birthday, Aubree loved it!


Here she is almost getting the concept that she is suppose to ring the bell.


But she caught on real quick!
It was a very sweet moment, to realize that she was never going to have to be given chemo again! To hear the ringing of the bell was the best sound ever, but I have to say to hear Aubree ring it was the best ever.