2 Years

It has been two years, and we have settled into an Aubree normal. We still go to the Dr way more than the other children and we deal with diarrhea every day, we get to go see a dr for that soon and she will probably have a colonoscopy. She had dental work done in the OR and the dentist thinks that her permanent front teeth will be damaged. She still won't eat much of anything and will start food therapy soon. She loves her sippy so she can drink her meal. But this is her normal. We have gotten use to it, and we are thankful that she is here for us to enjoy everyday!

Cure Search Walk

These are the pictures from the Curesearch walk this year. Aundrea's really good friend from the U and her family came and joined us this year. It was so nice to have someone there to walk with.  It was just me and the kids this year. Nelson had drill that day because it was governors day and you cant get out of drill when the governor is addressing his troops. I also got to see some good friends that we went through treatment with. It was so nice to see them again. Up above is Aubree and Andrew, they look so good! It was a successful day for the walk and in a way I am sad that my life did not permit me to help out more.
Thank you to who ever it was that came up and took a picture of Aubree for me! With three kids in a large crowd I was not able to take many pictures, and Aubree was on a role that day and didnt want me to take her picture. So I am very thankful that someone saw her and came and took her picture, and when I was trying to get all three kids behind the poster, that someone came up and offered to take the picture for me! You can see in that picture just how much they did not want to take pictures. I have many things that I can say about the walk but they are not good, and this was a good cause so I will not say them. Maybe if I decide to participate next year I will have a better experience. I dont want to sound like a brat, and if I said all the bad things then I would and it would take away from all the good that was done that day and the children that are and have gone through cancer.

Curesearch Walk 2012

I made this video for an assignment for a class this spring. But with the curesearch walk coming up next weekend, I thought I would post it and hope that it would help inspire people to donate to the cause. Curesearch is the best orginization to donate to for childhood cancer. These kids deserve and need more. www.curesearchwalk.org/saltlakecity/aubree Join Aubrees team and walk with us, or just donate because its a great cause.

Echo results

I don't know why but I never said that Aubrees echo was good. She doesn't seem to have any damage done and has a perfect heart. The only thin that concerned me was that they thought she still had her line in, I don't know if that is scar tissue or what that means, but I don't think it's anything that I need to be concerned about.

Echo cardio gram

Aubree had an echo cardio gram done today. I was really nervous about it because the chemo could damage valves in her heart. We went in bright and early at 7 am, which I prefer, and got ready for some sedation. Thats why I like the early time if she can't eat. She was a trooper, she did everything that was asked, and it's funny cause she knows what to expect, when she was getting weighed she asked for her Cheetos, and I was sad cause she had to wait till we got to Oncology not Cardiology since that is where she was being sedated. The dr pulled out the stethoscope and she stood up tall and still for them to listen to her and held out her finger for her pulse ox, and got right up on the scale.I didn't think with her starting treatment so early that she would remember how to do all that stuff but I guess we go enough still that she remembers just what to do. Today she got a wagon ride to clinic since she had been sedated, she was to loopy still to be able to walk, and she tries but couldn't quite stay up right, so we laid her down. On the way home she threw up, this is the first time ever she has thrown up after sedation, I was on the freeway so I got to stop and let her finish and then she fell asleep. She has been asleep since and must really be out of it since its been three hours. I'm sure she will feel better when she wakes up and gets some food in her!

Potty Training

I finally decided to bite the bullet and potty train Aubree. She has been ready for awhile and peeing out of her diaper because she would pee so much at once, I have been putting her on the toilet in the morning first thing cause she would always pee out in the morning. She is doing awesome, she's only had a couple of accidents and those were when she had to poop. But she has had no accidents the past couple of days so we are on out way, I am so excited!

Update

It's been awhile since I posted here, life has been crazy with all sorts of stuff. Aubree is doing amazing, I don't even think about her cancer everyday anymore. She seems to have no effects from what happened except with her speech. She is in therapy, her comprehension is low and not where it should be. So we are working on that with her. She still won't eat much for me and prefers to drink her meals. But that has become normal and I don't push her much on it. Her speech therapist is going to start working on that, but she thinks there is something else going on with her that is making her not want to eat. It's crazy to think where we were just not even a year ago with her, she was on a feeding tube and not eating anything at all. So she is doing so much better this year.

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.

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.....

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.

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!

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".

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!

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.

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!

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!

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!

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!

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!