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.