Sunday, January 25, 2009

This is Carmen, a few aunts and cousins, and me at the American Girl Store. I am so glad that we had this opportunity together. These pictures are hard to see on the blog, but you can see how radiant her smile is. She was smiling like this the whole time we were in the store.
Reed and I have decided, after much prayer (including yours, thank you) that we will keep Carmen home and not give her any more treatments. You can imagine the heartbreak we feel at recognizing this, but Reed and I both believe in not mourning until we have truly lost her. You cannot imagine how lucky we feel to have been blessed with this amazing girl. We feel lucky that we have been given time to know that her life will be short, and we can spend a lot of time with her before we say, "see you in heaven". We will not let other things get in the way of spending time with her. "It is better to love and have lost than to never have loved at all."
This week has been very hard on us. Carmen spent all of Thursday crying, and sometimes screaming from pain. She seems to be more comfortable now. She has lost a lot of her energy, though and does not talk, smile and joke as much, but every once in a while she'll still throw a joke out there. We should be having nurses coming in this week to help us care for her. So my plan now is to sit and spend as much time with her as possible. Many of you have asked how you can help. If you would like to help, anything that would allow us to spend more time with our daughter would be great. Frozen dinners have helped us a ton, thank you! Sometimes I have to go out, so if you would like to come and spend time with Carmen while I go and get some stuff done, that would be great too. Your donations have helped us more than you will ever know. Thank you for your generosity. The fresh fruit that was given to us was wonderful. Ecowater, and those that helped with that has been great. I no longer get a stomachache when I drink water, and I don't have to worry about Carmen getting one either. Thank you for the books you have loaned or given to Carmen. She reads about 2- 5 chapter books a day, along with several picture books, so we do run out of material sometimes. Carmen also loves the craft stuff! This is harder for her to do now, but she still does it about every other day. She has requested a trip to Michael's tomorrow. Hopefully we can make it! Thank you for all of your notes. Carmen enjoys reading them. Visitors are always welcome. We are not sure how much time Carmen has left. It seems like every day some new disturbing thing comes up. Carmen may not always look like she is enjoying company, but she does. She is just very uncomfortable. Your prayers continue to strengthen and guide us, thank you for those.

Monday, January 19, 2009

This is Carmen when she is around four years old.
We talked to the doctor today. We saw Carmen's scan. It was pretty shocking. She has about ten different tumors in her brain, and a collection of metastases at the bottom of her spine. Her Doctor is shocked also. He is also shocked that she is so comfortable. We are so grateful for that. He tells us she has weeks to maybe a couple months to live. He is offering a phase two trial as our best hope of prolonging her life. He says this may buy us a couple more months. I am torn at this point as to what to do. Carmen wants to fight. My only concern is that she is going to be miserable. A phase two trial is a treatment that is not totally brand new, but has only been tested on a few patients. This particular one would have a drug that would inhibit blood vessel growth coupled with a chemo drug that she has not tried yet. Reed and I are going to pray and look at all our options including the phase one trials (brand new never been tested), which the doctor does not recommend, and hopefully have a decision made by the end of this week.
Thank you to all of you for fixing up my house, and restocking my cupboards. It was fun to come home to. We are not overloaded with visitors, so anyone who would like to come visit is welcome to.
We know God is watching over us. Carmen is wiser than most adults. She is comfortable and happy still and still looks forward to her future. Carmen says she is learning courage. We love her very much.

Saturday, January 17, 2009

This is Carmen about a year before her diagnosis. She is about six years old.
We got the results back from Carmen's MRI yesterday. From what I understand, she has another tumor in her brain, and the cancer has spread through her spine, but instead of just being in one spot on her spine like it was the first time, there are several spots throughout her spine. This is of course terrible news. We will meet with the doctor on Monday to see what our options are now. Carmen is happy and comfortable now, which makes things much easier. Keep praying for us. We are so grateful to everyone for all that you have done for us. You cannot imagine how much easier things are when you know other people care about you, are praying for you, and love you. I'll write again on Tuesday after talking to the doctor.

Sunday, January 11, 2009

This is a picture of Carmen when she was about three. She is dressed up as Mary.
This week has been hard. We have gone back to wearing pull-ups and using the wheelchair. In the beginning of the week she had pain that would wake her in the middle of the night. That has gone away. Thank goodness. All through the week we have had trouble controlling her nausea. She was responding well to Zofran at first, but now nothing seems to be helping. She has good moments throughout the day, but every day is a pretty big challenge for her. She has lost her strength and Reed and I carry her if she needs to go somewhere. We are so happy for the good moments we have every day! She is a strong girl and never complains about this happening to her, and never asks "why me?". Even when she is at her worst, she seems to understand that this is a part of her life, and only complains about the pain that sometimes hits her. We will have an MRI sometime this week, to see if the tumor has grown or shrunk. Her blood test last week looked great, and she will have another one tomorrow. Thank you for all your prayers. We know this would be much harder without them. We know God is watching over Carmen.