Its crazy how you start losing time here. The days start running into each other.
Not a lot new has happened. Avarie is still completely bedridden and in a lot of pain, but I do see a slight improvement in the pain. And I mean very slight, but any little bit gives me hope. I am hoping another day of chemo and antibiotics will help to relieve the pain a little more. The chemo should kill the leukemia cells that are built up in her bones causing a lot of the pain, and the antibiotics should fight the infections. Its taking a long time to fight the infection because her body is completely defenseless, it is completely relying on the antibiotics to do the job for her.
Dr. Shardy (one of the Oncologist) came in yesterday and explained that they would like to test our other children to see if they might be potential bone marrow matches. She does not necessarily have to have a transplant, but they would like to see if one of the kids is a good match for her. If one of them is a good match then they may recommend doing the transplant. The first step is to see if a transplant is even an option, and if it is then we would sit down with an oncologist transplant specialist from Doernbecher to discuss options and risks. I may be totally wrong on this, but I feel like I already know the out come of this. I have a very strong feeling that my baby, Sawyer will be a match for her. My reasoning is actually kind of a long story, but many of you close to me already know it. I will post the story another day if it turns out to be him, the story just needs all the details to really give someone the full effect and impact his birth has been in my life.
My biggest concern with a transplant was the fact that it would make her sterile. She would never be able to bare children. That thought is devastating for me. I know there is adoption, which is an amazing option, but the thought that she would never feel her baby grow inside of her and experience giving life to another human being is hard to swallow for me. So I started researching freezing some of her eggs, but that is not a viable solution. Only fertilized eggs can be frozen for long periods of time, and that is not an option. Our Oncologist researched for me the option of having an ovary surgically removed and frozen. This is new research and does not have a lot of research behind it yet, because the few that they have done have been over the last couple of years and the girls are not yet old enough to see if it is actually viable or not. Maybe in 10 years there will be a great option for young girls faced with this, but for now there is not. What ultimately brought me peace about this, at least peace for the time being, is finding out that the drugs she is receiving for the Extremely High Risk Leukemia is already damaging some of her reproductive organs. This is not an absolute destruction, but it is a more then likely. That means that more then likely she will have fertility problems, or complete reproductive failure. My peace of mind comes from the fact that there is nothing I can do about this, right now it is more important to save her life and trust that the Lord will provide a way for her to be a mother if that is his plan for her. That is hard to swallow, but there is nothing that anyone can do to fix this. It just is what it is. I think I will deal with this emotionally later when she is older and I have to explain it to her. Right now my emotions only let me deal with saving her at all costs, and the side effects will be what they will be. You have to learn to give up a lot of control in life going through this. My husband will tell you that is definitely something I needed to learn.
Sunday, November 9, 2008
I think today is Sunday?
Posted by Jenell at 5:27 PM
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7 comments:
To the whole Giles family's and circle of friends. We at Evergreen Court have made sure you are on our prayer list. We continue to pray and wish you only the best. Through Him all things are possible. From your Friends in Christ. Tracie and all the staff at Evergreen Court.
Man, I wish I knew the story with Sawyer. Chuck and I want to visit tomorrow after he get's out of school. I will call you.
I just had to tell you that when Charlie woke up the other day he told me that he had a dream that Avarie came over and saw his hair and it made her all better.
Jenell,
It was nice to hear from you. I am gald that Avarie liked Brooklynn's video. We are praying for you guys everyday. Brooklynn keeps telling me that Avarie is going to get better so she can come to her birthday party next month. If there is anything else that Dan and I can do for you, please let us know. You can call me, or e-mail me at gallupsharon@yahoo.com. Are you taking any visitors right now to see Avarie. Brooklynn wants to make something for Avarie for FHE tonight and I know she would like to bring it up. Just let me know. Sharon
Muirin continues to ask for Avarie multiple times a day. The other day she was playing dress up with her doll and asked that I put jewelry on her. She said "Mom Avarie is a princess. I want to be a princess like Avarie." That whole day she kept her doll with her and even slept with the doll by her side. Muirin and the doll stayed dressed up as princesses all day. She loves to pretend her doll is Avarie and that they are together. She looks at pictures of Avarie all the time and then minutes later ask to see them again. Know that Avarie's cousins miss their princess. Much love and prayers.
Jenell you told the whole story about Sawyer in one of your June post. Rachelle go there and read it and you will have the whole story. Jenell you could always copy and paste it. Hope today is a good day.
Hi, I came by your site by accident, but couldn't leave without leaving a message of hope. I understand what you are going through, and trying to hold on to. My daughter has come through transplant, her fertility will likely be an issue but we will be there to support her in building a family how ever that may take shape (including egg donation from her sister perhaps).
Ultimately it is a blessing to be worrying so far in the future, it means you are filled with hope - as you should rightly be.
Prayers for you and your family at this time, and for the bright future ahead.
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