Monday, March 29, 2010

Lexi update! Please continue to keep her in your prayers.

Here is an update that I got from Lexi's mom on her Caring Bridge Journal.

Monday, March 29, 2010 7:59 AM, EDT

Hello! I am sure many of you have thought that we have vanished! Scot and I have just been doing our best to enjoy our time with Aaron and Alexis at home without any hospital stays!

Alexis is doing very well. On March 19th, she was taken off TPN. Since then her appetite has not been normal but she does eat fairly well. Other than that her attitude and energy level have been excellent. (Just now I was going to type good instead of excellent and remeinded me of something Alexis said to me last week. She asked me a question and my response was good. She said why not great and I said well those words are similar. She then said no great is much better than good! I was amazed that this seven year old knows the distinction between those words!) Anyways, Alexis is doing great. She may tire a little easier but it really isn't that noticeable.
She continues to work with her teacher Mrs. Tucker. School work has been going very well. Despite the fact that Alexis missed much of the third quarter she is still average of where the rest of the class are! She is even reading over 75% of the second grade words. Since she is in first grade we are very impressed with her! I just wonder where she would be academically if she was actually attending school!!

On top of school, Alexis has been very busy with radiation. Her first actual radiation treatment was last Wednesday. Today will be her fourth treatment out of 12. She only has radiation Monday-Friday. Alexis had 2 dry run appointments before radiation to have pictures taken and to have her body lined up for the treatments. Everyone has been wonderful. Alexis has 3-4 technicians working with her during each treatment. They do an excellent job at entertaining her and making her feel comfortable. When she has the radiation which only lasts 30 minutes in total and less than a minute for each treatment area we are able to see Alexis through a monitor and even talk to her. Then between treatments we are able to go into the room to see her! It is a very busy process! The techs run in and out of the room continuously! On Alexis's first radiation day, I forgot to give her Zofran(nausea medicine) like the doctor told me to before she goes to her appointment. Sure enough within a hour and a half later Alexis's dinner came up! After the third time of her getting sick it dawned n me that we forgot the Zofran! Needless to say we have not forgotten it since and she has not gotten sick!

For the past month, Alexis has literally been addicted to the Wii! Which she will not play without daddy. It has actually started issues with her going to bed and taking baths. But since she knows if she doesn't she won't be able to play! Scot and I have been doing well at juggling all of the house chores. It takes a lot of extra time between working but at least we have a clean house. We have had other help to though that we greatly appreciate!

On the 19th, Scot and I talked to Alexis's oncology team about the antibody therapy. This will be the next phase. Alexis will start this a few weeks after radiation. This is going to be an intense treatment but I know we can get through it! Well I have so much more to write but I need to get to work! I have not forgotten about Caring Bridge. I always think about things to write but I have been so exhausted I can't force myself to sit in front of the computer after the kids go to bed!

I will try to write more soon though!

I hope everyone has a great week!


If you would like to read more about Lexi's battle with stage 4 Neuroblastoma click here.



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