Separation and Anxiety

Yeah, so I have to admit. I have separation anxiety from her already. No, I'm not worried that something will happen to her. I'm not worried that she'll get sick or have headaches. I'm worried that I'll miss her doing something cute, funny and whitty, and that I didn't get it on film!
But, I'm going to suck it up and let her go to school tomorrow. She loves school and soon she will be missing too much of it.
Em and I are still learning to handle the news. I do okay most of the time, especially when I am with my friends and family. It's those "quiet" moments that my mind begins to get away from where it should be focused. Luckily, I have some of the best friends in the world. They give up their time to go to breakfast with me, go shoe shopping and sit in the car while Ivee watches an hours worth of the most annoying musical in the world playing in the back ground. Thanks Ange and Cathy for keeping me occupied today.
So, trying to get back to the norm around here. It isn't too hard to remember where you are when the 14 and 11 year old are still constantly bickering. Luckily, they DO go to school everyday.
Unluckily for me, laundry, though clean, is piled up on the couch, and suitcases still need to be emptied. So, that will be my morning tomorrow.
Tuesday, Ivee will be seeing her new pediatrician. This woman is going to "love" us when she's done with my Ivee life history lesson for her. If she never had a child with an extensive life history, she will now!!!
Wednesday we visit the general surgeon to discuss the hernia. In the words I use so often, when talking of doctors who we've never seen....He won't like me!!! Most doctors don't....and I'm okay with that. They just aren't used to a parent who understands their big words and probably could teach them a few new ones. (some of you know what I mean!)
So, that's my shout out for now. Keep praying!!!
Love, Hope m/o Ivee the blessed.

What is coming.....

I will try to make all these details short and to the point as to not bore you or keep you from more important things.
Ivee has a reoccurance in the same area as her primary tumor. Dr. Merchant was shocked to see it in these scans. It has only been 6 months since the last MRI, so we are not sure if this mass began growing right after the MRI or just recently. After reviewing most of our options, Em and I have come to the decision to go for total resection of the new growth followed by radiation. If a 100% total resection cannot be accomplished, we will discuss other options. There is a new study being "run" right now for trying a chemotherapy for 6 months on a reoccurance, but it is a small study, and Em and I don't want to poison Ivee's body without more evidence and results of side effects. Anyone who has ever had a child go through chemotherapy knows how difficult and horrible it is, and Ivee always seems to get the side effects of drugs.
The history of her cancer shows that a 2nd dose of radiation is the most effective to treat the tumor area.
Her Spine MRI came back clear with no signs of metastatic disease.
We will meet with the surgeon in Mobile on Wednesday to discuss the fundoplication hernia. Unless it is life threatening, we will postpone any surgery to fix that, and probably have it taken care of in Memphis.
Thursday I will discuss surgery dates with the nuerosurgeons assistant and set up the tumor removal date. It will probably be done 2 to 3 weeks from now in Memphis by Dr. Boop, who is way too familiar with this cancer. He says it will not be an easy surgery, but he believes he can get it all. If he does get all the tumor, we will return home for a few weeks of healing. After that time, Ivee and I will move to Memphis to begin radiation treatments.
This is like starting over, except this time is a bit easier. We've been here before, we've made it through this. We're dealing with a smaller tumor, and hopefully none of the side effects of the first.
So, besides the obvious ways to pray for us, pray for Ethan and Britt. That we can make the best decision concerning them, our home and schooling.
As I know more I will keep you updated.
Love, Prayers, and Thanks
Hope m/o Ivee the blessed.

ivees tumor has returned. we are staying for more test.

One small step for man....

Ivee took 3 very small steps by herself last night, and then 2 small steps at school this morning. Mommy and daddy are so excited. Her balance is getting better. Her muscle control and strength is improving. She is so hesitant, but at this rate, she might be able to do a little walking by her birthday?!?! Not going to say it and claim it, but it is looking promising. 

Contrast Dye study

Friday Ivee had a contrast dye GI series done through her g button. When the dye entered the stomach, within 5 seconds you could see it begin to enter the small intestine. In less than a minute, you could see a clear definition of the small intestine. So, in conclusion...she empties EXTREMELY fast. The feeds don't stay in her stomach. The good news is no reflux was visible. The bad news...I don't know. What does the emptying mean for her? I don't know either. This does explain the huge increase in heartrate with her feeds. We don't see the gastro doc again until Feb 8, so will continue doing what we are doing. I'm not sure he'll address this emptying. I am concerned for the future though. What if she does begin to eat by mouth? What does this emptying mean for solid foods that are suppose to be broken down in the stomach? We all know digestion begins in the mouth, but I am unsure of any answers and honestly don't know if the doctor will have any. I'm also a bit concerned that her body is not absorbing the correct amount of nutrition. Many explain her small stature to the chemo, radiation, etc. But it seems that it might be affected. 
Well, that is all I have right now on this subject. Less than a week until scan day! Keep praying. 

GI doctor update

Learned somethings from Ivee's gastroenterologist visit yesterday. Will begin to address her gagging and increased heart rate during feeding times by changing the way and how much we  feed her. Friday we will take her for a contrast dye study through her g button. We want to find out where the feeds go, as in reflux as well, and how quickly that her stomach empties. All issues are do to the nissen fundoplication pyloroplasty she had 4 years ago. For those unfamiliar with the procedures, a nissen fundoplication was done to help keep her from vomiting during chemo. Due to the paralysis of her vocal chord, they were very afraid of her aspirating. She also had reflux at the time, so they did the pyloroplasty to empty the contents of her stomach quicker. This is done by increasing the size of the opening to the small intestine. 
Emmett and I have read stories of people who had nausea problems after getting a fundoplication, so we are wondering if the "backing off" of the amount during feeds is going to assist in this gagging issue. And when I say gagging, it is not like the gagging we may all see in a child who doesn't like there food. It is violent, like a bad stomach virus heaving! 
Thanks for the prayers, and pray for a good and clear scan on Friday. 

Long time...no post

I know I haven't posted in a while. All is going well right here. Ivee sees the gastroenterologist next Tuesday. We'll be checking up on her nissen-funduplocation and her reflux. She should have been watched all these years, but no one sent us to or told us to see one. We have been seeing the ENT, and he was the one who finally asked us who we took her too. Praying that she is okay, and that we can figure out what is going on with the constant gagging.
We'll be going to Memphis for her MRI check up and to have her port removed (if all is well) the last full week of January. Praying that all is clear for the MRI and that surgery goes well.
Had a great Christmas. Will probably post pictures on here, and on Facebook.
Once again, thank you for your prayers and your continued loving on our family!!!!