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!!!!

All DONE!!!!!!!!!!

   Ivee is out of her cast, and a much happier but no less demanding little girl. I will upload some pictures and perhaps some video soon. She's been able to crawl a little bit, but she is weak and unstable. Mommy did a little PT with her this morning. I will get more aggressive with her as the days come.

Update...long time no see

Same old same old, so nothing new to report. We have one week until the cast comes off. We hit a wall last week, but Em got a sitter and took me out last Friday night. We are all definitly ready for this to be over. Thanks for the prayers and support

Ivee's adjusting better than we imagined. She takes being stuck in a body cast like a champ. Nights are a bit rough, waking up alot, probably achy! (Nights are always worse when your sore, sick or recovering). Friday is her 1st post-op surgery. We'll ask to have some of her cast removed so we can get to her gbutton more easily. It's better to feed her propped up, but when you prop her, the g button is almost impossible to get to. She slips to low into the cast.
Well, she asking to be moved again, gotta go.

Ivee was released from children's on Friday evening, so we stayed in the hotel that night. We got home Saturday around lunch time, and she has been very happy to be here! We are all adjusting to her situation and WEIGHT! She is quite heavy right now. It's like picking up a log, so now I call her Pinocchio!!!

Headed home from birmingham. Praying for a safe a stress free ride home in her new harness.

Ivee is contently watching UP from her hospital bed, lying next to daddy. She is not too fond of the RED cast (she chose the color) going from chest to foot. It's to the foot on the right and to the knee on the left. She's once again proving what a strong girl she is. Hardly any complaining at all. She is so amazing.

Ivee's in surgery now

Ivee and Recovery

So, a friend posted a question wondering what Ivee will be able to do during recovery. I am not sure at this time, but can speculate. She will be in a full body cast from chest to toes, in a sitting type position. It will probably require that she be propped up though. She will have full use of her arms, so I believe I'll be investing in some kind of table that could somehow fit over her legs. That way she can do puzzles, draw, color and the like. I'm praying that this is the case. Once again, I'm not completely sure what position the cast will have her in.
Another question/s asked of me lately is "What about going to the bathroom? Or feeding her through her g tube?" Good questions! They will leave the "diaper" area open for us to change her. They will also leave an opening around her button for feeds. Of course, NO to baths, so I guess a good wipe down every night. My plan, for now, is to still take her to school periodically. I will stay there and help her out. Her teacher will have her hands full enough with the other kids to have to worry about Ivee falling over. We will see what we can really do once we are home.
Thanks for caring and checking in!!! We love you all and covet your prayers!

Swallow Study

     Ivee made it through swallow study with the promise of the purchase of a new dress, which will have to be bought tomorrow cause Walmart had NOTHIN!!! She passed most of the test. On liquids, it puddles on the vocal chords, then after a few swallows, most clears. Some remained. On thin feeds (ei apple sauce, soups, yogurt consistency) she aspirated just a little bit, but we saw it. On th...icker foods (ei. p'nut butter, Pudding, refried beans consistency) she got it down all at once fine. So, drinking without a straw and thinker foods that stay together are the recommendations for now. Em and I aren't too worried, but she does tend to cough here and there when eating. It's been 2 1/2 years since her last study, and in the time we have feed her and given her drinks by mouth. She has never had a fever, severe cough, chest congestion or anything that lead us to believe that she had problems with aspiration. Never had pneumonia or other pulmonary issues.
     SO.....as her ENT at St. Jude, Dr. Thompson (who by the way also has a paralyzed vocal chord), says, "I love coffee. I aspirate it everyday, but it hasn't stopped me from drinking it." I guess what he means by that is...when she learns to love the food and gets more practice in swallowing and using those muscles, we won't be able to stop her.
     Hip surgery is only 9 days away. I don't seem to be able to go to sleep too well knowing what all I need to get done with the house, kids, and details. The mind just keeps running and running. Then I keep thinking about what we are going to do with Ivee. I don't stress out too much, and usually I internalize it. BUT lately I see myself snipping at others. Trying to keep it in check!!! It doesn't help my attitude when Ethan and Brittney are at each other lately. Ethan also has homework from the time he gets home and goes to bed. Brittney has two projects due this week. Hoping the week of the surgery things will slack off for them since we won't be home. Thank the Lord, once again, for our neice Erin. She is keeping them again for us. She is awesome!!!!!!!

A few more cruise pics

Our 6 person platter from Chen Rio

He tasted sooooo good! Really. And not I didn't eat the face.

YMCA

Em and McCall goofing it up at Chen Rio

Mexico and Surgery

Em and I had a wonderful time on our Cruise. A great rest before Ivee's surgery. Here's a few pictures and then I'll share the surgery information.

Dinner at night on the boat. Em, Catina and McCall in the Imagination dining room.

In the Atrium of the boat!

The Atrium from the top floor looking down.

Enjoying the kid free area of the Lido deck.

Before Formal night in the dining room.

Cozumel Mexico!!! Ahhhhh

Catina and Hope's feet in the Gulf of Mexico!!!

Em trying to command ownership of an old coral reef off the beach.

Chen Rio...LUNCH!!!

The beach!

Lunch time at Chen Rio

The wonderful, many colors of the water in Cozumel.

Catina and McCall Snorkleing

Tulum ruins in Mexico

Em and iguana

Playa Del Carman

Our Cruise Director Fileppe' after the Groove for St. Jude party on the boat. Carnival cruise lines is raising money for St. Jude right now!!!

Ivee's surgery is Thursday, Sept. 23rd at UAB. She'll be in the hospital for 2 to 3 days, and in a body cast for 6 weeks. So, from the end of Sept to the beginning of November, the Foleys will be needing prayers!

It's Tomorrow

So, tomorrow I send Brittney and Ethan off to public school. Brittney for the first time in 7 years, Ethan for the first time ever. I think he is excited. Britt is a bit nervous and scared! Mom is a bit sad. Ivee will be a bit mad, for I am not taking her tomorrow. I'm ready for a temper tantrum once I drop Ethan off, and she doesn't go in to the building next door. She only goes Tuesday to Friday, so she won't be in tomorrow. Gotta have speech on one day of the week! So, I am heading to bed to get them up early. This is definitly something they have to get used to!!! Ethan made himself a list tonight of everything he needs to do in the morning. Praying for my boy, that he will be able to keep up, succeed, and find many new friends/ no enemies!! (If you know what I mean.) He has a big heart, and is my goof ball, but some kids can be mean. Time for him to get a taste of life outside of church friends. Brittney is just scared of the unknown. I know she'll make friends and good decisions. We've had quite a few talks about this new mission field she is entering. Recently she learned not to "read a book by it's cover!" No matter what the "outside" package looks like, you can't judge the heart. Actions speak loud. Silence sometimes speaks louder! She is my talker, but hopefully God will keep her mouth in check. I have reminded her to respect her teachers and they will like her just fine. I have told Ethan to respect his teachers or he's going to have a meeting with my hand on his behind :)
Well, that is the Foley Family's next step. Em and I are leaving on a cruise to Mexico next week. When I scheduled it I thought the kids would have 2 good weeks of school behind them, but it started a week later than I had anticipated. I'm looking forward to our time alone, but it does make me a bit anxious to leave them all behind. (Esp. being that we are at sea and not easily contactable... is that a word?) I've been out of school 17 years, it becomes rusty :) Next step when home from vacation.....schedule Ivee's hip surgery...YUCK!!!

Another Step

After homeschooling my kids for three years, today I go register them for public school. Yuck! A big part of me wants to keep them at home. I will completely miss my kids. But, part of me knows this is what they need. Ethan really needs to be around boys. He said he wants to continue to be homeschooled, but I think he will really enjoy making friends. He is so sociable! Britt is really nervous about going to high school. We have tried to prepare her mind and heart for what she is walking into, and what all she is going to see and hear. After private education and homeschooling, my kids are pretty sheltered. What I think I have taught Britt is that this next step is doing what she has prepared for all these years. She is stepping out into the mission field!!!! She is trying not to be anxious, but starting something new can always be scary!!!
So, today is just another step in out lives. Ivee is ready to go back to school. She has missed her teacher and she likes to play. She doesn't care too much for the other kids. She finally "allowed" them to play with her towards the end of the year. I think they babied her at first, and she didn't like that. It's hard when you are 4 and the size of a 2 1/2 year old. They all think she is so cute, and she uses a walker, so they think she needs everyones help.
So, today the Foley's take a step on a new adventure. We'll see where this road takes us!