Some pics from the last few days

Here she is the day after surgery

This is the white board in her ICU room. Momma and Brittney decorated Ivee style. 

Today she got a bath and dressed like the Princess that she is. 

We just took her hair down for bedtime. It was very Tim Burton!!!

A Slightly Better Outlook

Well, she is talking to us this morning. Last night she wouldn't look at us, talk to us, answer our questions or even let us touch her. She would just lay there staring into space. Had us worried for so many reasons. This morning she let me lay with her and put her feet on me. (She loves to put her feet on her me and her sister) She still isn't herself, but she is at least responsive. I brought her Cinderella dress, so I told her after a bath, mommy will dress her up like the princess that she is!

They did a chest x ray last night. No fluid, but the right lung is showing hazziness, which means that it is a little collapsed in the lower part. We are doing a pressure treatment that inflates the lung and makes it work harder. Her stats (O2) were good last night. They never got below 92. So the treatment from last night helped. She has a strong cough today, but she is still very junky. We will begin the lower the pressure on the O2 again today. She hasn't had a bowel movement since last Thursday, so I have asked for a softener for two days. Actually going to get it today (even if I have to go find it) and help her out with the constipation, which is quite common for Ivee after sedation. It is very difficult for her to get going again. She is still on a steroid for inflammation at this time and zantac to counter act the side effects of the steroid. She is only puffy/swollen in her face. But for those who know her, you know she has fat cheeks anyway.

I'll keep you updated as the day progresses.

In a room...but not all is well...

Yeah...so we're in a room and we're pretty sure this kid is pissed off at us. There are no nice words for it. She just get's in a hospital funk, and you can't do much to get her out of it. About an hour ago, while my back was turned for a moment, she grabbed all the chords and just started pulling them. I turned around and they were all on her, and she had pulled the oxygen from her nose, taking the chords in her hands and flinging them about. Just going crazy. I can't blame her. It was her way of just releasing some tension!! We still can't lower her oxygen right now. Her right lung is not working at full capacity. We will have to do Chest PT tonight. That is where they beat on her chest or back to help the lung to work, and it helps to loosen secretions. They won't do this at night, but 3 times a day. Her voice is still not truly back. She is coughing a little stronger. I don't think we will be going home anytime soon. Em will be staying with us instead of going back to work. We are both concerned for her mental and phsical well being. She doesn't quite say or do the things she did before, so we are hoping that it is just the swelling on her brain and the fact that she is just so tired. 

They will probably take a chest xray tonight to confirm her lung status. She tested negative for flu and rsv. 

On another note all together. Some family and friends came by today. My Uncle Paul and Aunt Cindy surprised us with a drive thru visit. Our friend, Mike Burger, was in town for business and treated us to dinner. A new Memphis Friend, Mark Horrocks, brought us CORKYS!!!! for lunch. He has a non-profit housing and charity here to help families just like ours during this time of need. He gave us some ideas for ministry to take home. Em and I have some ideas to think over, and some things that others can assist with. 

So, we are tired, she wants to come home, but she has to get better. Please pray that we can get her lungs working. We don't want to go back to ICU. Pray that she finds her happy place and that she will realize that her mommy and daddy do love her. We appreciate you guys lifting us up in prayer. 

Morning 5 at Le Bonheur and all is going better...

Will still be in ICU for the day (at least) O2 is getting better but still far off from being allowed to go to the floor. We have begun to wean her from the oxygen feed. Is was at 60% and now she's on 40%. Soon we'll begin to lower the flow (pressure) into her nose. We began to slowly feed her yesterday a few mls an hour. She is up to almost 2 ounces an hour on the pediasure, so her strength should continue to increase.

She is beginning to speak just slightly, not quite a wisper. She's keeps saying, I want to go! Don't we all. Em and I both held her for a long time yesterday. She has been sleeping really well. Doesn't need as much suctioning as before. She is trying to sit up in bed on her own, but too weak. She is moving her head really well!

On the "IVee" side of things... She fake yawned with her hand last night to say she's tired, and this morning she told me to get out of her way cause I was blocking the tv. The night nurse said she kept blowing her kisses out the window last night. She told me to lay down in the crib with her this morning (thank goodness I can fit in there with her and that she didn't ask daddy). She wants to draw, but can't hold the pen well. She is becoming the independent Ivee we all know and love, and neurologically she is doing great!!!!

Thank you to all of our friends for your continued support. We love you guys and love hearing from you!!

*Many have asked to be tagged in a note to make sure other friends that aren't my friends see it, and then others of you just wanted to be updated. If I remember I will continue to tag you! ;)

After surgery, looking bright...

Around 10 last night, they extibated her. She is doing well, but is struggling to breathe due to the very thick secretions. She is on a pressurized oxygen tube, and 60% oxygen. We have to suction her ever so often. She can't speak, yet, can hear her make some sounds, but mainly when crying. I have learned to read her lips to try to understand what she wants. She asked for Brittney, big sister, often last night and this morning. So, she was very pleased when she came in this morning. She's asked to draw, but can't hold the pen. She just puts it i her hand and goes to sleep. She tries to sit up on her own. She just told us a moment ago she wants to go swimming. She mouthed it, but made the arm motions like she was doing a stroke in the water. 
Dr. Boop wants to keep her over night again in the ICU. This, 48 hours, is the time when the swelling of the brain is at it worst. She needs to be more stable in breathing, so in the ICU we will stay another night. We will see how it goes. MRI after-scan was clear with no signs of tumor left behind. He was concerned that her vision, right side of face, and hearing may be affected, but there have been no visible signs of deficit. Her eyes are straight and her face seems proportional.  
I don't believe we'll be going home when the nurse orginally anticipated (perhaps she didn't know the extent of the procedure.) Hopefully we'll  go home by Wednesday, cause dad has to go to work at the end of the week. 
Continue prayers, and thank you for all of your words of encouragement and support. 
love,
The Foley's 

Surgery is over and she is doing well.

She is finally rested, and sleeping in ICU. Dr. Boop believes he got it all. He said it was on the nerve that controls the right eye, and underneath the nerves that control right side facial movement and hearing. So these things might be affected. She was suppose to stay sedated, but then Tracy, the NP, came by the room and said that  Dr. Boop called from the ICU saying, "He just called me, and is very pleased. She is in the bed wide awake looking around." We thought she was suppose to be sedated. Well, she was. They couldn't get the dose to knock her back out. You could tell she was ANGRY! Wanted mommy and daddy to take her out of this joint!!! The good news, her right eye was straight and NOT turned in!!!! They have had a hard time keeping her sedated. They had a horrible time the last hour keeping her sedated. I stayed back there trying to calm her down. She has a huge tolerance for these meds. Finally had to give her a dose that would've knocked momma out for 3 days. The MRI is scheduled for 7:30 a.m. in the morning and if all is well (no signs of tumor left behind) they will take out the breathing tube and start getting her aware and hopefully pain free. And hopefully, she will go back the floor. Daddy is going to stay with her tonight in the ICU. He doesn't want to leave her alone. I am going to go with my dad and Brittney to get something that is not hospital food soon. I'm going to sleep at the Grizzly house tonight to actually get some rest. I'll be in the room tomorrow night. 

We should know by tomorrow night if we are looking at any real complications, but so far the fighting and eye are a Great sign!!!!

In the hospital...

We are settling in here on the 7th floor of Le Bonheur Hospital. The MRI didn't happen today. They are going to do it in the morning right before the surgery. Dr. Boop, Surgeon, just came in. We had a good talk. He said he is really going to take his time tomorrow, and that he wants to get ALL of it. The plan is to keep her sedated and intubated afterwards for a little while in ICU.After that, we'll wake her up and see if we are dealing with any side effects from the surgery. (ie. stroke, paralisis, facial weakness and the like). Then on Saturday we'll have another MRI to make sure he got it all! If not, he would go back in, because with her cancer, you must get it all to get the best possible outcome. Keep on praying and thank you for being there for us!!!
 

On the road again...

I could definitely wait to get on the road again!!!
Praying for safe travels, good visits, great mapping scans, and then a problem free, get it all, tumor resection on Friday!!! My God is greater, my God is stronger, my God is higher than any other. My God is healer, awesome in power!!!

Ivee was "lapping" it up in the front of the camera

Click here for Ivee's News Story

Ivee ate up the camera and water last night at her swim at the local Wellness Center. Thanks Pat, JJ, Margo, and Romie for making this happen. It was a great night, and she had a WONDERFUL swim.
On a side note, mom has realized just how southern my accent has become!

Today's the Day...the Sun is shining...the pool is clean....

I finally get to keep my promise to Ivee and take her swimming tonight. I has turned into something bigger than I expected with reporters, a private time as a family, food and more. I just wanted to keep a promise to her, but the more you can spread the word about childhood cancer and the affect it has on these children's lives...the better!!!! More media means more donations for research, I pray!!!

Yesterday was a great day! My sister, Sonia, and brother-in-law,Chris, welcomed my nephew Nathan Tyler Baughman into this world. My sister is a champ! No drugs or epidural, and the little man was trying to come out head and arm together! She was awesome and Chris was a GREAT coach for her!! Nathan was 7 lbs 7 ounces and 20 inches long. You just forget how tiny these things are!!!! It was so nice to get our minds on this happy time and forget about Ivee's upcoming surgery for the day! Can't  wait to see him Sunday, bathed and clean!

Tall doctor with an accent said WHAT?

I am a little more than frustrated. Some doctors just grate on my nerves. Went to the GI doctor, after having talked to the surgeon about her stomach last week. He said he would Email the GI and they would come up with a plan to treat this medically. When the GI doctor came in, he had to read all over the notes trying to find out what was going on. I'm thinking to myself, "Shouldn't you have read over this before you came in the room?" Then as he begins to talk, I have to fill in the blanks with what the surgeon said. Then I have to "remind" him of what we discussed last visit. He then preceeds to draw diagrams of stuff, not really knowing how to explain it. I already knew what he was talking about, so we could've skipped this part. Then he tells me of a medicine we can try for her stomach, that is a antihistamine, but blocks the sensitivity of the fundus (a part of the stomach). Or maybe we could try giving her feeds at night, which is something he didn't want to do last time. (That is when I asked if it would be better for her). Sooo...now I get to decide what we should do. Really?!?!! Me? I have a medical degree now? Well, by now I probably could ace certain parts of their testing!!! So, I don't really know what to do. I'm going to think about it. Since brain surgery is coming in less than two weeks, I'm going to try to not fret about it. It can just be so frustrating. You like one doctor (surgeon) and then think that when you get in to the GI doctor something, some kind of game plan would be ready to go. I can't stand an "unprepared" doctor. Yeah, I know your busy, but the Contrast Dye was done more than 2 weeks ago. You can't take 5 minutes to read a report and make a decision the week before you see the patient. And his HANDWRITING!!!! I won't even go there. I know it may be rude, because he is writing notes for me to take home, but as he talks I take my own notes. I just can't read that chicken scratch.
That is it with the venting. I just feel the tension building in my neck. I've got enough anxiety right now, that this visit just didn't help. I am trying to not let to much of my stress out, but sometimes I think I can just imagine my head opening up and my brain screaming. I can feel it welling up behind my forehead.
Sorry...I'm done.
Keep praying and bless you all.
Hope m/o Ivee the blessed.  

Surgery details...

Surgery is scheduled for Friday, February 18th at Le Bonheur hospital in Memphis, under the skillful hands of Dr. Fredrick Boop. I have only heard good things about him, and he has performed many, many surgeries on many tumors, including Ivee's. He knows the importance of getting every bit of it out of her head.
I will be heading up early to get her preadmitted on Thursday so that they can make a 3D image of her head doing a stealth craniotomy. This is the best way for the doctor to decide the best course of action during the procedure.
We are asking for prayers for discernment, steady hands, a watchful eye, and fatigue for the medical team. We are already thanking God for a smaller mass to deal with this time, and praying for NO side effects from the procedure. The Great and Ultimate Physician can do all things.  

*On a side note, God has provided a pool for us to finally take Ivee swimming in. She only waited 3 months for her mom to get her act together. I don't feel so guilty now. Thank you Pat, JJ and those in Bay Minette and the wellness center that are making this happen.  

Hernia update

We meet the new Pediatric Surgeon for USA, Dr. Daniel Beals, and must say I liked him. He reviewed Ivee's scans from her contrast dye GI series. He has concluded that she doesn't have a typical hernia, but one where the top portion of the fundoplication has entered the chest cavity. So, in other words, we are not looking at anything threatening at this time. However, he did note that she is dealing with gastric dismotility/gastroparesis. This is where the stomach doesn't want to "move" it's contents. So we may be looking at 2 instances. 1. The heaving may be caused from the hernia. He wants to try approaching the problem medically at first, perhaps putting her on a medicine to promote movement in the stomach. OR 2. The hernia may have been caused by the heaving. Which could still be the gastroparesis, or we are looking at something neurological.
So, in less words...No hernia surgery for now, going to treat medically and just worry about the reoccurance and radiation for now. We will see the GI doctor on Tuesday, who should have talked to surgeon all about this by then.
Thanks for the prayers!!!

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!!!!