12 more days...Florida isn't far away

Hold on, this is a long post!

We are all excited about our trip to Orlando and Disney in 12 days, but I am a bit anxious as well! Ivee is still having gagging/heaving in the mornings, and sometimes throughout the day. She also still has the fluid build-up in the back of her head. She still shows no signs of shunt malfunction, but I stay concerned! I believe the gagging/heaving is stemming from constant drainage, and since she has a difficult time with swallowing, it is leading to the issues. Unfortunately, Ivee has a paraesophageal hernia, and the heaving really does a number on her little tummy that has been through the horrors of a nissen fundoplication pyloroplasty surgery. She also has been complaining on and off about her back hurting, and though I'm not overly concerned, it's always there in my mind. (Since her cancer can grow in the spine as well!) I am going to take her to her pediatrician today or tomorrow, I hope, to try to get her some relief from the drainage issues before we take her on her MAW trip.
On a good note, she is doing well! She is walking with the walker better, wanting to walk more, she has finally gained weight on a constant bases (there was a whole year + where she didn't grow at all in weight or height), and she is learning how to potty train. The potty training is taking effort on mommy and everyone's part. She doesn't have a great "warning" mechanism, so we ask her all the time, and many time she concentrates and tries to go. She has a few accidents here and there, but we all know this is going to be a long work in progress, like everything else in Ivee's life.
A funny Ivee story from the other night. She doesn't like to eat by mouth, and struggles with doing so, but sometimes she asked to eat. 2 night ago she said, "I'm Hungry." Here is the conversation that transpired.
I asked, "What do you want?"
"Chocolate pudding."
I thought to myself, "Great, I know we probably don't have any in the fridge." I looked and all I could find in there was vanilla. So, I held it out and showed her and said, "Ivee, all I have is vanilla."
She gingerly sang, "Chooocooolate."
I gingerly returned, "We don't have chocolate, all I have is vanilla. Is that okay."
She shook her head telling me no.
I said then, "Ivee, I don't have chocolate."
Then she cocked that little head to the side and said Oh, so sweetly, "Go get some!"
Well, after I stopped laughing, I found some mix in the pantry and made it myself! She manage to take 5 small bites...baby steps!
Today, our St. Jude friend, Brandon, has his MRI. Praying for great results for him and praying that God has shrunk or completely killed all of Brandon's tumor! Many other St. Jude friends are returning for treatments of chemo soon. Praying for Haley, Lucy, Justin and Allyson!
We return to Memphis on June 24th for Ivee's check up and MRI. Praying for NERD (No Evidence of Recurrent Disease)!!!

On a final note, this is copied from a friends CB site. If you can find the time, please help to make our lawmakers aware! I will typing my own letter about Ivee and making the government aware of my child!!!

More funding is needed for childhood cancer research.  Funding was cut this year by 10% when the NCI (National Cancer Institute) budget was cut by the federal government.  NCI funds the COG (Children's Oncology Group) hospitals where over 90% of all children with cancer are treated.  COG hospitals develop treatment protocols and carry out research important to development of new and innovative curative therapy.  There is a way that you can help to urge your senator to increase funding for childhood cancer in the 2012 fiscal year. All you need to do is ask your senator to sign-onto the letter that has already been sent to their office by Senators Reed and Isakson.  This letter is asking the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. 
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 was passed unanimously by the senate and appropriated 30 million dollars a year toward funding efforts for childhood cancer.  The funding was for fiscal years 2009-2013.  Even though the Act was passed unanimously the appropriated funds have never been allocated as promised.  The Senate Appropriations Committee has never voted to fully give the allocated funds from the budget.  In 2009 there was no funds allocated. In 2010 only 4 million was allocated but none went toward funding research.  The 2011 allocations were difficult to find but might have been 10 million and I wasn't able to determine where the funding went. 
How can you help to convince the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008? By asking your senator to sign-onto the letter written by Senators Reed and Isakson.  In your letter make sure that you state that you are a constituent.  State why you are supporting funding for pediatric cancer.  Reference the letter written by Senators Reed and Isakson.  You can attach the 2 page document if possible in your email.  I posted the link to the PDF file below.  Give your address and ask to be informed of their decision.
There isn't a lot of time since this letter needs to be signed by your senator by June 8th. 
If you are reading this then I know you have an interest in finding a cure for childhood cancer.  I have sent the letter below to both my senators today.  Feel free to use parts of my letter to send to your senators.  I read a blog today that said in 2010 more money was allocated by our government to help fish migrate than to find a cure for childhood cancer. Does that mean that our leaders think fish are more important than our children?  Let our leaders know what is important by sending your senators a letter today. 


My letter follows:

Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. Your office has recently been sent a two-page correspondence from Senators Reed and Isakson. I would like to urge you, as my senator, to sign-onto this letter.
As a mother of a child who was diagnosed with cancer, I am frightfully aware that more funding is needed.  My son, James, was diagnosed with a common form of childhood cancer, yet his odds of 3-year survival are listed at only 48%. There are many children with far worse odds than my son.  If he had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) he would only have a 1% chance of survival. It is clear that advancement in treatment of childhood cancer is greatly needed. 2/3 of children who survive have long-term debilitating side effects from treatment. Some of those side effects are fatal.  Cancer remains the leading cause of death by disease for children in America.  Every year 15,000 children are diagnosed and more than 2,000 children lose their battle.  As your constituent, I ask that you sign-onto this letter addressed to Chairman Harkin and Ranking member Shelby of the Appropriations Subcommittee for Labor, HHS, Education and Related agencies.  The letter requests the appropriation of funds consistent with the goals of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (P.L. 110-285). The letter requests funding from the 2012 fiscal year budget for childhood cancer research, surveillance, and educational programs. The NCI (National Cancer institute) consistently spends less than 5% of its annual budget on childhood cancer research and publicly states that more could be done on its website. The letter asks the appropriations committee to provide funds for NCI to increase research efforts for childhood cancer. 
To sign, contact Kate Mevis with Senator Reed at Kate_Mevis@Reed.Senate.Gov or Tyler Thompson with Senator Isakson at Tyler_Thompson@Isakson.Senate.Gov by June 8th 2011.
You can download the PDF file of the letter at 
http://curechildhoodcancer.ning.com/forum/attachment/download?id=2253982%3AUploadedFile%3A116271
Please inform me regarding your decision about signing the letter.  My address is 3300 Morning Star Drive, Helena MT 59602.

I hope you can find time to help with this.

Update from HOME>>>>>

Ending of a great Mother's Day and a sweet little girls 5th birthday!!! My baby is 5!!!!!!! I can't believe that she is already 5, but Oh God, how thankful I am that she is!!! We are getting settled back in at home, and I forgot how difficult it can be. I am a come home and get everything unpacked and everything needs to be in it's place kinda person..BUT...reality has a bite! After scrambling to get the kitchen cleared of our boxes from Memphis and cleaned up, I realized that I am not necessarily in need of being needed....but that I am definitely needed around here! My house is usually what I call "organized chaous" but not everything is where it should be, toilets were not clean and food was on the kitchen walls. LET ME STATE, however, I do not personally hold my husband responsible. My kids know to keep their rooms and bathrooms clean, they know how to clean up the kitchen and how to throw trash away. They just didn't have someone on their case about it, so they didn't care. Daddy would tell them to do things, but he works a fulltime job, planted the garden, made sure the dogs, cat, turtles and chickens didn't die, did feed my kids, and he can't always do the follow up to make sure they cleaned things the correct way. Just goes to show you that no matter what age they are, most kids really don't care about anything until they are the ones that pay for it or own it! My sister was a prime example of that...she was a slob as a kid, but now in her life or marriage, kids and working, she is a great mom/wife. So, my kids aren't perfect, and I will be back on the nag train this week. School will be out in 3 weeks, so I will make up for missing the Spring Cleaning around here.  I will begin the unpacking process tomorrow when the kids go off to school. It will be nice to get all the suitcases and boxes put away, at least for 6 weeks when we'll go back for her follow up MRI and visits. 
I did get hit with alot of things I wasn't prepared for this week. Like a "surprise" choral concert for Brittney that she just found out about this past Tuesday, vet visits on Tuesday for my dogs and an orthodontist appointment for Britt on Thursday. And I thought I would have a week to settle back in. I hope the homework load is easy this week! 
Ivee is doing well, and as of yesterday didn't want to go to school on Monday. She wanted to stay home with momma!!! As of tonight, she wanted to go to school to see Ms. Brooks (her teacher). She only has the 3 weeks left, so as much as I will probably miss her, I want her to go and be with her friends and get in lots of play time, therapy, and learnin'!!! 
I am getting really excited about Ivee's make a wish trip in June. She is so excited about "swimming at Disney World." We'll hopefully be having her wish party soon. I think it is going to be a great and very well deserved trip for our family. 
Well, I have to go finish the laundry and prepare for cleaning and doing yardwork this week. Continue to pray for Ivee's continued healing. God give her renewed health. 
God bless you all....Hope
"Heal me, Oh Lord, and I will be healed.
Save me and I will be saved.
For you are the one I praise."
Jeremiah 17:14

2 more days of 2nd dose RT

Yes, two more days, and we are excited. Today was a long day and Ivee didn't really feel like cooperating. Tomorrow we start a late day, not until 11:30. She has a longer sedation time cause she has an MRI following her radiation treatment. Then a surprise for her, hopefully all will go right and Daddy will be coming up tomorrow afternoon. We saw Dr. Merchant today and he is happy with Ivee's progress. He watched her walking out the door today, leaving me behind and she took the nurse and ran off, and he just watched her and said, "She is doing so well. Really walking well and seeming like she is fine." He continued to to say, once again, how nervous it makes him to do 2nd dose radiation, mainly cause of the detrimental effects it can have on breaking down tissue and veins in the brain, and the deficits it can cause developmentally. He is just very pleased that Ivee doesn't seem to be showing any signs of deficits right now. That is what we are continuing to pray for. If I haven't said it before, I'll say it now...I love THAT MAN!!! He is a great doctor, who truly, genuinely, and absolutely has a desire to save my child, but not only that, to give her the best life possible after doing so. He is a blessing from God, and Ivee adores him as well. I'm sure he has a soft spot for her as well, as he has shown in many office visits.
Ivee does have an MRI tomorrow, where we not only will be checking for tumor, but mostly checking for tissue breakdown or weaknesses. Please, send up a prayer that Ivee's little brain, veins, and everything in there look healthy as possible. She has already suffered damage from past surgeries and treatments and has severe scarring in there as well. I'm praying that there is nothing new....at all!!!!!
Also, praying for safe travels for daddy tomorrow and safe travels for all 3 of us Friday. It is always strange to come back home after being gone for 2 months. It almost feels foreign, and then everyone has to all learn to live together under one roof again. Back to the old grind after developing new habits.
On a separate thought tonight, lift up a prayer for my friend Tony Shoemaker. His beautiful and wonderful wife Dee passed away today after battling chronic pain for a few years from a car wreak. She was the sweetest lady and one of the first people to introduce herself and make me feel welcome at our church.
That is all from the Foley's for now. Always many thoughts rambling around in this head of mine, but I can't put it all out there, especially since you don't want to hear them all and some might make you wonder what kind of mind I actually have....it is a bit insane in there at times.
Love from Hope and Ivee
"Heal me, Oh Lord, and I will be healed. Save me and I will be saved. For you are the one I praise." Jeremiah 17:14

T Shirt Orders

Ordering the tshirts this weekend. So, order now if you want one. Click the link Team Ivee logo to the right.