We've moved

Friday, January 12, 2007

We've moved

We still don't know the results of her test from yesterday, but we have already moved to the chemotherapy floor, room 420. So, our new phone number is 415-1420. She will probably begin chemo Sunday. We have to wait 48 hours post fever. She is doing well today. She's off oxygen. She also did a swallowing test today. She actually is swallowing some now, it is erratic, but it was there. The speech therapist was pleased, and wants to feed her 15 ccs of water by mouth twice a day, cause that is the best way to practice. Plus, water is safe in case she aspirates some of it.

8 comments:

Anonymous said...: Hello Hope, So you guys are moving on up! That has to be good that they moved her already. They must be thinking she will be ok for the chemo. I gotta say I don't know how you are doing this. I was thinking how I wanted to read your blog today and it be a great report - I hated not to know about the test but it was good that she has improved so much. I am waiting on the day when you can blog she is healed - no more cancer. I am like a kid waiting for Christmas I guess. I know it is coming but it is hard to wait for it to get here. God reminded me tonight that "Faith is the substance of things hoped for, the evidence of things not seen" and "without faith it is impossible to please Him." When it is up to God we can rest easy no matter what today says because "His promises are yes and Amen". By His stripes we are healed - He said it and we can have faith that it will come to pass. I hope you & Ivee have a Good Night! In Christ, Paula Casallo; Friday, January 12, 2007 9:28:00 PM
Anonymous said...: Hello Hope, So you guys are moving on up! That has to be good that they moved her already. They must be thinking she will be ok for the chemo. I gotta say I don't know how you are doing this. I was thinking how I wanted to read your blog today and it be a great report - I hated not to know about the test but it was good that she has improved so much. I am waiting on the day when you can blog she is healed - no more cancer. I am like a kid waiting for Christmas I guess. I know it is coming but it is hard to wait for it to get here. God reminded me tonight that "Faith is the substance of things hoped for, the evidence of things not seen" and "without faith it is impossible to please Him." When it is up to God we can rest easy no matter what today says because "His promises are yes and Amen". By His stripes we are healed - He said it and we can have faith that it will come to pass. I hope you & Ivee have a Good Night! In Christ, Paula Casallo; Friday, January 12, 2007 9:28:00 PM
Anonymous said...: Opps, Sorry I hit the login button twice.; Friday, January 12, 2007 9:29:00 PM
Anonymous said...: Hello Foley family. My name is Melissa Johnson, and I work in the Treehouse at USACW. I just wanted to let you know that your story is inspiring to read, many people in your postition would be angry with God and ya'll have put all your trust in the Lord. I know things are hard for you now but know that if you ever need anything while you are at the hospital please let me know because I am here with you Tues-Sat in the Treehouse. God bless you and your family and may he make Ivee's recovery swift.
Melissa; Saturday, January 13, 2007 10:57:00 AM
Anonymous said...: Hope, it was so good to see you guys the other day. I'm glad I came on Thursday because I spent all morning on Friday at the ER with Ian - he has bronchitis and his 4th ear infection in about 3 months... Needless to say, we are not in Georgia this weekend, but I think we can still try to work out getting Britt and Ethan next weekend for a bit. Although I hate the idea of Ivee having to go through chemo, I'm glad they feel she will be able to start it soon. The sooner they start it, the sooner she'll be finished with it.

I know this post is skipping around a lot, but it is so AWESOME to me to read comments on this blog from people who never have met you, but are moved by your story, and inspired by your faith in God. Again, what an amazing way God is using you and your family. And how amazing is your strength! I love you, girl! And hugs to all the family!; Saturday, January 13, 2007 11:20:00 AM
Anonymous said...: Just wanted you to know my family and I are still checking on you and yours. Ya'll are still in our daily prayers!
Love you,
Laura; Saturday, January 13, 2007 7:36:00 PM
Anonymous said...: Hope,
I am inspired by your positive attitude and praise to God for every good sign! We are still praying for complete healing for Ivee!!
Love,
Mary Ann Logan and family; Saturday, January 13, 2007 8:32:00 PM
Anonymous said...: I was forwarded your blog and have since then forwarded it onto other prayer chains. Alot of people are praying for sweet little Ivie. Please know that your entire family is in my prayers.
Much love, Dee Ray - Fairhope; Sunday, January 14, 2007 2:06:00 PM

Ivee's story in SHORT...As if....

Ivee is a tough little girl. And with our help and by the grace of God, all will go well. We pray for a complete healing, and we know that our God is big enough...He is the Great Physician.

Story: On a routine Monday, December 18, 2006. I was missing work and taking my oldest daughter to the doctor cause of a stomach virus. Stopping at a grocery store on the way, I left the oldest in the car for a moment and ran inside with Ivee. I put her car seat on top of the grocery cart as so many of us mom's do. Leaving the store, I turned for a brief moment to throw something away. I turned around just in time to see the entire car seat fall face down on the concrete. I flipped, as any mom with a 7 month old falling face first would do. I arrived at the ER in record time. She already had a huge knot rising on her forehead. As they (eventually) started a CT scan, I felt God speaking to my heart. In all but audible words he told me she would be fine, but that we would find something else, that this was why she had fallen, so He could reveal it to us. So, as I watched from the tech room, I saw something that even to me, a non-trained observer, knew was not suppose to be there. A friend of mine was the radiologist there, and he confirmed, also by doing an MRI, what I suspected. I was at peace in spirit cause my heart had been prepared...but not okay. My husband was working out in Texas and would have to drive more than 7 hours to come home, not knowing what was happening, but just that she fell. Ivee was transferred to a local children's hospital in Mobile. That night, Dr. Martino consulted, and would run an MRI the next day of his own, and perform surgery on that Wednesday. On December 20, after 5 hours of surgery, all was successful, and Dr. Martino removed 98% of what he knew was an egg sized malignant tumor, later diagnosed as Stage 3 Anaplastic Ependymoma. The remaining 2 cm was on her artery next to the spinal chord.

Deficits from initial resection/treatment: Ivee had many deficits due to the tumors removal, even though he was able to leave her nerves in tack. Her right eye was severely crossed. Her vocal chords were paralyzed (left has regained use). Her hearing was affected (loss at 2000 hz and high frequency sounds). Hearing aids received June 6, 2012 at age 6. Have already hear improvement in F, S and ending sounds in 2 days time! Her balance was never truly restored, and she has left side body weakness. After 30 days (including Christmas) we were allowed to take Ivee home. She had 6 months of chemo and then 33 treatments of radiation at St. Jude.

Procedures/surgeries:

1.) Tumor Resection (12/06) – Anaplastic Ependymoma

2.) Gbutton placed for eating. (01/07)

3.) Nissen fundiplication pyloroplasty done (wrapping of throat & stomach) (01/07)

4.) Chemotherapy Begins (01/07)

5.) 5 central lines placed (many fell out on their own) (01/07 – 05/07)

6.) Port placed at St. Jude (06/07)

7.) Chemotherapy ends (06/07)

8.) Radiation (06/07-08/07)

9.) Rare scar tissue formation in the brain removed (09/08)

10.) Shunt Placement (10/08)

11.) Shunt revision/replacement (02/10)

12.) Hip Displaysia surgery – Dega Osteotomy {Not tumor related} (10/10)

13.) Reoccurance - GTR {Gross Total Resection} (02/11)

We were shocked (as was the doctor) when her Jan. 2011 scan showed a reoccurance. It was on the same artery where the orginal tumor was left behind. GTR was done on February 18^th with much success. 2^nd dosing of radiation began March 28 and ended May 6, 30 doses.

14. Begin 2nd dose radiation on March 28 (30 doses) Ended on May 6, 2011.

Improvements:

1.) Right eye is still weak, doesn't require glasses yet. Patching the good eye to strengthen the right one.

2.) Right vocal chord is still partial paralyzed. In Fall of 2008 , to the doctor's dismay, discovered she has received movement again in right chord (update: Since resection in 2/11, Right vocal chord is completely paralyzed, no movement now)

3.) Still G Button feed. Cannot eat much by mouth. She doesn’t have the drive to try to eat, but we are treating her with an appetite enhancer. She has been approved through Modified Barium Swallow Test.

4.) Balance is still and issue. Has improved over the years. Uses a walker and wheelchair.

5.) Has learned to stand (assisted) for a few moments by herself and take some steps/usually across a room (May 2012). Uses a walker VERY WELL!!

6.) Currently watching a paraesophageal hernia of the fundoplication. No surgery required at this time.

7.) Non-cancer related surgery due to hip dysplasia in Fall of 2010. Has improved her balance and slipping out of socket.

Currently:

She is doing very well! She attended K5 full-time with a personal aid (might repeat K5). She is very smart and attentative. She used her walker often throughout the day and is learning to take independent steps. She takes a little bit of something to eat everyday now instead of once a week! She has learned to drink larger portions at a time. Enjoys Hippotherapy (horse therapy). Is extremely observant, caring and just down right funny!

The Foley Family - Trusting in God at ALL Times!!!

About Me

Friday, January 12, 2007

We've moved

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