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

Tuesday, December 11, 2007

Well, all went well this weekend. Ethan came home sick from Jacksonville, FL with a fever and vomiting. He didn't want to eat today at all. He looks so sick in his eyes. He just laid around all day today. I just pray he's better tomorrow.
I'm attaching a video of Ivee in her favorite place...the tub. I'm headed to bed now. Hope you enjoy.

2 comments:

Anonymous said...: Hope - So sorry for the long time since my last comment. School has been a bigger challenge than I had anticipated and my life has been a little more crazy than usual because of that. I have been reading the blogs though. I love the video. She looks so happy!! Such a drastic change from last year. What does she think about Christmas so far - the lights and trees and such? Mackenzie loves everything - a little too much. She has broken several of my "Snoopy" musical ornaments. But that is what super glue is for - right! I have been trying to get my son potty trained. He is three and should have already been trained but he just doesn't want to give up pull ups. They are just so much easier. Here is a funndy - yesterday I pick him up from school and they tell me he got completely naked on the playground! I still don't know what that is about but I just have to shake my head and move on. I am one of those parents I use to talk about before I had children. I joke that I am surviving parenthood! My children are a blessing and most days I keep that in the forefront of my thought processes. Some days, like when Nate floods the bathroom floor with water from the sink when I am trying to walk out the door to get to get to work, I forget that for a few moments. I LOVE my kids...please don't get me wrong. Do you remember one of my first comments... about the lady in Panera Bread who suggested I read Nanny 911. I laugh about that sometimes (i laugh so i won't cry)! The daycare director was suggesting another book about the strong willed child to me yesterday. Ya think she was trying to tell me something. I told her I could read that in my spare time HAHA as if! Anyway...now that I have completely unloaded on you! Many blessings! I hope your son feels much better tommorrow and I am so glad your baby is so much better. Paula; Wednesday, December 12, 2007 10:53:00 PM
Anonymous said...: Hope, I love the videos! Ivee is so pretty! I love being able to keep up with how she & your family are doing. I check often and have been praying for her & your family. So thankful she is doing well. She has been on our prayer list in Sunday school-at Dauphin Way Baptist Church.
To remind you who I am--I'm a very good friend of Theresa Vaughan's. (don't want to say-"Was") Because I always will be--even though she passed away a year ago. I miss her very much. Gwen knows who I am. I saw you & Ivee at Olive Garden once. I was with Alma. (Keith's Aunt)
Hugs & Merry Christmas, Mary Ellen Parker; Thursday, December 13, 2007 8:02:00 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!

About Me

Tuesday, December 11, 2007

2 comments: