The Foley Family - Trusting in God at ALL Times!!!: July 2011

Thursday, July 21, 2011

Team Ivee shirts

Going to place another Team Ivee shirt order soon. If you didn't order yours last time and want one now, please see the link to the right on this page for information. If you choose not to use paypal, you can mail a check to me instead. Just let me know, and I'll get you my info.

So...about Ivee's issues...

SOMETHING is going to happen.
After a long day of phone calls, looks like we'll be headed back to Memphis the first part of August to address Ivee's stomach/hernia/heaving and head swelling. It is so great to have a doctor (that after talking to his nurse and her relaying the info I gave her) had her call back immediately cause he wants her up there and this taken care of once and for all! He's tired of the run around and "no idea" answers I've been getting back here at home. So thankful to feel like we are getting pushed up on a priority list instead of pushed to the side cause she has something no one wants to deal with.

Wednesday, July 20, 2011

And so she goes, and goes.....Thank Goodness

Yes, Ivee has been doing so well with her potty training. 3 days in a row now and no real accidents. She's just had what I call the occasional 'Peed in my pants from laughing to hard (or sneezed)' spot. Some of my "older" friends know what I'm saying :). She looks so very well. She is becoming a typical 5 year old, with sassy comments and occasional hissy fits, especially during PT. She is doing hippotherapy (PT with horses), and she's been 4 times now. All 4 times the therapist hasn't gone more than 20 - 30 minutes before a meltdown. The sessions have gotten better (attitude wise) each time, but Ivee still shows that stubborn behind of hers each and every time. It's amazing that they can throw the biggest fits about the easiest things. Things that I can get her to do without throwing a big one, but the minute a therapist touches her all the crap hits the fan. I always said from the very beginning that Ivee could smell a therapist driving up the road, and she let you know before they even touched her that she wasn't going to cooperate.
Now, on to the issues she's still having. The hernia is just giving her so many problems right now. I have noticed the lump in her belly has gotten larger the last few days. She's is gagging more frequently, and for longer periods of time. It was just in the morning time and only for a minute or so. Now it seems to last over a span of 30 minutes and comes and goes throughout the day. Last night, Brittney said she was up quite a few times with her. Poor Brittney stays with her at night. She's such a good big sister. I am trying to get Ivee in with a different GI doctor, being that the one I took her to before hasn't been very helpful. Hoping to get some answers, cause everything they thought it might be and all the treatments to eleviate the issue...it hasn't worked.
The kids and I are leaving for Jacksonville with my younger sister and her 3 kids this Sunday to go see my older sister. 8 people in the car, one a baby, should make for an interesting drive!
Keep praying for Ivee and that the GI issues will be solved soon!!!

Friday, July 08, 2011

We need your VOTE!!!!!

Please take a moment and visit the link below to cast your VOTE! Help Ivee and other children get the money to help continue researching pediatric cancer! EVERYDAY...TODAY...46 children will be diagnosed with cancer and 7 children will lose their battle to it!!! It only takes a moment, please vote. We are 5,000 votes behind the lead charity.

http://www.vivint.com/givesbackproject/charity/1262

Friday, July 01, 2011

Ivee meets the dinosaur of her dreams!!!

http://www.youtube.com/watch?v=X-we8HVtAXs&feature=youtube_gdata

Visit the above link to see!!!

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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!

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