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

Friday, February 29, 2008

News

Well, the doctor was away on a family emergency all this week, and then the nurse practitioner was sick. So, the nurse I spoke to looked at Ivee's scan and read "stable." As I have learned that means that there is no new growth. I don't know anything else. She said that next week when Dr. Merchant gets back, I'll probably get a more detailed phone call.
So, that is good news. Now Em and I can relax for 4 more months until the next MRI. Thank you for the prayers. We got home last night and Ivee is glad to be here! As is the case with mom and dad too. Pray for Em, he is traveling to Texas today and tomorrow with his dad. He really didn't want to go after being on the road alot this week and just being tired from not sleeping in his bed. But, we are trying to by a more gas efficient car, and Texas was the place we found it. I just pray that when he gets there the car is what we were expecting and he won't come home empty handed (so to speak). If it's a go, then we'll sale the truck. We like the truck, but we have to pay for the new car and plus....what a gas guzzler! We are just going to buy a older truck that we'll use when we need to haul something.
Once again, thanks for the prayers, and remember us and the other kids out there fighting this disease!

4 comments:

Anonymous said...: Hi Hope, so glad to hear good results on Ivee and pray that you hear even better news next week when you speak to the doctor. You guys are always in my prayers and I love you all - even Em!!

Kathy F.; Friday, February 29, 2008 11:29:00 AM
momof3girls said...: We're so glad to hear the good news! You've been in our thoughts and prayers daily. Now maybe you can get a little rest.
Tammy; Friday, February 29, 2008 6:40:00 PM
Katharine F. Bedsole said...: Hope, I am so glad that the MRI part for this time and the news is not bad. Yea for no growth. I don't know if I ever said so but thank you for the note you left for me a while back. I am thinking of you and your family. Praying for all of you.

Things are good with us. David just passed orals (took them late) and is doing well in his job. I am loving my job and counting the months until we can try for a baby of our own. Seems like all of life is waiting for something.

Lots of love,

Kat; Saturday, March 01, 2008 3:22:00 PM
debchastain said...: So glad that things weren't bad on the MRI. I'm praying the new car is exactly what you need! That photoshop job is AMAZING for the "wicked" poster! we've been nuts lately, and it won't get better til we're back from vacation in a couple of weeks, but oh well. of course, your version of busy puts mine to shame, but it still feels busy to me :0) love you!; Sunday, March 02, 2008 11:33:00 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!

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Friday, February 29, 2008

News

4 comments: