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

Monday, April 28, 2008

I am sadden to announce that little Avery I spoke of last week had her home going on Saturday. The day before, another little , Mira, from our ependymoma support group also went home on Friday. So, I believe that went Avery approached those golden gates on Saturday, Mira and other children were there to great her! It really burdens my heart and makes me ache when this happens. I told Emmett that I just don't think I can follow any more children's stories. It's just too hard, but God reminded me that this journey is not a easy one. He never intended for it to be, but what we do with his message and what we do with his grace and mercy is what it is all about. I cannot physically be there for these families, but my thoughts, prayers, and heart can be with them. And my words can encourage, build, and witness to them. So today I will share my pray online for them.
Good Lord...Sweet Jesus. My heart is burdened for your children. The pain of losing a little one is unbearable I am sure. But Lord your will is good and perfect. Nothing is out of your hands. So, I give my heart to your will, and wish for my words to exhort your glory and your majesty. May you ease the pain and ache of Avery's and Mira's mommy and daddy. May the find rest in the arms of the Savior of our souls. May they seek you earnestly, not trying to understand, but excepting that your ways are higher than our ways. May their life sing praises to you in their time of struggle! And Lord may they know you in their soul. May your Spirit speak truth to them and give them peace. The peace that passes understanding. You are good and mercy endures forever. Amen
Thank you to all my support. Don't forget my Ivee in your prayers. My heart is still burdened for my little . I pray that she will physically improve everyday. The reality is that God does hear my prayers, even when they are selfish! He has what is best in mind. I pray that we make the right decisions concerning Ivee, Brittney and Ethan everyday!

2 comments:

Anonymous said...: Hope,
I am so sorry. I continue to pray. May the Lord give you His wisdom as you and Emmett make decisions concerning your family.
Love, Anna; Monday, April 28, 2008 6:58:00 PM
Anonymous said...: Hope - I am so saddened to hear about Avery. Every since I started following your Ivee's story, I have been reading the blogs of other children on your site. It saddens me to read their stories but blesses me all at the same time. Seeing the pictures of these precious children and read their stories makes me feel as if I know them. When these three children went to heaven - I have been aching for their family. I almost blogged a while back that all of this can be to much and I wanted to disconnect a little. I hope you can forgive me for saying that. But after reading your blog, I realized that you feel that way too. Thank you so much for that wonderful prayer. It touched me tonight. So many questions bog me down sometimes and I just need to be reminded that God knows what he is doing. I have truly fallen in love with your little angel - not in a weird way but as if she was my niece. I will continue to pray for Ivee and believe that God has the best intentions for her little life. You are one strong lady and I will be praying for you too!!Blessings, Paula
P.S. How about a funny...I ask a K5 child if she would be coming back to Knollwood next year to which she responds no I am going to another planet. I said oh really where are you going. She told me Iran. HA HA! She was so serious...another planet!; Tuesday, April 29, 2008 9:49:00 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

Monday, April 28, 2008

2 comments: