The Foley Family - Trusting in God at ALL Times!!!: October 2007

Friday, October 26, 2007

Update on the Foley's

Fall is such a great time around here. It has felt so wonderful over the last two days.

Em is really enjoying this new job. Someone asked him how it was going, and he said so well, that I'm waiting for something bad to happen. They looked at him and said, "Don't you think that it's time for you to have something good happen?" I guess we always expect the worse don't we. Not enjoying the good seasons cause we just came out of a tough season and are already anticipating what else could happen.

The upstairs is almost complete...so to speak. Gonna take some new pics and get them on here.
The kids are doing great. School is going fine, and Ivee is just a cute little stinker (as you can see below). Go back to the oncologist next Thursday to hopefully schedule that swallowing test we are anticipating. Can't wait. Well, here are some pics...enjoy!

This is a cake I made for my mom's birthday. Just thought I would share it cause it was so fall looking...and it tasted good!

Ivee had a hard day and fell asleep in her highchair. We don't use it for eating of course...we use it to throw stuff down from.

"Where's the baby?" This reminds me of the scene from ET where he is hiding in Elliot's closet and just looks like one of the big toys in there.

It seems like every time I try to take her picture (when she's awake), she wants to make this silly looking face. What a colorful looking bunch they are.

Tuesday, October 23, 2007

Just a Quick Note

I haven't blogged since the good news, so I just wanted to make a quick note. Ivee is doing great. We go back to our local oncologist on Nov. 1st and hopefully will schedule another swallow study. I'm anxious to see what the results will be considering that Dr. Thompson, ENT doctor, said her vocal chord was looking so much better. And her voice has been so loud lately.
Please, continue to pray that we complete the upstairs soon. We ordered the carpet, but need to get a few things complete before they can install it in about 1 1/2 weeks. Carpet is a big step, but then we still have to complete the bathroom, and doors, and the bottom of the stairs, and just smaller stuff. I can see the light at the end of the tunnel, but we seem to be moving slowly towards it.
Congrats to my friends Wyatt and Daisy and big sister Maggie on the birth of baby Luke. He was born last Friday, and I can't wait to see him. I'm sure Daisy will have time to blog about it :)
Take care, and I miss hearing (or reading) from some of you. Just remember, all of you are my inspiration and you helped me make it through the last 10+ months. I love you!

Wednesday, October 10, 2007

It's offical. Ivee is in REMISSION. There was no sign of anything on her MRI, except the fluid still on the back of her head. And as Dr. Merchant said before, he doesn't see this causing any issues. Praise God, we are cancer free.
So, most great news all around this visit to St. Jude. Now, our only concerns are getting started with PT and OT here at home, and to get a swallow study done again. Read the previous post for more info on that subject.
Once again, thank you all for your unending prayers. I have many pics from this visit and will post them when I have time. We love you!
Once again...WHEW>>>>>>>>>>>>>>>>>>!!!!!!!!!!!!!!!!!!
Praise God!

Tuesday, October 09, 2007

A Quick Post

I have time for a quick post while here at St. Jude. We had an MRI today, but no news yet. Will probably be tomorrow.
Her Auditory Brainstem was yesterday. Her normal hearing is fine. She did fail the high frequency ranges, so I guess no annoying high pitch sounds in Ivee's future. Also, today we had another nose scope to check her vocal chords. Dr. Thompson said there is significant improvement. Her left vocal chord is becoming really strong, and he is looking forward to what her next swallow study will show. He think it will be good. However, he does believe that her right vocal chord is permanently paralyzed, and she will probably never regain function of it. Her left one is already learning to over compensate for the right ones inability. Will Ivee's swallowing or talking ever be normal? Probably not, but with God anything is possible.
Well, that is the report for now. I'll keep you posted.
Keep praying. God does answer prayer.

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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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