The Foley Family - Trusting in God at ALL Times!!!: November 2008

Monday, November 24, 2008

Just a note of thanks

I just wanted to give a note of thanks to everyone who has given us clothes. Ivee has a good lot now. So...thank you, thank you, thank you. The clothes have come from everywhere.

Friday, November 21, 2008

I still haven't heard from Dr. Merchant because he is trying to talk to Dr. Sanford (neurosurgeon). But, according to Christi, he doesn't think we need to come back so soon for a scan. Still don't know what all this means, and not worried about it.
Please, be in prayer for the Vang family. They were one of the first families we meet at St. Jude whose daughter, Kayla, was diagnosed and fighting the same cancer Ivee has. Kayla lost her fight with ependymoma (cancer) this past weekend. She was a ray of sunshine everytime you saw her. We were privelged to be a part of her birthday while living at the Ronald McDonald house in Memphis. If I recall, Kayla just turned 10 in July. She is just another reminder of what a blessing our children should be to us everyday of our lives. So, give your babies a hug today and tell them how much you love them.

Friday, November 07, 2008

The News from St. Jude

The MRI results came back stable and clear of tumor! Thank the Lord again!
Added to that though, according to Dr. Merchant's nurse...from the doctors words though, there is post-operative changes to the brain. She didn't say if any of these are of concern. She just told me that Dr. Merchant would take Ivee's MRI to the tumor board on Wednesday and have Dr. Sanford and the other neuro's take a look at it. Then the nurse, Christy, said she would call me back about the next check up. It sort of made me feel like we would be going back up sooner than later. I'm not concerned about this news...for now...cause I don't really know what any of this means, since of course I am not a brain specialist and I don't know exactly what Dr. Merchant meant by the term changes to the brain.
I CAN tell you that Ivee is talking like "crazy" now and she repeats all kinds of things. She is even talking in two or three word sentences. Her balance may not be 100%, but there has been some kinda change (in my eyes) for the better.

Wednesday, November 05, 2008

Update from Memphis

We are doing fine in Memphis. Allergies, or something, is affecting me and the s, but we are making through. Ivee just got out of her MRI about 30 minutes ago. Hopefully we'll know the prelimanary results this afternoon. We got to eat supper with our friends Zack and Randall who go to seminary here in Memphis. Today after our last appointment, I'm gonna take the s to the zoo. St. Jude kids plus 3 family members can get in for free if the child is wearing her/his hospital braclet. Ivee really enjoys the zoo, and it is nice outside today here. I'll keep everyone posted on what the results are.

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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!

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

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