A Quick Post

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.

6 comments:

Anonymous said...: SO glad to hear from you!! I've checked a couple of times today to see if you'd had a chance to update. You guys have been on my mind, and I am praying for a wonderful report on the MRI. You're right, with GOD, ALL things ARE possible!
Daisy; Tuesday, October 09, 2007 4:25:00 PM
Anonymous said...: Hope - checking in waiting on God's good news. I always scroll down to see that precious pic of Britney and Ivee asleep. That is the absolute most precious thing and I know you will always treasure that pic. Many blessings tonight. Wanna here a funny...I am going to tell you anyway. Ha Ha! Yesterday I was reading to K4's in the library. I was reading a part in a book that says you don't have to be afraid and if you are afraid you can always call... This little kids screams out "911"!!!! How can you argue with that. Too cute!! Good Night - Paula; Tuesday, October 09, 2007 8:09:00 PM
Christy said...: Hey Hope,
Just wanted you to know that we are praying for you all. We will be checking in to see how all the reports go. I know things have gotten busy for us over the last couple of years but Brad and I will always remember all of our Sunday lunches when we first moved to Daphne. You and Emmett were so great to welcome us to our new church family. Faith Family will always be a part of our extended family. If you guys ever want to/or need to come for a visit you always have a place to stay. Love you guys!!! Christy Benton; Tuesday, October 09, 2007 8:57:00 PM
Anonymous said...: It is so good to hear from you. Thank the Lord for Ivee's improvements. Nothing is too hard for God. We continue to hold you in our prayers and hearts. Love, Anna C.; Tuesday, October 09, 2007 9:11:00 PM
Anonymous said...: I'm keeping you all in my prayers and expecting good news from the MRI. Faye Carter; Wednesday, October 10, 2007 1:30:00 PM
Anonymous said...: Hey I am so glad about Ivee being in remission! Mom told us a couple days ago. I love all of ya'll

Megan,
your niece and cousin; Monday, October 15, 2007 12:00:00 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!

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

About Me

Tuesday, October 09, 2007

A Quick Post

6 comments: