ready...set...go....week 2

Monday, July 02, 2007

ready...set...go....week 2

We are currently in the surgery waiting room this morning. Ivee is in radiation right now, then they will transfer her upstairs and put in a subteranious port (under the skin, on the top of her chest) and take out the central line. She has responded really well to the radiation. She is feeling alot better, and you can see the physical evidence of this from her hyperactivity. She is so crazy. She has friends all over the hospital. We have meet two people so far from our "neck of the woods." Maggie, a radiation nurse, is from Theodore. Chad, I believe he is in training in sedation and radiation, is from Silverhill, and his brother has a law office in Bay Minette. Also, Aimee, one of our recovery nurses was married at the Grand Hotel and was surpirsed when I told her how much damage was done by Ivan, and how it had to be totally gutted and redone.
I must confess that Brittney and I are becoming home sick. I'm sure Ivee is too. Emmett says that I am not home sick, I am "Emmett" sick. Ha, ha.
We are finding our way around Memphis. It isn't too confussing, just really congested in some areas. And if you want to go anywhere around the hospital area to see something or eat, you have to pay for a parking garage. So, I have come to one conclusion...I do not want to live here! And I'm not sure if I want to visit here again : ) I think I will have my fill of Memphis beofre this is over.
We have now moved to the Ronald McDonald house. We have our own phone number and can receive mail there much more easily. When I get back there today, I'll post those for you on here.
I'll let you in on more later. Thanks you everyone.

3 comments:

Anonymous said...: Precious little Ivee! Praise the Lord, she is feeling better. Hope, I am so thankful you and Brittney have moved to the Ronald Mcdonald house. I like that "Emmett" sick...:). I am praying for all of you. I was reading this morning about that refuge in the shadow of His wings; the shelter of His wings; that protective shade. That is my prayer for each of you. Much love, Anna C.; Monday, July 02, 2007 9:47:00 AM
Unknown said...: Good to hear how things are going! I knew God would provide people everywhere that would at least make you a feel a LITTLE closer to home. Continue to watch, I know He has much more in store that He wants to show you while you're there. I know you MUST be homesick, and I will pray for a peace that passes all understanding for the entire time you are there. Keep us posted.
Daisy; Tuesday, July 03, 2007 8:00:00 AM
Anonymous said...: Hey Hope, I am happy to hear that Ivee is doing so well that she is hyper!I have just gotton back in town, and I was reading your blogs to update, you have really been busy. I will pray for all the Foleys, as I know it is hard to be apart from each other. Love , Karen G; Tuesday, July 03, 2007 10:57:00 AM

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

Monday, July 02, 2007

ready...set...go....week 2

3 comments: