Resurrection Day Homegoing

Monday, March 24, 2008

Resurrection Day Homegoing

After I posted last night I checked in on Amy and CHristian Showers. Christian went home to Jesus Easter Day afternoon. His mommy took pics of the boys last week cause she didn't know if he would be here on this earth for Easter. It seems that she must have felt in her heart of hearts that her baby boy would go meet his Savior on that day. Thank you to those who pray for these kids and their mommy and daddies. Every time Em and I read a blog of a little one who has passed on or is not doing well, we just hug Ivee and Em says, "Everyday is a gift." It truly is! Ivee is doing so well in comparison to other kids out there, and sometimes their stories would just sadden me deeper. I would anticipate the day when her cancer would return as it has done to all the other kids I follow that have her cancer. Then, a few weeks ago I found a boy who has only had the initial Ependymoma, and he has been tumor free for 5 years with no recurrences. God reminds me that every situation is different, and nothing is out of his hands. He will use Ivee and the others for his glory no matter how or when the story on earth may end. Everyday is a brand new beginning! Everyday he will renew our strength! So, today my heart is burdened for Christians' families lose, but I am not sad. For today is a new day with Brittney, Ethan and Ivee. I AM BLESSED!

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Anonymous said...: Hope - It is 2:30 in the am and I just checked in on your blog. A few weeks ago when you posted about little Tyler, I just got so sad and seriously upset about the whys? of all of this. I told Aunt Karen that I didn't know if I could continue to follow Ivee's little life because I never want to read anything other than "Ivee is doing wonderful". Like you, I have read so many cases of children with reccurances and I never want you guys to go through that. Aunt Karen said don't be discouraged be encouraged because Hope and Emmett are a couple with great faith. I have learned so much from reading your blogs and the blogs of so many other children struggling with this sickness. Christian's mom said in one of her blogs "Hug your kids everyday" and she was constantly saying that she just would hold Christian's hand and tell him that she loved him. I can't tell you how many times I have just squeezed my kids and said repeatedly mommy loves you because of her little reminder. Seems like a basic mommy thing to do but in the busyness of life sometimes we forget to reassurance our children - give them that extra hug. My point is that you all have encouraged me and pushed me to a new place in my faith. I am learning to live every day in the day and let tommorrow take care of itself so to speak. I tend to be a worrier with the what if mentality and that is totally opposite of what God says we should do. I was letting fear creep in the other night about something I am dealing with right now and God give me this scripture in Luke 24:38 in which he is talking to Thomas "Why are you troubled? And why do doubts arise in your hearts? Behold My hands and My feet, that it is I Myself..." and then I read the scripture a few verses up that said (36) ...Jesus stood in the midst of them, and said to them "Peace to You." It was such a word for me - When doubts arise, Jesus just says why are you doubting, why are you troubled - Peace to you because I am here in your midst. I just keep reminding myself when I start to worry or feel as if God is far off that he is right here in my midst ALWAYS and I need to let His peace rule in my life. The reality of life is that every day is a gift for each of us and if I could just always remember to live in this day...I am working on it! You guys are a blessing to me. Your constant expression of faith in God is such an incredible encouragement and I know that God is taking care of your little angel. I believe that she is a living testament to His goodness!!! Many blessings, Paula (P.S. if you are wondering why I am up at 2:30am - my son decided that bubble gum tylenol is good and he wanted to drink some - about 4 times what he needed. Since I have already had to call poison control once before about a medicine situation and feared that DHR might come a knocking I have been sleeping with my son all night to make sure he is OK. His the car bed is a little less than comfortable so I decided to get up and see what you guys were up to. Remember one time when I blogged about the lady saying she had a Nanny 911 book that might be helpful to me... well Nanny 911 please help!!HA HA!! Also, if DHR happens to read this - I am a good mommy...I promise!!); Tuesday, March 25, 2008 3:23:00 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!!!

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Monday, March 24, 2008

Resurrection Day Homegoing

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