The Foley Family - Trusting in God at ALL Times!!!: September 2011

Wednesday, September 28, 2011

MRI results

We meet with Dr. Merchant today. He said that Ivee's scan was clear (NERD) and looked well from a stand point of visible disease. However, the swelling on the back of her head and pressure on her brain stem is still a concern for him. He would be discussing the scans with Dr. Boop, neurosurgeon. More than likely, nothing will come from the discussion but a watch, wait and see approach. She is still progressing in a positive direction, learning, growing and achieving more all the time. Is she still behind, yes, but for all that she has been through, she is just simply amazing.
To be honest, I can't believe how much scanxiety I had this time. I told someone recently that sometimes it's just easier going through the treatments than these waiting periods in between scans. When you are getting radiation, you feel like you are giving her a fighting chance, just attacking this monster trying to kill her. You HATE the thought of what you are doing to her body, definitely fear doing something to her a second time that bad enough doing just one time. But, you are fighting. Then, it all ends you just wait. You sit there, moving on with life, this new normal, and you just wait until that next scan. You sit in the doctors office and you wait for them, anxiously, and the moment they walk in you read their faces quickly to see what their face says, not necessarily their words. To be honest, I didn't have these feelings after her first surgery and treatment. So, for 3 years, I was good...if you know what I mean. But, then little Johnny passed away last July, and I was just so sad and Ivee's scan was coming up, I just felt the pressure...but all was well. Then, out of the blue, January gets here and bam, there was the news. The moment the doctor and his nurse walked in the room, I saw it on her face and I just knew. So, how do I deal? I do as I have always done. Pray. Hope. Have faith. The same God who got me through it in 2006 will get me through it to 2012. He hasn't changed, even if I have. What else? Witness. Share. Care. Give back. Make things better for the next family who gets thrown into this whirlwind of chaos and lack of knowledge. encourage where I can and educate when needed. Never push my agenda, but just share my experience. No two children are alike, even if the diagnosis is the same.
It's late, I could say more, but I just like to write my thoughts down, even if it's just for me to go back and read later.
Thank you prayer warriors. Keep on praying! Always believing that my God heals, He saves.
Praises: KK, great report. Adi, clear scan. Ryan, clear scan. Haley, Clear scan. Olivia, clear scan. Justin, Allison, George and Lucy, almost done. Just a few more days/weeks. Aaron, healing. Ronan, doing well during chemo. Dillan, misdiagnosed and healing. Haley, Levi, Brandon and so many others, home and happy. Nothing sad/bad to report this week, and it feels good!

Monday, September 26, 2011

St. Jude Visit

We are in our room here in Memphis, Check up visits. MRI tomorrow, results on Wednesday. Saw so many online familiar faces tonight IN PERSON. It was so great to see them, even in these not so great circumstances. That's the thing about St. Jude, it's a place of Hope!!! Sometimes, I think the Lord so aptly named me!!! Maiden Name...Hope Long...Yes long I do...Married name Hope Foley...sounds like Hopefully! That I am, so Hopeful!!! He knew, didn't He!!!!
Pray for Ivee's MRI, Katie's and Ryan's. Dillan received great news today! Just amazing, but also a little concerning since he was misdiagnosed!!! He still needs prayers. But, today I am so HopeFul!!! God continue to get Justin, Allison, Lucy, George, Nora and Adi through Chemo! Continue to heal Brandon and Myah! Just so many, but these are on my heart. Thanking God for great and stable reports for Brandon, Olivia, Levi! Lord, please help LANIE and her family to make decisions. So, many!!!
Thank you prayer warriors. I covet your prayers again!!

Monday, September 19, 2011

VOTING

I discovered you DO NOT have to have a facebook account to vote for Ivee. You can vote EVERYDAY!
She is currently in 5th place! It will take a whole lot of votes everyday to get her to number one. It only take a second, and the reward is getting Childhood Cancer Awareness published!!! God Bless...

Link: To Vote Click Here!!!

Thursday, September 15, 2011

Reader's Digest

I have submitted Ivee's Story to Reader's Digest and would really appreciate your vote for her. You can return and vote daily or every 24 hours (I believe). I have voted more than once, so I know it's possible. Thanks for helping get the story of childhood cancer out there and making people aware. This is just one more way! The only downside, you must have a Facebook account to get to the page, it is being run through Reader's Digest Facebook Page.....

Vote Here: Reader's Digest Story

Wednesday, September 14, 2011

Update and Awareness

Soooo NO surgery for Ivee and her stomach issues. The surgeons do not want to touch the stomach hernia. They say she will be fine right now because the g-button has her stomach anchored to her abdominal wall. There isn't a chance of it twisting like it would if it were free to move. They suggested that we could give her a g-j button if we would like to try that for the heaving. We have decided not to proceed with that. I'm not sure if I posted it, but the gastro doc didn't find anything wrong with Ivee's esophagus or stomach. He believes the heaving is neurological do to all the trauma that her brain has endured with surgeries and radiation. SOOO

We are trying a appetite "increaser" trying to get Ivee to want to eat by mouth. We are attempting to approach this from a new point of view. Treating her aversion to foods and textures.

We will be leaving for Memphis September 26 for her 4 month check up. Sept. 26 is also Chili's St. Jude day. Go to your local Chili's restaurant and eat lunch or dinner or both. All the net profits they make that day will go directly to St. Jude. You wouldn't believe what this restaurant has done for St. Jude and how they have made treating our children so much easier and better. And in case you didn't know, Kay Jewelers and CVS pharmacy also give to St. Jude.

Please continue to lift Ivee and her friends up in prayer. Many of those children are on my list to the right. Add to that list Ronan and Dillan, two new ependymoma patients. Say an extra prayer for Aaron B who just under went a 12 hour surgery yesterday to remove 2 tumors from his spine. Allison, Lucy, Justin, Nora and many others begin their last rounds of chemo this week. Pray for an easy treatment and quick recoveries so they can go home!

Just a friendly reminder that it's Childhood Cancer Awareness Month. Click --> Ivee's St. Jude Journey

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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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