The Foley Family - Trusting in God at ALL Times!!!: September 2013

Wednesday, September 18, 2013

Ugh! Does anybody hear me?

So...I am having a blah week.

Ivee has been home from school all week, so far, with fever and congestion. The congestion seems to never go away. She's been more productive with it this morning.

My computer is crashing since I installed MagicJack on it. The PC upstairs slowly declined after a year of having the program on it, it's a newer PC. Didn't think It had anything to do with the program, until now. My notebook is older, but was working fine until Friday last week. I uninstalled the program, but it is running Extremely slow and freezes and the virus protection won't turn on!

I'm in a rut it seems. I'm not necessarily coming unglued or in need of a Calgon bath, but I would feel more useful if I could fix any of these problems....mainly Ivee.

It was heavy day yesterday in out little town. Carlin Davis, a 12 year old who lives here, was a St. Jude patient diagnosed with DIPG in August of 2012. She suddenly passed away yesterday morning, leaving behind a grieving mom, dad, brother, and sister. I hate cancer! It steals or destroys so many things. I don't understand why childhood cancer can't get the same funding as breast cancer or other adult cancers. These kids only 10% of what breast cancer gets from the government or fundraising processes. It gets 1% of a dollar from The American Cancer Society and Realy for Life.

I don't understand how I can't get people to help me reach my goal for the St. Jude Give Thanks Walk.

I had a fellow Ependy mom, who lost her little boy to Ependymoma post this on FB yesterday.

I think I just needed to pour that out! Thanks for checking in and listening to my rants.

If you would like to join TEAM IVEE or give a donation, just click the link below.

Thanks.

Click link to support TEAM IVEE

http://fundraising.stjude.org/site/TR/Walk/Walk?px=2064530&pg=personal&fr_id=8310

Thursday, September 12, 2013

MRI and Saliva Gram

Ivee's MRI was clean and stable. That is the best news.

But, while we were up there this visit, Ivee had a saliva gram, a nuclear test to see where her saliva goes. The results reveal that Ivee aspirates her secretions. We will return to Memphis in November for doctor visits and a sleep study and hopefully more answers. Then we will search for helpful remedies.

This journey seems to never end.

September is Childhood Cancer Month...a month is not enough.
It's too late for Ivee to have better options, but I pray children diagnosed after her will have better treatment and surgery choices so they have a chance at a normal life.
We can make that happen through action.

If you would support us, we are doing the St. Jude Give Thanks Walk. Please support Team Ivee.
Click this link to help and support our efforts.
http://fundraising.stjude.org/site/TR/Walk/Walk?px=2064530&pg=personal&fr_id=8310

Wednesday, September 04, 2013

Scan day

Waiting for her MRI. Getting an IV was a quite an event this morning. She will get used to it, it's just scary. We have a lot of other testing that needs to be done for Ivee per her pulmonologist. Looks like we will have to return to St. Jude in a out two months for a sleep study, saliva tract study, and we'll be getting some new home equipment such as a cough assist machine.

Tuesday, September 03, 2013

Prayers and more

It's been a while since I've updated. Found myself at the pc to type, and just didn't feel feel like it. A summer full of two foot surgeries left be feeling blah!

Ivee is well, but congested. We got to St. Jude yesterday, and have began her appointments today. MRI is scheduled for tomorrow. We need prayer for breathing, congestion and O2 and for her to be cleared for sedation. Then prayers for clear and healthy scans.

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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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