Update

Tuesday, November 20, 2007

Update

Ivee did very well in her swallow study yesterday. She didn't cry, not even once. She wanted to know what was going on the whole time. And she was adorable with her Barium "go-t". Wish I had took a picture. Well, she didn't aspirate once. She couldn't do thin liquids very well, but on the consistency of 2nd stage foods, she could get it down after about 3 swallows. So, we have a long patient road ahead of us, but she didn't fail the test. Daddy and I are thrilled. We are just waiting on approval from the oncologist, and we will begin to try to feed her. She is starting all over again. She really doesn't remember "how" to eat. She pushed it out of her mouth. We are excited and are anxious to get started. Thank you for the prayers. God bless everyone of you!

5 comments:

debchastain said...: YEEEEEEEEAAAAAAAAAAAHHHHH! So glad and thankful to hear that it went well. I hope y'all have a wonderful thanksgiving. We all have so much to be thankful for. Love you lots!; Wednesday, November 21, 2007 12:51:00 PM
Anonymous said...: Hope, that's great that Ivee will be able to eat. How appropriate that this happened on Thanksgiving week! Maybe you could start with some pumpkin pie! LOL! :) Have a great Thanksgiving, wish we could be near family for it.
Becky and Dave; Wednesday, November 21, 2007 1:15:00 PM
Anonymous said...: Hope - that is such great news!! So sorry I have been such a slacker lately about blogging. I think of you guys everyday and I still read the updates all the time. Like the Nemo pjs! Aunt Karen didn't know if they would fit or not. Someone give them to Macky but her little chunky self couldn't fit into them - her gut hung out. Looks like Ivee likes them too! I am super impressed with her ability to undress herself and I am super glad that Mackenzie can't do this yet. I don't know about Ivee but Mackenzie is into everything. We got our Christmas tree and at first she was scared of it - not anymore. She walks right up to the ornaments and just pulls one off. This is going to be a long season of "don't touch or you'll get a spanking". I am so glad this Christmas is going to be so totally different for the Foley family - no more bad news this year. Only great things ahead!! God bless you guys and have a Happy Thanksgiving day!! Gibble Gobble Wibble Wobble (that's turkey talk - I taught all my elementary kids this for turkey day)!! Blessings, Paula; Wednesday, November 21, 2007 10:21:00 PM
Anonymous said...: We have never met, however I found your link on little Johnny Sileno's CaringBridge site. His aunt works with my husband, who is a pilot in the Air Force and a father to three beautiful daughters.

We are currently at Walter Reed Hospital in Washington DC because my husband is being treated for a terminal brain tumor. We are actually "WAITING" on another opinion from a third pathology report because one said he had a stage 4 glioma-multiforme glioblastoma and the other said he had a stage 2 astrocytoma glioma. That's a pretty large difference.

We wanted you to know we will be praying for your little girl. Our 3 year old was born with craniosynostosis which required surgery and a year and a half of therapy. So I know what it is like and how scary it is to have a sick child. She is good now and SO full of energy and life. Now we are battling this cancer in my husband.

We would like to wish your family a Very Happy Thanksgiving. Unfortunately, we will not be with our children today, as we are still here at the hospital in DC. They will be at my sister's house in Oklahoma. However, the girls are flying out to see us next week. We're so excited, it's been more than two months, since we were home.

Stay strong and give thanks for being able to celebrate LIFE!

God Bless, Shelly & Scott Perkins

PS You may visit our site if you wish:
http://www.caringbridge.org/visit/scottperkins; Thursday, November 22, 2007 7:25:00 AM
Anonymous said...: Hope, that's awesome!!! Sounds like a baby food part is in order!!! We'll pray that she handles it all well and that this week really is a wonderful week of Thanksgiving!
See you Sunday,
Daisy; Friday, November 23, 2007 10:30:00 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

Tuesday, November 20, 2007

Update

5 comments: