National Childhood Cancer Awareness Month

Friday, September 07, 2007

National Childhood Cancer Awareness Month

September is National Childhood Cancer Month

Of course, everyday is awareness month at our house. There are some links that I would like to leave on here. One is a touching video on youtube.com. If you have 5 minutes, watch it and spread the word.

http://www.youtube.com/watch?v=AGS4yE5v9rM

This is Ivee's hand print on display at the Ronald McDonald House in Memphis. I already have the links for Ronald McDonald House in my links column. There is also a long term housing facility, The Target House, for patients and families who need to stay at St. Jude for 3 months or more. Some families live there for over 3 years. Financial support is needed.

ALSAC is the fundraising organization for St. Jude. It takes almost $100,000 to run St. Jude a day. So support is always needed, especially in the area of research. Over the years, funding has been cut by the government, so it takes personal financial support to make some research happen. There is a link for St. Jude on the left. Take some time to visit their site, and see how you can help. It doesn't take much time or money to become a supporter.

My sweet Ivee showing how flexible she is.

We want to say thank you to every single person who made the last ten months of our lives a little easier. And today our hearts go out to the families who have lost a loved one to this disease. A special I love you goes out to the wife, son, and family of Jody Caraway. Jody passed away yesterday battling lung cancer at the age of 33. Emmett and I meet Jody in college, and though we have not seen him in a few years, our hearts break for his family. God bless.

2 comments:

Anonymous said...: The pictures are great especially you & Brittney & flexible Ivee! We continue to pray for your precious family. Love, Anna C.; Friday, September 07, 2007 6:18:00 PM
Anonymous said...: Thank you Hope - you just put things in perspective for me tonight. I have been stressing over this English class I am taking - really stressing to the point of dread. I could list a hundred reasons why but they don't matter. Looking at Ivee and reading her little display at St. Jude's just wakes me up to the important things in life. What a precious picture - she looks like she never had a bit of surgery or anything. I just watched that video and I can't stop crying. I don't know how you do it Hope. Just seeing those babies on a video breaks my heart. Ivee is going to kick this cancer - like the wall says - my hope is in God. Who better to trust in. Many blessings to you, your family and especially Baby Ivee (the little cutie). Good Night, Paula; Friday, September 07, 2007 9:42:00 PM

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

Friday, September 07, 2007

National Childhood Cancer Awareness Month

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