First Meeting in Memphis

Wednesday, June 13, 2007

First Meeting in Memphis

We arrived at St. Jude yesterday about 4:30 pm. Ivee was good the whole way up. (TV helps) Everyone is very friendly and organized here. All the buildings are in a gated area with guards at every entrance. Where we are staying this time is on campus, so we just walk back and forth.
Today we meet with Dr. Thomas Merchant (The Chief Radiology Oncologist) here at St. Jude. He went over the typical effects of radiation treatment. One that we didn't know is that Ivee can only have radiation once. So, this is it. She'll have radiation for 6 to 61/2 weeks, 5 days a week. Each time will take about 45 minutes. This is to sedate, give radiation, and then wake up in recovery. We will have a planning scan tomorrow, where they will do what is called a test run. They will ta too her head with pin point marks so that they can radiate in the same place every time. Dr. Merchant wanted to being treatment next Wednesday, but after discussion (and my look of need) Ivee and mommy will return to Memphis Sunday, June 24. So I'll have one week at home before I come live in Memphis for 7 weeks at the Ronald McDonald house here. The RM House is only 5 minutes from the hospital. So, I won't be home for long once I get back, and I have ALOT to accomplish.
The great thing is chemo is over, and the Doctor said that as time progresses, Ivee will become more and more energetic and lively and she will begin to catch up physically. In her case, radiation will have no effect on her physical development. Learning skills and development might be affected.
Well, I don't know what else to tell right now. Don't know much more. I know Memphis is big, and me driving in it seems a bit overwhelming, but Emmett and I got out tonight and found somethings.
If you have any Questions...blog me please. I would love to answer any you have. God bless, and pray all goes well until we come home Saturday.

6 comments:

Anonymous said...: just wondering, when you say she would only have radiation once, do they think that's all that will be necessary or is it that physically she can only handle once?
I do hope all goes well for the rest of your visit this time, and I'll begin to pray that God will work all the details out for your extended stay. I hope next week won't be too stressful and you can just enjoy being at home.
In Him, Daisy; Wednesday, June 13, 2007 8:27:00 PM
Anonymous said...: No questions as of yet but just wanted to let you know that we continue to pray for your family. This is going to be a long haul away from home but with God all things are possible and I know from experience that He will give you the strength to get through it all.
Let me know if y'all need any help with anything at all. We are willing to help however we can.
Give hugs to the kiddos and know that y'all are always in our thoughts and prayers.
Allyson and family; Wednesday, June 13, 2007 9:49:00 PM
Anonymous said...: I have been praying for Ivee and your family. You are all such strong people. I know where you get your strength, and I see it in every blog you post. I do pray and hope that all goe swell while you and Ivee are in Memphis. I pray that this will help her, and you will see an improvement very quickly. I just wanted to say that I have been following your blog, and I wanted you to know that you and your family are in my prayers.
Abby Jones (Daisy McVay's sister); Thursday, June 14, 2007 8:26:00 AM
Anonymous said...: I am just now getting to check your family website. I just wanted to let you all know that I am praying for Ivee and the doctors at St. Jude's. I can't wait to hear what you think about St. Jude's hospital when you get home. Have a safe trip!
Amanda Manning, RN; Thursday, June 14, 2007 9:10:00 AM
Anonymous said...: Emmett and Hope, I am glad to hear the good things about St.Jude, I have always admired their work. I am glad that Ivee has finished the chemo , and I am happy that she can start catching up, and she will, she is a little fighter! What are the possible immediate side effects of the radiation? We are praying that all goes well. Have ya had any Elvis sightings? Love, Karen G; Friday, June 15, 2007 5:47:00 AM
Anonymous said...: We have continued to think about and pray for all of you. My timing was a bit off - I didn't realize you were going to Memphis this soon. Katie had her eye surgery Wednesday and is doing well. Have a safe trip home on Saturday and enjoy your time at home before going back to Tennessee. All my love, Diane; Friday, June 15, 2007 7:26:00 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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Wednesday, June 13, 2007

First Meeting in Memphis

6 comments: