New Scan Date

Friday, March 15, 2013

New Scan Date

Yep...Those are my girls!!!! She does love that Brittney!!! I think the feeling is mutual!!

The date has been set. Brittney and I are taking Ivee back to Memphis for an MRI on March 25th. Right now, there is a stomach virus going around her classroom. We really NEED her well for this scan. Please, pray she doesn't catch this virus, that her 02 saturation will increase, that her secretions will loosen up and that any problems will just go away. And finally, pray for clean/stable scans!

We had plans to meet with a pulmonologist while there, but they couldn't get an appointment with him/her until May, so that will not be happening. I have a pulse oximeter (check heart beats per minute and oxygen saturation) and have been keeping up with her stats. Her heart rate is a little high at times, but I believe that is due to the albuterol. Her 02 stats have been in the mid to low 90s. My concern, if Ivee's lungs are functioning fine and at close to 100%, would be the flattening on her brain stem that we've been watching since 2008. (This is the reason she had the scar tissue removal surgery in 2008, that lead to meningitis, that lead to a shunt placement). I am not a "worrier", but I do try to think things through and I do have concerns. My thoughts are that it is still because of the congestion to her sinuses that her numbers aren't around the mid to upper 90s. Still, these numbers are not common for her "normal" stats when we are in the sedation room every three months. I will be taking the oximeter with us to confirm that it is giving accurate readings (when compared to the more expensive and hopefully accurate machines of St. Jude).

BUT, let me say. I know where my help comes from. My help comes from the Lord...the Healer, the Maker, Creator of me, you, Ivee, the heavens and the earth! So, I am asking God's hand of protection and his mercy upon her life and upon my heart. Scanxiety doesn't escape anyone with a severe medical problem, especially we parents of children who have fought the beast of brain cancer. The brain is the ruler of our body systems, and it is just scary to think about all that injury my baby's brain has endured. But, the miracle of her being here and doing what she can do makes me unbelievably grateful EVERY day!

1 comment:

Susan said...: I will keep Ivee and your family in our prayers! May God wrap His loving arms around your sweet family and give you peace as you take this next step.; Friday, March 15, 2013 4:58:00 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, March 15, 2013

New Scan Date

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