Friday, December 24, 2010

Tripping to Maryland...Again!!!

So, as most of you know Mandi has been flying back and forth to National Institutes of Health (NIH) now for many years.  I fly with her.  This is a God send for her since all her surgeries, scans and tests are picked up by the government because she is in a von Hippel-Lindau study.  
She had done the tests here in Tulsa and OKC for many years prior to doctors finding the first renal cell carcinoma (kidney cancer) but the co-pay on just one test was between 5-6 hundred dollars.  So you can see why being a part of this study is a blessing for her.  
About 2005 when the first two tumors were found, the Urology Clinic in Tulsa wanted to remove her kidney's and put her on dialysis.  However, one of the partners there told us about NIH and the study and said he would make some calls to see if she might be accepted there.  God is so good, He had a better plan for my precious daughter.  She was accepted and off we flew.  Many of you prayed with us and I believe that is why she was able to keep both her kidneys despite the circumstances.  She had a malignant tumor on each of her kidneys and each tumor was the size of lemons.  The tumor on her right kidney was beginning to invade the vein flowing into the kidney and extensive repair had to be made.  The surgeon didn't know if she would be able to even keep that kidney because of the damage, but My God... who is bigger than the circumstances did a miracle and both kidneys healed and are fully functioning.  Hallelujah!!!
They have been keeping a close eye on her since that time and we fly back to NIH every 6 months for the battery of tests.  Last Feb when we flew in she was clean as a whistle, but then in Sept they spotted a new mass on her right kidney that came out of nowhere.  The mass was already 2.6cm which was alarming to the surgeon.  However, they had an ongoing drug protocol happening at the time and so they decided to put Mandi in it.  This new drug was stabilizing and even shrinking vHL tumors.  Mandi got started and in a short time began to have sever side effects.  They worked with her for many weeks but unfortunately she had to be taken off the drug. 
On Dec 30th after another battery of tests they discovered that the tumor had now grown to 3.2cm and needed to come out.  The surgeon said it was growing 8x faster than he would like to see.  He wanted her to be able to have a normal Christmas with her children and family so she has been scheduled for surgery on Jan 11, 2011.  We will be flying back to NIH on Thur, Jan 6 (Tristen's birthday) and will be coming back on Tue, Jan 18.
Please keep Mandi in your prayers and agree with us that God will guide the surgeons hands and that her kidney will be spared and continue to function normally.  I also covet your prayers for myself, Loren, Tristen & Shelbi and my mama (Carolyn).  Our family will be here for almost two weeks without us and mama will be taking care of the children.  I also need favor with getting into the family lodge which is across the drive from the hospital and is a free place for me to stay.  I am believing for favor for a room to be open there for me.  I can cook for myself and do laundry which will cut down on how much I will have to pack.
I created this blog so that I can post Mandi's progress and keep everyone updated with the goings on.  I will have my iPhone and laptop with me if any of you need to contact either of us.
All my love to family and friends.

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