First of all....thank you to everyone for prayed for our trip yesterday to Ann Arbor. We had safe trip, the weather was bitter cold but the roads were mostly clear.
I was not quite sure how to write this post to update you on our consultation with the Scleroderma Doctor....so I have decided to numerically highlight the info we received:
1. Dr. Seibold has treated 8,000 scleroderma patients world wide and is a pioneer in scleroderma research. He has a dry sense of humor.....and not a very warm bedside manner:(
2. He is
not recommending me for the clinical trial using the medicine Gleevec. Evidently the risks and side effects out weigh the benefits.
3. He made it very clear that there is no cure for scleroderma and that all of the treatments available are aimed at stabilizing the disease and stopping the progression of it but
not reversing it.
4. His evaluation of my hard skin showed that I was severe with a skin score of 49....and on a scale of 1-10....I am an 8.
5. The good news is that I have no internal involvement.
6. To gather baseline data on my lungs I will have a high definition ct scan and a pulmonary function test on Feb. 5th.
7. My dosage of cellcept (an auto immune suppressant) is being increased, He felt I was on too low of dose.
8. He discussed the possibility of a stem cell transplant...which is kind of a last resort for sclero patients.....mostly available to those who have internal organ involvement. It's a hi-risk.....lengthy...expensive ($140,000) process....which would require a long hospital stay (in Ann Arbor). Basically they harvest your own stem cells.....knock out you immune system through radiation and chemo....and they transplant your own stem cells back into your body....where hopefully your own system resets itself and and becomes healthy....after about 4 years:(
9. I asked if my hands would ever straighten out and be normal again....he said no. (but they could surgically straighten them out later) hmmmm.....I'm not sure about that!
So, that's it in a nutshell! Not exactly what we were hoping to hear....but we sure have alot to pray about. Ken and I walked out of there a little stunned and bewildered...but thankful that it is not as bad as it could be.
We have hope, we have faith, we have the promise of everlasting life....and we have each other! I can't begin to tell you how amazing my husband has been throughout this whole ordeal. Ken has ended up doing everything.....inside, outside, plus caring for Joel, and caring for me. He is an incredible man of God with a servants heart! We are blessed with our sons, daughter-in-laws, and grandchildren. We have the love and support 24/7 from our family, sisters and brothers....nieces and nephews. Our church family and friends have been incredible!!
So no matter what comes in the days/weeks/months/years ahead...We know who that God is in control and that He holds all of our tomorrows! Our kids used to sing this song when they were little: "My God is so Big...so strong and so mighty there's nothing my God cannot do! The mountains are His, the valleys are His, the stars are His handiwork too! My God is so Big....so strong and so mighty....there's
nothing my God cannot do!"
Seth and Madeline
Checking out the boy's rock collection
Ken and Judy
Opening his card
Grandpa holding Annabelle after 
Emily and I, Seth, Isaac, Madeline
Emily and I, Seth, Isaac, Madeline
Brothers Travis and Justin with Uncle Ken
Justin and Tracey
Aaron and Joy
Aaron and Joy
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