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!"
Appeal, For Love’s Sake
5 years ago
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4 comments:
oh, Judy! we've been praying so hard for you to haVe some positive news. be encouraged and be strong in the Lord.
we love you so much!
~michael, sarah, & girls
Judy,
Scott and I are together praying for your health.
We will be visiting this summer on the Harley for sure!!!
If there is EVER anything we can do, please let me know??
How about start up some fund-raising for your possible stem cell surgery??
Love you,
Donna $ Scott & Boys
I will be praying for you as well. You are right...we do serve a Big, Big God!!!
Do you mind if I copy & paste this & send it to my inlaws in FL? They do not yet have FB.
In His love,
Mychelle Nicholas
Hello Judy and Ken,
You have touched so many lives over the years, and what a blessing you all have been to each life. First, we are praying for you and your health issues that are ever so much a part of your life these days. Praying for Ken and an unending flow of energies and grace toward his wife and son Joel. Know that many are praying for you and love and appreciate you both, Joel too! May you find the God of all comfort is the one carrying you and accomplishing his incredible work in your lives. I know that even in tumultuous times a child of God can always see his father's goodness in it all at the same time, that isn't saying that it's fun times, but that you can acknowledge that he is good, even when it hurts. Only in his economy can that take place. We do have hope and life, his name is Jesus. Hang on to our anchor, the lover of our souls! Wow! God has blessed you with an incredible support of family and friends. I can't help but think that you have given so much of your life to serve others and now you are experiencing it right back.
Judy, I remember when you were Ms. Hopkins then becoming Mrs Nichols and being such a wonderful choir teacher and friend to your students. But, I have to share this with you. Recently I have been asked to direct our mission's school choir. I had done some fill in music teaching for the school and I guess someone saw I enjoyed doing it. Anyway, I'm the new teacher and I have had the blessing of thinking back on my choir teachers over the years, revisiting all of the things I had learned and sharing/teaching them to my students. We are now in the dorm ministry which I think you know. We live 50 yards from the school and so it fits our schedule well. I wanted to share that with you. Everything I have learned in the first 25 years of my life has been used to it's full extent here on the mission field. God hasn't let anything go to waste. Now at 43 years old...I see God still actively working in and through my life, doing what only he can do.
We will remain praying and asking God to minister to your inner person deeply with His love and grace.
Ben for Beth too
The McLellans
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