Thursday, January 9, 2014

In the hand of God

As I mentioned it so often, when I first found out I had an inoperable brainstem cavernous malformation, and all I could find online was horrifying stories of people who have had the surgery  (usually as a last results without their knowledge, leaving them with such devastating deficits that it appeared much better to just wait to let things happen on their own) I quickly concluded that the best was to  enjoy every day like it was the last.  That it was in fact, inoperable. The surgeries outcomes left people in nursing homes a lot of times.  If home, they still had lost such a high level of quality of life that the only reason they were home is because a loved one was amazing enough to care for them.  When i was told inoperable, i was told "it "can" but you want the surgery only as a last result, to save your life, because it will disable you". So... what do you chose? You accept the inoperable verdict, and try to move on.

But is that really it??

What "if"?

What if there is a surgeon out there, or even more than one, that can operate with a much better outcome?   Surely there is someone out there that survived this and still maintained a decent quality of life. There has to be someone!!

Finding that person seemed impossible at first, but I did.  Despite not finding anybody for almost a year and "accepting death", I found not one, but 3.

All this to say that it was more than important to me to let people like me know out there that there ARE people out there!!

When I was in Phoenix, Dr.Spetzler's nurses and therapists told me that he operates on the brainstem all the time. He operates the "inoperable"... which means he uses his incredible talent to reach people's brain tumors and aneurysms in places where any other surgeons wouldn't even think of going.  He invented brain surgery tools that changed the Neurosurgery world, and mastered to use them.

So, if Dr.Spetzler did this "often", and that so many people, if not most,  have great outcomes, why couldn't I find anybody??  I will never know the answer to that question, but I also know that even if he is the best neurosurgeon in the world, I never heard of him, nor was referred to him!!! However, I was determined to at least try to make sure that some day, it wouldn't take someone almost a year to find someone.  I will never stop to reach out to others, in hope that it can help someone, somewhere.

This brings me to Jeff.  

Jeff was diagnosed with a  Cavernous
Malformation in his thalamus.  It is just above the brainstem and is most of the time classified as inoperable.  Like me, Jeff found a way to accept this diagnostic at first, but his sister didnt.  She went online and came across my blog, which led her to find Dr.Spetzler.   He wrote a comment on my blog to let me know that he had sent his scan to Dr.Spetzler office in Arizona.  Jeff lives in New York.  I often thought about Jeff, not knowing what type of answer did Dr.Spetzler told him back.   About 2 weeks ago, I learned that not only did Dr.Spetzler told him he would operate on his "inoperable" cavernoma, but that he already had a date schedule.

January 14th, 2014, this coming Tuesday.  He is to travel with his two beautiful daughters to Arizona, and put his life in this amazing miracle worker's hand.  I know first hand how difficult this decision is to make.  I know how sickening it feels to one's stomach and oh the doubts. Jeff has put all his faith and hope in God.  Please, Please pray for Jeff. First, pray that God gives him His peace. He has faith, he has hope, and he is strong and courageous, but he needs more, as any of us would. He needs that peace that throws doubts and turmoil out the window.  Pray for that as of  now.   Then, pray for a successful surgery. Pray for a successful resection, minimal pain and successful recovery.  Successful seems so vague... because it is!! Success can be interpreted in so many different ways.  Pray that Jeff recovers successfully according to his desires!!  Jeff is a runner. Pray that he can go back to his love of running.   There is so much we can pray for. I have no doubts that Jeff will wake up from this surgery with a sigh of relief and confidence in his heart.

Jeff and his two gorgeous daughters.  Pray for them too, as they wait on Tuesday.  

You can follow my facebook page here as I will update you on Jeff's every time I get an update.  I am so grateful for all the prayers that I have and keep receiving. I am asking you to pray for someone who needs them more right now!! So when I pop up in your mind, remember to pray for Jeff :)~

For now, I just want him to keep realizing that his journey is special and is not happening for no reason.

I want him to feel as if it is not on an operating table that he will be lying on Tuesday morning... it is right in the hand of God.


  1. Jeff is my brother. He is the youngest of 6 children. We are all so grateful our sister found you which lead her to Dr. Spetzler. We have a strong family bond with much faith in prayer and God. How blessed Jeff is to have Dr. Spetzler as his surgeon. I am very optimistic he will have a great outcome. Thank you Lisanne for such a beautiful prayer and your words of encouragement. You give us all hope as well as my brother Jeff and that means so much to me. Thank you. Jeff's sister Tina

    1. oh Tina I am so glad that Jeff found Dr.Spetzler too!!! I'm so glad he has a incredible loving family too. that is so important. I am very optimistic he will have a great outcome too!! lisanne

  2. Thank you Lisanne. Jeff is my inspiration and I love him so much. I will be in prayer vigil all day Tuesday during his surgery that he recovers as well as you.