Benjamin's Cancer

We had a very important follow up with Benjamin's oncologist in STL yesterday.  In short, we came away with great hope, confident that we are taking the best course for Benjamin, and sure that he is in the very best of care.

Here is a bit of the longer version that I wrote to family yesterday:

Benjamin is one in about 2 billion and apparently he's been the talk of the tumor world recently, soon to be written up in a medical journal.  There have only been 78 documented cases of low grade fibromyxoid sarcoma and his is a very, very rare mutation of that.  We obviously don't have a lot to go on, but it looks like in about 5% of cases the tumors recur and in about 5% of the recurrences they are in the lungs.  Unfortunately these recurrences have been more than 5 years later and up to as much as 45 years later.  This means basically a lifetime of surveillance is ahead of Benjamin.  He and the oncologist will grow old together.  :)

The CT scan of his chest came back clear.  Benjamin got a post-surgery MRI yesterday to have as a baseline.  Our plan is monthly self exams (Dad, Mom, and Benjamin!) to check his leg for growths/tumors.  We will visit with the oncologist every 3 months for a while.  Benjamin will get an MRI of his leg every 6 months for a while, then indefinitely.  He'll also get a CT of his chest every 6 months, then less frequently, to assure that his lungs are clear.

We feel very good about the oncologist's recommendations.  Just last weekend he was at an annual conference for orthopedic oncologists.  Wonderful God-timing!  He consulted with seniors in this very specialized field and they all concurred that this treatment was best.  We've already had a second opinion on the path report from "THE soft tissue guru" at Emory.  And we've basically had multiple agreeing opinions from the leaders in this field on treatment, all this without having to travel and consult more on our own.  Thank you, God!

Benjamin has been so stellar throughout all of this. As a 13 year old he thinks it's pretty cool (in an odd way!) to be so "special and rare".  This is who he is now, a cancer survivor.  We pray that this will give him a deeper purpose in life, that he will use this as a testimony of God's love and care over him, and that he will have a more intimate relationship with Him because of this reality in his life. 

God is good, all the time.  We will praise Him no matter what the future holds.  Thank you so much for your prayers for Benjamin and our family.  May each of you be blessed for your part in this story, it is your story too, for you have shared your hearts with our family.