Friday, April 3, 2009

Results Part 2

We met with the surgeon today - nice guy with bad news.  It appears Nick has a cancerous tumor, just not sure which kind of cancer.  He and Dr. Chen think it may be lymphoma caused by Nick's prior chemo and/or radiation treatment or the rhabdo is back - both are very fast growing and did not appear on the CT scan Nick had on 2/9/09.  Yes, there is a chance it is not cancer, but they don't think so.  They also don't think it is pancreatic cancer, which is a good thing, oddly enough.  Pancreatic cancer has markers you can pick up on a blood test, so Nick gave blood again for the 3rd day in a row.  Hopefully this time, they'll also remember to test the liver and pancreas levels.

Nick is scheduled to have an endoscopy guided by ultrasound Monday at 1:00 p.m.  He has to be there at 11:00 a.m. however, and the procedure will take about an hour.  He will have general anesthesia and the scope will have a camera as well as a needle to obtain the biopsy.  They will look at the pancreas as well as the celiac artery.  They decided against going in through the tummy to get a core biopsy because of the risk of spreading any cancerous cells in his abdomen.  They feel they can get enough info; I'm not so sure.  There are 20 or so different types of lymphoma, and rhabdo is persnickety - both cancers need more tissue to differentiate type.  But, I trust Dr. Chen and we'll see what happens.  

They don't anticipate doing surgery any time soon as the tumor is too close to the artery by the spleen and they can't get clean margins.  If it is lymphoma, they will do chemo; if it is rhabo, we'll go straight to radiation to reduce the tumor.  It is extremely ironic that it is almost 2 years to the day that we were in Salt Lake City Regional Hospital hoping and praying that Nick had lymphoma in his cheek instead of rhabdo.

We should have results by late Monday afternoon; Tuesday at the latest if Dr. Chen wants to consult with any other specialists or if they need to do more stains (pathology tests).  I have sent a package of information (all the scans) to Dr. Albritton in Boston to see what she thinks of all this news, too.  Dr. Chen & Dr. Mulvihill haven't seen anything like this before.  Nick is proud of that.

Speaking of, I'm very proud of Nick.  After listening to what the surgeon had to say, Nick simply said, "Ok, I'm ready, let's do it."  The rest of us aren't nearly ready yet (are we ever?) but he remains steadfast in his eternal optimism and resilience to face it all head on.  Impressive, to say the least.  I'm just numb.  Nothing else to do but "do it" - we'll start on Monday.  In the meantime, please join us and pray like crazy that it is lymphoma, or better yet, pray for healing.

With love,


Anonymous said...

This is horrible news. I pray & hope that somehow.. someHOW it is not cancer (not rhabdo OR lymphoma!!!) UGHHH!!
Thinking of u guys during this very difficult fear zone...

Karin (rhabdo-kids list)

Anonymous said...

I have been following your blog for sometime now and even though we don't get to see each other very often, I feel like I have really reconnected to your family. I will keep you in our prayers, since it is holy week, I'll be praying a lot.
Lynda (cousin)

Chris Ulvin said...

Dear Nick - I've read ahead and know the biopsy results. The realization that entered my heart is "that our awesome God has read ahead for eternity" and has a good and loving purpose for all his children. I find great hope in the fact that my prayers for you are taking place during Holy Week. I love you. aunt Chris