June 13th, 2013 - MRI

Thursday Peyton had his 3 month MRI.  We knew that if this MRI looked good and none of the tumors had changed then he would have his mediport removed the next day.  I was (cautiously) optimistic things would go on as planned.  However, I'm always a nervous wreck on MRI days.  My stomach is in knots and I'm always anxious to visit with the doctor about the results.  This day was no different. By 2:00 we were meeting with the oncologist to discuss the results.  He immediately told us we had things to discuss and went over the MRI images with us.  It was clear one of the tumors had grown significantly.  It had actually doubled in size since March.  He also informed us that another tumor is now showing up on the scan.  The news hit us pretty hard and the doctor left us for awhile so we could gather our thoughts and emotions.  Nurses came in to flush out Peyton's mediport and Dr. Foreman came back shortly after that.  He said that Peyton will need to go back on chemotherapy.  The new tumor may cause more visual issues if it continues to grow as it is now.  We discussed Peyton's upcoming palate surgery in July and the doctor feels it's important we continue with that surgery.  The new treatment won't begin until after he's recovered from that.  In early August Peyton will have an eye exam and MRI to help determine a new treatment plan.  Dr. Foreman explained he's not sure what chemo treatment Peyton will be on....we've tried most all the combinations. Nothing has worked really well for Peyton.  We've seen stabilization of the tumors (and that's good) but nothing has worked as far as shrinking them.  Guess we'll see how that turns out. As he explained there are other options, for example radiation, but that isn't the method of choice for NF patients due to the risks it poses.  At this point the tumors are low grade.....treating them aggressively could cause them to grow and become malignant.  He said unless we have to do that we won't.  The risks out-weigh the benefits, but if things get worse, or his vision continues to deteriorate then we may have to weigh those options again.  At this point we absolutely don't want to think about that.
On a brighter side, Dr. Foreman said there's some very positive research being done for NF patients and there's some new treatments being tried out on other types of NF tumors.  He said it's a few years before it will reach the general population but it's coming.  THIS IS GREAT NEWS!  I know there are lots of people working hard to fight this disease.  Bless their efforts!!!!
I'll update again in July as we go into surgery.......