Noah's Post 2nd Surgery Follow-up Treatment

The last 6 weeks have been extremely hard, with the tumor coming back so quick the doctors at Penn State Hershey recommended that we follow-up surgery with some sort of radiation treatment.  There is a treatment called gamma-knife and that sounded so obvious (from a non-doctor point of view) to use.  Three out of the four doctors recommended it, went over it with us.  But the fourth met with us, gave us a heart felt discussion on how he believes Gamma Knife wasn't enough, that we should consider proton therapy (another radiation treatment delivered at CHOP - Philadelphia).  At the end of that appointment we agreed that CHOP should review our case and we believed we were headed to Philadelphia.

I actually started this blog post before we got the final review from CHOP, I had all the descriptions between Gamma Knife and Proton, trying to figure out which treatment is best for Noah.  But after what seemed like months waiting for CHOP to review our case, came the call I wasn't expecting.  The treatment which I thought was out of the question.  CHOP IS RECOMMENDING WE DO NOTHING; or better put wait until his next MRI to decide on how to move forward with treatment.  The believe that because the pathology didn't change between the two tumors, and that each 6 months you can wait before treating with Radiation will help the brain develop.

So for right now, we are waiting 6 weeks until his next MRI.  The Hershey doctors are suppose to be reviewing what CHOP did and recommended.  And if any of the doctors reviewing his case objects, we will get a phone call and hear why.

I am actually a little relieved, Noah seems so healthy and to put him through any radiation scares me.  The point of surgery, in his type of tumor, is to remove the entire tumor and that (in theory) should be it.  I am also relieved that CHOP basically did a second opinion on his case, the reviewed everything including the pathology.  They agreed with Hershey on the pathology, which gave us some relief.

So there it is, a short version of what has been stressing us out for the last 6 weeks.  Event though the stress hasn't left, we don't have to worry if we are making the right decision on adding radiation to a benign tumor.  But we are waiting again, waiting to see if it is coming back, waiting to see if we got it all this time, waiting, waiting, waiting.

For all of you following his (and our) story, please keep us in your prayers, good thoughts and good mojo.  In approximately 6 weeks (maybe 7) we will find out if we made a good choice of waiting.

Until then...

Noah's Spinal Tap (after 2nd tumor) Results and his recovery

On September 4th Noah had to have another spinal tap to make sure the re-occurrence of the tumor didn't spread into the spine and spinal fluid.  Like every other obstacle Noah has had to deal with he just rolled right through it.  Last Friday we got the results back showing his spine is still clear from any tumor cells.  This is great news!  We are continuing on the path we thought we were headed.

His recovery from his second surgery seems to be going so much quicker.  He only missed the first day of school due to the spinal tap.  And he is still loving school, even though he can't participate in recess or gym.  He incision is looking really good, and his hair is growing over it.  With as healthy as he seems it has been difficult keeping him under control.