Et Tu(mor) Brute!

So March 15th is upon us, and you know what they say.... Beware the Ides of March.  I'll tell you why..

'The Ides of March" by Vincenzo Camuccini

Today we met with Dr. Sutton at CHOP.  And, much as we had expected, it is his recommendation that we remove Ethan's tumor.   But he did however give us the option of waiting another 3 months, repeating the MRI and then reassessing. He said that if that was our desire, then that would have been "perfectly fine with him".  However, he showed us the films of what was first believed to be the tumor and then gave us a comparison of the actual tumor size, based upon his most recent MRI last week.  It is clearly larger...  not necessarily the primary mass, but the "rogue" cells which constitute the tumors "diffuse" margins. 

He informed us that Ethan's tumor is located on his left flocculus.  The problem with the location of this tumor is that it imposes upon the inferior peduncle.  This inferior peduncle contains a bundle of nerves, and in Ethan's case, this particular bundle is responsible for arm movement.  Dr. Sutton then asked which is Ethan's predominant hand.  We informed him it is his right hand.  He was happy with this news, BECAUSE, one of the things we should prepare ourselves for is the likelihood that Ethan could emerge from this surgery with what is called Dysmetria, which would likely affect his left side.  Dysmetria translates into a tremor of the hand.  This could last a lifetime, or it could be transient, OR this could be improved through Occupational Therapy and Physical Therapy.  If his right hand were affected, then Ethan would have to learn to write with his left hand.  He then discussed the side effect of Hydrocephalus with us.  This occurs when a ventricle (which produces CNS fluid a.k.a Spinal fluid) produces too much and the fluid begins to collect in the brain.  I am uncertain if this is a common side effect of surgery, as a result to the invasiveness of the procedure...  but in any event, this increase in fluid would result in pressure on the brain.  To circumvent this from happening, and if he did develop hydrocephalus (which is not a certainty) a shunt would be placed in his brain.  According to Dr. Sutton, this is a simple procedure which takes less than 25 minutes to complete. This shunt would drain the excess fluid from his brain into his body.  The concern surrounding a shunt is that they can clog.  In which case Ethan would have a violent headache and become nauseous.  We would have to be diligent in monitoring any symptoms which might indicate an occluded shunt - because left un-remedied - his life could be threatened. 



Thank god for people like this man.



As for the surgery... Adam and I truly trust our son's life in the hands of this surgeon.  http://www.chop.edu/doctors/sutton-leslie-n.html?view=2 His confidence, straight forwardness and honesty are certainly not lost upon us.  He answered all of our questions and told us if we needed any further clarification that we could call him at any time. 

So, this is what the surgery will entail.  He will remove a piece of Ethan's skull at the very base of his brain.  Right at the juncture of the uppermost cervical vertebrae and the posterior skull.  He may or may not replace the bone fragment at the end of the surgery.  I should have asked why, but I was too intent listening to him describe the process.  The surgery will last anywhere from 3-4 hours.  The incision will be midline, but will almost begin at the upper part of his neck.  Which is kind of a relief that he will not be left with a prominent scar.  He said we can expect Ethan to be in the hospital for 4 to 5 days, assuming everything goes smoothly.  Afterwards, he will recuperate at home for the following 7-10 days.  After which he can return to school  He will be prohibited from any contact sports for 1 year.  Although Dr. Sutton said he'd consider letting him play baseball with a protective helmet.  (I think we'll pass....).  During the surgery he will take a piece of the tumor out which will be frozen and biopsied. He will receive a preliminary report within hours of the biopsy but final results will not be available until 3-4 days post-op.  The night following the surgery, he will have an MRI which will give him (and us) a percentage of the tumor removed. 

And this is where the shitty news starts (for lack of a better word).  So, this tumor, as mentioned previously, is close to the inferior cerrebellar peduncle.  Dr. Sutton will remove the BULK of the tumor from the flocculus.  Imagine a beehive.  He would be taking the beehive out - the actually mass.   But there exists these "rogue" bees (single cells) that are out there co-mingling with healthy cells.  These rogue cells could continue dividing - and could turn into other masses.  They are single cells interspersed, and much harder to isolate for removal.

 If this tumor occurred in an area of the brain where the rogue tumor cells were embedded in tissue which were not vital to the brains function, then Dr. Sutton could hunt them down and remove them.  However these rogue bees left behind in Ethan's case ARE located in the vital inferior middle cerebellum, near these nerve fibers.  I believe this was Dr. Sutton's way of letting us know that we should not anticipate a 100% resection.  To dampen the blow of this news, Dr. Sutton said that what they often see however, is once this beehive is removed (he used the term "mother ship") these rogue cells often die off.   We can only hope and pray this is the case in Ethan's instance.  He also said that during the last MRI he requested that the tumor be mapped during the MRI.  He said this basically gives him the GPS of where exactly the tumor is inside of Ethan's brain.  He said that the tumor is situated in an area with "a lot of good landmarks" and he feels very confident that he can go right in and get it.   After the surgery, Ethan will then have another MRI in three months, during which they will (naturally) look for any new growth.

Two peas in a pod.

So - this is our new reality.  Living on pins and needles in 3 month increments.  But hopefully we will be blessed with many many years of clean scans. 

Dr. Sutton did say that he DOES believe this to be a benign tumor.  He said that he considers this still to be a Grade I / Grade II Astrocytoma which has probably been growing for a very long time in Ethan's head.  He did caution us by saying that there have been occasions where they were completely wrong.  But for now, there is no way of knowing until the mass comes out and is biopsied if  this tumor is any way malignant. But he really impressed upon us that he doubts that this will be the case. 

He did clear me to take Ethan to Florida next week.  He has no idea about the surprise I have planned for him.  I intend to pick him up from school Thursday afternoon and steal away to Florida with him.,  He has always wanted to see the Navy Blue Angel's fly, so we are going to spend some time with my Aunt Linda and Uncle Bill Lane in Ft. Myers for a few days - during which we will attend the Florida International Air show.  My Aunt and Uncle, both hockey fans, have made arrangements for Ethan to drive the Zamboni during one of the intermissions to clean the hockey rink ice and then we will finish out our trip with a deep sea fishing trip.  After our return, we will square away pre-admission testing.  

It is our intent to have a wonderful Easter dinner at my Uncle Bud's home, where we have our annual Easter egg hunt.  And then, most likely, we will schedule the surgery for  the day after Easter...April 9th  or perhaps Tuesday, April 10th.

So you nasty little tumor, it looks the Ides of March are upon you.  Beware, because your days are numbered.