Time Flies When You're Having Fun

Thought I would stop by to update everyone  that tomorrow Ethan will to undergo his first post-op MRI.  This should let us know whether or not any of the remaining tumor tissue has begun to grow.

We do not meet with our oncologists at CHOP until the 2nd of August, so there is no knowing if they will provide us with these test results prior to that appointment.

My baby boy is 9!!!

I can say that I fully comprehend what other parents have fittingly labeled as "scanxiety".

Ethan on the other hand seems to be thriving and living his life free from any concern.  He and Emerson have recently wrapped up a fun-filled month long stay on the West Coast with Adam's parents and just this weekend we celebrated their birthdays with a 16 ft. tall water slide.  It's hard to believe he's 9!

Not a day goes by where I don't find myself thinking how fortunate our family has been and I can only hope for our luck to continue.

Please keep him in your thoughts tomorrow and lets keep our fingers crossed for a clean scan!

We don't like to brag but....

...look at what we just completed. 



Good luck is another name for tenacity of purpose.

Yeah, that's right.  One week ago we were in an OR at CHOP having a our little nuisance of a brain tumor removed, and yet here we are 7 days later putting together Darth Maul's Sith Infiltrator.  It's only 479 pieces.  Piece of cake.

Seven days out and life is good.  Scar is healing great.  Vision and balance is 100%.  We had a stimulating discussion about Charles Darwin and Anaïs Nin at breakfast this morning.  This isn't a joke either.  Apparently a cartoon Ethan watches has a character named Anaïs (the empowered little sister) and Darwin (a fish).    A gentleman dining alone overheard our discussion and approached our table on his way out to tell me how impressed he was with my 8 year old's vocabulary.  I was so proud.  :)

It is just unbelievable that a child could endure what Ethan did and rebound from it so quickly.   It's only been a week and it feels like the whole thing was just a bad dream.  I couldn't possibly be any happier. 

So look out Millennium Falcon....  cause you're next.

That's all Folks!



17 sutures.  His own Voldemort scar.



So let's just start out by saying Ethan's surgery Wednesday could not have been any more of a success.  We can finally breathe again. 

We took him into CHOP at 7:45 Wednesday morning and they ended up wheeling him out to the OR around 10:20.  That was probably the worst thing I have ever had to endure in this lifetime.  It was what I dreaded the most heading into the surgery.  The actual "Goodbye, Ethan.  I'll see you soon".  We were then told that the OR had been booked for a 4 hour window and that updates would be provided every hour by a nurse who makes the rounds through each of the OR's for the purpose of keeping concerned parents in the loop. 

So after a good cry and a bit of regrouping, Adam and I headed off to the cafeteria to meet my mom, Adam's mother Mary, his father Joe and step-mother Jacque.  We killed about an hour and then headed back upstairs.  Within minutes, Linda the OR nurse came out to give us our first update.  She informed us that the surgery got under way about 11:20.  That Ethan tolerated "being put under" well and that the surgery had begun. We were relieved by this news.  I knew he would be in good hands.  His anesthesiologist was a really chanrming and down to earth middle aged woman who looked to be about 7 months pregnant.  I felt that a physician carrying a child would be that much more inclined to see my child successfully through a procedure such as this. 



Cool as a cucumber.

And hour later (about 12:45 p.m.) nurse Linda returned and  began by saying... "you didn't hear this from me, but the tumor is out."  Apparently Dr. Sutton chooses not to provide too much detail concerning his progress during surgeries.  She told us they would be closing Ethan up and would begin the process of bringing him back around over the course of an hour.  She informed us to stay put because Dr. Sutton would only seek us out in the surgical waiting room ONCE.  If we were to miss him, well then we would be shit out of luck (for lack of a better term).  Linda told us Dr. Sutton was unlike most surgeons who exit the waiting room immediately after their "part" is done.  She said he chooses to instead watch how his patients come up out of the anesthesia.  She said he pulls his little stool over right next to the patient and watches them like a hawk, as he looks for any suspicious behavior which might have indicated any neurological problems.  And so, about 1:30 Dr. Sutton entered the waiting room.  I cannot tell you how much I love this man.  No matter what anyone could ever say about his demeanor or bedside manner...  I feel a connection to him.  I believe our paths were indeed meant to cross.  He said the surgery went well.  that he achieved a full resection of the mass, minus the diffuse cells which had spread into the inferior peduncle.  He felt that attempting to remove them would have done Ethan more harm than good.  He said Ethan had come out of the anesthesia with very good strength in both of his arms and legs with no sign of any tremor or deficit.  He felt that it was unlikely he would develop hydrocephalus because the tumor was so small and was far enough away from any of the ventricles in his brain. Dr. Sutton informed us that we would be seen by the Oncology team at CHOP but he suspected that they would not be recommending chemotherapy and would choose to monitor any potential growth with MRI's every 3 months.  He also shared with us the preliminary path report which indicated that this was a low grade atrocytoma, much like he had expected.  He took the time to answer all of our questions... and then he left.  And that is the last time hopefully we will ever see Dr. Sutton.  After the tumor is out, he is off the case and Ethan's follow-up care will now be in the hands of the Oncology team.  It makes you sort of pause.  Just 4 hours of this man's time, just 4 hours of interacting with our unconscious son may go on to be the four most important hours of Ethan's life.  He came in, he helped to improve our son's life...and then he just moved on.   I wanted to throw my arms around this man. But I knew that was something that you just don't do with Dr. Sutton.  I fought back the tears, and a couple ended up streaming down my face.  He looked at me and said, "I know you struggled with this decision, but you did the right thing." and then he walked off.  I will always hold that man in the highest regard everyday for the rest of my life.  No matter how surly or distant or misunderstood he may be...  he is definitely my hero.

So Ethan was up in the ICU no more than a half hour later and he was combative and confused and very scared.  But over the two days which followed, he started to turn the corner.  The nurses in this hospital have to be the strongest women and men on the planet.  To give of themselves every day to some of the sickest children in the country has got to be very trying and let me tell you...  they are a gifted GIFTED bunch.    We are so appreciative of the attention and concern they afforded our son.  They readily accommodated any request we had, they answered all of our questions and they tried to ease our anxiety over watching our son struggle through the worst pain he has possibly ever been in.  We owe them a debt of gratitude.

Pilocytic Astrocytoma (Microscopic)

Yesterday we were moved off of the unit to the 3rd floor.  The oncology unit.  I walked these hallways thinking to myself....  god, are we fortunate.  Babies, toddlers, children that were Ethan's age and teens...all suffering from various cancers.  Beautiful bald angels.  It's gut wrenching to see.  Which made me all the more anxious as our meeting with oncology approached yesterday.  Late in the afternoon the final pathology report on Ethan's tumor was in.  Oncology called a meeting with Adam and I along with extending the offer to our parents.  We met in a small conference room with Dr. Michael Fisher who will be Ethan's oncology doctor.  We shut the door, and he handed down the news.  THE VERY GOOD NEWS. 

Ethan's tumor is a Pilocytic Astrocytoma.  It is a Grade 1 tumor.  First, Dr. Fisher indicated that based upon an MRI completed the day after surgery, they felt confident that Dr. Sutton had achieved a Gross Total Resection of the mass.  However, it was a near total resection when you account for the diffuse margins of tumor cells left behind in the peduncle.  But according to the MRI, the mass was completely gone with no signs of tumor showing up on the post-op MRI.  Dr. Fisher went on to explain that Pilocytic Astrocytomas rarely, if ever spread or metastasize in other areas of the brain or central nervous system.  Because of this, Ethan will not require MRI's of the spine or brain stem.  Dr. Fisher said that they rarely if ever change from a Grade 1 tumor to a higher grade.  If Ethan had been diagnosed with a grade 2, these very often turn into aggressive Grade 3-4 tumors later on in a child's life.  While Ethan's tumor COULD regrow, if it did, it would most likely arise in the same section of the brain where this initial tumor arose.  But Dr. Fisher indicated that there is know knowing if Ethan's tumor was actually growing at all when we found it.  He said there are 80 year olds who have lived their entire lives with Grade 1 astrocytomas and never had knowledge that a tumor was there.  So, because this tumor is not what we would consider life threatening, it was Dr. Fisher's recommendation that we follow the tumor with MRI's completed at 3-month intervals for the first year, then 6 month intervals the second year and then we will move to yearly scans... after which, if there is no growth and no data to go on... then we can consider this a success.  Dr. Fisher said he believes that Ethan's prognosis is really good.  This was a small tumor that was almost fully resected.  Dr. Fisher believes that his chances for living a long and full life are very good. 

After the meeting, we were all elated and shed quite a few tears.  Now we begin the rehabilitation piece.  Ethan has ataxia (unsteady gait) and walks as if he has just knocked back about 5 dirty martini's.  He has had a bit of double vision.  He's nauseous and in a significant amount of pain.  But this should pass in a few weeks.  This morning I awoke to find him assembling a LEGO's Star Wars kit in his bed while I had been sleeping.   Less than 36 hours after major brain surgery, the kid can still put a model together.  Not too shabby.  We are so proud of Ethan.  His courage, his resilience, his determination just amazes us.  We are very fortunate that we found this tumor when we did.  We are so fortunate to have such a wonderful team of physicians.  And we are SO fortunate to have so many wonderful friends and family who have helped us during this process.  We appreciate every single prayer our son has received from those that we know and those who are simply concerned strangers.  We are moved by the fact that our son and his well being has netted us the goodwill and support of those both near and far.  Our old friend, our new friends and even the friends of our friends who became aware of Ethan's diagnosis.  We thank you all from the very bottom of our hearts.

In skating over thin ice our safety is in our speed. ~ Ralph Waldo Emerson



Ethan James Brandt

 It has been 55 days since we learned  about Ethan's tumor.  Some of these days have been great.  Others, well...not so great.  I've been both optimistic and pessimistic.  I've been both strong and weak.  I've been courageous and absolutely terrified.  And I've been able to swing between these two  extremes sometimes in a matter of only minutes.

So it should come as no surprise that while I feel ready for tomorrow, I'm also ready to throw Ethan in the car and drive to South America.  Right now. 

Tomorrow is the surgery.  I am trying my hardest to keep myself together.  I'm losing the battle.  But I have to say that I am so appreciative of all of the kind words and the prayers and the warm sentiments we have received from our friends and family.  It makes me fully realize how special Ethan is and how loved he is by all who have the good fortune of knowing him. 

While Adam and I are prepared for whatever news we might receive tomorrow, what we hope (above all) is to get the same little boy back tomorrow afternoon.  That kind, sensitive, thoughtful, agreeable,  generous, caring, affable, and smiling little boy. 


Best friends.

I took Ethan to the dog park a few weeks back and after he grew tired of the  park, he took off for the playground.  I watched him as he went.  He's 8 years old and he still skips when he runs.  Ethan is a wonderful little spirit, who has always managed to see the good that exists in this world.  He whistles and sings to himself in the shower.  He loves his dog and he so easily makes friends.  And he has and will always be the best big brother in the world.  He'll tell you that Emerson drives him crazy, but for those that know them both, you know they truly are the best of friends.  He is and has always been so full of joy.

 Come what may, I know that we can handle any adversity that comes our way. But what I cannot handle is not getting MY Ethan back.  My unique and clever little boy.  I need him back so that we can continue talk about things like the periodic table, and the Titanic, and outer space, and all of those completely random things that he's interested in; those things which set him apart from any other kid his age.   Thank you lord for giving me a child less interested in wrestling and one more interested in the world in general.  Thank you for giving me this little boy who will watch a documentary with me, and remember all of it.  Thank you for giving me this little boy who I know will grow up to fight for the less fortunate, and might one day leave this earth a better place than he found it.  You didn't let me down.  You gave to me a son...a loving son. A devoted son.  A funny little sprite, who lacks a single attribute that I would ever desire to change. Perhaps with the exception of this tumor.

But we're going to take care of that tomorrow.

Happy happy little boy.

 There really is no worse reality to have to face as a parent.  I'd be angry at the world probably... but I could deal with cancer, I could deal with chemo and I will deal with radiation if that is what becomes of this.  I just can't fathom the idea of MY Ethan being replaced by a different Ethan tomorrow.  It's petrifying to to think, will his smile be the same?  Will his laugh be the same? Will he still be able to play with his Lego's?  Will he still skip along with that same zeal for life?

I sure do hope so. 

So, please pray for Ethan. Or think happy thoughts about him.. Or meditate and send a positive energy out into the universe for him. Whichever belief system you rely upon when your mind is burdened...  please, whatever you do, just keep him in your thoughts.

I will send an update tomorrow when he is out of surgery.

In the Chute

Smooth seas make poor sailors.

Well, it's been a few weeks...  I've had a cracked LCD screen in my laptop for some time and figured I'd hand it over to Best Buy's Geek Squad over my Spring Break for repair.  It's been nearly two weeks and she's finally come back home this morning.  Just in time I suppose. 

So, over these two weeks Ethan and I snuck off to Florida and had an absolutely wonderful respite with My Aunt Linda and Uncle Bill (and Jackson too!).  I picked him up from school the Thursday left, and that was the reaction that I SHOULD have recorded.  Eyes big at saucers to see me standing there.  So we headed off to Dick's and picked up a new Phillie's cap for our trip, then headed over to Game Stop for a few used DS games.  It was great listening to him try to piece it together as to where we were going.   But in any event, I was able to keep it under wraps all the way up to the doorstep of the Atlantic City airport.  If you missed his reaction on Facebook, here is the link:  http://youtu.be/yawWFOxCBPQ.

Ethan and "Swampy"

We had nearly a three hour delay, but arrived safe and sound a little after 8 p.m. that Thursday night.   We grabbed a bite at the ol' Cracker Barrel and by the time we got home we were both ready for bed.  On Friday we took a pirate cruise off the coast of Ft. Myers.  Ethan really enjoyed himself and quickly made friends with some of the other kids on the boat.  Friday night was our Florida Everblades hockey game.  He was able to clean the ice as promised and thought the hockey game was just great.  We had had seats right on the glass next to the penalty box and Linda and Bill's friend (the announcer for the Everblades) was able to get his hands on the game puck for Ethan.  Saturday included out trip to the Florida Air Show.   It started off a bit rocky... Ethan was kind of alarmed by an F-18 performance.  Can't say I blame him.  It really can be a bit overwhelming how loud a jet engine can be.  But he was able to regroup and enjoyed the rest of his day.  He rode along a zip line they had as a static display for kids and enjoyed the acrobatic performances throughout the day.  And YES, the Blue Angels were impressive as always.  Mission Accomplished.  He loved it and is talking about where we might be able to catch another performance before the end of their season.  On Sunday we awoke to a line of storms moving through Ft. Myers and thought our deep sea fishing plans might be thwarted.  But we persevered.  Bill, Ethan and I threw caution to the wind (10-20 m.p.h. with 2-3 ft seas) and went anyway.  The rain moved out, but the fishing was a bit lackluster.  But we still caught enough for Ethan to consider it a success.   It was a fun-filled weekend, but exhausting even for an 8 year old.  So kudos to to Linda and Bill for being such great sports and a huge thank you to them both for their tremendous generosity and hospitality. 

Our lovely accomodations!

Since returning home, a lot has happened.  We were able to secure a second opinion on the surgery from the Dana Farber Cancer Center in Boston.  Dana Farber and CHOP share the top spot for Children's Hospitals in the US for 2011-2012.  Dana Farber is #1 for Neurosurgery/Oncology and CHOP is #2.  But cumulatively they both ranked #1 this year.  Dana Farber received Ethan's films and reviewed his case for free.  The results of this review created some uncertainty as it was their recommendation that we could afford to hold off on the surgery for the time being.  They felt we would be fine with MRI's conducted at 3 month intervals.  They felt that it boiled down to the risks of surgery vs. the risk of doing nothing.  However, they did indicate that if there was any change to the tumor on any subsequent MRI's, that they would then recommend a surgical intervention.

As much as Adam and I would like to believe that Ethan has a tumor which might never grow or change going forward, we feel this the chances of this happening are slim.  So, as a result, we have elected to stay the course and the surgery will occur as scheduled on April 11th.  On Wednesday I donated my blood and yesterday we had our pre-admission consultation.  They also asked us to take part in two research studies.  One is to assess adequate pain management in children undergoing a craniotomy and the other is a genetic study related to commons childhood disorders.  It's a teaching hospital and we thought we'd like to help in any way possible to chart a course for any kids who might one day find themselves under similar circumstances.




Lots of cool things to see at the Florida International Airshow

So, we are in the chute now.  On Wednesday, Adam and I will be with Ethan in CHOP's PACU prior to the surgery.  They will give him liquid Versed prior to the surgery to lessen his anxiety.  They call it the "laughing juice".  We will be able to remain with him right up until they take him into the OR.  They will take him back and will give him Nitrous Oxide to knock him out.  This is a relief.  He'll get the IV without ever knowing it.  The surgery will take 3-4 hours and they will update us sporadically on how the surgery is progressing.  They will then bring him around while in the OR.  As soon as he is awake, we will be reunited with him.  From there we will go straight to the Pediatric ICU, where he will remain for the entire 5 days.  They feel it is best for children who have this surgery to have the individualized attention of one nurse.  We believe he will be in a room by himself.  Either Adam or I will be able to spend the night with him each night.  Parents can visit 24 hrs. a day.  For those of you who would like to visit Ethan during his hospitalization, he can have guests between 10 a.m. and 9 p.m. each day.   I would suggest that we keep his visits to a minimum on Wednesday and on Thursday I would suggest that you contact Adam or I before coming to the hospital - for no other reason than to maybe save yourself the trip if he really isn't feeling up to it.  At this point we have no idea of what to expect post-op.  He can have 2 guests at a time while in the ICU, and please if you are feeling under the weather or have a cold....then we would encourage you to maybe stop by for a visit after we have been discharged from CHOP.  Oh... and if you were going to bring a balloon, no latex ones. Only Mylar. :)

So that's the latest.  I'm feeling pretty optimistic overall. 




Plum tuckered after our trip.

 

As an aside, my commencement dinner is Saturday night at Albright. I will also be inducted that night into the Alpha Sigma Lambda fraternity for my academic achievements.  I didn't know whether or not to attend, but decided that there are going to be enough family and friends to hold down the fort for one night.  I received a letter in the mail last week indicating that I had been selected by the head of the Business Administration and the Business Administration faculty to speak on behalf of all of the 2012 Business Administration graduates.  They wanted to know if I would accept their offer.  I'm flattered and really proud of the accomplishment but I wonder if I'll be emotionally capable of pulling it off.  I haven't written a single word....  so that is what is on my docket for the rest of the day.  I'd have to say though it's served as a wonderful distraction this past week.  I've made my peace with the surgery and I know it will be a complete success.  The speech, maybe less of a success but certainly something to take my mind off of things albeit temporarily.

Blood Bank

Well I met you at the blood bank

We were looking at the bags

Wondering if any of the colors

Matched any of the names we knew on the tags.

You said "see look that's yours!

Stacked on top with your brothers

See how they resemble on another

Even in their plastic little covers"

And I said I know it well.

About 3 months ago I heard this folk band Bon Iver sing for the first time.  It was a song called "Blood Bank."  I instantly loved it and have been listening to it on a loop ever since.  Bon Iver, as you may know by now, was awarded the Grammy this year for Best New Artist.  So you should really listen on YouTube or buy this song on iTunes.  Go. Go now. Do yourself a favor. 

In any event, this song that I loved so much kind of took on a new meaning today when I opened the mail. 

I received my card for Ethan's "Directed Donation".  Never thought I'd see my son's name and "transfusion date" next to each other. 

This was a rough week.  To label it a roller coaster is a bit cliche', but appropriate.  Some days you kind of forget what your up against, if but temporarily.  And then you get your blood bank ticket in the mail. 

On a brighter note, we are off to Florida tomorrow.  I (somehow) have managed to keep this a surprise.  You go through life with so few genuine surprises.  The best surprise I have had so far in this life, without a doubt, was when I first heard the words "It's a boy."    I hope to catch Ethan's surprise on video when I break the news to him.  I hope it will always serve, for the rest of his LONG LIFE, as one of his first genuine and cherished surprises.  

 I cannot tell you how happy I am to be taking this trip with my son. 

26 days

Just scheduled Ethan's surgery.  April 11th it is.  We we will be heading back to CHOP on April 5th for pre-admission testing and counseling.  It's a two hour appointment, during which Ethan will have a history and physical taken, labwork drawn and then they will counsel Adam and I on what to expect post-op (wound care, restrictions etc.)

They have asked that we give a unit of blood. So either Adam or I will do that.  Adam is A+ like Ethan. I'm A-, so either of us is a good candidate.

But just thought I would let everyone know.

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.

Studying for Dr. Sutton

So, tomorrow is the big day.  Adam and I head off to see Dr. Sutton at Three in the afternoon.  I've been devoting HOURS towards reading up on the different parts of the brain.  After receiving the MRI results this morning by fax, I figured it would be prudent to familiarize myself with some brain anatomy.  This is what was listed under the FINDINGS section of the MRI results:

"Allowing for differences in technique, there has been no significant interval change.  Again noted is the expansile lesion involving the left cerebellar flocculus and inferior aspect of the left middle cerebellar peduncle.  the well defined rounded focus of T1/T2 prolongation in the most inferior portion of the flocculus which measures approximately 8 mm in diameter is unchanged in size and signal characteristics.  There is unchanged more expansile T2 prolongation in the flocculus/middle cerebellar peduncle further superiorly.  This latter component does not demonstrate postcontrast enhancement and is consistent with nonenhancing tumor while the more circumscribed inferior component shows faint heterogenous enhancement best appreciated on the postcontrast spin echo images.  Facilitated diffusion is seen within the lesion, and there remains no restricted diffusion associated with this lesion.  Again, there is no significant mass effect on the adjacent structures.  "

So, for those of you who are curious where exactly this tumor is located, it is just to the left of midline, and I have marked the general vicinity of the tumor location on these pics....

Cross section of the cerebellum




It's tucked in there pretty deep.



I'm off to bed to try to get some rest and psyche myself up for tomorrow.  I hope Adam and I will be able to tackle whatever news we receive....

Carolina on my mind

So just when we thought our world was turned on it's ear... we lost my grandmother (Mabel Tipton) last night.  She was 90 years old.  I have yet to inform the kids of her passing, but I expect Ethan to take this news rather hard.  When we left the hospital on the day he was born, her house was our first stop. Not very many kids have the good fortune of getting to spend 8 years of their life with their great grandmother in it.

I love this picture. Found it in her closet last night.

While Emerson was always a bit reluctant to go over and give Nanny a kiss on the cheek, or to engage her in conversation...  Ethan could always be relied upon.  Of all of Nanny's grandchildren, she had the most exposure to my children as a result of our proximity to her home.  I believe that they brought a tremendous amount of joy to her during these twilight years.  I am truly grateful for all of the time she was able to spend with them.  It pleased her to no end to see the kids scarf up the fresh green beans from Uncle Bud's garden which were a staple of most meals we shared.

Ethan did have an opportunity of seeing her alive last Thursday.  We visited after the MRI and she was resting comfortably.  But Nanny's passing will be their first exposure to death and the grieving process.  This will be their first funeral and viewing.  That's upsetting for me, but it is my hope that they might adopt my own personal take on the issue.  I'd rather them view this event as one which should be celebrated.  I'm not an overly spiritual person but I do believe that Nanny has gone home.  Whether that's in heaven, some other reality like the mountains of North Carolina....  I hope that wherever she has gone that she is happy, free, and surrounded by all of the people and things that she loved.  The kids were made aware that she is dying and I explained to them that what they might soon see is only but a vessel and that her spirit, which made her uniquely Nanny, or what makes me uniquely me, or their dog Moe uniquely Moe isn't a physical thing that you can touch.  Once the body fades away, the spirit has to go somewhere... out there into the ether I suppose.  So I tried to really impress upon them that she's not gone, that the part of her that we loved most lives on. 

And they seemed pleased with that idea. 

I know Emerson will process this easily.  Ethan is another story.  He'll be devastated for sure.  I plan to tell him tonight after school.  As always, keep your fingers crossed for the bug.

Fortes fortuna iuvat

On Thursday the 8th of March we had our MRI with contrast.  It took three attempts to place the IV.  It was heart wrenching to say the least.  By the third try, Ethan was clawing at me, begging me to keep them from sticking his again.  Finally his first nurse abandoned the effort and turned the reigns over to another nurse who got the IV in right away in the arm as opposed to the hand.  Poor little bug. 

Just a little pinch they say.  Liars.

So, they dismissed us to the waiting room and Ethan once again did a fine job at holding still for the test.  He was out an hour later.  Do these people know kids or what?  they come out of the MRI, and there in the hallway is an ICEE machine.  Is there ANY boo-boo or procedure that an ICEE machine can't improve upon?  I doubt it.  I'll probably be installing one in my kitchen before this is all said and done. 

I think we're going with the arm from now on.

We had hoped for results that afternoon.  But didn't hear anything until Friday morning.  I received a call from Dr. Sutton's nurse Laura.  At first I was optimistic.  I felt that she would simply be calling to say, "Hey, MRI results were in line with what we expected.  See you guys in three months."  But this unfortunately wasn't the case.  She tried very hard to not provide me with any of the details I was looking for.  I had a whole line of questions ready to go ahead of her call.  What were the margins like?  Had it grown?  Did it enhance?  Was it well vascularized?  Etc.  She only said this... "Dr. Sutton would like you and Adam to come back down for an office visit.  The tumor is bigger than what was previously thought and he wants to discuss other treatment options with you."  I was thunderstruck.  So I pressed her....  I said, "Does this mean that we are no longer taking a watch and wait approach?  Does this mean we are now looking at a surgery?"  She simply said "Yes".  I then told her that I had no objectons to returning to CHOP but that I couldn't wait a week before having some concrete information.  She understood and said that Dr. Sutton was in the office and that she would speak with him and that either she or he would call me back.  And hour or so later, it was her again.  As before, she said he wanted to see us.  He wanted to discuss the results in person with us.  And that he wanted OUR input concerning treatment option.  Now, during our first visit to meet Dr. Sutton, he explained there are only 4 options in treating a brain tumor.  1.  Do nothing (watch and wait) 2. Surgery 3. Chemotherapy and 4. Radiation.  Assuming that Option 1 is no longer viable, I can only assume that we are moving onto #2.  that is if he still believes this tumor to be operable.  During the second phone call from Laura, the only additional information she provided to me is that the tumor has some diffuse and local margins.  This makes it more consistent with a Grade II glioma.  These are a bit more invasive, hence, the diffuse margins.  Additionally, these are more likely to return after a resection. 

This is horrible news for any parent to hear and digest.  We are now scheduled for a 3 pm appointment with Dr. Sutton at CHOP on Wednesday, March 15th.  

It is my intent to try to provide timely updates concerning how things proceed from here.  Please keep Ethan in your thoughts.  I should note, that he is aware of the tumor.  He understands what the surgery will entail.  He doesn't seem very phased by it... or at least I hope he isn't.  But if you really know Ethan, you know how intuitive and sensitive he is.  He's an old soul and I don;t doubt that he probably is a  little anxious about things, but we are going to do our best to be as brave and strong as we possibly can for his benefit.

"There is something on the MRI"

So.... as I set foot in the door not but 2 hours after the first MRI, I received a call from the pediatrician's office.  I could hear my cell phone ringing in my purse, but couldn't get to it before the call ended. 

Father and Son at Mara's.

I then received the call from Adam who told me that he received a call from Dr. Burns and that the found something on the MRI.  Quite frankly, I don't recall very much of that phone call with Adam.  I just remember hanging up and frantically calling the pediatrician back. 

Dr. Burns said to me that they had found what was being labeled a "low grade glioma" on the cerebellum.  After receiving these results she had immediately called the Dept. of Neurosurgery at CHOP and happened to catch Dr. Leslie Sutton while he was in his office.  He was able to review the films from his PC and told our pediatrician that there was no need for us to come to CHOP right away.  He said to Dr. Burns that these are generally slow growing and very common tumors among children.  That quite often they are benign and cystic in nature.  From these first films Dr. Sutton believed that Ethan's tumor had clean margins which make it consistent with a Grade I tumor.  He informed Dr. Burns to have us schedule an office visit for his first available slot.  She tried to ease my mind, and encouraged me not to discuss this with Ethan.  She felt that it would not do him any good to have anything else to worry about.  Dr. Burns  warned us in advance that Dr. Sutton isn't necessarily the "warm and fuzzy type" nor was he a hand holder.  We were assured though that he is quite possibly one of the BEST pediatric neurosurgeons in the country and definitely the best in Philadelphia. 



The atrium at CHOP. Amazing Hospital.

On February 23rd, we set off to meet with Dr. Sutton.  I was terribly nervous.  Because, to be frank, I felt as if I could use a little hand holding.  However, I felt that he was totally appropriate.  As "the mother" he seemed to address a lot of the information directly toward me.  I think that after years of operating on the brains of children, its not lost uppn him that this kind of news weighs heavily upon us mothers.  He started the appointment off by telling plainly, "This is an operable tumor.  One which I CAN get out."  Phew.  Deep breath. Felt as if an elephant had been lifted off of me.  He went onto say that he has patients who have had these types of tumors for years, and have never needed any surgical intervention.  He inquired as to what led us to pursue the MRI in the first place, and then proceeded to tell us that the tumors location in the cerebellum would have in no way led to the hallucinations or headaches.  Certainly, if this tumor was to grow and if any swelling accompanied it, then yes... but at this stage, Ethan has no edema in the brain.  He is currently symptom free.  As such, it was Dr. Sutton;s advice that we could take a "watch and wait" approach.  His only concern during this visit was the tumor's proximity to the brain stem.  He in no way indicated that this would prohibit him from surgically resectioning the tumor but felt that surgery could reveal that the tumor was tangled up in some of the brain stem nerves which affect things such as breathing, swallowing, heart rate and upper shoulder movement.  It was my interpretation that this might ultimately prevent him from a 100% resection.   But he seemed to think that this first MRI film was not sufficient enough to give him an idea of the tumors location in regards to the brain stem and felt confident that it was at a more favorable location in the cerebellum.  He did however ask for us to have another MRI completed with contrast.  This dye is to enhance the tumor, to reveal its margins and provide him with a better understanding of the tumor's characteristics.  But he felt if these results were favorable, that we could simply monitor the tumor with MRI's occurring every 3 months.   We left feeling very confident.  This man is clearly a brilliant individual.  He informed Adam and I that in the coming years, he sees shifting his practice more towards addressing the needs of pregnant women who carry fetuses afflicted with Spina Bifida.  He literally operates on the fetuses while in Utero.  He closes up the spinal cords of the unborn, as a means of improving their odds of being able to walk one day.   He's been a pioneer in this field.   So, if he has the demeanor of Walter Matthau, but the mind and hands of DaVinci...  I'll take it.  Adam and I set the MRI up for March 8th.  Because the MRI requires the contrast agent, we knew it meant another IV for Ethan.  The first IV at CHOP weeks earlier let us know that he has these little thready veins.  They had a hard time sticking him the first time... so I was really dreading the next MRI.  But we put that aside, and tried to take comfort in the good news that we had probably dodged the surgery bullet and headed off to catch a late lunch/early dinner at Mara's in South Philadelphia.

A Not So Happy New Year

Do they get any cuter than this kid???

Greetings from Pennsylvania!  Thanks to Joe and Jacque (Adam's father and step-mother) for creating this forum which will allow me to bring many of you up to speed concerning the most recent developments in Ethan's diagnosis and subsequent updates as we undertake this endeavor. 

I suppose that I should begin with a history of how we have arrived at this place...  so let's begin in December of 2010.

For several years Ethan has struggled with concentration in school.  Many of his teachers had long maintained that he stood to benefit perhaps from ADD medication which might improve upon his focus.  This has been an issue since the 1st grade but Adam and I, having a background in the Mental Health industry, were a bit reluctant to give him any sort of psychotropic medication.  These teachers however were spot on when they indicated that as the years progressed, Ethan would become aware of his limitations and that it might lead to frustration on his end as his peers began to pull away from him academically.   Sure enough, late last fall, Ethan had grown very disenfranchised with school and all but loathed having to complete his homework.  He was clearly disappointed in his handwriting skills, which seemed to only add to his anxiety during the homework routine.  It was at this point that we approached Ethan... to determine if in fact he could sense a growing academic chasm between he and his classmates.  He acknowledged his frustration and after discussing a pharmaceutical intervention, he was eager to give it a try. 

We then took these concerns to our pediatrician, Dr. Jordan Spivak.  We completed the appropriate paperwork, surveys, questionnaires... and Ethan's scores did indicate that he probably was suffering from ADD (Attention Deficit Disorder).  We also discussed with Dr. Spivak that a possible Aspberger's diagnosis had been tossed around following psychological evaluations at the school.  Because we had never received a formal diagnosis, Dr. Spivak thought it would be best to refer Ethan to a Child Guidance Center here in Coatesville, PA.  But in the meantime, we were prescribed a low dose of Adderall XR.  Dr. Spivack indicated that this medication would be out of his system by bedtime if it was taken early enough in the morning.  He also informed us that on days that Ethan was NOT in school, he did not have to take the medication.  That it did not have to "build up" in his system to be therapeutic.

We began this medication only a few days before the Christmas holiday.  Everything seemed fine.  However, over the holiday, he did not receive the medication.

We had a great Christmas.... 

On January 4th, Ethan returned to Bradford Heights Elementary School, where he is in the 3rd grade.  It was during the 1st week of January that he began taking this medication in earnest.  Within days, his sleep patterns had completely changed.  Prior to taking this medication, Ethan had been the type of child who would promptly retreat to his bedroom around 8 p.m., change into his jammies, and who would sleep soundly for a solid 10 hours.  Well, those days are now gone.   Maybe 10 days after taking the medication, Ethan became very paranoid after crawling into bed.  Every noise (both real and perceived) had to be investigated.  This occurred at both my home and at Adam's home.  We really had room for concern when Ethan approached Adam to inform him that "he had seen his toys moving, despite knowing that things like that shouldn't happen".  Adam reported these symptoms to me, and I was of the opinion that the medication should immediately be stopped.  I quickly began a search online, only to learn that the FDA had issued warnings about hallucinations and these medications.  We again contacted his pediatrician with our concerns and he believed we could try a different medication, Concerta. 

Ethan took this medication for ONE DAY.  On the evening of the day he took the Conerta, Ethan reported to me that he was seeing a man at school, wearing blue jeans, a white and red striped shirt with a gold belt buckle.  He said the man was tall, thin and always carrying a hammer.  He said he first saw him sitting at the base of the stairs on the first floor of the school.  Then he saw him over the coming days in the hallway of the school.  He said sometimes he would be at the near end of the hallway, and then he would sort of flash and be at the other end of the hallway.  Well - you can imagine my horror with this level of detail.  That night Ethan slept with me, if you could qualify it as that.  He tossed, he turned, he cried, he wet the bed...  he was as rigid as a stick.  I could only think to myself... WHAT HAVE WE DONE.

Body of the car, before the wheels.  Totally his idea.

It was my hope that by discontinuing the medication, that these symptoms would abate.  But they did not (initially).  Now off all medication, we headed into out much anticipated Pinewood Derby weekend.  Ethan is a Cub Scout and he enjoys being a Cub Scout more than anything.  this year, he elected to make his Pinewood Derby Car into a Hershey Bar.  We were up early that Saturday morning in the beginning of February, and Ethan was anxious to get going.  BUT, before we left, he complained of having a bad headache.  I gave him two Tylenol, and out the door we went.  I watched him in the car, and I could see that he was still in pain.  We arrived at the Derby, but despite his enthusiasm, he looked uncomfortable.  Within 30 minutes, he was in tears from the headache.  So much so that Adam had to leave the Derby to run home and retrieve

Although it didn't win a single race, he won most original car.

That following Wednesday, we received a call from the school.  Ethan had another headache.  He appeared confused and was struggling to remember his teacher's name and was not responding in context when asked particular questions.  We immediately called the pediatrician's office.  Our usual physician did not have hours that day, so we were given an appointment with our NEW HERO, Dr. Sandra Burns. 

Thank god for Dr. Burns.  When we met with her, and provided her with the entire history, she was shocked that her fellow pediatrician (Dr. Spivak) had not referred us to CHOP (Children's Hospital of Philadelphia). She felt that Ethan should have an MRI completed to rule out any pathology.  We were in complete agreement. She said to us, "If this were my son, he would have already been seen by now at CHOP".

She gave us a script for an MRI, and the number of who were to contact at CHOP and sent us on out way.  But it must have weighed on her mind a bit that evening, for the next morning she arrived at her office and called CHOP herself.  The CHOP team felt Ethan should be seen immediately.  She contacted Adam and I and within hours we were in the ER at CHOP. 

Our first CHOP visit

Ethan was seen by an ER physician, a developmental pediatrician, two psychiatrists and a Neurology consult was scheduled.  The team conferred and said that this could be a number of things from a psych disorder, to Aspbergers, to a metabolic disease....  but we were only at the beginning of what could be a very long road.  However, they included Dr. Burns in their treatment plans ans she STILL insisted upon the MRI which was not performed at CHOP that day.  So, we left, and immediately scheduled the MRI for February 15th. 

By the time February 15th arrived, the hallucinations were now gone, the headaches were gone, and Ethan was doing much better overall.  He is still fearful at bedtime, but we ascribe this to a residual anxiety surrounding the hallucinations he was having at bedtime. The MRI took place at CHOP Pediatric Imaging Center in King of Prussia, PA.  They had intended to sedate him, but the radiologist who met with Ethan thought that he was an excellent candidate to forgo the sedation.  Ethan quickly grasped the importance of holding still and assured us he could do it.  And he did.  I was allowed to sit in on the MRI and my little "bug" didn't move a muscle.  SO we left the MRI and went directly to the Cheesecake Factory, thinking that all of this would soon be a thing of the past. 

We couldn't have been any more wrong.