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Evan Pertile - A Future Soldier and SYSK Follow Up

Posted By Blackfive • [October 23, 2009] RE: Evan Pertile - A Future Soldier You Should Know
RE: Spiritual Warfare Needed - Evan Pertile
RE: Some Spiritual and Caring Bridge Warfare Needed
RE: Evan Pertile - SYSK Follow Up
RE: Evan Pertile - Returned to Duty

Received this update from Brenda, one of Evan's guardian angels - read the whole report.  There's fantastic news at the end but we still need to send prayers and positive thoughts for Evan to stay healthy through this latest flu season as his immune system is still weak:

Dear Evan's Army,

Evan has been very excited about the response he received after his story was in the October issue of Soldiers Magazine.  He loved reading all of the guest book postings from his new friends.  It always amazes me that strangers take time out of their busy day to write words of encouragement to Army Strong Evan.

Evan received two packages from Afghanistan recently which he absolutely loved and which completely moved Alex and me.  One package was an Airbourne flag, signed by many brave men and women overseas, an Airbourne football (which William is actively coveting...), some Army Coins of Excellence, and an American flag that was flown in combat in Afghanistan in Evan's honor with an accompanying certificate from the pilots.

 Well, if that wasn't enough of a a tear-jerking present, the next day the other one arrived.  This one was a beautiful, very large frame from more friends.  The matting was signed by courageous members of our military.  The items displayed are so wonderful.  Yes - he received another American flag that was flown in his honor in combat along with the certificate signed by the Pilots.  The flag was folded in the traditional triangular shape and there was a perfect area in the display for it and for the certificate.  Surrounding the flag along the border were patches, probably taken off our brave soldiers' uniforms.  Evan of course thought this was "super-cool".

Thank you so much to the wonderful people who sent these awesome gifts to our son.  They mean so much to him!

Evan and I are sitting in the plane en route to Memphis right now.  He is very excited to go back and see his doctors and the great staff at St. Jude.   We are hosting a little pizza party tomorrow for the wonderful neuro-oncology clinic tomorrow, which should be fun.  Evan just looked out the window, turned to me and said "God made this world beautiful.  Mom, he really did!"  This child's glass is perennially half-full.  What a lesson in life and attitude he teaches me daily!  I was speaking to my friend the other day about grace under adversity and how I strive for that.  One of these days it may come true!

So, you probably clued in with by now that we are heading back to Memphis... 

I can't believe that three months has passed since we were "sprung" from there after our 10 month adventure.  I know we were there the better part of a year but it seems so unreal that we lived it and survived it.  All I can say is I will be happy to never experience an ICU stay, high dose chemotherapy, radiation, central lines, or any of the other myriad of adventures we had there EVER AGAIN!  Of course, Alex and I have had a building sense of dread about this visit.  Evan will have the all important MRI scans of the head and spine to confirm the absence of a new tumor and the lumbar puncture to confirm the absence of cancer cells in his spinal fluid.  While praying and believing that he is cancer-free, some objective evidence will make us all feel better.

This is what Evan just said to me on the plane... "I don't care if I have to get some needles in my arm.  I'm tough!"  Yup - he is ARMY STRONG!  He is a bit confusing tonight, though, wearing a cool Air Force hat and an army backpack.  He is an inclusive kind of kid!

We are getting ready to land now so signing off from Memphis.

Love,

Rachel


Wednesday, October 21, 2009 8:00 AM, CDT

Dear All,

Thanks to everyone for their continued support and prayers.  Being back at St. Jude has been a bit overwhelming.  When you have a sick child, your heart undergoes repeated trauma.  I don't know if it ever heals completely or if the wounds just turn to friable scars.  Being back here truly is difficult.  When we were here for such a prolonged time, the children around me became the norm.  Emesis bins, wheelchairs, beautiful bald heads, missing limbs or eyes, etc.  Now that I am again submerged in this environment, the stark reality returns with a vengeance.  It is difficult for me to explain my feelings here.  Looking at the same views that I had spent countless hours seeing, walking the halls, seeing the people gives a strong sense of déjà-vu.  The scared, helpless feelings return as well.  Can you believe that I still fervently long for the days when we just supported St. Jude from afar...writing a check for all of its good works instead of being touched so intimately by the institution?  Mere mortals can only guess at their life plans!

Evan is his same cheerful self.  Yesterday when he had blood drawn, he opted not to have an IV placed overnight.  It might interfere with his play time.  He knew that he would have to get stuck again this morning when his IV was started for his MRIs.   We fly home tonight so we won't get the results of the studies until tomorrow.  What a fun 24 hours that will be!

We enjoyed our pizza party yesterday with the neuro-oncology clinic.  It was nice to see all the friendly faces around the clinic as well as around the hospital.  (We were sad Ms. Kathy in the E clinic was out sick yesterday!)  Miss Penny still had her trademark smile at the front desk and asked if Evan would sign her calendar.  He is "June" in the 2010 St. Jude calendar. What a pin-up he is!!  Evan also met with an endocrinologist yesterday, who was very succinct in outlining all of the pituitary challenges awaiting us.  Joy. He passed his physical therapy evaluation yesterday with flying colors.  We still have speech and hearing tests today.  We are praying so hard for a good hearing result today!

Not much more to say right now...we will be eager to get on the flight tonight to Columbia!

Love,

Rachel

 Thursday, October 22, 2009 7:12 AM, CDT

Dear Evan's Army,

The wonderful, fantastic news is that Evan's MRI scans were clear!!!!!  I haven't heard yet about the cytology (cells) from his lumbar puncture yet but am just going to assume they are normal.  Thank God!!!  We got home late last night and Evan is completely worn out.  We had to get up yesterday at 5:00 am EST to go to his MRI and we returned home around 10:30 pm.  What a very long day!  Evan passed out on the flight from Atlanta to Columbia.  He was a trooper, though!  We had to do the mad sprint through the Atlanta airport because our plane out of Memphis was late.  Crossing three concourses and multiple gates can be challenging!  He is still sleeping right now so it looks like he will play hooky from school or go in late.  Hey, if someone stuck a big needle in my back to get a sample of my spinal fluid, I would want to get a day off too!

His hearing results weren't that great.  The hearing (high frequency only) has declined a bit more over the past 3 months.  His labs show that his bone marrow is continuing to recover.  His viral resistance is still low but it looks like he is regaining some viral immunity.  Now, we still will hope and pray that both the regular flu and the swine flu stay away!  While Evan can fight them off, it would be difficult for him to do so.  (Not that every fight is a fair fight - Army Strong people know this - but of course we would rather tilt the scales to Evan's favor!)

Love,
Rachel


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