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
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
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.
Wednesday, October 21, 2009 8:00 AM, CDT
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
Not much more to say right now...we will be eager to get on the flight tonight to Columbia!
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