Thursday, February 5, 2009 6:20pm

Dear Friends, thank you for your constant and incredible support and faith.  Your prayers and messages of hope have greatly touched us over the last few days.  

Although we were really feeling like a miracle was headed our way, things didn't work out like we had hoped.

We will give you all the details tomorrow, but we didn't want to keep you waiting any longer.  As I stated earlier, Ezra had a rough night last night and unfortunately he was unable to recover.  He fought so very hard, with every ounce of strength he had.  He did Live Strong, for as long as he could.  He had some extremely severe bleeding and swelling in his brain, the bleeding was a complication from his Leukemia, and he died from this.  He died peacefully in the ICU surrounded by his Mother and Father, by Milo - the best twin brother in the world, and Luka - the sweetest big sister ever, and oh yeah, his faithful and loyal friend Beckley the dog.  Yes, you read that right, Beckley was right there with him in the ICU - thank you Julie for bringing him by.  He also spent the afternoon with his Grandma and Grandpa Hemsley and his amazing uncle Greg who flew up from Oregon for the second time in 6 days. 

Ezra felt our love.  He felt your faith and love.  The paper cranes were hanging in the room - thanks for bringing those by!  And all the cute cards and posters - the Dumbo one, the Alice in Wonderland one, the Marley one, they were all there.  His cute little woodland critters.  We mostly listened to the Beatles, Norah Jones, and of course the song that Milo chose first thing this morning - "I'll Fly Away."  It was all beautiful and peaceful and though are hearts were breaking, we all knew that this was God's plan for Ezra.  

We read him some favorite scriptures, a few that come to mind... Psalms 95:1-6  "O come, let us sing unto the Lord: let us make a joyful noise to the rock of our salvation.  Let us come before his presence with thanksgiving and make a joyful noise (Ezra was always good at this) unto him with psalms.  For the Lord is a great God and a great King above all gods.  In his hands are the deep places of the earth; the strength of the hills is he also.  The sea is his, and he made it: and his hands formed the dry land.  O come and let us worship and bow down: let us kneel before the Lord our maker."

And from the Book of Mormon, 1 Nephi 7:12 : "Yea, and how is it that ye have forgotten that the Lord is able to do all things according to his will, for the children of men, if it so be that they exercise faith in him?  Wherefore let us be faithful to him."  - This one I like because 1)it was the first thing I read when my scriptures opened the night this all began and 2)because it reminds me that this was all according to God's will - and his plan.  God has another plan for our family and for Ezra.  We may not understand that now, but i have Faith that this is true.

Please feel free to check back tomorrow, I will do my best to try to explain his complications from this quick and sudden battle with Leukemia tomorrow.

Much thanks for your strength and prayers and faith and LOVE.  Please know that you helped Ezra and our family so very much.  All our love and our wish for each of you to continue to LIVE STRONG.

I'll Fly Away

Ezra would like to share this song with everyone:

"I'll Fly Away", by Alison Krauss and Gillian Welch, from "O Brother, Where Art Thou?"

Thursday, February 5, 2009 10am

It's not the best time to update, but we know people will be checking in.  We are still in the ICU.

Ezra had a rocky night.  He has been fighting so hard, but with such serious complications it has been tough for him.  We need your prayers and faith more than ever.  We've got Milo and Luka here with us.  The docs have given us some pretty hard news this morning, we are waiting for some more test results.  We love you all.  

Ezra is still sleeping, surrounded by his tiny woodland friends and his mom, dad, sister, and twin brother.  Milo just selected a beautiful song for us to listen to - Milo has always been Ezra's soulmate in a way that is hard for any of us to fully comprehend.  The song is found on the Oh, Brother Where Art Thou?  CD It's called "I'll Fly Away."  We are feeling a flood of emotions, sad, happy, and calm.  We are holding on tight as we wait for any news of hope.  He looks so peaceful and beautiful.  Our hearts are over flowing with love for him.  Peace to everyone.

Wednesday, February 4, 2009 5:17pm

Hi everyone, just a brief update for those of you checking in tonight... Live from the Pediatric Intensive Care Unit - It is Ezra's nightly update...

Today was a pretty quiet day for Ezra.  He is still breathing with the help of his ventilator - a big tube thingy that helps pump air into his mouth.  This is what they call "riding the ventilator"  yeehaw!  It sounds like a rodeo event, but it means he is relaxing and letting the ventilator do the breathing, so he can focus on other stuff.

He is still asleep.  He had some very small reflex movements today.  He moved his left arm a couple inches.  He tensed both legs at one point.  And he even moved his right arm a teensy tiny bit which no one was expecting due to the bleeding in his brain.  So way to go Ezra!  

He is still tolerating his two teaspoons of food an hour. Yum, yum.

His chemotherapy continues and his white blood cell count keeps dropping.  His blood still is not clotting like they would like, but they are trying to find just the right combo of blood and platelets and just to round it off some tastey FFP - that's fresh frozen plasma, not Fresh Fruity Punch. 

(Photo of Ezra's 4th grade Oregon Trail "Family" - Ezra pictured in front, hamming it up - what a surprise - they hiked from Madison Park to Magnusson Park)

Wednesday, February 4, 2009 10:38am

Ezra continues to LIVE!  He is still hanging in there.  He is still sleeping - he's got one hand resting comfortably on Racky raccoon and the other on his little meerkat Fresca, with his squirrel Chocolate Chip on his shoulder and little chipmunk next to his cheek.   "Twist and Shout" is playing and we hope this will inspire Ezra to do the same!  He is a big Beatles fan as many of you know.  

So I have to say that YOU guys are the best friends we could ever ask for or dream of having. As we hear the Beatles sing, "Can't Buy Me Love,"  I mean, wow!  We are blown away by your love, prayers, concern, and wishes for our son Ezra and our whole family.  Please know how much you are helping us through this.  We check your comments often and our kids are following constantly and are so excited to see who has written something and we are all feeling the LOVE.  Mayan made me laugh to think of her sitting in a math class at Lakeside reading our blog and Ivy made me cry - in a good way Ivy - when I read about the kids in the lunchroom holding hands and praying together.  And Joseph, I'm sure Ezra is glad that you're keeping up the tradition of hiding Jordan's water bottle.  And Delaney, feel free to comment as many times as you want!  I mean, every single entry has touched our hearts and given us courage.  We all feel like the faith of Ezra's family and friends is helping him pull through and every day he stays alive is giving him a greater chance for life!

Ezra updates: docs are hoping he will slowly be waking up.  To do that they lower his sedation.  Not too much movement or reflexes, but we are hoping that that will happen.  We haven't talked about it too much, but Ezra had some significant bleeding in his head and so no one is exactly sure what waking up means at this point.  And we all know how resilient kids are and how amazing the human brain is at rewiring itself, etc.  So we are all focused on positive thoughts here.  Please stay focused on healing and fighting and not on how extreme any of this is.  He did move his left arm up to his tummy when the nurses did something that aggravated him and we all cheered.  "Go Ezra!"

We are rocking out to "All my Loving,"  how appropriate.  We are all sending all of our love to Ezra!

More updates:  he is still doing good with his teaspoon of food, so now i think it's two teaspoons of food an hour - MMM, yummy chocolate malt :)  Maybe it's not Dick's but we hope he enjoys.

Waiting to hear more from pathology later.  At Rounds this morning they discussed his fever and decided it is a side effect of one of the cancer drugs and not him being sick (er).

Ezra we give you all our love, kisses, and prayers.  So many people around the world are praying for you.  We BELIEVE!  Miracles are real!   We know God hears our prayers.  Faith is belief in things that are hoped for and not seen.  We have faith.  Keep Fighting!  LIVE STRONG!  

Tuesday, February 3, 2009 6pm

Ryan and I are sitting at Ezra's bedside in the ICU and we were just reading Ezra your comments and feeling so much love and support from all of you. THANK YOU for helping us at this most difficult time!

We are listening to Bob Dylan and Cat Stevens, these ICU rooms are amazing with internet access and cd players, wow! Ezra is being very well taken care of by many wonderful doctors and nurses, they are always doing something for him, they all want him to beat this thing.

Ezra is still sleeping and still fighting. Go EZRA!

The CT scan results came back. No improvement, BUT things aren't worse either, so we are happy with that. We look for little ways to be happy and things not getting worse, makes us VERY happy!

Ezra tolerated his teaspoon of food, so he has continued to get more teaspoons throughout the day - more of the same - liquid something or other that goes in a tube down his nose straight to his tummy. So again, this is good, he is tolerating teaspoons of food. Hooray. He also gets two other liquidy things that go through different tubes and get absorbed into his blood stream. We imagine these are different things like his favorites from Shanghai Garden or Cupcake Royale. Yum, Yum!

So we did get some other test results back from the cancer docs. This info can be sort of complicated, but lets see if we can simplify. Ezra's sort of cancer is pretty rare, it showed up with some unusual complications that don't usually go with this sort of cancer. Ok, so now the tests today helped narrow down this cancer even further. They break the results down into 3 groups: favorable, intermediate, less favorable. If you are lucky to follow into the favorable category you are going to have the best recovery chances, if not you can still recover, but you have to fight even harder! Well, as you know Ezra, is strong and he likes a good tough fight to feel challenged. The doctors found out that he is not in the favorable category, BUT they aren't sure yet if he is intermediate or less favorable. It will take more time to find out. There are a team of cancer docs here all working on Ezra's special case. They told us, no matter what results they are finding, NEVER give up HOPE. They see miracles here EVERYDAY and they are hoping Ezra gets one of those miracles. They said they have hope and we must all keep the faith.

So dear friends, please, please, please, keep up the prayers and the good thoughts and keep all of your positive energy coming our way. We are feeling good here, we have lots of HOPE and FAITH and we know that if any one can fight this Ezra can. GO EZRA! Keep up your fight! We are all behind you, cheering for you! Stay alive!

Tuesday, February 3, 2009 11:00am

First off, BIG thanks to all of Ezra's dear friends and family that are praying for him and sending him so much love and positive energy. You guys are awesome, keep it up. It is really helping all of us at this critical time!

So, Ezra made it through another night, HOORAY! He is fighting and trying to stay strong! He is still in critical condition and still sleeping. Still in the ICU. But for Ezra right now, not getting worse is AWESOME! And he didn't get worse:)

Updates: Ezra is going to receive his first teaspoon of food, which he will receive by a tube running from his nose down to his tummy. If he can tolerate this first teaspoon, they will give him more, the food is liquid and no, it's not ground up snickers. Also, Ezra just came back from getting a CT scan. The doctors have wanted to do another one of these for the last 2 days but feared he could not be moved from his bed to the scanner. This morning they felt like he could tolerate the move, so they did it. For those of you kids following along - the CT takes a scan of his brain and gives doctors lots of info about how the brain is doing. Some of the complications Ezra is dealing with involve what is happening in his brain at the moment so getting a picture of this is important for the doctors.

Oh, and Ezra started his chemotherapy on Saturday, so this is his fourth day. Although they started chemo, the focus for Ezra is on his other complications - mostly in his head.

Ezra is lying on his hospital bed, hooked up to dozens of tubes, machines, etc., sound asleep, surrounded by many of his little stuffed animal friends. Ezra's woodland friends, as we like to call them. The nurses are always great to arrange those in cute ways around him on the bed. We put some Ezra photos up and we have some of Ezra's favorite music playing - the Beetles, some Norah Jones, etc. We are spending a lot of time sitting next to Ezra, holding his hands and talking to him and reading him your comments from the blog. We are keeping the faith and keeping our HOPE alive. In the words of so many of his friends, "live strong Ezra!" And from his mom, I say - "Ezra, you 've always had the energy of 10 and the stubborness of 100. Fight! Don't give Up! Stay alive!"

We love you guys, keep your prayers and comments coming.