A Snowy Burial Day: February 26, 2009

Although snow is usually rare here in beautiful Seattle, we woke up to yet another snowy day this morning.  I love the way the world looks when it is covered in a white blanket and I always think there is something magical about this white stuff that falls from heaven (I grew up in southern California if that explains anything).  Anyways, I have lost count of how many snow days we have had since December, but we've had many more than any other year since Ryan and I moved here 16 years ago. 

Our house was quiet and still until Milo jumped out of bed screaming, "It's snowing!"  With a 2 hour school delay we had plenty of time to head out for a walk.  We stopped by our neighbor Heath's house and convinced her and the kids to join us on a snowy adventure.  It all felt very much like our snow days in December, except that we were missing Ezra.  We made snowy happy faces on some of the cars in his honor - he did this to dozens of cars during our winter snow days - and we made snow prints and snow angels all the way to Jacob's house where the kids played and made more snow people.  It was a peaceful morning.

At noon, Ryan, Luka, Milo and I headed to Lake View Cemetery.  We were the only ones there for the burial, just as we planned.  We each took a handle and carried Ezra's casket from the suburban - not a hearse - to the burial plot.  Ryan said a prayer to dedicate and protect the grave and I read some favorite scriptures about the resurrection of Jesus.  We talked about how Ezra's spirit is now in heaven and only his body is in that casket and that when the time comes for his resurrection his spirit will rejoin his body which will be safe and protected until that time comes.  When the casket was lowered into the grave, we placed some of the strings of origami cranes over it - made by his loving classmates and dropped rose petals and little love notes over the top as we said our goodbyes.

The cemetery looked lovely in the snow.  We felt good about the location.  We liked Lake View Cemetery because this is where we always took a walk with the kids on Memorial Day, so it feels familiar, even though we don't know anyone personally who is buried here.  Plus it is only 5 minutes away, so that is a bonus (especially since we made about 30+ trips there last week (it took us all awhile to find just the right grave site that we all felt good about). Lake View is adjacent to Volunteer Park and was founded in 1872, it is a non-profit cemetery. Also buried here are Chief Sealth (Seattle)'s daughter Princess Angeline, early pioneers of Seattle - the Mercers, Dennys, Yeslers, etc., J.J. McGilvra (namesake of Ezra's hundred year old Elementary School), and Bruce Lee and his son Brandon. 

Ezra's grave is not marked yet - still more decisions about designing the marker and choosing the materials, etc.  It is on the west side of the cemetary with a view of the Puget Sound in the distance as well as the Space Needle.  

Ezra's casket was made by his dad.  He worked on it in our dining room and on the back deck over the last week.  It is made entirely of pine and fastened with wooden pegs. Milo wrote Ezra's name in cursive on the top, Luka painted over this and then Ryan waxed over the top.  

Ezra's Obituary

Here is a link to Ezra's obituary in the Seattle Times.

Ezra's Obituary

O Happy Day - by Ezra's dad

Yesterday at about this time we were arriving at the chapel for Ezra's service. It was to be a sad day, the day that Ezra's friends would officially say goodbye and one of many for me to do the same. I was expecting to be sad... the funeral for our son. I'm typically a happy guy. I've done neat things in my life...been to neat places, made neat things, and I have a neat family. What I wasn't expecting was that the funeral of my son would be the proudest moment of my life, and while certainly hard, perhaps the happiest as well. Yesterday, I sat in the third pew from the front and listened and watched in awe as Randy and Greg spoke of our boy Ezra and helped me realize the ten years of miracles that was and is Ezra. We heard songs that we played at home, at the ranch, in school, and in church. These songs were sung by his friends, his cousins, his classmates, and his sister and brother. Music was played on piano, guitar, banjo, and cello, by true friends, who happened to be Ezra's music teachers, theater associates, friends, and family. After a few songs, I realized that although I had tears streaming down my cheeks, my face had the biggest smile on it that I have ever had (my cheeks are honestly sore today from smiling yesterday).

While it was the funeral for our boy Ezra, I had the pleasure to be in the midst of about 500 people singing together, listening together, and laughing together as we rejoiced in the life of a special boy who brought so much to those around him. Sitting next to my amazing wife Kandice, I again realized that it has been a true honor for us to be his parents for the nearly eleven years of his earthly life.

Yesterday was the funeral of my son and I was the happiest one there. I am emboldened by the knowledge that I raised a special boy who spent his days bringing joy and life to those around him during his time on Earth, and I know that Ezra will continue to be a beacon of faith and hope for many during the years to come.

Friday, February 13, 2009

Yesterday was Ezra's funeral - or more appropriately - our celebration of Ezra's life and the goodness that he inspired in others. It was just what Ryan and I had hoped it would be - a celebration, mostly thru song, but also thru some inspirational remarks and scriptures. What an awe inspiring experience for us - Ezra's family - to be surrounded by so many of our friends who loved us and were touched by the life of our sweet boy Ezra. Many thanks to all who participated on the program, to all who helped us pull the program together, to all who were able to attend, and to all those who had wanted to be there but were unable - we still felt your love from afar! It was a beautiful, perfect celebration and we felt truly blessed to be there celebrating with all of you.

As always, our sincere thanks to all of our friends and family who are supporting us and strengthening us during this period of loss and sadness. You are helping us to get through this difficult journey and we love you.

Ezra's Funeral Services - Thursday February 12, 2009

Dear friends, please join us to celebrate the life of Ezra Sherman.  

Services will be held at 10:30am at the Church of Jesus Christ of Latter-Day Saints.  5701 8th Avenue NE 98105   The church is located in the U-District just off the 5 FWY at 50th Street Exit.

We hope that all of Ezra's friends will join us - from McGilvra, our neighborhood, Broadway Bound, Seattle Guide Puppies, church, etc.  This location is large enough to accommodate all of us.  There is a large parking lot behind the church, but we will still encourage you to carpool if possible.  The service will be pretty light and kid friendly.  It will include mostly musical numbers, including a song or two from Ezra and Milo's 5th grade classmates.  I would guess the service will last pretty close to an hour.

Following the service there will be a social.  If you would like to bring a small plate of something yummy to share, you are welcome to do so.  I have a feeling there will be plenty of food, so don't stress about this.  Socials were always a favorite of Ezra's and I hope there will be many of his friends there following his tradition of filling a plate with a cookie or two, a brownie, a cupcake, and maybe one lone carrot stick.  You get the picture.  

As far as dress goes, men and boys - if you want to wear a suit feel free, but something more casual is fine too.  I would tell my own son not to wear anything sloppy, I am guessing Milo will wear a suit.  Ladies & girls - dresses/skirts/nice pants.  Please don't wear black (unless your suit or coat is black of course!),  keep in mind Ezra was a kid that liked bright colors - and as most of you know, his favorite color was pink. If he were attending, he would wear his suit, with his pink shirt and one of his pink ties:)

Ezra Sherman - We Love You!

I thought it would be nice to have a place for people to tell something they knew or loved about our boy Ezra.  Just a favorite memory.  I'll go first and mine will be the longest, but please indulge me.

Ezra couldn't wait to be born and start his life on earth.  He and his identical twin brother Milo, were born at 32 weeks.  Our boys weighed the exact same amount to the gram, which we've been told is very unusual - what a surprise.  

Although born early, Ezra and Milo began crawling on the same day - a week before they turned 5 months old.  They were cruising by 6 months and could walk by 8 months.  Those boys were never ones to sit or stand still and they always reached every mile stone together - on the same day!

Enough baby stories.  Ezra has always LOVED music.  He played the violin for a year, he played the cello for a year, he started the clarinet this year, and he played the piano for the last 4 years.  He could listen to any song and then sit down at the piano and pick out the tune and play it by ear.  He loved to go through all of our old cds and pick out things to play.  He loved the Beatles, Norah Jones, Bob Dylan, and a local a cappella group called "The Coats," Gershwin, Jazz, and so much more - he loved to sing and dance along - always in a silly way and when he was especially moved he would then hit the pause button and run over to the piano and pick out the same tune, playing it over and over until he got it just right and then add in some little flourishes.  Ezra was always one to add a flourish to everything!  He often signed his name with an exclamation point - EZRA!

Ezra loved performing.  He LOVED Broadway Bound.  He first production was Annie in 3rd grade, he played Mr. Bundles, a servant, and several other small parts.  He had 7 different costumes to keep track of and loved every minute of it.  Next came Seussical.  He was the Mayor of Whoville and he loved his bright green and pink costume Rita made for him and he got to ride his unicycle in the Circus McGirkus.  In 4th grade he was in Singing In the Rain.  He played Flick and an assistant director.  He got to learn some tap dancing and had a blast.  Next up was Grease.  he played a student and a rock n roller and loved doin' the Hand Jive.  And he loved this cast that was filled with so many of his friends from McGilvra.  Most recently Ezra performed in the Wizard of Oz last month.  He was the Barrister of Munchkin Land and got to sing a duet and dance with Milo, who was the Mayor of Munchkin Land.  He wanted to be in as many of these productions in a row as he could - he loved participating in these shows.  He loved the comraderie, the excitement, the challenge, the friendships, the exhillartion of being on stage and mostly just the FUN.  Thanks Jimmy and all the other wonderful people who make this program possible.

Ezra loved going to school.  He loved his teachers.  He loved his friends.  He loved learning.  He felt apart of the McGilvra community and genuinely loved it there.  He never wanted to miss school, ever.  Although the recent snow days were fun, Ezra wished he could still have gone to school instead.  He liked to be there with his friends, and after reading all of your kind and loving posts it is really no wonder.  Thank you McGilvra family - and I hope all of you kids know I would love a hug from you anytime - I am feeling pretty close to all of you sweet kids!  And please keep hiding Jordan's water bottle for Ezra (sorry Jordan - and Ms. Kierstead and Ms. Calvert!)

Ezra was a helper.  He loved to help people.  Anyone in need, Ezra was there.  He wanted to rake the neighbor's leaves before they got home from work.  He was always the first to rub my back when I sat down - and boy was he a most excellent back rubber!  He raised guide puppies for the blind.  He would stay after church meetings to take down chairs and put them away.  He would sweep our front steps without being asked.  He seemed to always know when there was something he could do for someone and he would try to do it.  Is it any wonder that the name Ezra is Hebrew means "help," "helper," and "helper of God."

Ezra was generous.  I'll never forget the day I told him about the Tsunami in Asia.  He ran upstairs and got his piggy bank, ran back to me, opened it and dumped out all of his money.  He wanted every cent to be given to the relief aid, he didn't hold anything back for himself.  He was that kind of a boy.  Knowing that all of my kids had wanted a pet for years, I asked them 2 years ago if they wanted to get a pet dog or raise a guide dog for the blind, all jumped up cheering and chanting "Guide Dog, Guide Dog!" Ezra never missed a training class, went to several guide dog graduations, and took all of his puppy raising duties seriously.  Although he knew he would be sad to give his puppy away one day he knew it would be ok, because he wanted to give that gift of love to someone.  He loved that he was helping make someone else's life better and never thought about it as a sacrifice or a chore.  Ezra would give anything he had to anyone who needed it or wanted it for that matter.  He had a big heart and loved to make someone else smile by giving them something.  He shared his smile and his life with many.

Ezra loved little children.  He was very sweet and nurturing with them.  He thought they were fun and funny!  At church he liked to sit behind 5 year old Lucy and 3 year old Charlotte.  He liked to make faces at them and make them smile.  He would say things like, "Mom, Charlotte is really growing up isn't she?"  Or he would remember something silly Lucy had said and then repeat it over and over saying, "wasn't that cute mom?"  He loved all the little neighborhood kids.  He loved greeting them and playing with them.  And he thought they were cool and considered them his friends.

Ezra was very artistic.  He loved drawing and kept a sketch book near his pillow.  He would often sketch before he went to sleep.  He wanted to be an Imagineer for Disney when he grew up.

Ezra was fun.  He was ALWAYS thinking of fun, creative things to do.  He LOVED life and was constantly in motion.  He was pretty much always happy.  Always with a sly grin and a wink.  Always ready to do a silly dance to make me laugh or sing in a silly opera voice or whatever.  And best of all he had Milo, his best friend who thought he was funny and always liked his ideas.  The two of them together were like poetry in motion or a twister spinning out of control, depending on your current frame of mind.  

Ezra was a good brother to his sister Luka and he loved her.  He thought she was awesome.  He was proud of her and interested in what she was doing and liked to be with her.  They sat next to each other in the car.  Not that anyone ever assigned seats, but that just sort of happened. 

Ezra loved unicycling, he could unicycle forward and backward and rock back and forth and hop up and down and pedal using only one foot.  He was truly ready for the circus.  He also loved waveboarding and always looked so graceful weaving back and forth down the sidewalk. He made it look so easy, I still haven't mastered it, but I'm going to Ezra!

Ezra had faith and believed in God and his Savior Jesus Christ.   I have his scriptures next to my bed and like me, he had already started tucking little notes and cards and pieces of paper inside of them.  One of the little notes I found inside had a scripture from Psalms 82:6 "All of you are children of the most high."  Another note card he got from his sunday school class says, "I have a Father in Heaven who loves me."  He believed in prayer and prayed with our family and at his bedside.  He always talked to God like he knew God was listening and just like a child speaking to their Father.  He recently gave a talk in front of our entire church congregation about being a peacemaker.  And one scripture that he loved was one that he had memorized to recite in front of the congregation, Isaiah 9:6 "For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, the mighty God, the everlasting Father, the Prince of Peace."

Ezra loved playing with his cousins, none of whom live in Seattle.  He loved reunions in Seaside, Oregon, where he got to play with his cousins from sun up to sun down.  He would spend his days digging huge holes in the sand with his cousins and jumping in the icy cold waves.  He adored his grandma and grandpa Hemsley and loved visiting them.  He missed his grandma and grandpa Sherman, who he is now visiting with in heaven.

His favorite place on earth was the Sherman Family Ranch - thank you to Grandpa Sherman for purchasing that way back in 1964, it is an amazing place where we can all enjoy the beauty of this world in total peace.  Ezra's summers were mostly spent at the ranch where he would spend his days outside exploring, building forts, swimming in the lake, building damns, going on walks, and picking blackberries.  At night he would put on plays with Milo and Luka for his mom and dad to enjoy.  A favorite would be acting out episodes from I Love Lucy, where he would often play the roles of both Fred and Ethel.

At home Ezra's favorite traditions were having dutch babies for breakfast on Sunday mornings, Friday family movie night - where we watched everything from old classics like the Marx brothers films and Bringing Up Baby, etc. to musicals to more recent favorites, like Elf - which he had memorized, "You like sugar don't you?"  He loved going on walks in the Arboretum, family bike rides, and walking in the neighborhood - well not walking so much, he was actually never very happy walking, he always wanted to ride a skateboard, waveboard, roller blade, or ride his unicycle.  Walking was too slow for him.  He liked riding his bike to school with his dad and wanted to ride the STP with his dad.  And Ezra loved going to Disneyland with his family and helping to plan the trip and trading disney pins.

Ezra was bold and liked to wear bright pink.  He had a favorite bright pink shirt he loved to wear.  He had pink socks and pink converse - not worn at the same time.  Usually the polka dot socks were worn with the pink converse.  He had panache.

So this was our boy.  Please feel free to add a favorite story or memory, just something short please, don't write a long post like I just did, but a brief comment would be beautiful.

February 6, 2009 5pm

Dear Friends, again thank you for the outpouring of love, support, and friendship. It continues to touch us, to strengthen us, and to bear us up during this time of loss.

Many of you reading this blog don't know it, but many of these posts are being left by Ezra's 10 and 11 year old classmates. You kids are the greatest. So kind and generous. I'm in tears as I read your sweet comforting remarks and offers to be there for Milo. Thank you! And Luka's friends too! And you high school kids. Everyone, BIG thanks you are helping us during this most difficult time.

We stopped by Ezra's school today and were overwhelmed by all of the love - thank you dear friends, you are amazing. It took my breath away when I saw the flag flying at half mast. And then the candles and rose petals on the front steps and the shrine in the library with Ezra's desk and unicycle and belongings. I hope that someone else will write more about these significant and touching memorials, they were so thoughtful and beautiful.

Also thanks to all who have left candles burning on our porch, as well a 1000 paper cranes, flowers, and gifts. We feel overwhelmed and touched by these thoughtful gestures of love.

So, I just wanted to give a few more details about Ezra's sudden illness which lead to his tragic death yesterday evening.

Don't feel like you have to read all these details, it is just for those of you that are interested in things like that.

As you know Ezra was at school last Friday and all seemed to be well. He played after school with his brother and some friends on the soccer field. Later he wasn't feeling well, Ryan and I decided to take him to urgent care at Group Health as it was after normal doctor hours. The doctor who saw Ezra immediately did a blood draw and had an IV in him. While they waited for tests, we had a neighbor and member of our church meet us there. He (Robert) and Ryan laid there hands on Ezra's head and gave him a Priesthood Blessing, a special blessing given to heal the sick. I took a sigh of relief after this blessing was given to Ezra.

Minutes later the test results came back and we heard the words Leukemia for the first time. My head was spinning as I sat by Ezra's side and we raced in the ambulance to Seattle Children's Hospital. And at this point I have to add a side note - Guys, when you hear the siren pull over FAST, please. There are lives on the line! I could hear our ambulance driver on the loudspeaker ordering people to pull over to the right. It was pretty scary. All this was less than an hour from when we left home with our boy Ezra and left Luka and Milo home watching a movie in our bed.

At Children's within minutes of walking into the ER we heard that the doctors feared Ezra had some bleeding in his brain. Bleeding in the brain? What? I thought they just told me Leukemia a few minutes ago. What is going on?

So because doctors are really smart about stuff like this, they knew that something major was wrong with the way Ezra looked and acted - he was unconscious. They did a CT scan and this confirmed their fear. There were 2 large brain bleeds. We were rushed to the ICU.

Ryan and I, were scared. The doctors were scared. They feared Ezra might die from them soon, possibly that night.

So how did he get bleeding in his brain anyways? What about the cancer? Well, in Ezra's case the cancer, which they didn't know which type it was yet - had made it so that his blood would not clot. So kids, this means that when you get a cut you bleed, but then you stop bleeding and you put a little bandaid on and you're pretty much good to go. Because of the cancer Ezra's blood was not able to clot, so he couldn't stop bleeding. The doctors think that sometime late that afternoon or early evening Ezra had a tiny blood vessel deep inside his brain burst. If Ezra didn't have leukemia, no problem. But because of Leukemia he couldn't stop bleeding.

But, we still had hope that the bleeding had stopped or would soon stop.

The doctors began immediately giving blood transfusions, platelets, and the FFP - the fresh fruity punch - sometimes called Fresh Frozen Plasma. All of this could perhaps help Ezra stop the bleeding in his brain. Also, the oncologists began treating Ezra's leukemia immediately. Within minutes of arriving in the ICU they began chemotherapy.

The next morning they did an MRI. This takes a really detailed picture of the brain. News was not good again. They told us that the bleeding was significant. The doctors in the ICU believed Ezra would probably die that day.

Ryan and I still had faith that Ezra could be OK, IF it was God's will. We hoped that it was God's will that Ezra continue to live. The doctor's told us that although Ezra's condition was dire, but that we should definitely believe that a miracle could happen. We believed.

Meanwhile, the cancer doctors were worried that Ezra's cancer might kill him. They were rushing tests to determine which type it was so they could know how to treat him. The initial test results arrived late on Saturday. It was either AML or APL. These are more rare and more difficult to treat than ALL. The doctors again were very concerned. Mostly because of the way Ezra's cancer presented itself. So everybody knows you've got your white blood cells and your red blood cells. So normally you and I might have between 7 and 11 thousand white blood cells. Over 20,000 the doctors are going to start thinking about Leukemia. Ezra's initial blood test showed over 310,000 white blood cells. This extremely high number was exceedingly unusual (like we all know Ezra was - always unusual - but usually Ezra was unusual in a good way!!:) Most doctors have never seen counts anything like that. They were very concerned. So the cancer docs were focused on the cancer and how the cancer was so intense it was killing Ezra, so they were treating his cancer. Most kids with Leukemia have ALL which is much less intense and doesn't threaten the body so aggressively.

Due to the extremely high white blood count, things weren't looking good for Ezra. They began intense chemo. We got a whole spreadsheet explaining all of his different chemo medications, I chose to not spend too much time looking at those.

By Sunday they had determined it was AML. Only about 20% of childhood Leukemia patients have AML. They have about a 40% survival chance, depending on which category they fall into: Favorable, Intermediate, or Less Favorable. We didn't know yet which category Ezra was in. His chemo treatment changed some. Because this type of cancer is so aggressive he was getting large doses of these powerful toxic treatments. These treatments could kill him, but if they didn't give him this type of treatment the cancer would kill him. We voted for the chemo. With this type of Leukemia, the cancer is very aggressive so the treatment is too. It is not long and drawn out, it is only a few months. If he would have lived, he would have needed bone marrow or stem cell transplant. We didn't spend too much time discussing cancer treatments, as when you are in the ICU - that's intensive care unit - it is all about keeping critical patients alive. I hoped we would make it to the Cancer Floor and get to fight this disease. We would never get to leave the ICU.

Each day, the ICU docs told us how critical Ezra's condition was and that he probably wouldn't live through the day. But each day they were surprised to find Ezra still alive. No doubt from all the prayers on his behalf.

And later in the blog I mentioned that they did find out that Ezra was not in the "favorable" recovery group. They are still waiting for results to hear if was in the "intermediate" or "less favorable," category. Not that it matters now, but they thought it likely he was in the latter category, due to his extremely high white blood cell count.

They began taking Ezra off his medication that was keeping him asleep (although he never did wake up and the last time we spoke to him was in our home last Friday evening), and he did show some signs of reflexes, which was good and gave us hope. But the night before he died his blood pressure went up, which was a signal to them that things were not good.

They took him in for another CT and found the swelling in his brain had increased - from his "significant bleeds." There was no longer anything they could do to help him. It was catastrophic. Even you 5th graders know that just sounds bad. And it was.

And that is how and why my little boy died. Ezra Sherman died from AML Leukemia. He was almost 11 years old. He died at 5:40 pm. Ryan, Milo, Luka, and I spent the entire day with him. Beckley sat on the chair next to his bed, licking his face, and later lying next to his bed - for 4 hours. We were all there around him, sitting on his bed, whispering sweet nothings in his ears, holding his hands, rubbing his chest and tummy, and toes and thanking him for his great life and his valiant fight, and encouraging him to return to his Father in Heaven who created his spirit, and loved him just as much or even more than we did and was anxiously waiting for his return. He quietly and peacefully took his last breaths. He did not struggle. I think he was relieved. He fought the good fight. He lived strong.

So what about my miracle? Why isn't Ezra still alive? Well, I believe that my miracle was having 6 days longer with Ezra. The doctors really believed he would die that first night. His condition was so severe. We were all scared to death. But he did not die that night. He lived. He lived strong. And during those 6 days my family and I experienced the greatest outpouring of love from family and friends and people we've never even met than we have ever experienced in our lives.

We had time to start this blog, which has been one of the greatest blessings we could ever imagine or dream of. And through this blog we were able to hear of so many prayers being offered on our behalf - from people of every religion and faith. It was so beautiful! I know that Ezra would be happy to have so many people praying and thinking about God. And reaching out in love to others. Ezra was the kindest, sweetest boy and he was a believer. He knew God knew him and loved him.

I haven't talked to much about my religion or faith. We belong to the Church of Jesus Christ of Latter-Day Saints. Many people don't know much about our religion, but we are Christian. We believe Jesus Christ is our Savior. We believe God created us and that he is a kind and loving God. We believe that we return to him when we leave this earth and we believe that the family unit is eternal. To us that means that we will be with our precious Ezra when this life is over. Our family will be together forever.

So although it is difficult to say good-bye. I have faith I will see my boy again and he will always be my boy. I don't understand how everything works or what exactly will happen after this life, but I feel certain I will be with him again. This gives me peace.

Thank you everyone for praying for my son. I believe that ALL the prayers were heard and answered. Maybe not in the way we hoped, but maybe for the best. As you hear this whole long story, you see that his chances for returning to his former healthy, happy self were not great. Ezra was such a great person. Maybe I will have to add one more post to tell some of the special things about him. Sorry this has been such a long post.

Thank you dear friends for accompanying us on this difficult journey. You made the journey such much easier to bear. Words will never be enough to share the feelings of my heart. As I returned home last night from the hospital, after the death of my son - something I never thought I would say - I was so sad and tired and I just sat by the computer and read your posts, surrounded by my family and feeling the Love. An amazing friend showed up unexpectedly with dinner in hand and then slowly candles and other little treasures showed up on our porch. Then we all went up to bed and had a great big slumber party with Milo, and Luka and Beckley joining Ryan and I in our not very big bed. Who can sleep on a night like that? HUGE thank you. Kandice and family xoxoxo

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.

Monday, February 2, 2009

Hi everyone, thanks for checking in on Ezra!

Ezra went to school on Friday, January 29, 2009. It was just a normal day. Well, except that it was really foggy that morning and I got a flat tire on the way to take Luka to the ski bus. She missed her ski bus and she spent 4 hours that day getting the tire fixed with me. I was sort of tired and frustrated, so like I said, just a pretty normal day. Ezra and Milo stayed after school to play, I drove them home. Ezra was a little more quiet than usual. I thought he may be coming down with something. Later that evening Ezra didn't feel very well, I thought it might be a virus, but Ezra just didn't seem right. Ryan and I decided to take him to urgent care. Within 30 minutes we had a preliminary diagnosis of leukemia. We were rushed by ambulance to Seattle Children's Hospital.

Ezra is at the best place for treatment. Seattle Children's Hospital is an awesome place and it is connected to the Fred Hutch Cancer Center so this is a great place to be treated for cancer.

As it turns out, Ezra has a very rare form of cancer. Fewer than 500 kids nationwide have this type. In addition, it has presented itself with some very serious complications. Because of these complications Ezra is in critical condition in the ICU.

Ezra is resting peacefully. The doctors are giving him medicine to let his body sleep. He has been sleeping since we took him to the doctor on friday evening, so we have not talked to him. At the moment he cannot have any visitors, other than family, as his condition is so serious.

We have no immediate needs. Milo and Luka are at home with Kandice's mom and dad, who flew in from Utah on saturday afternoon. Thanks mom and dad!

Ezra has wanted his own blog for some time now. I'm sure he will be pleased when he finds out.

Thanks again for being such great friends, we love and appreciate all of you!

Kandice, Ryan, Luka, Milo, and EZRA!!