About Me

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Bakersfield, CA, United States
Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.

Monday, November 03, 2014

death with dignity

There is a lot of talk in the news and social media about right to die and death with dignity right now.  I wrote this for Hans in memory and honor of his life and his dignified death.  Every one has a right to their own opinion,  and the right to make their own choices with their family - I just happen to have some strong feelings on this top and I thought I'd share...

As a mother who witnessed her nine-year-old son succumb to his neuroblastoma cancer after a long battle, I have witnessed a death with dignity.  I think dignity is exemplified when one gives this life everything he’s got and surrenders control of the moment of passing to the ultimate mystery of fate, God, or the universe…

Our son, Hans, fought a battle against his cancer that spanned almost six years, the majority of his life.  His cancer progressed in the last six to eight weeks of life and spiraled quickly.  In those days he faced challenges I don’t often talk about, for it is difficult to find the words, or strike the right tone, in describing what happens to a small human body that is under such a state of attack.  Those were intensely personal and private physical struggles. I don’t frequently share descriptions of the ways in which his body failed him, and of the pain, and of the labor of the tasks of caring for him in those days.  And yet – as I look up the dictionary definition of dignity –“ the state of being worth of esteem or respect”,  and  “conduct indicative of appreciation for the gravity of an occasion or situation”, I know that my son’s last six weeks were certainly examples of such.

Throughout his long diagnosis, and throughout his last weeks, he grasped to live, fought for life, and unceasingly did the hard work of trying to overcome the burden of his disease.  He got back into the ring and fought, by any and all means, for a shot at simply being able to continue to live his little boy’s life.  Serious, businesslike, brave and strong – he went about the business of trying to beat his cancer.  In those last weeks, perhaps he knew that a point of no return had been reached. Perhaps he indicated as much with small statements.  Perhaps he had begun to accept his transition. 

In those weeks, we were all given the opportunity to witness the completeness and the fullness of our boy’s life.  We were all moved by the totality of commitment he had to being present and fighting to stay.  We were humbled by the mystery and beauty of his fight to live. We were forever altered by the power of his love for his life, and for us.   I suspect, that during those weeks, he was readied to make his transition from life to death.  And, as we lost him, there was a sense of amazing grace, a peace that defies understanding, and a knowing that we would be together again, on the other side.  I am left believing that our ultimate personal mystery, death, is best left unorchestrated. 

Monday, September 22, 2014

Two years

Tonight marks two years without our special boy. Of course, even though he is not here with us on earth, he is constantly on our hearts and minds.

We have so many sad and mournful feelings as we mark this point. Those feelings are tempered by our beautiful memories.  As we looked through a slideshow of photos this morning, I was reminded again of all the ways Hans was connected and supported and lifted up during his journey.  He had a beautiful network in his friends and family and we are eternally grateful to you for that.   I was moved to remember that he readily returned love unconditionally and was a devoted friend and family member. His faith in love and friendship never wavered.

Even though we are two years from losing him,  I feel that we are not getting farther from our Hans, but that we are always moving towards him.

I think I failed to post that we all got memorial tattoos this New Years eve.  It was a first for all of us - me, Kevin, Elle, Grandma Kathy and Grandma Stephanie!

I'm finally posting some pictures tonight.  Elle designed our tattoos, and our friends Melody and Ben provided the ink.  Kevin and Elle and my tattoos are the same - a bird with two feathers, falling to represent what has been left behind. The grandmas also had feather incorporated into their design.  They art was done up at Third Eye Tattoo in Kevin's hometown of Ellensburg, Washington.

My Aunt Pati sent us a card to mark the two years. It was a silk screen of a feather with the following text:  

"A feather has many different symbolisms.  The Native Americas use feathers to ward off evil.  A found feather is a sign of encouragement or a reminder to be lighthearted.  It can also be a source of communication, or a message from someone now gone from our lives. The message conveys that all is well...don't be sad.   Feathers are as old as the beginning of time. They are intricate, delicate and tell a story.  Keep one always nearby."

We have ours so nearby, that our right wrists can simply be lifted to our hearts.

Thursday, September 11, 2014

Shop to Give

We are happy to post that once again, Hans' Godmother Roxie, at Scarf it Up Santa Cruz is partnering with our September fundraiser.  Scarf it Up is donating 15% of online scarf sales now through September 29 towards pediatric cancer research in honor of Hans.  These funds will then be matched by the Jimmy V Foundation for the Carousel of Possible Dreams Fundraiser. What a great way to do some early holiday shopping and raise money for research!  Check it out at:

Tuesday, September 02, 2014

Team Hans September Fundraiser - The Carousel of Possible Dreams

It’s that time of year – September is Pediatric Cancer Awareness month.  As you know, this can be a rough month for me, Kevin and Elle.  Two years ago this month we lost Hans to his Neuroblastoma at age 9, after an almost 6 year battle.
 We are proud to be a part of a 30–day fundraising effort for Neuroblastoma, research, awareness and education – TheCarousel of Possible Dreams.   Please consider joining us in honoring Hans by making a donation this month.  Funds will be matched by a third party for up to $500,000!  We have set a goal for Team Hans of $5,000.  It will be our one big fundraising push of the year. 
Proceeds benefit both the NANT and the CNCF. Kevin and I work closely with both of these organizations.  Currently, Kevin and I serve as parent representatives for the NANT at both the regional and national levels. We have worked with the CNCF on fundraising and outreach efforts since 2007. We pour a little bit of our hearts and souls into the NANT and the CNCF so that the next cohort of kids faced with Hans’ diagnosis will have a shot a better/longer life, and so that families might find support and connection throughout treament.
 Thank you for following this link, and for your donation of any amount. It truly means the world to see your names in support.
Follow this link to find Hans' page: http://www.festivalofchildren.org/site/TR/Events/TR_COPD_FROC?px=1115108&pg=personal&fr_id=1340
Or, go to festivalofchildren.org and search for Lara Weberling.
Other NB families are invited to start their own pages as well!

Wednesday, August 20, 2014

It is pretty rough not sending you off to the fifth grade this week, Hans. Oh, how I wish that you were sitting in a classroom! Elle and I picked out a back pack and filled it with the entire 5th grade school supply list and will drop it off and hope it goes to a little boy who needs it today. The girls in my book group joined in the effort. It's good to do a little good. Love is forever. xoxo

Thursday, August 14, 2014

N-PACK meeting at CHLA

I wanted to share with everyone that we are holding our next N-PACK meting next Thursday, August 21st at CHLA.  NB families are all welcome to join us, NB Staff is welcome as well, if they can get away.

Wednesday, June 18, 2014

Summer Bake Sale

Just wanted to share word that our friends in Houston continue to Bake Sale!
The next sale is set for 7/18/14 at TCH.
Please contact Kim at esmommy2000@yahoo.com if you'd like to bake, work or support that sale.

Thanks to Blair and Kim and Julie who continue to run the Houston Bake Sale at TCH and raise money for the CNCF!  So much love!!!  xoxo

Wednesday, March 05, 2014

Joy and Purpose

It has been a while since I made a blogpost. A lot has been going on!  Our friends in TX held another Texas-sized Bake sale at TCH and brought in $4,000 for the CNCF.  Thank you, Blair, Kim and Julie and all the bakers and volunteers for all of your efforts.  It's amazing!  Kevin was able to tack a quick visit to The Woodlands onto a work trip to Houston last month.  He visited the Team Hans section of the hike and bike path there.  Amazing!  I recently had a whirlwind tour of LA this Oscar's Weekend with 5 girlfriends from Texas.  Our hearts are full of gratitude for our many opportunities to follow Hans' little spirit as he guides us towards Joy and Purpose.

I heard an interview with Deepak Chopra a while ago.  He said that in order to find our authentic purpose in life, we can start each day by asking ourselves three questions - Who am I? What am I grateful for?  What do I want?  I know that when I ask myself what I am grateful for, the first thought in my mind and the first word on my lips is HANS.  His little spirit fills my soul.  When I ask myself what I want, the best answer that comes to me is joy and purpose.  I will probably forever be figuring out my authentic purpose, but I know that that little boy is at the center of it.

We  have had some opportunities to give service to Hans' life and his fight for it against his neuroblastoma.  Locally, we are working with the Bakersfield Memorial Hospital patient advisory council to try and improve the experience for patients and families in the ER.  Regionally, we are trying to create a Neuroblastoma Family Group in LA as a forum for connection, support, education, and a network for grassroots fundraising efforts.   Kevin and I are honored and humbled to be added as parent representatives to the New Advances in Neuroblastoma Therapies (NANT).  I have been invited onto the Parent Advisory Council and Kevin has been invited as the parent representative for the research review board for the NANT at the annual conference.  We will carry with us the spirit of Hans and each of his buddies that we love so well as we attend this meeting, and our hearts will be full.

Monday, December 09, 2013

Kick Off Meeting for CHLA Neuroblastoma Family Group

I would like to let people know that, together with the NB Team at CHLA and the CNCF,  I am starting up a grassroots CHLA Neuroblastoma Family Group.  The idea is for families to come together for information, support, community, and to join forces in fighting back by supporting one another in fundraising efforts for research, education and awareness.

Kick Off Meeting!  CHLA-NB Family Group

Neuroblastoma families (parents/caregivers, child, siblings) invited to attend
Please join us for our Kick-Off Meeting! 
Enjoy lunch and some social time
Round table discussion on the direction of this new group for families of children with Neuroblastoma

Thursday Dec 19th
Anderson Pavilion
Family Lounge 4M
Noon – 2pm

Lunch will be provided courtesy of the Children’s Neuroblastoma Cancer Foundation

Saturday, October 12, 2013

Texas Bakesale Still BIG!

The TCH CNCF Bakesale is still going strong.   NB mamas Charon and Jenn ran it for a couple of years - but with Jenn's family move to Oklahoma,  the reins have been passed over to our friends Blair and Kim and Julie.  Thanks for taking over the organizing of the fun chaos that is the Bakesale!  If you've somehow missed this changing of the guard, and would like to bake, work or even shop it,  feel free to email Kim at:  esmommy2000@yahoo.com

Thanks to Charon and Jenn for your years as "Presidents" of the Bakesale!  It is a big, crazy, fun job - I know!!!

Thanks too to everyone who baked!  You know who you are - too many to list.  Thanks to Carmen, Brenda, Mayada, Amy and Charon, who came out to help Blair, Kim, Julie work the sale.   You sweet volunteers raised another $2,000 for pediatric cancer research and education.  We feel the love!

Thursday, October 03, 2013


Hi, my name is Carmen Smiley, and feel extremely lucky that I had the pleasure of knowing and being touched by Hans.   Lara has asked, and I am humbled to, be a Guest on the blog and share the story with you of how Hans’ Texas “family” decided to remember Hans on the anniversary of his passing. 

Saturday, September 21st, 2013 came with mixed emotions. This marked the first full year of living here on Earth without Hans. But, it also was the beginning of a tradition where a group of people, who had been brought together because of their love for Hans, got together once again in his honor to dedicate a walking path to him (just steps from the old Sand Pebble Dr. House in The Woodlands, Texas) and maintain it in his honor. 
As we pondered various ideas of how we could appropriately honor Hans on this anniversary, we always came back to the question - what would have made Hans a happy boy?  To name a few, we thought of a red brick alongside many more at the Cynthia Woods Mitchell Pavilion entrance, specially engraved with a message honoring Hans, and we also thought of, and wondered how we'd go about putting a permanent placement of an object in one of the local pools or parks Hans used to happily frequent quite often. 
But, the ideas didn’t seem to be perfect enough.  And, the word "Family" kept popping into my mind. Hans so very much loved his family: Dad, Mom and big sis Elle (of course, + all his animal friends). So, the idea of doing an activity of Adopting-a-Path seemed so appropriate. In effect, each of us on Team Hans had "adopted" our little buddy.  Getting our group together and picking up litter along the same path that Lara and Kev and Elle would stroll him, would baby jog him (where he may have tossed out a blue raspberry Jolly Rancher or Ring Pop candy wrapper, or two, or three along his journey from time to time), would take walks on, and where he'd ridden his bike, seemed so special to us.  
So, we rallied the troops and once again the love for this little guy warmed all of our hearts. We gathered early, beginning at 8:00am, on the morning of September 21st.  We enjoyed donuts and drinks, and visited as we listened to Sam VanLaningham 's beautiful song called Hans Song, we rocked out to the Big Time Rush album-Hans' fav., wrote chalk messages, held Optimus Prime balloons, sported our Hans-gear, smiled, laughed, felt Hans’ presence,  felt the spirit of those who loved Hans from all over the world who couldn’t make it, felt somber, ate blue candy, signed a guest book, took photographs, gazed at Marigolds, contributed money for research we long to find a cure for, walked together, picked up trash together, pulled wagons of trash/recyclables together, played on play-structures, swung on swings, ran, walked, goofed around.  But, most importantly of all, we remembered our friend Hans and thought of his family, The Weberlings, who are so dear to our hearts and who will always have a special place in our lives.   
So now our group has a rallying point, a path, somewhere to gather, reflect, and give back. A place where our love for this boy and his family can be put into action. You all know that's what Hans would want us to do… He’d want us happy, having fun, doing what we like. There is a passage that I thought was somehow fitting to this story, for its obvious use of the theme of a path, but also for its message about the things that happen along the way. On all of our paths we encountered  Hans, and on his path he encountered us and because of this, we are all better for it.  

As you journey through life, choose your destinations well, but do not hurry there.  You will arrive soon enough.  Wander the back roads and forgotten paths, keeping your destination in your heart like the fixed point of a compass.  Seek out new voices, strange sights, and ideas foreign to your own.  Such things are riches for the soul.  And if, upon your arrival, you find that your destination is not exactly as you had dreamed, do not be disappointed.  Think of all  you would have missed but for the journey there, and know that the true worth of your travels lies not in where you come to be at journey’s end, but in who you come to be along the way.  For life isn’t a destination—it’s a journey.  We all come upon unexpected curves and turning points, mountaintops and valleys.  Everything that happens to us shapes who we are becoming.  And in the adventure of each day, we discover the best in ourselves. 

I think Hansie might be looking down from Heaven right now advising us to continue to do just what this passage said.  I know I’m glad Hans’ journey had us in it. 
Thank you to everyone for making this possible.   And stayed tuned from me for future ‘pick up’ dates happening each quarter…and the journey will go on…..
LOVE and MISS you dearly Hans; and love to you all,  
PS-If you are feeling moved, and would like to help by making a monetary donation (big or small, as every penny helps), to The Children’s Neuroblastoma Cancer Foundation, please do so by visiting Hans’ park http://www.cncfparks.org/help-a-child/park/21/    Let’s make September not only just Pediatric Cancer Awareness Month, but make it each and every day of the year!

Saturday, September 21, 2013

Love and Loss at One Year

As most of you know, it has been one year since we lost Hans.  I wrote at six months that it was easier to talk about what we are doing, than it is to talk about how we are doing.  Now, at one year, I’m compelled to share some of my personal thoughts and feelings.  In the past year, as I’ve read different books, a few things have really popped out at me as helpful and meaningful.  I am going to share some of them and put my thoughts together about losing Hans and the emotional/spiritual aftermath of our loss. 

This year, I made my way through War and Peace by Leo Tolstoy. One passage helped me put into perspective the thoughts and feelings we may experience passing from this earthly life onto death.  Prince Andrey has deathbead revelations about life, love, and his almost unrequited love in Natasha.  "Love, what is love?  Love hinders death. Love is life.  All, everything that I understand, I understand only because I love. Everything is, everything exists, only because I love. Everything is united by it alone. Love is God.  And to die means that I, a particle of love, shall return to the general and eternal source.”   How beautiful to think that as we witnessed the outward signs of Hans’ last minutes of life, he was tapping into a greater, more beautiful source and reconnecting to that place from which we have all have come and to which we shall all return.  Prince Andrey goes on to describe, “I knew that feeling of love, which is the very essence of the soul, for which no object is needed.” 

The morning that we lost Hans, one year ago today, we were overcome by a feeling of Amazing Grace or, a peace that surpasses all understanding. Perhaps it came from a transcendence of knowing that Hans was somehow truly in even better hands than he was in his cozy home, in his little body, with his adoring family caring for him.

My favorite quote about what is to be found once you get to the other side comes from Eben Alexander, a neurosurgeon who experienced an entire week in Heaven, the same week he spent in a coma and by all outward measures was “brain dead”, not to return.  He chronicled his experiences in his book, Proof of Heaven.  Once he “died”, Alexander experienced a message of unconditional love and acceptance he received beyond the scope of language.  He was greeted by a beautiful lady (who he’d later find out was the sister from whom he was separated at birth) who shared with him a look of love that was beyond all our earthly constructs of love.  “It was something higher, holding all those other kinds of love within itself while at the same time being more genuine and pure than all of them.”  The message he received had three parts:  “You are loved and cherished, dearly, forever.  You have nothing to fear. There is nothing you can do wrong.”  What a welcome!  What a beautiful and almost incomprehensible comfort to think that our boy had passed on to be even more fully loved once he departed from his adoring family.  And, oh, he was so loved right here!  (Serendipitously, Kevin stumbled across Newsweek Magazine and its article with this passage on San Juan Island the day after we celebrated Hans’ life in Seattle!)

I love to read about love and the way it transcends death.  I continuously think about the beautiful, powerful unconditional love Hans had for us. Our boy endured hundreds and hundreds of treatments and procedures in an almost endless nonstop stream, just to be here, just to be present for each of his days with us, to be a part of his little family, to love and to be loved.  He repeatedly summoned the force to get back into the ring like a tiny little gladiator.  He’d go back in and take anything that was thrown at him, tapping into an energy reserve from deep within. That was his job and for it he gave his lifeblood.  We witnessed a sustained and intense effort and indeed, we were humbled and awed to be the little family that he was fighting to simply come home to. To be so loved and to have loved so is a gift-what a gift!

When I think deeply and am heart broken that Hans is gone, that he is no longer physically here, I have precious and deep moments of realization about what he has left behind.  I know that Hans’ love was as real a thing as I can imagine.  I keep thinking:  Love is a noun, like a brick, or a blanket. Hans’ love was that real.  His love had energy and that energy affected and changed us.  We have been metaphysically, physically, emotionally, and spiritually altered by the impact of that love.  Hans’ love for us has changed us at the very core of our bodies, spirits and minds. Thus, Hans’ love remains alive in us.  It has affected the way we go about living our lives and interacting with others.

Yes, we are left without him physically here.  But there are caverns that have been carved into our very beings.  These caverns are now filled with something else, something deep and still.  There is now an internal well or rich reservoir of love and compassion. Hans created that space, he carved it out and left it there, and his love permeates the sacredness of that space.

I was blown away by this passage from Wild, by Cheryl Strayed, about the aftermath of catastrophe. After losing her mom to cancer, Strayed went on an epic hike of the Pacific Crest Trail.  She hiked through most of California and, once in Oregon, came upon Crater Lake - the remains of what was once Mount Mazama - a volcano whose massive eruption about 7,500 years ago left behind no mountain at all but a vast emptiness that would eventually become the deepest lake in the US.  “This was once Mazama, I kept reminding myself.  This was once a mountain that stood nearly 12,000 feet tall and then had its heart removed.  This was once a wasteland of lava and pumice and ash.  This was once an empty bowl that took hundreds of years to fill.  But, hard as I tried, I couldn’t see them in my mind’s eye.  Not the mountain, or the wasteland or the empty bowl.  They were simply not there anymore.  There was only the stillness and silence of that water.  What a mountain and a wasteland and an empty bowl turned into after the healing began.”  

We shall never be healed of the loss of our boy.  We shall never recover from the plucking away of that gorgeous blonde thing, with his sea green eyes and radiant smile, our only son and brother. One year after our loss of him, and all we can say is:  Love prevails and endures.  Love is forever.  We comfort ourselves in knowing that he was beloved while he was here with us.   Hans lived a beautiful life and now he is a part of something bigger and (again, incomprehensibly!) even more beautiful. 

I still find myself having difficulty balancing on the slippery log of perspective.  I can focus on the tragic loss of the boy that doesn’t get to play on a soccer team, graduate, get married, build a life and a career, or do any of those things that make up the life that each of us has come to expect and take for granted.  Alternately, I can focus on the beauty and the completeness of Hans’ life and his fight for it, which he gave everything he had. 

What do we hope to get out of life?  How many years, how many things, how many possessions, how many relationships?  How many goals do we hope to meet?  I am comforted in knowing that although Hans’ life was short – he got from his compact little life all that any of us can ever hope for.  Writer Raymond Carver left this question for us, engraved on his tombstone:

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.”

Love is not only the very essence of the stuff of the soul, but to love and be loved is the end game of this life. I was always consciously grateful for the gift of Hans’ love.  I always used say to him,  “Thank you for loving me."  I guess I wanted him to know that I would be eternally grateful for the gift of it.  

I have to generously thank each of you who also loved Hans and who helped him to be so beloved for his time here on Earth.  I know and I saw how he loved each of you.  Thank you for scooping him up and loving him back. 

Finally, Anne Lamott writes in Help, Thanks, Wow, “Love falls to the earth, rises from the ground, pools around the afflicted.  Love pulls people back to their feet.  Bodies and souls are fed.  Bones and lives heal.  New blades of grass grow from charred soil.  The sun rises.”  In the emotional aftermath of losing our boy, we are left with no choice but to move forward and to make ourselves a beautiful life.  But, believe me, we are transformed.  Hans has become a part of us. He is helping to plant the seeds and create the landscape that we shall know.  

What is perhaps most important about Hans’ story, is that it is not just Hans’ story.  It is a quintessential human story.  This is what we are here for.  This is what we do.  We love deeply.  We give this life and our loved ones everything we’ve got.  Each of us has this same powerful love for our beloved and it is a beautiful thing.  We are unified as human beings in our capacity for this beautiful, deep, soulful love.  

I am but blessed to be a witness of, and a party to, a divine example of the depth, beauty and intensity of such love.      

Love prevails and endures.  Love is forever.  We are not alone.

Psalm 23  The Lord is my shepherd; I shall not want.
 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.