About Me

My photo
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:
www.scarfitupsantacruz.com




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.