We are getting ready to head out for The Run in Memory of Hans!  It's tomorrow.  We are so pleased with how it is coming together.  Thank you Beth, Carmen, Michelle, Ginger Charon and all of our friends working so hard on making it special.  Thanks Tracy for ordering Team Hans shirts!

Here's another speech.  Uncle Quinn gave this talk.

Hans had a great smile that could light up the room. It was infectious and genuine.

Hans loved all animals. His ability to connect with them was extraordinary. It didn’t matter if they were the cats or dogs, horses or cows – he wasn’t afraid of them and they sensed that he was going to be kind to them. He was gentle and loving with them all. And all of his medical experiences made him the best little vet tech when any of his animals need their own medical attention.

He loved to ride on his Grandpa Dale’s shoulders to go feed the horses. He loved to ride the horses too. He would tell Grandma Kathy she could ride Pepper and that he would ride Zippy and Ellie would ride Eddie. He had it all planned out.

Hans was the bravest person that we know. He endured so much and rarely complained about anything. Usually he was the one reassuring us that everything was ok.

Everyone wanted to know Hans. He was a role model for all of us – teaching us courage, strength and love. It made you feel special just to be a part of Hans life.

He was fearless! Everyone was amazed by his jump off the boat dock roof! And he loved riding in the go-kart with Ellie – she wasn’t as protective as mom or dad and would go fast with him!

All of us would be jealous of what was on Hans' food tray. He always had a full tray! At any time you could find chicken, cow steak or ham steak, chips & salsa & a bowl of cheese dip, his special brand of chicken noodle soup or spaghetti tacos – all the good food groups!

Hansie gave the BEST love pats. If he gave you a hug you always got that special little bonus of a love pat on the back. They were the best!

Hans had a strong sense of right and wrong. You DO NOT climb over the fence by the canal to pick the lemons. Only the worker men can be over there!
Hans loved to tease! This past summer when Grandma Kathy and Aunt Debbie were visiting, Aunt Debbie made the comment that the fireman at the beach were pretty cute. Hans told her that she was married and she shouldn’t be looking at the fireman. If she didn’t stop looking at the fireman he was going to have to tell Uncle Mark. Well, she kept running into the fireman or fire trucks during that visit and Hans kept warning her that he was going to have to tell on her. Finally, he solved her problem for her. He told her “Fine! If you want to be married to a fireman then Uncle Mark can just go get a job to be a fireman!” We’re still waiting for him to get his uniform!

Hans had the mind of a little engineer. He was the best transformer and Lego builder. We had a big container of transformers left over from Kevin and my days and Hans put them together without any of the instructions – just the pictures. His Lego building skills were hands down the best! It was always our challenge to find a set with enough pieces to make it a true challenge for him. Once he started a new set, he didn’t stop until it was done.

Hans took after his dad – he loved playing video games and had the game skills of someone way beyond his age. He loved the games that he could play with someone rather that playing against them.

Ellie wasn’t the only family member with a strong fashion sense. Hans had his own fashion style! His signature look was always PJ’s and his black Behr brand hat. He told Grandma Kathy that you only had to wear clothes when you went to school but he even broke that rule.

Everyone loved experiencing things through Hansie. We loved when he got to do ‘kid’ things.
We loved that he had so much fun swimming with the fish in Hawaii.
We loved whenever he got to go to school – even if it was just for a few hours. We loved when he got to take riding lessons or swim lessons.
If he grilled you dinner – it was the best!

Hans taught us all to live for today and not worry about the ‘little things’ or tomorrow.

He taught us not to whine about things.

He never felt sorry for himself and neither should we. He taught us that it’s not all about us – we need to be compassionate and giving to others.

He taught us about strength, courage, bravery, trust and love.

He was everyone’s HERO.

Thanks, Q!  He loved you too.

Run/Walk in Memory of Hans: Seattle Update

We have a spin off Walk in Seattle to support the Run in Memory of Hans in The Woodlands.

WA Friends/Family - Please feel free to come out to Green Lake on Saturday November 10th, 9am

and join my mom and a couple of family members/walkers to do an In Memory of Hans Walk around Green Lake.

• Bring $1 (or more) in donation to the CNCF
• Bring a pair of new PJ's or an unwrapped toy (think Lego, Bionicle, Transformer) to donate to Seattle Children's Hospital Cancer Center
• My mom (grandma Stephanie) will be taking the collection and later delivering it to the hospital
• Walk will start at the Bath House at 9am

Thanks if you are able to make it.  Just for fun for those who can't be with us in The Woodlands, and don't want to be left out!

Peace, Love and PJ's! Oh, and a cure for NB too!

Speakers

I am not doing my recap in the exact order that the speeches were given, but I thought it would be really nice to share what people shared.
We had a handful of speakers talk about our beautiful boy.

Here was my mom's talk.  Stephanie Cady, Grandma to Hans.


When I think about Hans 3 words come to mind: Trust, Courage and Love.


Trust fortified him.
Hans trusted his family.
US News and World Report recently ranked the best pediatric cancer treatment hospitals. This year 4 of the top 7 hospitals were hospitals where Hans had been treated.
Hans’ trust in his family made his treatment the best possible.


Courage transformed him.
Just a day or two, after his diagnosis, I literally witnessed in his eyes a transformation: Hans went from being a carefree, curly headed toddler, to a determined and ferocious 3 yr old Neuroblastoma warrior. He kept his resolve to fight his battle with enormous courage throughout the rest of his life.
He listened to his doctors and innately knew which were the most dedicated to finding a way to stop his disease, and then he got to work!
Hans did everything they asked of him. He committed himself, mind and body to each treatment. This was the only way he could help them.
He understood that wherever his parents took him it was up to him to bravely endure each treatment in a heroic effort to defeat his disease. He faced each with great courage. Because he knew how important each was.
Early on one doctor at TCH described Hans as a philosopher. At the age of 3, some of his doctors realized how deeply he thought about everything and that this allowed him to lived with great clarity and single mindedness.
He understood the battle he was up against, but never gave into it – with the help of his family. His courage helped them to seek out new and promising treatments. When I first started learning about neuroblastoma the 5 year survival rate was only 35%: and Hans earned his place as he bravely fought it for 2,160 days. The current survival rate of 5 years is now 60%. I believe Hans played a big part in that.


Love surrounded Hans. Hans loved life.
Love enveloped Hans his entire life. He loved Elle - who treated him just like a little brother should be treated! But she was also always ready to give an extra measure when-ever it was needed.
He loved his mom and dad fiercely and realized what a perfect “love fit” they all were.


Hans lived joyfully! I will always remember his laughter, like when he would watch “King of the Hill” and laugh and make a comment on how humans handle real world problems; and how he would laugh at really silly jokes and sometimes just act all goofy.
I will always remember the excitement Hans got from discovering new things.
How to ride a bike, throw the ball for Honey, play a new video game, swim, dance, snorkel, make jam or pizza, shoot off Roman candles, build a 3,500 piece Lego, and thousands of other things.


I will always remember Hans and the joy he gave me. I will remember him for the trust, courage and love that was so evident in his short life.


Thanks Mom!  Hans loved you too.

Let It Be

Back to the Celebration of Life recap  ...

Our lovely friend Jana somehow sang "Let It Be".  Right now I can't believe she was able to sing it.  And, oh, she did a lovely job, acapella.  Thanks, J!

Here's a link to Paul's version on YouTube:
http://www.youtube.com/watch?v=RdopMqrftXs

Our lifelong friend Sunny read a favorite poem from my childhood.

Listen to Mustn'ts by Shel Silverstein

Listen to Mustn'ts, child, listen to the Don'ts.
Listen to the Shouldn'ts, the Impossibles, the Won'ts.
Listen to the Never Haves, then listen close to me.
      Anything can happen, child, Anything can be.

I think this poem just reflects the mental state you have to put yourself into
if you are going to fight a fight like we had to fight.
You have to ignore the single digit survival statistics,
you sometimes have to go Doctor Shopping.
You have to follow your gut, follow your boy and just believe.
We had to follow our special boy's lead, who truly never had any other
plans than just to be here with us.  He never feared.

Memorial Run

   
I have to pause from my recap of the COL to let you know that our friends in The Woodlands are hosting a special Memorial Run for Hans as a Fundraiser for the CNCF.  It will be held in The Woodlands on Nov 10th at Barbara Bush Elementary at 8am.  Cost of the race is $1, plus any additional donation to the CNCF.   It is very special to us that the race will also be a PJ and Toy Drive for the kiddos at TCH! Six years ago on that weekend, many of these same friends hosted the Run for Hans on this same course.  The original Run for Hans brought in over $20,000 that was gifted to us to use in Hans' ongoing treatment.  That money kept us fighting, and it sent us to our very first Children's Neuroblastoma Cancer Foundation Conference in Chicago, 2007.  Having received such a gift just three weeks to the day after first hearing the word "Neuroblastoma", we made a family promise to try and pay it forward and to match the amount of funds raised for our family in eventual research dollars.  We can proudly say that we've since been able to help raise more than that amount with the help of our family and our friends.          

If you would like to participate or support the Run or the Toy/PJ drive from afar, thank you!   You may send a donation made out to the CNCF or a Gift Card for the Toy/PJ Drive to:  Michelle Nolen 26 Shallow Pond Place The Woodlands, TX 77381.  Hans sure loved getting gifts cards!  In our second to last hospital stay we ran out of clean PJs and the charge nurse was able to come up with a pair of donated Lego Batman PJs and I can't tell you how it REALLY saved the day!  Hans liked to shop for toys from Toys R Us, Amazon.com, and Target, and he usually found PJs he liked at Target.  I know the kids up on the 9th floor will appreciate a special treat just like Hans always did.

Thanks to Beth Whiethead!  You contacted me just days after we lost Hans wanting to do this Run.  Thanks to Carmen, Michelle, Jennifer of Silly Nilly, Katie and Little Saints,  Charon, Pizza Tonight!, Dosey Doe, Luke's Locker, Chick-fil-A, and Fast Signs for making this happen.

We still had some donated frequent flyer miles to use up, and we went ahead and used the balance of them to book flights to Houston.  The three of us will be there on race day.

If I Should Fall Behind

Our buddy Sam showed up from Fairbanks, Alaska to play a couple of songs at the Celebration of Life.  Our first song of the night was Bruce Springsteen's If I Should Fall Behind.  He sang and played the acoustic guitar.  Thanks, dear Sam!
Here's a You Tube video of Bruce's version.  Copy and Paste this link:
http://www.youtube.com/watch?v=04mRvBaEku4

Thanks, Jessa, stole this pic from your FB!

I stole this pic from my cousin Jessa!  Thanks.
I am going to piece-meal the program together, so if you are a speaker and you are willing to share what you wrote, please email it to me at kevinandlara@hotmail.com.  Thank you!

Roxie officiated the COL and gave an amazing introduction and opened the evening with Optimus Prime and then our friend Shelley read this poem aloud.  It was Elle's selection for the evening. Her favorite poem of all time. 

“Hope” is the thing with feathers - (314)

By Emily Dickinson 1830–1886 Emily Dickinson

 

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

COL Part One

Yesterday was incredible.  I want to thank all of our family and friends for making it happen.  Thanks to those who worked, helped, performed, created, celebrated, traveled and showed up!  I will try to share bits of the event on this blog over the next several posts.

About three days after we lost Hans it occured to me that his story was more like a fairy tale than anything else. I wrote this to him, and I shared it at the COL via audio recording.

Hans, you were a Fairytale,

A wise, brave boy.

With sea green eyes,

and a beaming smile.

Your blonde curls sprang like life itself.

Not only physically beautiful, you were smart and capable,

kind and gentle.   
You loved animals and you understood machines. 

You were our special boy.

Where but in a fairy tale do we find our charmed boy so cursed by fate and odds?

 You set out with no choice but to embark on your Epic Journey.

 The Journey was yours, and we were but there to help you through it.

It took you to faraway lands to find the best doctors.

And it opened the hearts of everyone you knew; 

your family, your friends, your neighbors.

They helped you and sent you on your way 
with miles and dollars and wishes and hope.

Where but in a fairytale was a boy blessed with so many Fairy Godmothers?

Ladies and gentlemen of the land fell for you everywhere you went.

You were covered in prayer and love and many spoils.

From near and far, people sent you foods and presents.

We were simply blessed to be the family you were delivered into-

 a family somehow perfectly equipped to fight just for you.

Your dad worked hard to secure your every need and want.

The two of you were bonded in pride and joy, and work and play.

And as your mom I had the good fortune and simple luxury of caring for you.

You were my first priority and I was, of course, a devotee to my task.

Where but in a fairy tale does our boy have a sister so fair?

The sister that whole villages think not twice of caring for.

While we were tending to you,

Lists of lovely ladies came to her aide. 

She was able to live her little girl’s life

and all the while be there for you at the end of the day.

You graced us all with your good, sweet love,

your fight and your focus. 

You were incredibly intentional and hard working at your task.

And though we found to the best doctors in the land,

No amount of love and effort would yet keep you here with us.

Science is still a few clicks of the rubik’s cube away...

We have to trust with Hope and Faith

that we in fact have a happy ending, we simply cannot see it.

The happy ending will be revealed as we join you once again.

Your fairy tale shall have one thousand happy endings.

Every one you’ve ever touched will keep 
a little bit of your magic burning within them.

Your spirit will live through us and be a force of goodwill, authenticity, 
and childlike devotion to those we love. 

Thank you for being our special boy.

We will love you happily ever after, Hans.

Celebration of Life

Hans' Celebration of Life will be held at The Northgate Community Center in Seattle, WA on Saturday October 20th from     4 - 7pm.  We are planning a buffet, a program, a balloon release for Hans and a game of kickball, because 9 year old boys should be playing kickball.  So, bring an appetite and a pair of kicks.

Believe me, Hans would want everyone to wear whatever they like.

Thanks to all my friends and family who are helping us get ready for this celebration.  Special thanks to my Aunt Pati who is hosting the event at 'her' community center.

I have been thinking about this optical illusion. I find myself focusing on all the positive wonderful things about Hans and his life. I remember how beautiful he was first and foremost, how sweet and loving, how sure of what he wanted in life, how full he was of unconditional love for the people in his life. I remember how he never complained about his health challenges. He got so many lucky breaks along the way with his treatment - his tumor was for a long time mysteriously responsive to his therapies.  Focusing on the lovely aspect of Hans' life is focusing on the young woman in the picture above.

The tough stuff - the horror of his diagnosis, his terrible treatments and life-altering side effects,  the odds stacked up against him. His treatments were relentless.  He was in many ways sidelined from a 'normal' childhood by this disease.  Focusing on the tough stuff is focusing on the aged woman in the picture.

It seems that I can shift my focus from one aspect of his life story to the other. Just like in the picture above.

But, in reality they are both there and they will always be.

Perhaps the tough stuff makes the good stuff even more beautiful. Perhaps the beautiful stuff makes the hard part even harder. The reality is they co-exist together and always will; the yin and yang of life.

Thank you for your outpouring of support.  We wanted to put up a note to let our friends and family know that we are planning a Celebration of Life on Saturday October, 20th in Seattle, WA.

In Lieu of flowers, Memorial Contributions to the Children's Neuroblastoma Cancer Foundation are always appreciated via Hans' Gifts of Hope Fundraising Page 

Or by mail at:
Children's Neuroblastoma Cancer Foundation
360 W. Schick Rd., Suite 23, # 211
Bloomingdale, IL 60108.   
www.cncfhope.org

Hans Nisula Weberling 07-15-03 - 09-21-12

 Hans about 2 1/2 weeks before diagnosis in 10/2006

 Hans about a week ago snuggling with Elle 9/2012

This morning, at 8:29am our beautiful son Hans transformed into an angel, at home in the loving arms of his parents and his big sister.

 His little body put up a better fight than it ever should have had to, and now it is restored to perfect health and beauty. His blond afro is flying is the breeze. He is running wild and free.

 We can picture him, in Papa’s lap, with all of his other loving greats. He has already been given a comprehensive orientation by his pal Erin. He is now restored to full nine year old vigor and is surely playing soccer, kickball or four square with Sam. Soon, Ryan and Patrick will teach him how to play baseball. I know that he is being loved up by at least three or four ‘sisters’ in Chloe Belle, Carlie, Lily, and Serenity. He’s about to go on an ATV ride with Braeden.

 He lived a beautiful life. We couldn’t be more proud to be his loving family. We are blessed to bear witness to his strength, his spirit, and his unconditional love. Thank you for being a part of our special boy’s difficult journey. It was fraught with so many challenges, and yet charmed by so many miracles.

To our Catholic friends and family, I ask that you please say a (Sorrowful Mystery) Rosary for Hans today if you can. Thank you..