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..

Oxaliplatin

Well, I sure don't get around to posting much these days, do I?  Sorry - it has been harder to get to my laptop these days.

We were asked to arrive at CHLA Wednesday for a CT, and we were warned there may not be enough stem cells to proceed with our plan.  Long story short, there weren't. We needed 2.0 viable stem cells and we had a mere .8.   We got the CT.  It showed some more progression to the jaw and lung nodules and I think pelvis area:(  Counts are low low low.  This combination of bulky disease plus low counts doesn't give you a lot of really really great options.  But there are options!

Hans is having another concerning symptom of swelling in the feet and legs.  After reviewing the CT, an ultrasound was ordered.  They were concerned about clots.  Poor Hans powered through a two hour ultrasound to all the veins in his legs Wednesday night.  Ultrasound was negative for clots. An MRI was ordered to check for tumor pressing on a blood vessel, affecting blood return.  It never actually happened due to scheduling but it was ordered.  We waited inpatient all day Thursday.   I thought we were going to see the MRI and go from there.
We found out that it wouldn't happen Thursday and I was starting to get worried.  If we had to wait for Friday, what were the chances he could get any radiation on Friday afternoon to help the swelling.  I asked everyone who came through the door to call in a favor with radiology scheduling.  They all looked at me, like, sure Lara.  And then, Dr. Wong just walked through our door.  He announced that he knew where to radiate based on the CT alone.  We could forgo the MRI.  I thought, oh, this is what it feels like to have a hero!  Dr. Wong just opens the door, walks in and saves the day.  He is a really really good guy!  He is pictured above with part of his great XRT team... Anthony, Themonie, Debbie, Dr. Wong, and Alisha:)

Hans got two large doses of radiation to the pelvis on Thursday and Friday.  Friday afternoon our team decided to go ahead and start a new Chemotherapy - Oxaliplatin.  It's new for Hans and has something of a track record against NB. And, most importantly for us right now, it's not too hard on the counts. We were pleasantly surprised that they went with our suggestion of a quickie little chemo infusion and then a discharge on Friday night.  We are home now.  We need a home run with this one.  It has to be the magic bullet, knocking back bulky disease and at the same time allowing counts to come up.  We are on our knees.  Hoping and praying for our special boy.

Meanwhile, we've had a little company.  My friend Perla brought a meal and treat up to us at CHLA.  Uncle Mark, Aunt Debbie and Jessa and Kalene are in town this wknd doing a little spoiling!  And Elle's school is looking out for us.  The counselor, Ms. Antongiovanni, sent over the loveliest meal on Tuesday night.  It was perfect and now one of the other teachers at the school is setting up a Meal Train for us.  You can email me if you'd like Ms. Tiffin's information.  kevinandlara@hotmail.com.  It reminds me of the many fine meals we were treated to by the St. Anne's Society back in TX.

so proud of Hans!

I'm so proud of this kid right now.  We had something  going on -I didn't mention it to hardly anyone until I knew which way I'd go with it.  I had a feeling that I had better get another iron in the fire for a little while.  On a whim, I sent an email to Dr. Sholler in Michigan a few weeks ago.  The result of that email was a consult in San Diego set for Sept. 10th.

I had been all over the map about this consult.  I am aware that one of my personality strengths is being able to see the plusses and minuses of all possibilities.  The flip side of that strength is that I struggle with making a final ultimate choice sometimes!  San Diego is 225 miles from home, a four hour drive  (better than a 5 hr flight to Michigan to see Dr. Sholler,) but a four hour one-way drive and a day in a new hospital is a lot for a boy whose legs are really hurting him and who is not getting around so well. The decision was really getting to me, and I was a real mess!  I went to bed on Saturday night 99.9% sure we wouldn't go.  But, for some reason (Kate's blog comment maybe??) I woke up on the fence.  Kevin was really supportive and just kept saying I needed to do what I needed to do. Elle had a strong feeling that we should go.  (Elle gets feelings about treatments sometimes and they have always been right.)  I talked to Hans about 7:30 at night and we had a real heart to heart.  He has a lot of anxiety about going around to other hospitals, and is clearly against it.  He wants to get better, but he'd  prefer to get better from LA, or even Bakersfield, or the couch!  But, Sunday night, he was able to buck up and do it for his mama. I explained to him that I thought it might be important to go talk to this other doctor in San Diego.  I asked him to trust me on this, and to do it for me if he thought he could.  He came around, he said "FINE".  And then he started giving me his list of conditions! I was so relieved my big boy made the final choice so easy for me! 

We left at 6:30 am yesterday and didn't have too much terrible traffic through LA.  We were able to meet up with our friends the Hutchisons.  They were the perfect ambassadors to San Diego. They treated us to a great chips and salsa lunch in Old Town,  let Hans loose in a candy/tshirt shop, and even called in a few favors at Rady Children's in SD. We were given royal treatment.  By the time we got all the way down there Hans needed a bed and a little push of IV pain meds.  The nurse recognized that before I even did!  Amazing.  Hans was so cute, when I said "They're treating us like royalty", he said, "Yeah, they're treating us like the Queen and Prince of San Diego!!! "

Rady's Children's in San Diego is a full partner in the Neuroblastoma Medulloblastoma Translational Research Consortium.  This is another perspective on NB offering  options that differ from those offered through COG and NANT...  The SD doc fully endorsed our next step - going ahead with the chemo/stem cells, and suggested one or two trials Hans MAY be able to qualify for after that. Anyway, we're in the system, and a whole new Consortium of options may be opened up for Hans.  Everyone left the meeting with the same idea.  Hans is in charge.  We're not switching docs, or hospitals, but we are open for all collaboration of ideas on how to help our boy.  It was a 16 hour day.  It wasn't easy for Hansie, but I felt so very proud of him!  He trusted me and got that trip done.

The Hutchison's spoiled us even more.  Neil grabbed my keys and topped off our tank!  Who does that???  I felt like, oh my gosh, in Philly we have the Tennesons, in San Diego we have the Hutchisons.  Two more miracles for Hans (and the rest of us too).   Hans got to meet Charlie and Andrew.  Neil and Margot brought them up to say HI at Rady's before we headed north.  All I can say is I just hate it that I never get to meet soccer-playing, awesome smart sweet fun Sam who lost his battle to NB two and a half  years ago.  Neil and Margot have done a lot for NB and for me, personally.  I reached out to them when Hans first relapsed and I was so desperate!  We made it through LA traffic and home by 9pm, with only a pit stop at our favorite Hawaiiian BBQ on Sunset!

 As I type this we are getting blood at CBCC in Bakersfield.  Poor Hans had to get here at 7:30 am for the first lab draw, the infusion was scheduled for 1pm, but they brought us the wrong bag o blood.  I freaked b/c his HGB was 5.5:(  They brought the right bag and the nurses are working overtime to stay with him til he gets his last drop.  Stressful week!  Hans goes in for another CT scan and a meeting tomorrow.  We are hoping to get the final thumbs up for our chemo plus stem cells.  Hoping and Praying! 

Still home

We made it through the week here at home.  Hans went in locally for platelets on Friday and will likely receive blood early next week (thanks, donors).  We are working on our plan.  We are moving forward with a chemo agent Hans has never seen (Thiotepa) followed by a stem cell rescue using our last precious bags of cells.  It is taking us a little while to get going, because we are requesting the balance of the stem cells from Texas.  We hope to be inpatient doing the chemo late next week.

Hans is hanging in there.  We are spoiling him pretty good around here.  My bother (uncle Tommy) sent an R/C speedboat and Kevin and Hans just went shopping and picked up a brand new "Dune Racer".  Fun.

Elle started her season with the Bakersfield Legacy!  I'm so happy for soccer season:-)  It was only 91 degrees out on the field today, and there's a trail right along the Kern River at the fields, so I can get a little 'nature walk' in while the girls warm up before the game.  Yay.   Kev did another metric century ride last week through historic Fort Tejon nearby.  I try to go out for a jog 3 - 4 mornings a week. 

We had a nice visit from my Aunt Michelle and Cousin Jen as they drove through town on a road trip last weekend.

That's about it for this week's update.  Thanks for checking up on us.  Thanks for your thoughts and prayers for our special boy. 

In and Out

I haven't posted because I keep waiting for news of what's going on!  Most of last week was spent making and then rescheduling plans.  Hans finally went in for an additional one-time dose of XRT to the left knee.  By the time Hans woke up from sedation, he had spiked a fever and needed both blood and platelets!  So, we got a room on 4West.  We had Elle with us as a special treat!  We got XRT, Blood, Platelets, even a little bit of Antibiotics and some Potassium!  All tanked up.  As always, thanks to all of you who can and do donate blood products - you are lifesavers.

This pic is actually from our admission Last Week where Hans built his third or fourth green lantern (Thanks G'ma S!) the hospital gift shop has a rather tiny Lego section, so sometimes we just build the same ones over and over...

Kevin and I each had an opportunity this admission to talk with Dr. Marachelian.  Now we just have to see which option we can actually get him set up with and go forth.  Looks like we are moving off Vorinostat already, due largely to PAIN that has really really increased since starting.  We have to infer that it's not helping very much.  Lucky, our Onc was able to pull together a laundry list of options. 

Hans is now home building, eating, and watching our favorite show!  We'll take it.  Thanks for checking up on us and for keeping Hans in your thoughts and prayers.