About Me

Tuesday, March 10, 2015

Treatment News!

Unituxin Approved for Deadly Pediatric Cancer


Today the FDA approved Unituxin from United Therapeutics to be used in front line therapy for Neuroblastoma.  The addition of immunotherapy to front line treatment for kids with neuroblastoma dramatically improves survival stats for these kids.  Now kids with Stage IV high risk NB have a 63% survival shot.  This drug has been in the pipeline for a long time, but not long enough for Hans to benefit from it.  A clinical trial in 2010 showed strong evidence for using immunotherapy in addition to standard therapy vs. just standard therapy alone - (chemotherapy, surgery, radiation and stem cell transplant - the most brutal cancer treatment protocol know to man, as it was).  It's amazing to see these changes in just the time since Hans was diagnosed, about 8.5 years ago.  We still have a long way to go, but it's good to celebrate the good news!!

Hans was diagnosed too early to enroll on this clinical trial for frontline therapy.  He did qualify for one round of immunotherapy, much, much later in treatment. We were grateful that our doctors were able to do that for him!!

Saturday, February 14, 2015

Feeling the Love on Valentine's Day

We remember Hans and he lives in our hearts everyday.  This Valentine's Day I'm sharing a list of the many groups, funds, foundations and charitable efforts helped us during Hans' long fight against Neuroblastoma.  I started to think of HOW MANY different groups were there for us over the years - and I figured I should make a list!  We were humbled, and overwhelmed - we were a middle class professional family, we didn't expect we'd be finding ourselves on this side of such charitable efforts...
It's amazing when people are moved to do charitable things for others.  It truly makes a difference.

Gifts, Cash and checks at initial diagnosis - we were flooded with cards and gifts just as soon as Hans was diagnosed, a coworker brought us an envelope stuffed with approximately $800 cash the week we were diagnosed, friends brought gifts, and Hans’ school collected a CRV full of toys and books to keep Hans busy while inpatient.

Fund for Hans set up by friends and community members that first week of diagnosis.  We received a letter and a check for $1,000 from a company in Huntsville, TX.  It was part of their charitable giving program to make meaningful contributions to families facing pediatric cancers, and to support them as they “endure and persevere”.

The Run for Hans set up by friends, my running coach, my SSJMYC playgroup, and my co-workers at Little Saints preschool,  was held three weeks to the day of Hans’ first visit to the TCH ER.  The Run for Hans raised approximately $20,000 which we used for medically related expenses.

Meals from the Saint Anne’s Society were delivered three days a week for five entire months starting the week Hans was first discharged from the TCH.  The meals were lovely and balanced and catered to our dietary restrictions (no beef, no pork).  We also received meals from friends at two points later in treatment, once organized through Meal Train.  These meals helped us get through particularly busy and unpredictable treatments.

Candlelighter’s Houston often provided us parking passes to cover the $10 daily parking fee to park in the garage when we came in for clinic visits many days each month.

Child Life  provided Hans with a toy at many clinic visits as well as many inpatient stays.  They also provided Hans with education, support and distraction during difficult procedures and transitions.

His Grace Foundation provided support while Hans was inpatient on the Bone Marrow Transplant unit.  They treated each family on the Bone Marrow Transplant Floor to a gift basket of useful hospital items upon arrival, a weekly shopping trip, special dinners and weekly breakfasts, as well as weekly massages for parents on the unit.

Hospital based donors and groups like Junior League and Radio Lollipop came through the clinic and hospital floors with toys, meals, gift cards, etc.  Each gift and visit boosted spirits and made something positive and special to that day and brightened it just a bit.

Social Workers had access to certain funds and benefits and would also help out at time with parking passes, meal vouchers, etc.

Friends and family members, and virtual friends would frequently send cards, and gifts. Each gift was a blessing and would keep our spirits up.  Hans was adopted by a “lego fairy” (a friend of mine from High School) who sent special shipments of legos to keep Hans’ fingers busy.

Children’s Neuroblastoma Cancer Foundation sponsored a Parent and Caregivers Conference for Neuroblastoma families.  We atteneded in 2007, and the CNCF sponsored our hotel stay.  When we went back in 2009, the CNCF sponsored our travel expenses so that we were able to attend.  Neuroblastoma experts from all over the country were present at this annual conference and informed families about research developments in effort to improve the outcomes for kids with this cancer.

Through Candlelighters, we were adopted by HP one Christmas, and Hans’ Christmas wishlist came through exponentially.

Legacy of Love - a Child Life Specialist came to visit Hans for home visits and they worked on special projects together.

There’s a Monkey in My Chair - When Hans was on homebound education, this group sent an adorable stuffed monkey to occupy his chair in Mrs. Parker’s class and represent him while he was at home.  It helped foster a home-school connection between Hans and his classmates, and it helped encourage Hans to visit class for special occasions when he could.

Sparrow Clubs The Woodlands High School ninth grade campus Sparrow Club adopted Hans as their Sparrow Child.  The school did various fundraisers to help support Hans in his fight against Neuroblastoma. The 9th graders sold wristbands and did a Walk-a-Thon.  They raised approximately $15,000 to use toward treatment-related expenses.  This program miraculously kicked in when Hans had first relapsed, after the Run for Hans funds had just been exhausted.  It felt miraculous that yet again, we did not have to be burdened with the financial impact of his treatment. It gave us incredible freedom to travel to seek second opinions and treatment elsewhere. Relapsed Neuroblastoma sometimes requires expertise and clinical trials far from home.

National Children’s Cancer Society covered many of the travel expenses for medically related travel.  They could cover plane tickets, bus fare, cab fare, even a small stipend for meals while traveling.  They could assist with hotel and Ronald McDonald House bills.

CAREFORCE Continental Airlines Frequent Flyer Miles donation program. CAREFORCE donated two plane tickets to a family traveling for medical treatment. They also consolidated donated miles through a miles drive for an indivual needed to travel for a life-threatening illness.  Our friend Mark was a Continental pilot, and his wife Michelle found about this program.  She and other friends organized Miles Drives and almost one million miles were donated to our family for Hans’ treatment.  Our CAREFORCE representative shared with me that he wasn’t aware of any other individual raising more miles in a Miles Drive.

Aetna and United Health Care had travel funds for traveling for cancer treatment to a hospital or facility more than 50 miles from home.  We used these funds for airfare, travel, lodging and meals while traveling away from home for Hans’ treatments.

Sunshine Kids - this was a Houston group that promoted fun events, parties, trips and good times.  This group gave families tickets to sporting events like hockey and soccer games, and even gave families spending money for the outings.  There were also tickets to The Houston Rodeo, and a fun weekend at Schlitterbahn - A water park in the hill country.

Periwinkle Foundation - is a group that put on arts programs, camps and events for cancer kids like Family Camp and The Ranch trip.  These trips were free to families, and they were a huge blessing.  We were in a situation where we could never plan anything.  We couldn’t count on the fact that Hans would be well on a particular day we made plans to make a short trip.  We never made a commitment to travel, not wanting to scrap it at the last minute, losing out on funds and also suffering just a bit of heartbreak from not being able to do something we’d look forward to.   Special trips like these were supported with medical staff and caring volunteers who were willing to work hard to make trips successful for medically fragile patients.

Make A Wish Foundation - Hans had been into volcanoes and had suggested we take a trip to see Arenal in Costa Rica.  The Make-A-Wish people weren’t certain we weren’t feeding him the idea, they had to interview him independently from us.  They finally approved the trip.  But, by that time, side effects related to Hans’ adrenal insufficiency made us feel like such a trip was risky.  We put in a request for a ”treehouse” Rainbow Play Structure.  Make-A-Wish had it installed in our backyard, and it created a special play space for Hans and Elle.  It had a swing, a slide and a clubhouse. It was right outside and private, so if he wasn’t feeling well, or if we were worried about low white blood counts and we couldn’t take him out in public, we had our own very special place to play. What a gift!

Corporate Angel Network -  We got one round/trip flight from Houston to Philadelphia on a corporate jet.  It was complete with door to door car service and an in-flight meal that included a filet mignon (which I don’t even eat)!  I enjoyed the luxury, and the fact that our bags were handled for me - from car to hotel.  But, Hans preferred the Continental Airlines flights he had gotten used to, with the seat back TV and his own remote control.

Ronald McDonald House - the Ronald McDonald house made a huge impact to us both on an inpatient basis at Texas Children’s and CHOP, but also on an outpatient basis at CHOP and CHLA.  RMH provided a wonderful, useful family room with a kitchen on the 9th floor of TCH.  RMH organized donors to provide meals regularly on the floor, and they baked and delivered cookies to patients in their rooms.  As an outpatient, when we were in Philadelphia, or LA, the RMH would provide a safe, warm room for us.  Rooms came at a bargain of just $15 donation per night.  The house miraculously provided a donated meal each night.  The Philadelphia RMH is the first in the country and different community groups organize to provide house meals each and every night of the year.  It’s amazing. A menu is posted, and families can design their weekly menu around the offerings.  RMH would sometimes be full.  In those events, the RMH social worker would almost always be able to  provide us with a voucher for a medical rate at a nearby hotel.  Hotel rates would be cut in half or less to make prices manageable for families.  RMH also had a toy stash for kids, tickets to special events such as hockey games and the zoo, and voucher for families for things like haircuts.

Family House in San Francisco was similar to RMH.  When Hans was in treatment at UCSF, family members could stay at Family House for a very low rate.  Family House provided a kitchen, a laundry room, shower and some staple pantry items and snacks.

 Family Funds through social workers at CHOP and CHLA got us through some situations we hadn’t anticipated. They helped with things like South West airlines passes for flights to Philly, they could help cover the excessive costs of medications that, on a very rare occasion, insurance wouldn’t cover.  These funds were available with immediacy in certain situations where the funds were needed quickly and there was some desperation involved.

The Protectors Foundation- is a small family nonprofit in Texas, honoring a father and a son who were both lost to separate cancers.  In 2011, our family was selected as the beneficiary of the proceeds of their annual golf tournament.  The funds were to be used for treatment related expenses. They provided us with a couple thousand dollars to use toward treatment related expenses.  Again, miraculously, the other funds from the Sparrow Clubs had been almost all used up when we were gifted with these funds.

Small Miracles Foundation - is a small family nonprofit in California designed to support families cover a child’s medically-related expenses.  In the Spring of 2012, Small Miracles picked up a handful of hospital bills, prescriptions, and they gave us 9 $50.00 gas cards to travel to and from the hospital and clinic. Again, miraculously, these funds became available when the funds from the Protectors Foundation had been spent.

There are numerous small programs through hospitals such as Literally Healing, a group that will delivered a book a day to children inpatient at CHLA, and Dog Therapy, who brought dogs onto the floor, to bring a little simple joy to sick kids who are not only missing their families and homes, but their beloved pets as well. Groups like the Lemondrop Foundation provided fun assistance to families and organized volunteer photo shoots for families with professional photographers.

Privately, we received support from friends and family in various ways as well throughout Hans' treatment.  We probably received other wonderful support from organizations that I don’t even recall off the top of my head.  It is staggering when you add it all up.  This list doesn’t even begin to account for all of the efforts and contributions that go into making modern Children’s Hospitals as wonderful as they are through organizations like Children's Miracle Network and Starlight Foundation and other groups.  Nor, does it recognize donors that contribute to the actual hospitals or the research of the clinical trials.  Groups like Alex’s Lemonade Stand and Saint Baldrick’s and others have given millions and millions over the last decade to fund research and improve outcomes for pediatric cancers.  All of these resources, combined, kept us in the black, they kept us on our feet and they kept Hans in the fight.  They allowed us to follow our gut instincts to the most relevant clinical trials and compassionate-use therapies we could find for our boy.  They bought Hans years of life.  These contributions kept us in our home and out of serious credit card debt and default.  They were miraculous in the way they appeared in perfect timing and order for us to pursue the best treatments for Hans.  Amazing!

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.

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!