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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.

Saturday, November 14, 2015

Pretty cool week of being Hans' mom

Capitol Building at night - under construction!

Over the past week I've been involved in two separate and incredible experiences as a Neuroblastoma mom. Unfortunately, confidentiality restrictions keep me from going into much detail, but each experience provides me with hope for our children and for the future of Neuroblastoma research and treatment.

A few months ago I was nominated to be a 'consumer reviewer' panel member for a national grant funding review committee.  I represented the Neuroblastoma parent perspective on a panel of NB researchers and scientists.  I challenged myself to carefully read and review each of the grant applications and provide feedback according to guidelines provided. The research proposals were varied and exciting.   The review took place last week over a long conference call through which I was reunited with one of Hans' most beloved doctors.  I took this role as seriously as I could.  I hope I was able to give adequate service to Hans and his compadres.   I curiously await the final funding decisions.

I also had the unique opportunity to travel to DC to participate in a pediatric cancer related focus group.  Again, confidentiality restrictions keep me from being able to go into much detail, but I can share that parents were brought together by a third party with the intent of doing better for our children.  It's always empowering when you bring families together with a single focus.  I believe that as a group our objectives were met! Again, it will be exciting to pay attention to the outcome of group.

For fun, my friend Sally was able to tag along with me and we squeezed in some sightseeing and great dining.  It was a treat to have an unexpected bonus girls trip to the nation's capitol.

I am humbled and honored to have been able to participate in each of these projects.  When such opportunities come along, I do the best I am able to serve and honor these precious children of ours. 

Friday, October 16, 2015

The Camino de Santiago

I haven't posted about it here yet somehow but for the past two summers Kevin and Elle and I have hiked the Camino de Santiago - a 500 mile pilgrimage, also known as The Way of Saint James, across northern Spain.  Some say it has a special energy as it follows directly under the Milky Way.  I can certainly say I felt Hans presence there more keenly than anywhere else.  I will have to write more about that experience!

But, I thought I'd share that I typed up a general tip book encouraging others to get out and hike the Camino.  I self-published it on Amazon.com this week!  It was an exciting process, but definitely a learning curve. I thought I'd share the link here:

All You Really Need to Know to Hike the Camino de Santiago:  Tips to Help you Plan For, Prepare For, and Hike Your First Camino  by Lara Cady Weberling  It's available on Amazon Kindle (there is a Kindle app if you don't own a Kindle...)

Hans was with us every step of The Way.

Thursday, October 01, 2015

Pediatric Cancer Awareness Month

So, I'm a day late and a dollar short on this one, but I figure I should go ahead and post anyway.  Cancer Support Community blog reached out to me and asked if I would write a guest blog post in honor of pediatric cancer awareness month.  I was happy to! They ran a final version with two parents perspective just a couple of days ago, so I wanted to wait and let them get the post up first.  You can see the post here: Cancer Support Community Blog It was nice to be asked to share our experience!  I am posting my original version below:

Pediatric Cancer Awareness Month

You may already be aware that September is Pediatric Cancer Awareness Month.  I couldn’t be more aware, despite the fact that I’d much rather be blissfully unaware.  September has been everything awful about pediatric cancer to our family. Our son Hans' first symptom popped up in September of 2006.  He was just three years old when he woke up one morning with a small bruise on his left testicle.  It would take a full month for this and other symptoms to lead to his fateful diagnosis:  Stage IV, High Risk Neuroblastoma.
Over the course of his six-year battle with Neuroblastoma, each September was a difficult time.  Hans never got to have the typical "Back to School" experience.   It was a heart breaking balancing act of deciding whether to start school or hold back, whether to bring a teacher to the house or send him into a classroom.  Theses choices were made challenging due to the nature of Hans’ aggressive cancer and the multiple treatment methods and clinical trials we had to employ to combat it, along with their unpredictable and sometimes dangerous side effects.  Like many kids battling cancer, Hans never complained about his lot or the concessions he had to make. But for me, September was a showcase for the difficulties children with pediatric cancers face.  I grieved for Hans and his struggles each September, as well as each of his young friends who had lost their battles and who wouldn't be going back to the classroom - so many empty spots on the bus.  
Ultimately, after a six-year battle, we would lose our Hans to his cancer on September 21, 2012 at the age of nine.         
Before Hans was diagnosed, aside from a few St. Jude’s ads and billboards, we knew little about pediatric cancer.  An awareness month is an excellent vehicle for sharing some of the most important facts about pediatric cancers.
·      Pediatric cancers can happen to any child, as if out of the blue. Little is know about the causes of most pediatric cancers and they tend not to be hereditary. Unlike with adult cancers, there are few tests for screening and early detection. Cancer.org
·      43 children are diagnosed with cancer each day and approximately 15,700 kids will be diagnosed in the U.S. each year.  CureSearch
·      Pediatric cancers are the number one disease killers of our children.  More U.S. children die of pediatric cancer than of any other disease/illness. St. Baldrick’s
·      Children’s cancers are far less prevalent than adult cancers and so they receive much less in research funding. Just 4% of the NIH cancer budget and just 1.4% of the American Cancer Society’s budget goes toward pediatric cancer research.  People Against Childhood Cancer PAC2
Facts and figures aside, a pediatric cancer diagnosis can be brutally devastating, not just for the child, but for the entire family.  When your child is diagnosed, your relationship with your community of origin is forever altered.  Friends and families members may do their best to support you, but you will undoubtedly be challenged by dark feelings of fear and isolation.
 When your child is in treatment for a pediatric cancer, your life becomes unpredictable and out of control.  Symptoms like pain and fever can have you racing off to the clinic or ER at all hours of the day and night. Your singular priority becomes the basic care and survival of your child.  And as a parent in charge of his/her care you have to use every tool in your personal tool kit to ensure your child’s best possible outcome.  You will be hyper-vigilante and on call 24 hours a day 7 days a week.
         The only way to get through it is with a lot of help and support. It can be the most humbling part of being human to ask someone for something that you think should be obvious. But you have to be sure to ask your friends and family for what you need. Tell a friend, “we need you to come down and see us at the hospital, we start to feel all alone in here.” 

         If at all possible, connect with other families facing the same or similar diagnoses and make connections. You can build a profound sense of community with families “in the same boat” as you, and it will make you feel less isolated.  As Anne Lamott writes in Stitches,  [we humans] are “social tribal, musical animals, walking percussion instruments.”  We function better when we feel like part of a group. 
         Together, we can join forces and turn awareness in action. After absorbing the impact of initial diagnosis and getting our bearings, many families find a little bit of solace and meaning in banding together and fighting back.  We can work together and enlist the support of others that love us, to promote awareness, which spurs donations and funding for research and ultimately cures. 

          As for me, as difficult as it sometimes is, I tend to say “Yes” to almost every opportunity I have to honor my beautiful son and his valiant fight again Neuroblastoma.  Throughout the year, but most profoundly, each September it is with great pride that I remember Hans’ bravery, his great love, his beauty, and the zen-like state he could tap into when he needed to get through difficult procedures or bouts of pain.  I am moved by the resilience of children fighting pediatric cancers, and of the ability of their families to endure and persevere.  And I know that there is great power in what we can do when we come together.

Monday, September 21, 2015

Three years ago today

Today marks three years since we had Hans here physically with us.  I can't stop thinking about  about his beauty, his bravery, his great love, his humor, and his zen-like ability to get through really difficult stuff.  He was amazing.  Oh, what we would have done to keep him, but, somehow, his work here was done...

We marked this anniversary in an amazing way.  We joined forces with nine other pedi cancer families through our friends Sandra and Jim and their Sophia's Buddies triathlon team. Truly, Sandra did a perfect job of honoring each of the nine children while at the same time bringing us all together.  As a group, 88 of us came together to participate in the Nautica Malibu Triathlon.  We had four members of our Team Hans this year.  One relay with our neighbor Don swimming, Kevin biking and Elle running.  And I did the individual event - all three (half mile swim in the open ocean, 19 mile bike ride along Highway 1 and a 4 mile run.)  It was an incredible day!  Together we raised over $53,000 for pedi cancer research at CHLA. Thanks everyone for your support!

For me, the swim was difficult and a little uncomfortable.  I felt more like I was in a washing machine than I was really racing anyone.  The bike was awesome (I was in my wheelhouse on my road bike), and the run was hot and it seemed like everyone was moving just as slowly as I was.  All through the race and all through the training building up to it, I just kept thinking - this is nothing.  This is nothing compared to what Hans and all the other children with life-threatning illnesses and injuries have to do to survive on a day-in day-out basis.

I am sure that Hans would be proud to be featured on Sandra's pal Debbie Foreman's Lamborghini #Batventador.  Debbie is dedicated to raising awareness and funds for pediatric cancer research and this year she wrapped her car to support Sophia's Buddies!

Meanwhile, back in The Woodlands, Carmen and pals organized another Team Hans pathway pick up on Sunday morning. Thanks to everyone for your support all around.  Here is the crew pitching in.  We love to feel the love.  It's good to do a little good.  Thank you all who were such good friends to Hans.  As I have said before, Hans' journey was fraught with many challenges, and yet charmed by many miracles.

Saturday, August 22, 2015

Swim, Bike, Run - Anything for Hans!

As a family, we choose a research fundraiser to support each year in Hans' honor.  This September, we will mark the third year without him here with us, and we will recognize Pediatric Cancer Awareness Month and  support  Children's Hospital Los Angeles Pediatric Cancer Research by participating in the Nautical Malibu Triathlon on 9/20/15.  We lost him on 9/21/12, after a six year battle against neuroblastoma.  

Hans' story was featured by the Nautical Malibu Triathlon event sponsors this week, please read below.

You can click on any one of these links to support Team Hans.

Lara's Weberling's Page (Lara is completing the whole thing: swim 1/2 mile open water swim at Mailbu, bike 18 mile ride along highway 1, and  run 4 mile loop along highway 1) 

Kevin Weberling (biking in a relay team along with our neighbor Don)

Elle Weberling (running in a relay team along with our neighbor Don)

Don Nelson - (swimming in a relay team along with Kevin and Elle)

Nautica Malibu Triathlon - Fundraising
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Anything for Hans

As parents, we’d do anything for our children. Nine
years ago, in 2006, we found out our precious and
mischievous three-year-old was fighting a deadly
childhood cancer, Stage IV High Risk


Kevin and I would have done anything to change 

places with him and take on that battle ourselves 
so he didn’t have to.

The choice was not ours to make, and we had to stand by and watch our beautiful 

son wage a battle against one of modern medicine’s remaining enigmas.

We did everything we knew to do for him, circled the wagons, hit the books, and 

gratefully channeled the love and support that poured out for him into the most 
hopeful treatments we could find.
Neuroblastoma is a tricky cancer to treat, because it has often advanced to Stage IV 
and metastasized before it is diagnosed. It can run a very different course in each 
child. Hans’  Neuroblastoma would become a zombie; attacking our boy in a slow, relentless pursuit. And Hans would fight it like a tiny gladiator for six long years.

In that time frame, Hans received treatments across the country from four different children’s hospitals, he enrolled in multiple clinical trials, he never spent a day off 

treatment since his diagnosis, and due to the harshness of his treatments and their
 side effects, he never spent a month straight in a classroom.
It was moving and powerful to see Hans get through what he had to - to put everything 
he had into fighting for his life. It was beautiful to see the childlike way he appreciated 
the life that he fought so hard to live.

He just wanted to get his treatments done so he could be at home, with his loving 

family and his attentive pets, with his toys and projects and comforts and favorite 
games and movies and shows. He just wanted to swim and play and ride his bike. 
He just wanted to be surrounded by his favorite foods and graze all day long. He 
just wanted to love his family and his friends and animals and get just absolutely the
 most of it that he could. It was amazing and inspiring to witness what he had to go 
through to live that little boy’s life. The gift of Hans’ love was pure and unconditional. 
It was a gift that will last a lifetime and beyond. It will last forever.
Since he was diagnosed we’d have done anything. If a cure were to be found at the 
bottom of the ocean or the top of Mount Everest, we would have figured out how to 
get there. Since we lost Hans we’d do anything to honor his life. We’ve joined forces 
with other parents in a number of ways to bring awareness, community and education around this disease.
We’ve served on advisory councils, boards and committees to help give a voice for the child’s experience in hospitals and clinical trials. Together with Hans’ friends and family, and other children battling Neuroblastoma, we’ve helped raise hundreds of thousands 
of dollars in donations for Neuroblastoma research through multiple fundraising efforts 
over the past nine years.
When Sophia’s mom, Sandra, asked us if we would like to join Sophia’s Buddies and 
put in a Team Hans for the CHLA Malibu Nautica Triathlon, the answer was always 
Yes. Anything for Hans. This year, the triathlon will take place just one day before the 
third anniversary of us losing our beloved boy on September 21, 2012. Kevin and I, 
our sixteen year old daughter Elle, and our neighbor Don (whose son Keir beat 
Leukemia at CHLA about 15 years ago) will swim, bike and run in Hans’ honor on 
Sept. 20th. I’m going to the do the whole event (at my pace) and Don, Kevin and Elle
 are going to do the Swim, Bike, Run relay. We wouldn’t be anywhere else. Funds 
raised will go to CHLA pediatric cancer research so that in the future, other children 
might not have to fight quite so hard.

Thank you so much for SWIMMING, BIKING and RUNNING
 for pediatric cancer research!!

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.