Five Year Campaign

Dear Friends and Family,

I am writing this note to mark Hans’ 5 year anniversary of his diagnosis: Stage IV High-Risk Neuroblastoma, 10/25/2011. In these 1,825 days Hans has had HUGE obstacles to surmount. Hans has not had one single day “off treatment”. It is quite remarkable that he has survived his disease and his treatments to this point. When Hans first relapsed in May of 2008, we were loosely told to expect about 8 more months with our boy. “Take a lot of pictures and go to Disneyworld.”

Hans didn’t give up and neither will we. We have kept him afloat by seeking out innovative doctors and novel therapies. Hans has endured 58 rounds of chemotherapy, 2 major resection surgeries, a stem cell transplant, three separate courses of directed radiation, experimental radiation therapy, he has participated in two clinical trials, and hopes to be eligible for another soon. Hans has suffered debilitating side effects including the loss of both adrenal glands and delayed bone growth. He has not been able to play on a soccer team or spend a solid month in a classroom since his diagnosis. As I type this, he has been in the midst of a rough progression of disease since summer. It is now moving through his lymph nodes and we are throwing big guns chemo at it in hopes of beating it down once again.

And yet, these past five years have brought love and joy into our hearts many times over. I’m sure we’ve been showered with 10,000 hugs and kisses from our boy in these years. We’ve found joy in loving each other, our family, friends and our pets in the best way we can, every day. We live in the hope that Hans will get to see the day he can be cured from his NB. As you know, that cure is yet to be discovered, research alone will unlock that mystery.

Since our son’s fateful diagnosis we’ve seen our friends, family and community come together with two incredible tasks. As a family, we were supported by the Run for Hans, Sparrows for Hans, and a near 1 million-mile airline miles drive. We’ve always paid it forward and have tried to outmatch the support we have received in contributions for research and education. While in Houston, we worked hard with a group of NB parents and our good friends to establish bake sales, lanyard sales and yard sales which have brought in more than $100,000 for the Children’s Neuroblastoma Cancer Foundation to date. In this economy research funding is dwindling from the federal government and corporate donors. Increasingly, it is parent-led efforts that fund life-saving research. We are tasked with asking you and motivating you to donate.

I feel we are on the cusp of great change in the treatment of NB. I believe an exciting zeitgeist is building as researchers around the country and the world attack the problem of this devastating disease from every conceivable angle. Doctors in New York are developing nanotechnology to target NB therapies, doctors in Michigan are making personalized medicine headlines by targeting therapies specific to the genetic makeup of each child’s NB tumor. A child with NB was the first human child to receive an Oncolytic virus in hopes of obliterating this disease. Doctors in Boston are rolling out a legitimate attempt at a vaccine to prevent Neuroblastoma relapse. We are making new ground as immunotherapy has become the standard of care not only in frontline therapy, but a brand new trial is opening in Philly this month for children navigating the landscape of relapse as well. Our oncologist in LA is working on opening more immunotherapy trials for relapsed kiddos soon. With all these improvements coming from different sources, I can feel that a cure could be at our fingertips.

Please honor Hans and his valiant fight against Neuroblastoma by making a donation to the CNCF today, copy/paste this link to Hans' CNCF Gifts of Hope Fundraising Site. http://www.cncfparks.org/help-a-child/park/21/ Any contribution is wonderful, even $5. It just feels good to see the names of his supporters go up on his site. It’s evidence that his story has moved you and that so many people still care. Thank you for making our dream (having a boy that simply gets to grow up) a reality. Your donation is tax deductible. Feel free to share this letter with others who have been moved by Hans’ journey.

With great Love and Hope,
Lara, Kevin, Elle and Hans Weberling