Thank You Letter to the NCCS

Cousin KK somehow tricked Hans into smiling for this one:)

I was recently asked to share our experience with the National Children's Cancer Society. I am reposting here in the spirit of awareness and appreciation! It's so wonderful that organization like this exists out there for families. If you are a family interested thier support: Click Here

I am so thankful to the NCCS! People have no idea the cost of the impact of a Pediatric cancer on a regular little family. When Hans was first diagnosed, five and a half years ago, we had no idea we'd be fighting this hard for this long.
Emotionally, the impact is enormous. Hans has had two remissions that have lasted about a year in his fight against Stage IV multi-relapsed Neuroblastoma. In all of that other time, we have been actively, aggressively treating his diesease. In fact, even when he has been in remission, he has been in treatment.

What is the financial impact? I truly do not keep exact records. I haven't figured out how to go back to work since Hans was diagnosed, but I had always figured I'd work at least part time once my kids were school aged. I estimate the financial impact averages $20,000 per year. Hans has recieved treatment in 4 hospitals across the country: Texas Children's, Children's Hospital of Philadelphia, Children's Hospital of Los Angeles and University of California at San Francisco. Since 2009 or so, the NCCS has been helping us with airfare and travel expenses! What a blessing. Can you imagine what a relief it is to be able to book travel to save your boy and not have to worry about breaking the bank?? Even for a family that is relatively financially fortunate, there is just no way to prepare for this set of circumstances.

Neuroblastoma is a difficult cancer to treat. Sometimes a child's best treatment option may be located across the country. I cannot imagine having to cross those treatments off the list for financial purposes. I don't believe we would. We'd sooner go bankrupt.

When Hans was diagnosed in 2006, the community came out and threw a Run for Hans raising $20,000 for his medical care in 2006. The local high school later adopted him through the Sparrow Clubs program and raised another $20,000 for medical care in 2008/2009. Our friends ran an airline Miles Drive, and almost one million miles were donated for our family's medical travel! Currently, The NCCS provides help for us to travel to care. It truly takes a village and the support that we've recieved has been one of our (many) miracles. We try to give back! We've been involved in research fundraisers and are part of a group of families that have raised $100,000 for the Children's Neuroblastoma Cancer Foundation. It's a beautiful thing, how we've been sustained and supported and have been able to pay it forward all at the same time.

The way I see it, Hans and his cohorts are on the front lines of figuring this cancer out. They are enrolling on multiple clinical trials for researchers to "crack the code". Their medical care is not only trying to save these kids, it is an investment in making treatments safer and more effective for future waves of the diagnosed.

Thanks (NCCS) to your volunteers and supporters. You truly are helping to make life livable and possible in some of the most extreme circumstances a family can face. Below is a summary of Hans' treatments (thus far). Today Hans is actually doing quite well! We anticipate good news or very good news from his next set of scans. Hans is schooled through a homebound program but he goes onto campus for computer class.

From: www.hansjourney.blogspot.com
Treatment History Diagnosed Stage IV High Risk NB MycN Amp 10/25/06 at (TCH) 5 rounds of chemo therapy, Stem Cell Harvest 11/06, resection surgeries in 1/07 and 2/07 Stem Cell Transplant, Radiation Spring ’07 NED July 07 Accutane through Fall 07 and Winter 08 Relapsed 5/08 bony lesion in rt. Arm 2 rounds of Topotecan/Cytoxan with Zometa, Radation to site Lesion resolved Treated with 3 more rounds Topotecan/Cytoxan/Zometa two spots appeared, one on the dome of the liver and one on the left arm 3 Rounds Irinotecan/Temodor Clinical trial MIBG therapy w/ Vincristine and Irinotecan at (CHOP) 11/09 NED Jan 09! 13 rounds of ABT751 at CHOP 12/10 relapse - sm bony lesion on skull Clinical Trial MLN8237 (Millennium) at CHOP for 25 rounds. 7/11 family moved to California, progression of disease in the skull, and bony lesion on the hip and possibly one vertebrae 8/11 radiation to skull (2 soft tissue and bony lesions) and 3 rounds of Irinotecan/Temodor/Zometa soft tissue lesions responded, bony lesions persisted treated at(CHLA) 10/11 Progression of disease to two Lymph Nodes in neck ICE Ifosfomide, Carboplatin, Etoposide for one full dose, subsequent 66% dosing for two rounds. Possible progression in the chest (later not supported) moved us to two additional rounds of radiotherapy MIBG with the Iodine 131 radioactive isotope in January and February of 2012 at UCSF University of California at San Francisco. Scans in April '12 will determine the next course of therapy.