Hannah's School Picture 2010

Hannah Huckfeldt

First post: Nov 11, 2007 Latest post: Feb 28, 2016
Hannah  was diagnosed October 2006 with Clear Cell Sarcoma of the Kidney (CCSK), a rare childhood cancer, that relapsed to the brain in November 2007.  Here is where we have chronicled our war, until Hannah joined Jesus in Heaven as a beautiful Angel on April 23, 2011.  She was 5 1/2 - FAR TOO YOUNG!!!!  Hannah will always be in our hearts, and remembered for her unbelievable courage.  Her amazing spirit and smile captured everyone she encountered!  We miss her dearly!!!!

For information on donations see:  www.hannahhuckfeldt.com (http://www.hannahhuckfeldt.com/)

Hannah was born 8/2/05 in Scottsdale, AZ to JC & Shelly Huckfeldt. She is a normal three year old living in Chandler, AZ. She loves her two kitties Winston & Pepe. She enjoys dance class, Pre-School at Care Bear, and all things Disney!

Hannah was diagnosed 10/06 with Stage 2 Clear Cell Sarcoma of the Kidney (CCSK). This was discovered after a random visit to the pediatrician for diaper rash - her Doctor did not remember her distended abdomen from the previous months routine 1 year well check - she sent us for a ultrasound, which showed a large mass.  She had a radical nephrectomy (complete removal) of the right kidney on 9/16/06 by Dr. Lacey @ Phoenix Children's Hospital (PCH). Initial pathology suggested standard Wilms either stage 1 or 2, which is more normal with around 400 cases per year in the United States . CCSK is a subgroup of Wilm's that makes up only around 15-20/year in the United States . The tumor was retracted whole with no nodal involvement. Both bone scan and brain scan showed no disease after retraction. Hannah proceeded to immediately undergo the recommend/protocol 25 weeks of Chemo (9 cycles) and radiation (6 times) consisting vincristine, doxorubicin, cyclophosphamide, and etoposide. We were told that this regimen presented a 5 year cure/survival rate somewhere between 82-89% for Stage 2 CCSK. Her mid CT in 12/06, was clean. She finished treatment on 4/4/07 and had her final CT, bone & MRI scans on 5/1/07- all were clean. We were officially in Remission!!!!!

She had a CT 8/07 that was clean.  Hannah had continued to thrive during this time gaining back weight lost during treatment, growing taller and reaching all developmental milestones for her age.  

On 11/9/07 she underwent the recommended sixth month CT, Bone & MRI. The CT & Bone scans were clean - the MRI showed 2 main lesions, that her Oncologist (Dr. Watanabe of PCH) believed to be metastastic disease. Because there were no other areas to confirm, she underwent brain tumor resection 11/19 at PCH on the frontal lobe lesion (not the cerebellum lesion).  Pathology confirmed 11/26 that the CCSK had indeed spread to the brain.  We began Chemotherapy (ICE) treatment on 12/4. After 2 rounds of ICE therapy we headed to UNMC in Omaha, NE to have her Stem Cells SUCCESSFULLY collected on 2/5/08 and stored (1 day we got 15.1M - needed 5M - enough for 3 transplants if necessary). We proceeded with 2 more additional rounds of ICE therapy and finished on 3/14/08. We then headed to MD Anderson in Houston, TX under the guidance of Dr. David Kornguth for radiation therapy beginning 4/9/08 through 5/2, receiving 10 days of total brain & 7 days of IMRT Boost to the tumor.
On 6/3/08 - doctors felt the tumors were in a dead or dying state and we were done. However, subsequent scans still showed contrast activity in August (nothing new - still the same lesions). Her CT scan of the body was clean as well at this time. So, under the guidance of MD Anderson Dr. Kornguth and Neural Surgeon Dr. Weinberg underwent Stereotactic Radio Surgery on 9/25/08 to "zap this for good".  Scans on 10/25 confirmed this rare procedure performed on a child appeared to be a success.  The lesions displayed necrotic type tissue (dead) that will eventually over time develop to scar tissue.

We are now in a follow-up phase, and will continue to scan regularly. We continue to be open to ANYTHING - no matter where in the world this may take us to find the cure for Hannah!!!!!!!


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