Brandon Michael Koontz

April 30, 1999 - October 3, 2009
Forever in our hearts...


Welcome to my web page!

My birthday is April 30, 1999 and I am an only child. My mom is Wendy and my dad is Michael. I have a beagle pup named Jake, four donkeys - Stacie, Little Joe, Louie & Macy, a blue betta fish named Sean, a red betta fish named Angie, five goldfish and two parakeets, Shareia & Krick. I love animals, sports, videogames and fishing! One of my favorite things to do is listen to my iPod and download my favorite songs. I like school and I like hanging out with my friends.

Please continue to check updates and look at new pictures.
Don't forget to post a message in my guestbook!
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On Thanksgiving 2004, Brandon was diagnosed with Stage IV Neuroblastoma, a cancer of the sympathetic nervous system. Stage IV meaning advanced - Brandon's cancer had spread from the main tumor in his abdomen to his bone marrow, a spot on his liver and bone involvement in his legs, vertebrae, and sternum.

Brandon was treated at Wake Forest University Medical Center (Brenner's Children's Hospital) on the N-7 protocol which included 6 courses of high-dose chemotherapy and surgery to remove the primary tumor. After these standard treatments, Brandon's bone marrow still showed positive for Neuroblastoma. He then began 4 courses of new chemotherapy. After 2 courses, his disease had progressed.

After much research and prayer, we enrolled Brandon in an experimental treatment at the Children's Hospital of Philadelphia under the care of Dr. John Maris and Dr. Yael Mosse, neuroblastoma specialists. In August 2005, Brandon endured the I-131 MIBG treatment. He then proceeded to chemotherapy conditioning and stem cell transplant. Brandon underwent traditional radiation treatments in Philadelphia in November 2005. He then began a 6 month course of cisretinoic acid treatment (Accutane.)

On July 12, 2006 Brandon was finally declared NED (no evidence of disease.) PRAISE GOD!! Brandon completed his second 6 month course of cisretinoic acid treatment (Accutane) on December 15, 2006. Currently he is completely off treatment and enjoying his precious life! Tests done at Children's Hospital of Philadelphia in February 2007 and June 2007 showed no signs of disease! Continued NED status! Such a wonderful blessing!

Life was changed once again in October 2007 when Brandon's four-month checkup at CHOP showed his disease was back and he now is battling relapsed neuroblastoma. The treatment plan started with a chemotherapy combination called Modified ICE. In December 2007, another stem cell collection took place at CHOP and they collected 6 million cells to have in reserve so he could be eligible for more treatment options in the future. Brandon had another High Dose MIBG Treatment the week following Christmas 2007. In Februray 2008, tests showed he had a response to these treatments, but the disease remained. The brakes had been put on the disease and there was some improvement. Stable disease is good in the battle against relapsed NB. His bone marrow was tired from all his body had been through, so he received some of his stem cells back in February. On March 26, 2008, Brandon began a new drug called ABT-751 to help keep his disease stable. On October 26, 2008, Brandon started having leg pain. An unscheduled trip to Philadelphia and tests showed on October 30, 2008 that the NB had progressed. With almost four years into this battle, Brandon was admitted quickly for an MIBG treatment for pain relief and to try to put the brakes on the disease. On November 18, 2008, Brandon received a stem cell infusion to help recover from the MIBG treatment. He was then given CEP-701 on compassionate use to try to keep the disease stable since he had a good response from the MIBG treatment in October. He began the CEP on Christmas Eve, December 24, 2008. A visit to CHOP in January 2009 showed the disease to be stable again. In mid-February 2009, Brandon's liver enzymes began to rise and his platelets began to drop. A quick urine test on February 26, 2009, showed the hormone levels to be abnormal. Brandon had an MIBG scan at Brenner's which showed the disease had progressed again in the bone marrow. He was admitted at CHOP on March 10, 2009, for his fourth MIBG treatment. He will receive his last bag of stem cells the week of March 24, 2009 to help his marrow recover from this treatment.Brandon began monthly MIBG treatments to keep the disease stable. In June 2009, the disease was no longer responding to the treatments and had spread again. Brandon’s bone marrow was full of neuroblastoma. We returned home from Philadelphia for the final time. Brandon began a daily low dose chemo regimen at home for about three and a half months.

He began having bone pain from the marrow disease in late September. Brandon fought a tough battle and on October 3, 2009 he was free from Neuroblastoma and safe in the arms of Jesus.

What a battle for such a small child! He is an inspiration - our brave little hero. Thank you to all our family and friends for your love and support.
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**Yesterday is history. Tomorrow is a mystery.**
**Today is a gift - that's why we call it the PRESENT!**
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Journal

Monday, October 3, 2011 1:20 PM CDT

Two years ago tonight I lost the greatest love of my life - my son, Brandon. I know he is safe in heaven with Jesus and that is comforting beyond words. But the day to day - minute by minute - living here, without him is heartbreaking.

I love that boy with all my heart and soul and today I am reminded of how broken my heart and my world is without him.

Until we meet again my sweet, Brandon...

Mom

Hospital Information:

Children's Hospital of Philadelphia
Brenner Children's Hospital - WFUBMC

Home: PO Box 504 Cooleemee, NC 27014

Links:

E-mail Author: brandon_boogie@yahoo.com

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