Brandon Michael Koontz

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, three donkeys - Stacie, Little Joe & Lou, a blue betta fish named Kingston, a red betta fish named Rojo, three goldfish - Drake, Josh & Megan, and two parakeets, Shareia & Krick. I love animals, sports, videogames and superheroes! 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.

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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, 2007, 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.

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. He isn't fighting this alone. God is with him everyday!
Keep Brandon in your prayers!
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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

Tuesday, November 18, 2008 5:48 PM CST

Okay, so we did see snow today. Just some flurries, but still it was snow. Brandon and I ran over to the window of the restaurant we were eating in when we saw the white stuff just to get a closer look!

Today went very well. Brandon received his stem cells around 12:30. He was pre-medicated with benadryl, tylenol, zofran and ativan. All these medicines to prevent a reaction and nausea. He didn't get sick at all! He slept for awhile. They went ahead and gave him a platelet transfusion after the stem cell infusion to make sure he was safe for the travel home. His counts were WBC 0.3 HGB 10.3 PLT 24. The stem cells will take some time to engraft, the earliest they've seen is two weeks. Brandon takes longer than that.

We spent about an hour and a half talking with Dr. Mosse. She is happy that the leg pain is gone, she is hopeful that this is a sign that the MIBG treatment did something to knock back the disease. Brandon gave a urine sample to check the catecholamines levels. This is an indicator for NB. We will compare this test with the one he did a couple of weeks ago before the MIBG treatment. We hope the levels are normal again, which would also be a good sign. The plan now is to wait another 3 1/2 weeks and come back to start on the next option. They like to give the MIBG six weeks to work before adding another medicine on board. We are happy to hear that there are "options." His counts will play an important role in the decision making process for the next step. Clinical trials are specific on requirements with platelet levels in order to be on them. So we hope and pray that the stem cells find room to grow and they grow quickly so he can be eligible for other medicines. More good news was when she told us Brandon had enough stem cells for another infusion which means he can have another MIBG treatment in the future if he needs it.

We also found out some results on the ALK gene mutation test she was working on. Brandon was negative for the mutation on one of the tests. We had hoped he would be positive so he could use the new drug. But Dr. Mosse said she has one more thing to check for. If this is positive, he may still have the opportunity to use the new drug as I mentioned before. She said it would take another week to get those results.

He is feeling good today. He's been laughing and playing. He is eating better. He ate spaghetti last night and hamburger today. He is worried about his weight. He knows he's lost weight, he not only hears it when he gets weighed at the hospital, but he sees it in the mirror. We are working on it - he's trying to eat something small every two hours to try to get his calorie intake up.

We met Sarah from Michigan. She also comes to CHOP for neuroblastoma treatment. She is Brandon's age and she is currently on ABT. They played together last night and Michael and I talked with her mom. It was nice to meet another little NB warrior!

The fire alarm went off here at the RMH a few hours ago. So we had to bundle up, grab a few things and run outside. And it is cold outside!!! The fire department showed up and checked things out. They found it was a false alarm, something wrong with the fire alarm. So we are nice and warm in our room now. Brandon is playing with his toys and Michael is reading (from the study bible you let him borrow, Eric.)

We will be heading home tomorrow. We will go to Brenners on Friday for counts and possibly another neulasta shot if the white count hasn't turned.

Looking forward to being home again!
Wendy

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