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, video 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.

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 G 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 G 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 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.

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

Sunday, July 5, 2009 6:04 PM CDT

Wow, I have so much to post about!!!

Let me start with the medical stuff. Brandon feels great. Brandon even looks great. His face is full, his color is good. We've been getting his counts done every two days.

WED 7/1: WBC 0.6 HGB 10.6 PLT 9 (He received a platelet transfusion)

FRI 7/3: WBC 1.8 HGB 11.3 PLT 32 (I'll elaborate later...)

TODAY: WBC 1.3 HGB 10.6 PLT 12 (He received a platelet transfusion)


On Friday, when the counts were up, we almost fainted in the lab! Brandon was so happy. He was on cloud 9. I was so happy, but still nervous about celebrating. I was afraid they were wrong! He has needed platelets every two days the past week, so it was hard to accept. But, it looks right based on today's numbers. He went 4 days again between platelet transfusions and it will be a week tomorrow since he got red blood. I consider this one of our little miracles. I never would have imagined his counts to do this. I think the prayers must be working! So, keep them going! We go back on Tuesday to check the numbers again. His chemistries (can show kidney and liver function) were normal today. Another blessing!

He has taken his new medicine combo every day for 8 days now. He has only been sick 2 days from the meds. He is doing great with it!

Now to all the fun stuff we've been doing. The Lodge was a blast! Ashley made it down 2 of the 4 waterslides. She refused to do the Howlin' Tornado with us, so just me, Brandon and Michael did it. I will never do that again. Put that on the top of the list with the Mt. Everest ride at Walt Disney World... Brandon was almost in tears, I believe I stopped breathing briefly and Michael, well, he kept the "Joker" smile on his face through the whole ride. So, either he was faking his enjoyment of the ride or he really, really loved it, or his face was frozen that way when we dropped down the tube. Jaime, Brandi and Morgan came down on Tuesday for a surprise for Brandi's birthday. Brandon was so happy to see them! He ditched Michael and I to hang out with the younger ones. They had so much fun. We were very happy they were there. We rode some waterslides with them (nope, not the howlin' tornado...), played mini-golf, went to the arcade, played MagiQuest, ate dinner and shared birthday cake. We hated to leave them on Wednesday! We could tell Brandon's platelets were getting low, he started bruising on his legs while playing in the obstacle course in the pool. He was something else on that thing! He made it across the pool in a record 14 seconds! (He had Michael and I time him.) Ashley made it to the first of 6 floating lily pads, Morgan made it all the way across (sitting down), and Brandi made it to the 2nd, almost 3rd one. We decided from the bruises that we should head home earlier on Wednesday than we had planned so we could check his counts (glad we did, he needed platelets!) We stopped at the Nascar Speedpark at Concord Mills Mall. He raced a couple of races against Michael. They had a great time. Then we headed over to the Bass Pro Shop to let him pick up a few things for fishing.

On Thursday, we left out about 6:30 am with Ashley, Papaw, Uncle Wayne and Papaw's friend. We went fishing out on High Rock Lake (Rowan Co. side.) Around 9:00 we found a little cove and anchored the boat. It was our perfect spot of the day. Papaw's friend caught one catfish, I caught one catfish, Wayne didn't catch anything, Michael didn't catch anything - unless you count the "rock" bass that according to Michael would have been the biggest fish ever.....had it not broken his line when the hook was caught on it..... But the fisherman of the day was Brandon! He caught 2 brim and a baby striped bass. Ashley accidentally caught the biggest fish of the day. Her fishing line and fishing pole messed up so Wayne was trying to help her and he told her to pull her line in. She pulled it in with her hands and screamed because on the end of it was a huge catfish!! The shade started to disappear on the lake around 10:30 so the fish stopped biting. Brandon called it a day around 11:00. It was so relaxing to be out on the lake in the boat.

Brandon's friend came over that afternoon and they played outside with the golf cart for awhile. Brandon spent a little time at Nana and Papaw's later in the evening.

We spent Friday morning running errands to get ready for the 4th of July. Michael did the yardwork. We decorated the trailer and the lawnmower to put Brandon in the Lawnmower parade on Saturday. It was fun putting the flags and the stars on the trailer and making posters with Brandon. Friday afternoon we went to Keith and Robyn's for dinner. The kids played with sparklers and we enjoyed seeing everyone.

Saturday was a blast! Michael and Brandon met Keith and Ian and Rylan at 9:15 for the parade. Brandon had candy to throw out and the boys helped him. They looked so cute in the parade! We came home and tried to swim in the afternoon, but it was a little chilly. Who would have thought the water would be so cold in July! We grilled hamburgers and hot dogs. We had a house full of family and friends and it was wonderful. Brandon bought fireworks again for this year's 4th. We sat out in the backyard and enjoyed his show.

I guess I need to go, he wants to watch a movie (courtesy of Ron & Dawn.) I've got popcorn to make!

We love all the messages in the guestbook. Thank you so much for your prayers!

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

Site Sponsored by:


Duke Pediatric Bone Marrow and Stem Cell Transplant Program

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.