Brandon Loose

Brandon Adam Loose
The Greatest Neuroblastoma Warrior earned his Angel wings after a long, long fight with the ugly beast.
June 13, 1999 - October 6, 2008

Journal

Wednesday, March 10, 2010 8:33 PM CST

This is gonna be read at the Hempfield MiniTHON Saturday March 20th Thank you Hempfield for keeping Brandon's memory alive.



Brandon was the average 4 year old boy, loved playing sports didn’t matter which, until February of 2004. He started with leg pain so bad it would wake him up at night. We took him to several doctors in our area, they all said the same thing he needs a psychiatrist. After hearing this so many times and knowing our son we decided to take him to Hershey Medical Center. Cindy Riker was the first person who actually listened to me and heard me. I will never forget her name. She made Brandon an appointment with Dr. Groh on April 8th. Dr. Groh ran many tests and came to us and said to “hope he has leukemia” our hearts stopped. He also made an appointment with the oncology department for the next day. Brandon had the first of many bone marrow biopsies that day. The test confirmed Brandon did not have leukemia, it felt like a weight was lifted from our shoulders, then they dropped it even harder. They told us Brandon has Neuroblastoma. Now I understand why we were to hope for leukemia, leukemia has a 90 percent cure rate, Brandon had neuroblastoma which only had a 40 percent survival rate. We had a battery of tests to confirm this diagnosis. April 10th, 2004 it was confirmed Brandon had Stage 4 high risk Neuroblastoma. There are only 4 stages of Neuroblastoma, we were at the worst stage. He had tumors throughout his body and his bone marrow was 95 percent full with disease. We started chemotherapy immediately.
During our first day in the hospital, many people from the hospital came to see us, the one I remember the most was Greg. He is a social worker for Hershey Medical Center and the Four Diamonds Fund. Greg was like a whirlwind, he gave me papers to read, to sign, to fill out I think he told us about the Four Diamonds Fund, but I didn’t remember until we got the letter in the mail stating that we were officially a four diamonds family. We had no idea how much at the time the four diamonds fund would help us.
Throughout the first 15 months of cancer, Brandon went through 6 rounds of inpatient chemo, a stem cell harvest, an 8 hour surgery to remove the original tumor and some lymp nodes, one round of intense chemo, followed by a stem cell transplant. He had 18 rounds of radiation to the original tumor site. Then 6 rounds of accutane, plus numerous hospital visits for follow up appointments and stays for infections. July 31, 2005 Brandon was officially in No Evidence of Disease status.
He started 1st grade that year, he was our “normal” boy again. In april he was skateboarding with his brother, and if it wasn’t for a skateboarding accident we would not have found the lump that would start the nightmare all over again. With Neuroblastoma, after relapse the survival rate goes down to 20 percent and usually children die within the first six months of relapse. Brandon was older this time, so he helped make decisions with his treatment, his first choice was 10 rounds of outpatient chemo. We traveled to Hershey everyday for a week, then several times a week for 3 weeks for blood work and check-ups.
After the 10 rounds of chemo we were told it was hurting him more than helping, Dr. Powell wanted us to take him to Childrens Hospital of Philadelphia to see Dr. Maris. Dr. Powell told us to go with an open mind. The first time we went Brandon had to have blood work done, he had a mediport and the nurse had to access it to draw blood. After she accessed him he looks at me and says “Holly does it better” he was a very honest kid. The first treatment we tried did nothing except give the cancer time to grow. So in April of 2007 we tried MIBG Therapy, which is radiation put directly into his bloodstream, this therapy worked wonders, most of his tumors were gone and bone marrow only had 15 percent of disease. So Dr. Maris recommended we do the same thing again. We did and it was great, all tumors gone and less than 2 percent in his bone marrow, he needed to have a stem cell rescue afterward.
Now it was time to keep the disease under control, we did another trial, which unfortunately didn’t work. All the treatments done in Philadelphia were Phase I trials, which means there is really no way to tell if it would work or not. We were still going to Hershey all along for blood work in between trips to Philly. So we tried yet another one and after that didn’t work, Dr. Maris recommended we go back to Hershey.
We went back to Dr Powell in Hershey and did the same chemo we started with in 2006, we are now in 2008. So far we had an extra year with Brandon that most parents get. We were told a few times that he wasn’t going to make it. Those times Brandon showed them he wasn’t going down without a fight. We tried different chemos to make the cancer go away and to keep our boy from having pain.
We also did many things as a family, we went on vacation to Washington D.C.. In August of 2008 he went to Camp Can Do and had the week of his life. He had so much fun he cried when it was time to go home. In September we did the Four Miles for Four Diamonds walk. Brandon started and finished the walk on his own.
October 2nd was the day we found out our time with him was limited, his liver was shutting down. Dr. Neally said it could be days, weeks, or months. On October 3rd he had a sleepover with two of his best friends. October 4th was spent with family and friends stopping by, Brandon was still the happy kid we love. October 5th he slept a lot, the only time he woke up was when his favorite nurse and her husband who he called his step mom and step dad, stopped by to see us. That was the last time Brandon was awake. October 6th at 3 am I went to bed, before I went to sleep I talked to Brandon. I told him we are not giving up on him, we will fight as long as he wants too. Then I said something to him that I thought I would never say to any of my children and that is if he’s tired and he wants to go fly with the angels it’s ok. I told him I would take care of his daddy, and his brothers and sister, and that I would be ok. And sometime between 3 and 5:30 A.M. Brandon went flying with the angels.
Brandon had a wish box that no one was allowed to look in. We looked that day, there were three wishes in his box. The first one was to marry his girlfriend Sophie, the second wish was that all his pain goes away now that hes in heaven he is perfect. And his third and final wish is one I am trying to make come true for him. And with the help of all of you we can make this wish come true. It is to find a cure for cancer.

Brandon Adam Loose was born June 13, 1999 and flew to the angels October 6, 2008. He taught us so much in his short life, he taught us to care for people, to live life to the fullest and to never give up no matter how much it hurts.
Thank you for listening to the story of our son, brother, and friend.

Brandon’s family

Hospital Information:

Heaven


717-283-8467

Links:

E-mail Author: cjmssb@ptd.net

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