^^Angel^^ Brant H. - Quilt Finished in 2005

Born: December 13, 1998  Passed Away: October 29, 2005

Illness: Ependymoma Grade 2

Brant H.'s Story

written by dad Craig

Brant was born December 13th, 1998, in Des Moines, IA, weighing in at 6lbs 3oz, which amazed our entire family considering he was five weeks premature. When he was 5 weeks old, he developed RSV and needed to be hospitalized for short period of time. From February of 1999 until October of 2003, he lived the normal life.

On Thursday, October 9th, 2003 we began receiving signals that something was wrong, but didn't grasp the complexity until a few days later. Brant was chasing his older brother Bradley around the house (a pretty typical activity for two brothers that like to taunt each other) when he ran into the outside corner of a wall between their bedrooms. He smacked his head pretty good, and had a crying spell for a while, but there was no cut and no apparent bruise, so we shrugged it off. The next day, he complained that his head hurt a couple of times, but then continued to play like there was nothing wrong. On Saturday night, he woke up from his sleep with a "bad headache" and we gave his some Tylenol and began to worry about a possible mild concussion. On Monday morning, Julie took him in to his pediatrician to explain the situation. Brant's doctor was concerned that Brant woke up in the night, but didn't have too many problems during the day. He didn't notice any sinus problems and ordered a CT Scan the following day to make sure nothing else was wrong.

He did so well lying still for the procedure, that we let him pick where we would go for lunch. His choice... Burger King (evidently the kids' meal toys are currently superior at BK). After BK, we took him to Dairy Queen for Ice Cream. It was a great day, and I really didn't want to go back to work, but I did. Julie and Brant dropped me off at about 12:15. Little did I know that not 20 minutes later, I would receive the worst phone call of my life.

Julie called me from the side of the road to tell me that she just spoke to the doctor. I couldn't understand her very well because she was hysterical, so I told her I would be home immediately and rushed out the door. I understood her well enough to hear the words "spot on his brain". As I sit here and think about it, I'm not quite sure how I made it home in the condition I was in. The feeling we had the rest of the day is really "indescribable". I took the boys to the backyard to play while Julie spoke with our neighbors. One set of grandparents came to support us that night, but none of us received much rest.

The next morning, we headed off to get an MRI done. On the phone, they had told me that they would likely need to sedate Brant for the MRI... unless he could lay still for 22 minutes (highly unlikely for a 4 year old). Brant obviously wanted nothing to do with any kind of medication, so he proceeded to lay motionless in the machine for the duration of the procedure.

The results of the MRI didn't tell us much more than we already knew. We knew that the tumor was fairly small, but because of it's location, would be tough to remove surgically. We didn't know what kind of tumor it was, or how fast it was growing. According to the doctors in Des Moines, the best place for us to go was the Mayo Clinic in Rochester. So, we scheduled a meeting with Dr. Corey Raffel (Brant's Pediatric Neurosurgeon) the following Tuesday.

During our initial visit with Dr. Raffel, we found out that there would likely be side effects from the surgery and the surgery itself was considered a very difficult procedure. He went through the list with us, and we spent that entire night thinking about our visit with the doctor and trying to keep the "bad thoughts" out. The surgery was scheduled for the next day.

After what seemed like an entire week of waiting, the 6 hour procedure was complete and Brant was moved to the PICU at 5pm. During our post-op meeting, Dr. Raffel told us that the tumor was actually pushing on the brain stem, but luckily didn't originate there. Most of it was stuck to nerves, and it was very difficult to navigate around the cranial nerves to remove the tumor. Brant would likely have trouble talking and swallowing for a couple of days due to some stress on those nerves. The good news was that the doctor thought he removed all but a residual amount of the tumor.

The pathology report came back as a Grade 2 Ependymoma. Dr. Raffel gave us the good news and bad news before we were discharged: chemotherapy would likely not be used to treat Brant's tumor. The good news - he wouldn't have to have his body poisoned. The bad news- it eliminates an option that is used to treat many other types of cancer. We all returned home on October 30th to begin our new journey. He received 6 weeks of conformal radiation at the Stoddard Cancer Center in Des Moines finishing up treatment on December 31st, 2003. Other than nausea/ morning sickness, he tolerated the treatment very well and was officially in remission!

In February 2004, Brant was granted his Make-a-Wish trip to Disney World. The entire family had an amazing time at Give Kids the World Village and all the theme parks.

Brant continued to recover and began Kindergarten in September of 2004. He was doing very well in school and seemed to be 100% back to normal when the next bomb dropped. In November he began to complain about a pain in his back. As parents of a child recovering from cancer, we immediately began to panic. Our doctors quickly assured us that it was probably nothing more than a muscle pain and would go away in a couple of days. It did, and we moved on. A couple of weeks later it was back, only worse. Doctors said it might be a spasm, and that he should just rest for a couple of days. That weekend, we celebrated Brant's 6th birthday (two days early) as planned with family and friends. We could tell that on Sunday, he was in pain and started walking around hunched over.

Brant relapsed on December 13, 2004 (his 6th birthday) with metastasis to his spinal column and brain. Because of the quick spread, his disease that was once considered WHO Grade II is believed now to be the more aggressive Grade III Anaplastic Ependymoma. He had a second surgery to remove the tumor that was causing pain in the thoracic spine. Because of the rapid progression of disease in his lower spine, he received radiation treatments to relieve the pain. In February, Brant underwent stereotactic radiosurgery at the University of Iowa to treat the tumor on the brainstem. Because of previous radiation, this procedure was considered risky, but we believe that without it, he would have not enjoyed his summer. He returned home to recover and wait for FDA approval for a new study. After waiting nearly two months, we received FDA approval, and he underwent a scan to determine if he had the receptor cell necessary to enter the study. While Brant "technically" qualified for the study, the spread of disease was so aggressive during the two months that doctors told us that the study would likely not help Brant. He received more radiation treatments in August to help control the pain and we have turned to Hospice for End of Life care.

Brant's last MRI showed very aggressive disease that had taken over his central nervous system. Brant won his courageous battle with cancer on October 29, 2005, but had to leave his body to do so. He was our gift from God for 6 years, 10 months, and 16 days. We were blessed to have him as our son, and are extremely proud of the courage and determination he displayed during his battle. Words cannot describe how much he will be missed.

Written by Brant's dad Craig