Brant'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.

On Monday, December 13th (Brant's official 6th Birthday), we took him to his doctor and requested an MRI. We were admitted to the hospital and Brant was scheduled for a full cranio-spinal MRI at 3pm. Doctors rushed in and out of the MRI room as we sat helpless in the waiting area. Deep down we knew something was terribly wrong. Brant's Oncologist appeared and broke the news to us. Brant's cancer was back. The MRI indicated a large mass compressing his spinal cord and drop mets throughout his spinal column. Before the MRI was even finished, doctors instructed us to get a head start to Rochester. Brant would need to be transported in the helicopter and there was no room for us.

He received surgery to remove the large mass that was compressing the spine. Dr. Raffel said that he was able to remove 80-90% of the tumor. We were told that the fact that the tumor had recurred in a different location was not a good sign for an Ependymoma. 90% of the time, they come back in the original location, but Brant's did not. There was also concern because of another enhancement on the MRI. The doctors in Rochester saw something on the scan, but because of motion, wanted another clean MRI of the head. The second scan revealed our next piece of bad news. Another tumor on the brainstem. This time, because of the location, we were told that surgery was not an option. It was also inside the original radiation treatment field, which meant radiation was not an option. From past research, we already knew that the two best ways to treat Ependymomas are surgery and radiation. There has been very little success with chemotherapy.

On December 19th, 2004 we returned home and celebrated a very special Christmas with family and friends. Brant returned to school on January 2nd, 2005.

After several attempts at treating the disease in early 2005 we decided to pursue a new treatment option called OctreoTher. In order to qualify for the study, we needed to wait for FDA approval of the dose that would be used for Brant. We first talked to the doctors at the beginning of June, but didn't receive FDA approval for almost 6 weeks. During that six week period, Brant's disease became very aggressive and doctors didn't think the study would help. They instead recommended that we turn to Hospice for end-of-life care.

On September 1st of 2005 we found out that Brant's disease had become extremely aggressive and there were no treatment options available that would help. We had already called Hospice into our home weeks before his last MRI, but wanted the MRI to confirm what we had suspected. We were sad to learn that Brant would only be with us for 2 to 8 weeks, but relieved to know that he would soon be free from pain and comfortable.

Our Labor Day holiday weekend was a busy one. We attended an Iowa Cubs game and stayed in a hotel room furnished by a friend on Friday and we went camping at a nearby campground on Saturday and Sunday. We took Brant Christmas shopping and he picked out presents for his brothers and grandparents.

Shortly after our enjoyable weekend, Brant began to experience increasing headaches and we brought a hospital bed into our home at the suggestion of Brant's Hospice Team on September 11th. By September 14th, Brant could no longer balance and was confined to his bed most of the day. He was awake for less than an hour per day. Our neighborhood had planned an early Halloween party for Brant, but Brant was not able to enjoy the festivities like he had planned.

During the course of the next week, Brant gave us quite a few smiles which helped ease our sadness. Brant stopped eating on September 14th and his medical team indicated that we likely wouldn't have much time left with him. From September 20th through October 29th, Brant fought one of the most courageous battles ever. He continued to give us smiles until a few days before he left us. He died on the day that our community had a fundraiser for our family called Brant's Great Pumpkin Walk. The fundraiser/ party was from 9am thru 1pm on Saturday 29th.

Brant passed away peacefully surrounded by his family at 11:30pm that night.

At his visitation there were hundreds of family and friends, several clowns and his fire department buddies that even brought along the truck. Rather than flowers, we asked that friends contribute money to a memorial fund which will be used to continue Brant's legacy. He wanted more playground equipment at his elementary school and we plan on building a memorial playground in loving memory of our little buddy.

Brant 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!!