Jonathan Hilland Talks About How Varian's SmartBeam. IMRT Helped His Son Recover from a Brain Tumor.

Ben Hilland is an 11-year-old boy living in Austin, Texas. In November 2003, Ben was diagnosed with a 3.9-centimeter tumor on the left side of his brain. Ben's doctors at the Children's Hospital in Brackenridge, Texas determined that surgery followed by radiation and chemotherapy was his best option. Both the standard radiation to Ben's cranium and spine, and the IMRT boost to the tumor site were performed by Dr. Stephen L. Brown at Austin Cancer Centers in Austin, Texas.

An Interview with Ben's father, Jonathan Hilland

When/how did you discover Ben had cancer?
My wife Emma was pregnant in June 2003 and had morning sickness. When Ben also began vomiting we thought it was jealousy because he was an only child. But when Emma stopped vomiting and Ben didn.t, we knew it was something else. Despite visits to several specialists, Ben's condition worsened and he started seeing double, stumbling, and losing his balance.

On and around Thanksgiving 2003, Ben vomited for 48 hours straight and started to have trouble finding his words, so we rushed him to the emergency room at the Children's Hospital. They conducted an MRI on November 29, which showed that Ben had a tumor 3.9 centimeters in diameter (the size of a golf ball) in the posterior fossa on the left side of his brain.

What was your reaction?
We were devastated. Horrified. Crushed.

Ben was unaware of the tumor or its possible life-threatening nature. But he knew something was wrong. He had never seen us so upset before and that upset him.

What did you do?
We pulled ourselves together for the sake of our son and concentrated on what would happen next.

What happened next?
Ben was immediately admitted to the hospital and the next morning -- November 30 -- we all met with pediatric neurosurgeon, Dr. Ronald Wilson and Dr. Sharp, pediatric oncologist and director of the Children's Hospital, to potential treatment. Fortunately, the cancer hadn.t spread to Ben's spine. Dr. Wilson explained to Ben about the surgery. He said, .This is really serious and we need to get it out.. He then asked Ben what he wanted to do and Ben said, .Please take it out of me..

Ben underwent a five-hour surgery on December 2, 2003 and Dr. Wilson informed us that they were successful in removing the tumor without sacrificing any vital tissue or nerves. The following day, a CT scan showed a clean picture of the tumor site. A post-operative biopsy of the tumor revealed it to be a medulloblastoma in the posterior fossa, as suspected.

Who told you about IMRT?
Dr. Stephen L. Brown. He and Drs. Wilson and Sharp work together as an interdependent team. The post-surgical plan involved a course of radiation and then chemotherapy for about a year. We saw Dr. Brown on December 20 and he explained that because of Ben's age and the fact that he had the tumor removed, he was a low risk. This meant that the initial radiation would be a two-week course of standard radiation to Ben's cranium and spine to eradicate any possible cancer that may be present. Following that, Ben would receive an IMRT boost to the tumor site.

What other treatment options were you given?
None. The radiation and chemotherapy were the best options to secure a healthy future for Ben.

Did you do any research about IMRT or other options?
Yes. I checked various web sites on the Internet, including Varian's, and I spoke with friends, many of whom already knew about IMRT and wanted to make sure that this was an option for Ben.

Describe Ben's IMRT experience.

When did the treatment start and end?

Standard radiation began on December 22, 2003 and ended on January 12, 2004.

How many treatments did you have in that time?

IMRT treatment began on January 16, 2004 and ended on February 10, 2004. Ben had 19 IMRT treatments.

Was it painful?

No. The IMRT treatments were fine. By this time, Ben was already comfortable with the restrictions imposed to keep him in one position. But there were some problems during set-up for the general radiation because of Ben's posterior fossa syndrome. This syndrome is a side effect of the surgery that is suffered by a small percentage of patients and it affected Ben's motor skills, basically reducing him to a quadriplegic. The problems arose when Ben was fitted for his mask. It was scary and painful for him, and he had no way to articulate his discomfort except to cry.

Were there any side effects?

Not from the IMRT treatment. Most of Ben's side effects resulted from the surgery and the chemotherapy.

How was the procedure described?

At the planning stage, a week before Ben was due for his IMRT treatment, Dr. Brown explained it in more detail for us. He told us that IMRT was a specialized procedure that delivered a precise beam of radiation to the tumor site and that this could be done by opening and closing a number of leaves in the machine so they conformed to the contours of the tumor itself. It meant that the radiation could be focused on the tumor site and not on the healthy tissue surrounding it, and this could result in fewer side effects for Ben. He told us that IMRT would give us all the benefits of radiation reducing the likelihood of Ben's tumor coming back without all of the negative long term side effects from standard radiation such as hardening of the brain, IQ loss, and short-term memory loss.

Are you happy with your decision?
Absolutely.

How do you feel about Ben's doctor and staff?
They are very caring, very humane, very professional, and very thoughtful. Dr. Brown paints the masks for his pediatric patients and Ben wanted his to be like the one in the Jim Carrey movie, .The Mask.. So Dr. Brown -- this very busy man -- actually took time to paint Ben's mask over the weekend. Not only that, but when they discovered that Ben had every Jim Carrey movie except .Liar, Liar,. they bought him the DVD as a gift to celebrate the end of his treatment.

How is Ben doing now?
Ben has had three MRIs since he completed IMRT and the last one showed that the swelling had completely reduced in the posterior fossa and it was back to normal, without any trace of the cancer. Ben is regaining his strength and his motor functions slowly but surely and his speech is improving. Dr. Brown told me that Dr. Wilson commented on how well Ben had recovered from the surgery and in particular the reduced swelling to the fourth ventricle (tumor site) and that he (Dr. Brown) felt this was attributable to the IMRT treatment. The prognosis for Ben is that because of his age and the fact that the tumor was completely removed and then followed up with general radiation, an IMRT boost and chemotherapy, there is an 84 percent chance that he will be cured; that the tumor will never come back.

What's your advice to others?
Find out about IMRT. Do your own research. The studies I found show that in the case of a malignant and aggressive brain tumor like Ben's with a high risk of recurrence, radiation treatment -- especially with an IMRT boost to the tumor site -- provides the best way of reducing this risk without the greater risk of long term side effects. In fact, it seems that the likelihood of the tumor returning goes from 50 percent of the kids to something like 14 or 15 percent. So if IMRT is an option, then take it. If it's not mentioned, then find out why or get a second opinion.

Ben is willing to share his experience because he wants to help other children.