In Loving Memory of Bennett Sterling

Julia Draznin Maltzman, MD
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: August 18, 2004

OncoLink Tour of Hope Interview

On October 1, 2004 a team of twenty cyclists led by six time Tour de France champion Lance Armstrong, will depart Los Angeles California and cycle across country to Washington DC, in the Bristol-Myers Squibb Tour of Hope. These amazing twenty were selected from over 1,200 applicants to raise awareness and share their passion for cancer therapy and cancer clinical trials. All of these men and women have intimate and often heart-wrenching stories to share about how cancer has affected them personally. Each one of these cyclists has had to overcome this disease in one way or another.

OncoLink was fortunate enough to be able to speak with Elizabeth Sterling. We hope that her story will inspire our readers that may be going through a similar experience. Her story should be an inspiration to all of us to be the best mothers, fathers, siblings, friends, spouses, daughters, and sons we can possibly be.

OncoLink: Thank you for agreeing to speak with me. I have already interviewed one of your teammates Darren Mullen whose story was incredibly moving and touching. I was also interested in speaking with you because what you went through may be every mother's biggest fear. Speaking as a mother, I honestly, can't even fathom what you endured. In honor and in memory of your son Bennett can you tell me about how it was that he was diagnosed and the 18 months of therapy?

Elizabeth Sterling [ES]: I had the most perfect pregnancy, ate right, exercised, had no interventions with my labor, breast fed my son, I did everything right. Bennett was the first grandchild on both sides of the family, so he was much anticipated by everyone.

He was always big for his age and at our four month well-child check appointment, our pediatrician noticed that Bennett's head circumference grew from the 50 th percentile where it had been two months earlier, to over the chart; greater than 100 percentile. We did not think anything of it. We just thought our boy has a big head. But our pediatrician recommended getting a CT scan just to make sure there was nothing going on. We did not expect to see anything, really. We were just going through the motions. I remember, I was at work and my husband called me after the CT was done and told me that the doctors see a little bit of fluid in Bennett's brain. I was in total shock. How could this happen? How could this be? I couldn't believe it. I kept asking why? Why is there fluid present but the doctors did not know and hypothesized that there was some abnormality in the brainstem not picked up by the CT scan. There was no mention of tumor or cancer or anything of the sort.

The next step was to go find a neurosurgeon that could take out the fluid. It turns out we needed a shunt – something that would continuously drain the fluid. We ended up traveling to a surgeon in Hershey, PA who did the shunt the next day. This surgeon was the first one to mention the word tumor. He said that he thought he could see a tumor on the CT scan that maybe responsible for the fluid accumulation. We needed to either cut this thing out or biopsy it. But he said that he would not recommend doing surgery right away, but rather allow Bennett to heal for two weeks from the shunt procedure before proceeding with the tumor surgery. It was at this point that I realized that I needed to educate myself. I started to read anything I could get my hands on. I searched the Internet, spoke with people and quickly realized our situation was unique enough, and rare enough that we really needed to find experts. We needed a neurosurgeon who knew how to deal not only with brain tumors, but also with infants.

It was during one of my searches on the Internet that I learned about St. Jude's hospital in Memphis TN. I also learned that there were clinical trials conducted there designed specifically for kids under the age of three. So we packed up and, essentially moved to Memphis for what turned out to be one year.

First Bennett had to have his surgery to remove the tumor and make a definitive diagnosis. He had so many complications post operatively. He had so many seizures and was on so many different medications. He was in the ICU for a while. I remember the worst time came about ten days post operatively, when Bennett would not respond to us. He would have these convulsions and then become totally unresponsive to our presence or us. I knew something was wrong. We had teams of neurologists come and no one knew what this was. All types of rare syndromes were considered but no one had a diagnosis. I really hit rock bottom one day when all the main doctors were away at a conference and I called one of the residents and told him that this is still happening and all he said was OK, we can get another CT scan. I knew that this CT scan was not going to show anything! But, all of a sudden it hit me. Call it mother's intuition, I don't know what, but I realized that it is the medication that Bennett was put on that was making him act this was. The doctors tried to convince me that his anti-seizure medication was actually helping him and preventing seizures. Furthermore, they said that his drug levels were all good – not high enough to cause problems. But I insisted and we take him off two medications – Dilantin and Reglan. I am not sure which one of them was responsible, or if it was the combination of the two, but within twenty-four hours Bennett was 100% better.

My baby woke up again, he was back to being himself. He could interact with me. I was so relieved. And, it was that day that we got the news that Bennett had a Medulloblastoma – a malignant brain tumor. It was almost as if it were planned. Someone knew that I would not be able to handle my child being so sick convulsions and inability to interact with me and hearing this devastating news. Only once Bennett improved did we find this out. Honestly, as soon as I saw him getting better I was so relieved I felt as if I could deal with anything – including cancer.

We packed up, came home for five days, and returned to St. Jude's to begin treatment on the very same clinical trial that I had seen prior to even coming to Memphis. I knew that a clinical trial was our best hope for survival. Being at St, Jude's gave me all the confidence in the world that my son will be taken care of in the best possible way. It also gave me comfort and joy to know that Bennett can participate in something that one day could help others in his situation.

The clinical trial consisted of 20 weeks of chemotherapy including intra-thecal therapy (chemotherapy injected directly into the fluid that surrounds the brain and spinal cord), then followed by six weeks of radiation therapy, and finished up with twenty more weeks of chemotherapy with intra-thecal injections. Some cycles were worse than others. Thank goodness that they had great drugs that could help him deal with the nausea and vomiting. He was neutropenic (low white blood cell counts) often with a few fevers requiring hospitalization. He received many, many transfusions of blood and platelets. He had a central line for all this. I remember he used to like to chew on the end of the central line – he used it as a teething toy. He finished the first twenty weeks and was scheduled to begin radiation. But they have never done this type of radiation on anyone under one year. He was the youngest patient they have ever done. He finished 2 weeks before his first birthday. I remember, we celebrated his first birthday in Memphis and the next day he began radiation.

Bennett's tumor relapsed after radiation and we were taken off study. We were devastated.

They found another large tumor in his brain that needed to be removed surgically. The worst day I remember was when Bennett was in the ICU and he lost his intravenous access. They poked him for an hour trying to find an IV. He cried and screamed. We had to hold him down during all of this. This was just terrible. Seems so trivial compared to what he already endured, but it was so hard on me to watch him being poked for an hour straight.

OncoLink: I just can't imagine. What got you through this? Who supported you?

ES: We are very fortunate as we had many friends and lots of family come and stay with us and keep us company. I was fortunate enough to be able to take 2 years off work and my husband, who owns his own business, took off a year.

I also kept a daily email diary. Each day I would try to find something positive to focus on. It could be something as silly as a friend buying us coffee, or the fact that our hospital room may have a view of the garden, but I needed to focus on the positive. I learned never to loose hope, no matter how bad things seemed to get. And I became more spiritual and religious through this. Faith and religion helped me through it.

Bennett was the greatest gift God could have given me. Through I learned that there are two types of hope. The first one being the more narrow view of hope – hope that we get what we want. The other is a broader, much more beautiful, more wonderful, view of hope that something great can come out of any situation. Bennett did what he was meant to do on this earth. He was meant to live 18 months and he did. Honestly, it was harder on us than on the person going through it, I think.

OncoLink: Did you ever get angry?

ES: I guess I just don't see it that way. My husband did get angry, but I didn't. I just got tired. Just tired from everything. Tired of dealing with one thing and then another. I was fortunate to be surrounded by loving family and friends and saw the families around us at St Jude who were much worse off. Bennett was not robbed of anything. His purpose was to live 18 months. He affected so many people even in his short 18 months. Although he never talked or walked, he was an inspiration to so many including me. We have so many photos of his smiling and laughing. He was a happy kid. We took him out to state parks and on hikes when he was well. I guess not being angry is my survival technique.

OncoLink: So what happened after he relapsed? He had to go off study, I imagine?

ES: Right, we tried another trial. After the first cycle, it seemed that he responded, but after the second cycle, we did and MRI and it was obvious that the tumor grew. We were recommended to try Temodar an oral drug. I knew in my gut that it is not going to work and knew it was time to focus on his quality of life. It was a year to the day that we arrived in St Jude's and we were getting ready to go back home to continue the Temodar there. Bennett started to sleep all the time. The times he was awake, he was irritable and cranky. An emergent MRI showed that the cancer has spread all over his brain. So we returned home for hospice rather than more treatment.

Even though, I knew that the Temodar is not going to work, this was the first time that I realized that Bennett is going to die. On November 18, 2003, when he was exactly 18 months old, Bennett died at home. I can't tell you how devastating it is to watch your child take their last breath.

OncoLink: What is the Blue Butterfly Fund? And how did it get its name?

ES: The Blue Butterfly Fund is a fund we started in honor of Bennett and it is designed to help other families whose children may have cancer. It is primarily financial assistance but I end up talking to so many such families and helping them through this difficult time. It is so rewarding and makes me feel so good to know hat I have helped someone. For example, we just helped one family that was in total financial ruins after paying all the medical bills for their sick daughter. We helped them make their mortgage payment. This is how Bennett's life is helping other people. He is doing good for this world and he does not have to be here physically to do it. His memory lives on this way.

The name the Blue Butterfly is a symbol of hope. Blue is a healing color and a butterfly is a symbol of hope through history. When we found out that Bennett's tumor progressed through the clinical trial and radiation, I was just so devastated. I was talking to a friend of mine and she told me that now I am falling, but soon I will hit bottom and then I'll be able to see the light and regroup. As she said this, I happen to look up at the incandescent light and there was a blue butterfly puppet my husband put up so that Bennett would have something to look at. As it turns out the butterfly was a symbol of hope in Nazi Germany. Jewish people used to draw butterflies on the walls as hope.

OncoLink: Why do you think you were chosen for this Tour of Hope over the other 1,200 applicants?

ES: I was chosen because my story is unique. Most of the people on the team are the survivors themselves, with me you have to dig deeper for the story of hope.

OncoLink: What does this Tour mean to you? What do you hope to accomplish?

ES: People still die of cancer. I want that to change. I want there to be a cure for all of cancer and certainly for all of the childhood cancers. I want to raise awareness for the importance of clinical trials. I want people to know that clinical trials are an option for them. And, I want people to understand that they have to be strong advocates for themselves and for their loved ones. You have to know all your options. Don't expect someone else to make these difficult medical choices for you. You have to do it yourself.

I also want to share my version of hope with other people. People need to embrace it and put it in their back pocket and pull it out when they need it. There is always something to be happy about. You always need to look for it.

Everyone should make a commitment and a promise to educate themselves, to gather all the information, to learn as much as possible.

OncoLink: How would you like the world to remember Bennett? How do you remember him?

ES: Bennett was a happy, always smiling little boy. This little kid lived so that I could share his message with the world. So, I would be so honored, if someone, anyone, out there, could make this self-education pledge, this commitment, in honor of Bennett, then his struggle was worthwhile. If just one life is saved because a parent hears our story, then this means the world to me. Bennett lived to empower me and empower others to make educated choices, to reach families, to save others from experiencing this pain.