September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Stewart Goldman, M.D.
It is hard for me to explain the dread I feel when at a social gathering a stranger asks me, “What do you do?” It is not that I am shy, or ashamed. With every part of my soul, I am proud and honored to be a pediatric neuro-oncologist. I am thankful in ways I cannot adequately express that I was given the opportunity and privilege to follow this path. So I can’t really articulate why I feel this discomfort.
The usual response received after I state my career goes one of three ways:
- “OH, you must be an angel!” Not true, just ask my bride.
- “My God, that must be tough. I couldn’t do it — I like children too much to hurt them.” This implies I don’t like children and don’t mind their suffering, which just hurts my feelings, and makes me mad.
- “That must be so sad, so hard, how do you do it?”
Unfortunately, this last response, which I hear frequently, has a simple answer, but one I cannot, nor do I always want to explain in a social setting.
First of all, let’s state the obvious: cancer sucks, cancer is unfair, cancer in the brain is wrong, and the devastation it causes is horrific. Going further, cancer in a child, well, that is the ultimate wrong.
Let’s not forget how wrong brain cancer is in a child. Let us not forget the pain and suffering they experience from their tumors, surgeries, chemo- therapies, and radiation. Let’s not forgot that we lose way too many of these children, nor the devastation it brings to their parents, siblings, friends and community, or the loss to our world of these special children, whom I believe would make it a better place.
Yet in my daily life, I get to meet wonderful children, who happen to have a brain tumor. Not people who feel sorry for themselves, but children who want to be normal, play, grow up, and experience the love of their families. I see parents re-prioritize their lives to focus on their family. In a way, I think in our hectic complicated lives, we all lose at least a little of this focus.
In some strange way, I benefit from this reminder to realign my priorities, as I lose sight all too often. I see siblings, who themselves suffer in so many ways, develop a sensitivity, kindness, maturity and compassion that goes beyond their chronological age, and an energy they will extend to others for years to come.
In my days, I see the best in people. Yes, being a pediatric neuro-oncologist is hard. It is our job to console and support the families and staff and not to fall to pieces ourselves. There are times when the pain I feel over our inability to cure every child can be overwhelming. Sometimes the responsibilities feel too much, but the joy to be involved and to feel part of the lives of these children and their families makes any negatives seem trivial.
This career is not difficult, it is a privilege.
Maybe that is why I feel so comfortable around other pediatric oncologists and oncology staff. They get it; we don’t have to explain it to one another. Once when asked, “ How do you do it?,” I answered that I get more than I give. This is the truth, but in those social settings, I normaly answer, “ I am a pediatrician.” Maybe not a complete description, yet still true, and then we can move on to the weather.
When Mary Tyler Mom asked me to contribute to her blog, I was not sure what to write about. She said, “Tell some stories, not facts about childhood cancer, some stories.” So here goes.
- One of my patients was raising cows for a 4H contest. He named these calves after his medical team. He made a big poster with pictures of the cows with our names under our namesake cow. I was so confident that Dr. Stew was the best and strongest cow. I hung this poster proudly and called attention to it for everyone to see. A few months later, the boy came to the hospital all proud and excited. It turns out Monica, a black and white Holstein (named after his favorite nurse), won the best in show. When I asked what happened to the cow named Dr. Stew, he just rubbed his stomach and said, “ He was delicious.”
- I am a die hard White Sox fan and had a running ‘Sox versus Cubs’ banter going with one of my patients. One summer when I was out (with the aid of some accomplices), this patient located my car and address. While I was away, he decorated my car and home in Cubs paraphernalia. He denied for 6 months any knowledge of this prank, but come the next Christmas I was given a present of a picture of him smiling while defacing my car with an “I Love the Cubs” license plate. This picture of him, with his giant beaming smile, remains on my shelf and is truly the only Cubs logo seen within a mile of my possessions.
- During my Oncology fellowship in the late 1980s, I was caring for a 17 year old who was the only child of two holocaust survivors. His cancer had recurred, and after years of fighting he was now slowly dying. He was a tremendous young man, mature beyond his age. The kind of young man whose only concern was how his parents would survive without him there to care for them. I trained at a center that had the pediatric hospital connected to the adult hospital. During this time, my own mother was in her terminal phase of breast cancer, and I would spend nights in her hospital room. One evening, I left her room to go back to check on my patients. When I went to see this 17 year old, he and his family asked if they could pray for my mother. More than 25 years later, I am still in awe of the depth of kindness and humanity of this family. How could this young man and his family, despite all the suffering they had seen, still be so giving to others? It is this type of compassion for others I see almost daily in the children and families we are so honored to care for.
Part of my job is to raise awareness of our cause and money for our research. We even have a Facebook page. One day recently, we featured a picture of a three year old boy, happy and smiling in his hospital bed. This photo, true as it was, stirred deep emotions and even anger for some who know firsthand that childhood cancer is not all smiles. I was reminded we should not ever, in any way, under emphasize the realities of cancer in children.
Having a brain tumor is not all smiles and fun. Kids suffer. Kids receive tremendously difficult treatments. Kids endure horrific side effects. Kids feel pain. Kids die, and their loved ones die a little with them.
The realities of childhood cancer never go away.
My goal is to have these kids live as normal a life as possible, while providing treatment that leaves them with as few lifetime challenges as possible. My goal is a life for these kids, no matter how long or short, that is filled with as many smiles and as much joy as possible.
Despite the pain, these children and families persevere. I marvel at my families (a little presumptuous on my part, but I do think of them as ‘my families’), how even in the worst of times, even with the loss of a child, they reach out to each other, or create foundations to raise money for research, or serve other families. They want nothing more than for no other child and family to experience what they have.
This courage and the love of our patients, their families, and communities, motivates our team to push on, to fight harder, to find better answers. We owe that to the children and families we have served, and those we will serve in the future.
One of my instructions was to keep my blog under a 1000 words — guess that didn’t happen.
So maybe if we ever meet at a social gathering and you ask me what I do for a living, you’ll understand why I give you a one word answer, “pediatrician.” Now how ’bout those Cubs?
Dr. Stew was our daughter Donna’s neuro-oncologist at the former Children’s Memorial Hospital, now known as Lurie Children’s Hospital of Chicago. He said something in the midst of her treatment that really helped pull us though, “Donna may have a brain tumor, but she is not a sick child.” He was right. Through his efforts, Donna was able to live her brief life with the best quality we could have hoped for, enabling her to know joy for many of her days. We are indebted to him and it is not too much of an exaggeration to say I would take a bullet for this man. He is that important to so many vulnerable children. We love him dearly.
You can support his research by making a donation here. Under “Gift designation” in step 2, please make certain to designate the “Brain Tumor Research Fund.” It looks a lot like this:
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