Battling pediatric brain and spinal tumors is a complex, uphill challenge that requires input from many specialists, a love for children, and a Herculean heart to be in the delicate position of working closely with children confronted with serious and at times life-threatening issues. These health care professionals witness a slice of life everyday that is brutally unfair. In some scenarios, they eradicate the tumor. Other times, they cannot and are left with the grave residual effects of a young life cut short, heart-broken family members and the mental anguish of not being able to create a happier ending to the story. No matter what scenario blossoms, the team at Lurie Children’s Hospital’s Neuro-Oncology Unit (which is rated #10 in the nation for pediatric oncology by U.S. News and World Report 2012-2013) continues to put their whole-hearted spirit, commitment and their professional expertise on the front line every day to help save as many lives as they can.
The featured image of Dr. Jason Fangusaro; Pediatric Neuro-Oncologist and Associate Professor of Pediatrics is worth a thousand words or as novelist Ivan Turgenev wrote in Fathers and Sons in 1862, "A picture shows me at a glance what it takes dozens of pages of a book to expound." This doctor, who specializes in treating children with brain and spinal tumors, has got that special something that you don’t learn in med school. He loves what he does and it shows through the special bond he forms with his patients which he attributes to his high school and university theatre background.
The performing arts trained him with the fundamental lost art of human nature: eye contact, listening and hearing (two very different things) and staying truthful in the moment, challenging in a field where doctors have to discuss grave medical conditions and navigate in-depth decision making with vulnerable family members. Fangusaro allows for those uncomfortable silent moments and gives space for patients and family members to express their emotions, an often missing element in today’s current medical care.
Fangusaro says: “I always knew I wanted to do pediatrics. During medical school, I volunteered for an oncology support group.” It was during his fellowship for oncology that he began to study brain tumors and became intrigued by the clinical approach and the science behind it. He is trained in pediatrics, oncology and neuro-oncology.
Fangusaro’s work is interplayed with a team of specialists in order to provide comprehensive care to the patient. Depending on the type of tumor, a neurosurgeon may decide to or not to operate and with the help of a neuro-pathologist (who looks at tissue under a microscope), Fangusaro determines what specific treatments will be implemented: chemotherapy, observation, radiation or a hybrid mix of all three. While rare, some treatments can use radiation alone but it really depends on the child’s diagnosis. He tries his best to avoid using radiation in young children which can cause lasting side effects, but may have to resort to it if the tumor is not responding in the way that he hopes it to. The preferred strategies of chemotherapy and other therapies such as proton therapy (targeted therapy) limit the amount of damage to normal brain tissue.
Once a week, the Neuro-Oncology team of specialists gathers to discuss the history of the patient and the clinical progression and determine the recommended standard of care treatment strategy which is never a cut and dry decision. At times, markers in the blood and spinal fluid give clues for treatment tactics, sometimes the tumors can be classified just by looking at a picture, and others require a tissue diagnosis. The strategies are complex and varied.
Kathleen O’Connell, a Neuro-Oncology Nurse Clinician with a smile like a ray of sunshine, plays a pivotal role in the care coordination for these children diagnosed with brain tumors. (In 2009, she was named nurse of the year for the Leukemia Research Foundation) She navigates them through the process from diagnosis onward and as a result forms a strong connection with the kids and families. O’Connell sees the children in clinic, draws their blood, gives IV push chemotherapy and prepares them for their treatment protocol in either an inpatient unit or day hospital. It’s an extremely personal and emotionally charged job as there are many highs and lows experienced in this type of battle. She celebrates the victories and suffers their defeats.
O’Connell says: “Every child lost takes its toll on the ability to come back in day after day and continue to do this job, but thankfully we have more victories than defeats, so I personally try to honor every child lost by trying to help the next win their battle.”
The most rewarding aspect of her job is helping the kids win their battles so they can live their life and go for their dreams. She says: “There is nothing better when a former patient comes back to clinic, sometimes many years after treatment has ended, to find you just to give you a hug and fill you in on their lives.”
After working in this industry for 17 years, (9 as an outpatient nurse clinician) O’Connell recognizes that this type of roller coaster ride can cause a major burnout. As a result, she has a great support team with her family, friends and colleagues and makes sure she takes time off to recharge. She says: “It is exactly like they tell you on an airplane when the oxygen mask drops down – you have to put your own mask on first to be able to help those around you.”
Holidays are her favorite time of the year as families will send cards with pictures and updates. O’Connell says: “It is so gratifying to see how far they have come from when they were diagnosed.”
And I suspect the kids and family members would say: “It is gratifying to know that someone like O’Connell is right there side by side with them on this journey.”
There is another extraordinaire that is the underpinning, both emotionally and logistically for the patient and families. Her name is Gina Baldacci, and she’s a Social Worker in Neuro-Oncology – and boy do hospitals need more of these.
If you watch any of these hospital episodics, it’s very rare that you see a social worker in any of these high-conflict scenes and yet they are the fabric of the patient and family’s wellbeing. Lurie’s medical team recognizes her value and respects her opinion on sensitive matters, interacting with her several times throughout the day.
She is a warm-hearted woman who makes you feel loved from the get-go and taken care of whether it’s offering emotional support upon a patient’s diagnosis, counseling siblings, helping the family address their overwhelming financial needs or writing a letter for a parent who is missing work. Sometimes she even serves as an advocate for the patient within the community, such as communicating with school social workers on behalf of the patient. Her role is multi-faceted and after exploring various volunteer positions, internships and jobs, this is where she wants to be and this is where her patients want her to be, too.
Fangusaro says: “Gina is a great resource. As you can imagine, hearing your child has a brain tumor can be overwhelming. Sometimes I may explain something to a new patient’s family and Gina will come in and tell me that they only absorbed about 10% of it. She supports these families and helps me to get them the information they need to move forward.”
Like O’Connell, Baldacci keeps herself emotionally intact amidst the pressures with the tremendous support of family and friends. Baldacci has always been one of those personalities who appreciates the value of every day and working with people impacted by various illnesses reinforces just how important it is to not “sweat the small stuff”.
She says: “Nobody is guaranteed a tomorrow. And, I’m truly grateful for having the opportunity to work with the patient population. Children and their families have shared their stories with me over the last eight years and I've learned a lot just by listening.”
It’s always a pleasure to write about medical professionals who give such dignity and grace to the medical community. In a time when lack of bedside manners has become front page news in the healthcare arena, it’s refreshing to see medical professionals like these put their humanity on the line giving exceptional, quality care. Emotional literacy is what makes us human, and this trio at the Lurie Children’s Hospital’s Neuro-Oncology Unit gets high marks.