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Jonathan Agin Headshot

Adrift in the Waters of Childhood Cancer -- Arguing to Change the Standard of Care

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April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words "your daughter has cancer." They are four of the worst words that a parent could ever imagine hearing. They were compounded with the horrifying statement that our daughter Alexis was only given nine months, maybe a little more with standard treatment. Experiencing that was bad enough. What happened next leads me to write this piece and make the following suggestions. After hearing those terrifying words, we were in essence sent out to drift like a boat cut loose from its dock. We were placed in a system that is difficult to navigate, filled with unfamiliar terms and concepts that are beyond the general comprehension of non medically trained people. There was little explanation of the system beyond that point and as parents, scared for what the next day might hold, we were left to float in a sea of endless questions and concerns.

That is why I believe there must be some change in the standard of care for the diagnosis and interaction with families who face the prognosis of childhood cancer. This must occur from day one and be followed up with constant efforts on the part of the hospitals and centers making these diagnoses on a daily basis. Cancer remains the number one disease killer of children in this country and approximately 13,400 children a year are diagnosed. The diagnosis of a child with cancer is not an infrequent occurrence. And thus, we must push for and ensure some bottom level of standards that are discussed and provided to parents upon the diagnosis of their child.

Parents who have a child diagnosed with cancer face the prospect of choosing clinical trials, choosing treatment centers and doctors to work with, obtaining social services as well as therapy based services, educational issues, financial difficulties, etc., etc. The list is endless frankly. One of the biggest obstacles is that when a parent first learns their child has cancer, and in our case that the prognosis is less than grim, you are completely unable to think clearly. The job of the hospital, physician and social worker must be to ensure that families are not left to simply drift through the system without guidance, hand-holding and an understanding of these issues.

Take for example the clinical trials system. To call it confusing on so many levels is an understatement. In many instances, kids diagnosed with cancer participate in phase I and phase II clinical trial studies because the overall options are limited and these test drugs provide hope. Unfortunately, there is very little explanation initially about navigating the system and ensuring that your child actually obtains an open slot in a trial. I personally remember sitting with one of Alexis' physicians early on and reviewing forms for enrollment into a phase II study. After looking at and signing some twenty pages of documents, I had no better understanding of what we were submitting Alexis to than I did on day one. It was a daunting task to conduct research, review consent forms, understand the purpose of phase I vs. phase II trials and ultimately select what we believed would be the best option for Alexis. I believe that it must be standard practice to discuss the clinical trials system with parents of newly diagnosed children within the first week or two so that there is a firm understanding from the beginning. Of course in many instances the first consideration is whether surgery is required immediately and thus there may be delays in placing the child on one treatment or another.

Many families do not have the same options that we did when Alexis was diagnosed. Living near Washington, DC, we were more than fortunate to have access to some of the best facilities in the country. Between Children's National Medical Center and NIH, we quickly interacted with two of the top doctors in the world for Alexis' specific tumor type, DIPG. In the beginning stages, we had the benefit of also speaking with doctors at Johns Hopkins and Dana Farber. The point is that we had some choices and our "team" aided us in the decision making process. Ultimately we chose a treatment close to home because it was important to balance quality of life for Alexis. Many parents who have children diagnosed with cancer are not as fortunate and are simply pigeonholed into the local hospital or closest facility that may be able to care for their child. Instead of being counseled about potential options, open clinical trials and how to obtain a slot in a specific trial, they are walked down the path of least resistance. This should never occur when a parent is fighting for the life of their child. We must ensure that it is standard practice for every child diagnosed with cancer to be provided with all open and available options across the country that provides the parents the best chance of saving their child, and that all important concept of hope. This counseling must occur from the beginning of the journey. We must not continue to lay the burden solely at the feet of the parents who are dealing with their own stress and pressure while trying to save their child. From day one, an integrated team must be assembled.

At each institution we took Alexis to for treatment, which included five of the top facilities on the east coast, we were always introduced to a social worker. The first question we were always asked was "is there anything I can do for you?" To which, we always replied, that we did not know. Each facility maintained such different practices and procedures for even the littlest and simplest items involved with Alexis' treatment. It is simply a useless practice to ask a parent, who may be completely new to the facility and the city, if there is anything that they need. Instead, there should be some standard facility driven information presented to parents upon admission or upon the beginning of treatment. I understand completely that social workers are overwhelmed and many facilities are dealing with budgetary constraints; however these are not valid or adequate reasons to utilize to continue to ensure that parents are not educated about the facility and the options available to aide in the time spent in that location. Oftentimes, we were forced to raise our voices and squeak loudly to ensure that Alexis was provided with the adequate level of service that we believed a child in her condition deserved. There were times when this particular struggle was exhausting and caused us as parents to fight. Thus, what I would recommend is that there be at least one or two social workers in each pediatric treatment center who receive heightened levels of training on these issues that I am presenting herein, and who are capable of helping parents wend their way through the childhood cancer puzzle. This relationship should start immediately upon diagnosis and be fostered throughout the course of treatment. Anything less should be viewed as far below the standard of care.

Frankly, I could fill pages and pages with my thoughts in terms of reshaping the system. I understand that it takes money, time and effort beyond which may exist. That does not and should not mean that it is not important that we ensure it becomes standard of care. It has been over five years since my wife and I heard those horrible words on April 11, 2008 and I still am learning every day about the system. We continue to stay involved in raising awareness and research funding for DIPG and childhood cancer in the hopes that true cures are found and better treatments are brought to market. To this end, I believe that it is important that this journey, however good or bad it may turn out, is made that much less difficult by the people at the institutions who we entrust with the lives of our children. We should not simply be boats cast adrift in the stormy and murky water that is childhood cancer. Upon entry into the harbor and relative safety of a hospital or oncology practice, we should be met by a sturdy tug, ready to tow us in under able guidance to navigate the rocky shores.