When Joe and his wife Jenn (READ: The Long and Winding Road to Diagnosis) learned their son, Matteo, had a benign brain tumor, they had already been through weeks of trying to figure out what was wrong with their two-year-old son.

Now, finally with an answer and a treatment pathway, they were ready to focus on getting him the best possible care. Ensuring questions were answered, understanding their options, and communicating with specialists was its own challenge to navigate.

Being Proactive

When asked for a word of advice, Joe is emphatic: be your own advocate. Here’s Joe: “Be that person that accepts nothing for what it looks like on the surface. You need to ask questions even if you are concerned that the question could tick somebody off.” Asking pointed questions is about understanding what’s happening with your care. It doesn’t matter if somebody feels like you are second guessing them. That’s beside the point. If you need clarification regarding care; ask your questions and ask for clarification. Healthcare providers are there to answer your questions completely. If you need clarification, unapologetically ask for that clarification.

Protip: Once you’ve asked your burning questions or perhaps you are drawing a blank and don’t know what to say, ask this one question: ‘what question would you ask if you were me right now?’ This will give you forward momentum, and other questions may occur to you as the conversation progresses.

The reality swings from one 24-hour period to the next, can knock you off your game. It’s important to remember that. Joe describes his experience, “This condition is serious enough that they’re checking on him every hour and 24 hours ago we were at home and he was just asleep in his room upstairs. And we had no idea that this was so serious. So it ranges now from frustration to definitely that anger factor with that whole process. And then there is the guilt and the residual feelings of could I have done more? It’s hard not to blame yourself. Why didn’t we notice that there was a significant problem?”

Joe and his wife Jenn ask themselves these questions and have taken part in family therapy for years. There is another point of view, which is how could a system let a young family down for so long?

The shortcomings and failure of the system to make sure his son got the care he needed when he needed it is what is so confounding. Once in the right place, the care was outstanding, and in their case, ultimately life-saving.

Accessing Special Care and Expertise: Academic Medical Centers

Joe is a confident person. He asked questions. He recalls the first conversation with the neurosurgeon who performed their son’s surgery. When the neurosurgeon was explaining about the tumor they had found in their son’s brain and what needed to happen next, he showed Joe and Jenn the images of Matteo’s brain. Joe asked: “So tell us, is this the biggest thing you’ve seen in somebody’s head?’ And he actually said: ‘it isn’t the biggest one that I’ve dealt with this week.”

This response is the mark of an expert, “this week”, being the operative phrase. He made Joe and Jenn feel totally confident within the space of a five-minute interaction. “I wouldn’t leave my car with a mechanic after a five-minute conversation but here we are giving our kid to a neurosurgeon after a five-minute conversation.”

Protip: We may feel comfortable with our community practitioner that we’ve seen for years even if they are a specialist, cardiologist, endocrinologist, they are in a community practice dealing with the everyday, which is great for most of us most of the time. However, when you have a special situation, a serious diagnosis, a condition that the doctors aren’t sure about, or a recommendation for a serious procedure–even if it seems to be routine, you may want to go for a second opinion to an academic medical center.
Protip: What is an academic medical center? It is a place where they see the exceptions every day. These are places where care, education, and research are taking place all at the same time. These are the places where you will find the everyday utilization of cutting edge technologies as well as the development of these technologies and treatments. What the practitioners in these settings have at their fingertips usually is not available in a community hospital. They see the exception every day. So what they encounter in an average week is very different from the norm.

Don’t Assume You’ll Remember it All

When you are in a hospital in a situation like Jenn and Joe’s, with a gravely ill child, it is moment to moment. There is no big picture plan but rather a series of unfolding events. Joe and Jenn were called upon to take in a vast amount of information, assess risks and move along with the process–step by step. Asking questions and taking notes are important aspects to keep in mind. Here’s Joe: “In hindsight, I would’ve been taking notes in the hospital in real-time and asking questions. What are you doing? What are we likely to get billed for this? I would have probably done more of that.”

Protip: On your way to an important doctor’s appointment or to the ER, grab a pen and notebook. Jot down what’s happening, any questions that come up. It is difficult to remember everything that occurs to you in the moment. A notebook is key. It is a helpful way to keep track of the answers to your questions for future reference.

His final words when asked who were the greatest advocates or supporters during this time? Nurses won that award. The nurses were the ones that got them through the process. They focused on their son and his care and also Jenn and Joe and what they needed as parents living in this moment to moment hyper-surreal experience.

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