I am finally at the half-way point of my proton treatment, and besides some fatigue and hair-loss, I’ve been feeling pretty well. Every day I have a similar treatment routine: I take the T to Mass General (…usually while listening to a Spotify playlist made by my brother), take the elevators down to the Burr Proton Center, scan my MGH card to check-in, sit down, and wait until it is my turn for treatment. Some days the waiting room is empty and quite (…usually in the afternoon). Other days it can be quite chaotic. Nurses and doctors walking through, the receptionists barely catching a breath in-between phone calls, and fellow patients and their families chatting away as they wait for their turn on the machines. I often see the same people throughout the week, but as the schedule changes and treatment plans end, old patients leave, and new patients take their place.
I remember my first week in the waiting room being amazed by the diversity of people. There are patients coming in from all around the country and the world…filling the room with an orchestra of accents and languages. There are people of all ages, from toddlers in strollers to elderly being wheel-chaired in. I usually sit there quietly (…sometimes sleeping), often observing everything going on around me. Parents of children chat with each other, and older patients say hi to friends they likely met just a few weeks ago. But I sit there quietly…not because I am shy and don’t want to talk to anyone, but there is no one my age…no one I can closely relate to. I sometimes fantasize about engaging in a conversation with one of the older patients…and being whisked away on an adventure tail from their youth, like reading a thrilling novel. I will at times wave high to the younger kids eyeing the candies on the counter as if they are trying to make them levitate towards them…But I rarely think about engaging in conversation with any of the parents…and this is why.
At the end of my first week of treatment, a father and son sat down next to me. I could tell from their accent that they were from somewhere in the mid-west. I started talking with the father who said they were staying in housing near MGH while his son received proton treatments. We started casually talking about the weather and traffic, but we quickly changed topics to our treatment and medical situation as most conversations do in these settings. The boy, around 11 or 12 years old, recently had brain surgery to remove a tumor, and was approaching the end of his proton treatment. The father and boy were so excited to be almost done with treatment…to finally get back home after having been living in temporary housing for so long. As he continued telling me about their experience, I slowly became increasingly uncomfortable. This discomfort was not from hearing about their story, but knowing I would have to tell mine soon after…but I didn’t want to.
This was the first time I felt uncomfortable in this type of situation. Before my tumor recurrence, I would love to make small talk with parents in the waiting room. I would be proud to tell them what I had been through, and how well I was doing. I hoped that them hearing how I surpassed my own childhood diagnosis would provide them with some hope and strength as their child began their own brain cancer journey. I had beaten the odds of my diagnosis…I had gone from being paralyzed to competing in tennis and swimming…I had gone from only being able to handle a couple of days in school per week to graduating college at the top of my class. I felt like I could serve as a reminder that a brain tumor diagnosis does not define your life, but that it is you who defines the journey.
Now, with my recurrence, I feel like I serve as a reminder of how uncertain this brain cancer journey can be. The boy in the waiting room was only 12 years old…the same age as when I was first diagnosed. While the father talked, I was dreading the moment he would ask me about my current situation. When a parent is bringing their child to proton treatments, all they want to think about is the moment they can return home, and put all of their medical concerns behind them. The last thing they want to be reminded of is the reality for many pediatric brain tumor patients…that it might be over for now, but the journey is a very long road. There will always be uncertainty if (or when) they will have to deal with this again.
I am a reminder of that uncertainty…and it’s not fair. It’s not fair for me, that boy in the waiting room, or his father. It is not fair that despite it being 11 years following my original diagnosis, kids across the country and the world face the same uncertainties my family and I were presented with when I was first diagnosed at 12 years old.
Here are some sad yet important statistics (*statistics from the National Brain Tumor Society):
Malignant brain tumors are the second most common form of childhood cancer
Malignant brain tumors are the leading cause of cancer-related deaths for children under 10 years old
Malignant brain tumors are the second leading cause of cancer-related deaths in all children under 20 years old
Over the past 40 years there has been little progress in improving these statistics, and funding for one of the most prevalent forms of childhood cancer remains incredibly low.
I was (and am) lucky that my tumor is a slow-growing glioma, and more characteristic of an adult-like tumor. Many kids though are not as lucky…and that is unacceptable.
I want to live in a future where that father and his son don’t have to face the long-term uncertainty that my family and I have (…and continue to) face, and thousands of kids with brain tumors (…and their families) face today. In my lifetime, I want there to be more certainty for these kids and their families. When those families finally do arrive back home, I want them to be able to put their concerns behind them, rather than having the lingering, gut-wrenching feeling that it may just be the beginning of a long journey.
…As the father finished talking about their treatment plan, my name was called, and I left the waiting room overcome with a nauseating sense of relief that I didn’t have to serve as a reminder of the reality of a brain tumor diagnosis. I don’t want to have to hide away from these conversations though, and parents shouldn’t have to face this excruciating reality.
That is why for the Boston Brain Tumor Ride, I am doubling my team’s commitment to $20,000. In addition to the National Brain Tumor Society’s Oligo Research Fund, our team will now be supporting their Pediatric Initiatives. It is our hope that this money can help catalyze research for Oligo and pediatric tumors in order to develop better treatments, and one day find a cure…a day when there is finally some certainty for patients and families impacted by brain cancer.