As I march into my third Brain Tumor Awareness Month today as a mother of a brain tumor survivor and an advocate for all pediatric survivors and their parent-caregivers, I have come to the realization that I am simply not feeling it this year. I am at a low in this journey. I will refer to it as battle weary.
While surviving is the ultimate goal in treatment, I have seen first-hand that survival of brain tumors come at a cost both literally and figuratively. We, as parents, are constantly seeking answers or hoping for a better way. From gluten-free, dairy-free and carb-free diets to supplements, the right cocktail of meds, essential oils that promise results, natural remedies or alternative therapies — all these attempts to fix this come at a price both in dollars and dashed hopes.
In the last three years, we have gone from doctor to doctor, therapy to therapy and product to product and we still haven’t found what I’m hoping for — the cross over from Alex simply surviving to Alex thriving. I think, in a way, its gotten more complicated. My constant hope is to find a band aid that sticks. One that holds it all together and gives us our sweet, well-behaved and vibrant boy back without all the physical and behavioral challenges that have come post treatment. But I’m learning there is no band aid sticky enough to cover brain damage.
I try to hold on to hope even in my darkest moments and work to keep in mind that we have seen some beauty in this journey. Prayers offered up by strangers, people dedicated to supporting this foundation, the ability to connect with so many people that share this experience that I may otherwise have never met — these are the things that get us through.
And then there is our old reliable — the i-STAT. Brought to us through the sheer goodness of others and Alex is now two years without any significant hospitalizations in part to our ability to rule out sodium issues when things seem “off.” Staying out of the hospital is one step past simply surviving into thriving. And we are blessed to be able to help others get this peace of mind.
In the past year, we have been able to deliver three i-STATs to families, two more than we planned on in our first year. We are working to identify more families that can benefit from the device and have been able to stockpile a few for emergency cases. I am also happy to report that Abbott, the manufacturer of the device, has expanded a program that makes these more available to patients that could benefit from using them outside of a hospital setting with a doctor’s prescription. We are working to help our pediatric brain tumor patients with DI get into the program while providing support in using it as part of their care management plan.
We also are putting on an art exhibition to showcase the talents of patients. Art is a form of therapy for many that battle the after effects of brain tumors and giving them the opportunity to show off their creativity and get recognition is our way of spreading awareness.
Barack Obama once said “I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting.”
As we come closer to the three year anniversary of Alex’s diagnosis, while I am battle weary, I remain hopeful that we will find the answers to help him thrive. At least I will continue to seek them. Most all of the moms and dads who share in our experience keep reaching, keep working and keep fighting daily. Hope is our biggest weapon in this battle. Hoping for the breakthrough moment — whether its the acceptance of what is or finding a good answer to what if.
This isn’t the year for me to do a media tour or push t- shirts or glorify the cause but to tell you the real story. Simply put, brain tumors suck. I am mad that Alex has to endure the challenges he puts up with. I’m mad that we lost our normal life before diagnosis. Sometimes I’m mad that it was my kid and not yours. 13 other kids will be diagnosed today. 13 families that will either lose their child or face the life sentence of dealing with the aftermath and some will walk away unscathed with a story to tell. I don’t think there is enough money in the world to cure brain tumors so we need to find better treatment methods and better long-term support plans to help the victims not just survive, but thrive.
