Hello everyone.
My name is Kim Wallgren and I am the Executive Director of the CERN Foundation, a program
of the National Brain Tumor Society.
And I am delighted to introduce my parents, Janice Mathile and Dallas Mathile.
Thank you, Kim.
It’s such an honor to be next to a person that has been on this journey 18 years and
you have been on the journey with us that we can come to you today and say there are
long-time survivors.
I’m so grateful that one of the best decisions that Dallas, you and I ever made was to go
to a center of excellent care.
It was so hard to get the diagnosis of having a brain tumor and then you’re thrown into
this world that you just don’t know, and you have to make all these decisions.
We always try to get doctors that will be part of our team.
I call it team Dallas because it is so big.
I mean, it’s so complex but having doctor’s that really care about the overall person
here has given him the best quality of life that he could have, and I think I speak for
our family, it affects the quality of our whole family life.
Well, I, when I first realized or found out that I had a brain tumor, I was totally put
out by the fact that I wouldn’t be able to survive it.
But then I found out that I would probably be able to survive it.
I was so excited about the fact that I had people that understood the disease.
And people that would work very hard.
So, I was so afraid and so scared early on and now I am not as afraid.
I have more confidence about doctors and the hospitals.
Through these last 18 years, we’ve had other medical issues and I think as a caregiver
and I say I’m a co-survivor with Dallas because you have to be the person advocating
for this survivor because when they’re very ill, it’s like Dallas’ brain just shuts
down.
The anxiety and stress on his body goes immediately to that weakness which is where the scarring
occurs from the surgeries and treatments.
I think that rare disease, I’ve learned, that rare disease presents unique challenges
that extend well beyond the clinical setting.
I think there’s a great weariness that comes with this new responsibility to be in charge
of knowing about this rare disease.
And, it’s an added weight that families go through because there’s a sense that
you need to, almost overnight, become an expert so that you can seek out this, the care, that
will help your loved one.
Very quickly, you learn about things you were never prepared for so, it adds a sense of
unsettledness when you have someone caring for you that doesn’t know how to pronounce
your disease or doesn’t understand really what’s going on in the research setting
and so that all kind of builds into the experience.
And, finally, I think there’s a global sense of loneliness that follows patients and family
members through this experience.
These feelings of isolation, to me, highlight even more the importance of the physician
and patient relationship.
That validation that what we were going through that we haven’t just lost our minds.
That there’s not any answers out there that we haven’t uncovered.
That validation from our expert team was just, it still is, invaluable.
Learn more at: cancer.gov/nci-connect.
Contact us: nciconnect@mail.nih.gov – (240) 760-6530.
U.S. Department of Health & Human Services – National Institutes of Health – National
Cancer Institute.
cancer.gov. 1-800-4-CANCER.
Produced October 2020.