What does it mean to have a child diagnosed with brain cancer? Quite simply, it means our life is forever changed.
The week before our son was diagnosed, we were unpacking from a camping
trip, trying to get back into the swing of back to school and looking
for answers to the mysterious headaches that Matthew had been having for
6 weeks. I remember I was stressed because I was behind at work and
our schedules were filling up with football practices and dance class.
One week later, on September 7, 2012, we finally got answers ….but not
the answers we were expecting. Our son was diagnosed with an inoperable
brain tumor called diffuse instrinsic pontine glioma (DIPG). The
prognosis for this type of tumor is poor, with the percentage of 3 year
survivors in the single digits.
In that moment when the doctor delivered the news, our life as we knew
it ended and we began a new life. Cancer life. When you’re told “this
is as bad as it gets….he’s got a long hard road ahead….” lots of things
go through your mind. I can remember breaking the news to my cousin and
sobbing into the phone “I’ll never see him get married. He’ll never
graduate high school or drive a car. How can this be happening to us?”
At the time I couldn’t even comprehend those concepts. As I type these
words today, I still can’t comprehend those concepts.
Cancer life involved our moving to Seattle for 8 weeks and living at the
Ronald McDonald House while Matthew underwent radiation treatments and
chemo to shrink his tumor. Our daughter lived with my husband’s parents
while we were gone and we got to come home on weekends to see her. It
was hard on our whole family and as a mother I felt horribly guilty
every Sunday when we had to leave her for another week. At the same
time, I loved the one on one time we got with our son. I loved our
afternoon naps and being able to devote 100% of my time to him. My
husband and I both took leaves of absence from our jobs so we could be
there for our son. Luckily we have amazing friends who took care of our
home, animals and anything else that came up while we were gone.
As the shock of Matthew’s diagnosis wore off, sheer panic set in. We
began to realize that we couldn’t fix this. We were completely
helpless. I don’t think there is any worse feeling as a parent than
knowing that we can’t make this better. For me, it’s the most difficult
part of this whole journey. This boy who I gave birth to is going to
die from this beast and I can’t save him. It’s the one thought
guaranteed to drop me to my knees and paralyze me with anxiety.
The day after Matthew’s diagnosis as I was feeling terrified and
completely out of control, I received a piece of wonderful advice from a
physician friend of mine who treats cancer. She told me “you don’t
know how much time you have, so go and make memories.” That became our
mantra. We made a conscious decision on that day that we were going to
make the best out of our time together. We could sit around feeling
sorry for ourselves and drowning in despair, or we could choose to live
our lives.
We have learned to appreciate even the simplest times that we get to
spend together. When some moms complain that their child didn’t make
the tournament baseball team, I’m thankful beyond words that my child
lived long enough to play baseball this season. While some moms are
frustrated because their child didn’t make it into the accelerated
learning program, I’m just happy that my son is still able to attend
school full-time as he continues on chemotherapy and struggles with the
side effects that the radiation to his brain has left him. This brain
cancer diagnosis has given us a crystal clear perspective on our life
that I’m pretty sure we never would have had if this didn’t happen to
us.
There are so many negative aspects to this horrible brain cancer journey
that we’re on. But there are some wonderful things that we’ve
experienced. We’ve been touched by a generosity that we never knew
existed. We’ve learned to take nothing for granted because we know all
too well that it can be taken away from us in a heartbeat. We’ve made
wonderful friends on our journey….and we’ve cried as we learned that
some of our friends have lost their fights.
Tonight, as I finish this, I have just un-packed from another camping
trip 8 months after our son’s brain cancer diagnosis. The stress in my
life is much different than the stress I had previously. Yes, our life
is forever changed. I would gladly trade the crystal clear perspective,
the taking nothing for granted and all the wonderful things we’ve
experienced to go back to our old life. The old life where I didn’t
know anything about brain cancer and the stress in my life was caused by
busy schedules and meaningless drama. Unfortunately, we don’t have
that choice. So we’ll continue fighting. And living. And
appreciating. And making memories. Because although we can’t control
the fact that cancer has changed our life…..we can control how we choose
to face this journey.
~ Nikki Austin
No comments:
Post a Comment