Lessons from a childhood cancer patient’s father

Just over three years ago, my son, Damon, now 12, was getting a hug
from his mom when she noticed a lump on his left arm. She took him
straight to an urgent care center. After an X-ray, they were sent to
an emergency room.

That’s where they got the diagnosis: bone cancer. Damon was immediately transferred
to a pediatric hospital, where we got a clear picture of what we were
up against: osteosarcoma, a rare and aggressive a cancer that
typically appears in children and adolescents.

The time since then has been a whirlwind. After treatments, doctors
have twice declared there was no evidence of disease in Damon’s body.
But both times the cancer returned a few months later. We’ve dealt
with chemotherapy, limb-salvage surgery and later an
amputation of his arm. We’re now waiting for a clinical trial to treat metastases to his lungs.

Obviously, our whole family has been through a lot during the past
few years. Though it’s been tough, there are few things we’ve learned
about fighting cancer along the way.

Be willing to include your child

Every child is different, but for Damon, not knowing what was
happening was worse than knowing. When we first started our cancer
journey, Damon’s mom and I were having hushed discussions and private
meetings with his doctors. This scared him quite a bit. When we
offered him the chance to be part of these conversations, he took it.

Having Damon involved in all the meetings and decisions hasn’t
always been easy, but it has been better than the fear of the unknown.
It’s also helped Damon mature into an amazing and amazingly resilient
young man. When we learned we’d have to amputate, his mom and I cried.
He just said, “I’d rather hug you with one arm than have you bury me
with two.” I don’t really know or understand how he stays so pragmatic
about all that’s happened, but including Damon in the conversations
with doctors was clearly the right choice for our family.

Do your homework

Damon’s mom and I have worked hard to learn as much as we can about
osteosarcoma in children.  We need to know what we are up against and
how it can be treated.

That’s why it’s important to read all you can and write down your
questions for the next visit with your doctor. MD
doctors have been instrumental in educating us and
telling us where to get more information. They’ve given us printouts
or names of websites where we can conduct research.

Learning about Damon’s cancer has empowered us. For instance, when
Damon’s pain became a problem, we were able to have a long
conversation with his care team about the cause of his pain and
treatment options. After some back and forth, we settled on a new
medication that’s been a big help.

Ask the hospital for help

Having cancer, or watching your child go through it, is lonely. You
feel you have to take on the world by yourself, but you don’t. Don’t
be afraid to ask for help. It can come in many forms. You could get
financial assistance, help with transportation or housing, or
something else. Your hospital has a team of people who are there to
offer support. Let them be there for you.

Keep a journal

Many times, Damon’s doctors have asked when he last had
chemotherapy, or what the results of a recent blood test were. Having
that information at your fingertips is a big help. That’s why we kept
a journal and recommend others do, too.

Include all the dates for your doctor visits. Write down the results
from the most recent round of tests. Log chemo dates and types. Having
this information on hand has helped us on numerous occasions.

Cancer isn’t easy for anyone. It certainly hasn’t been for us. But
by understanding what we’re facing, working together and staying
positive, we’ve been able to manage our cancer journey. If anyone else
takes this advice to heart, my hope is that they’ll have the same results.

Request an appointment at MD Anderson online or by
calling 1-877-632-6789.