So, I'm a day late and a dollar short on this one, but I figure I should go ahead and post anyway. Cancer Support Community blog reached out to me and asked if I would write a guest blog post in honor of pediatric cancer awareness month. I was happy to! They ran a final version with two parents perspective just a couple of days ago, so I wanted to wait and let them get the post up first. You can see the post here:
Cancer Support Community Blog It was nice to be asked to share our experience! I am posting my original version below:
Pediatric Cancer Awareness Month
You
may already be aware that September is Pediatric Cancer Awareness Month. I
couldn’t be more aware, despite the fact that I’d much rather be blissfully
unaware. September has been everything awful about pediatric cancer to our
family. Our son Hans' first symptom popped up in September of 2006. He was
just three years old when he woke up one morning with a small bruise on his
left testicle. It would take a full
month for this and other symptoms to lead to his fateful diagnosis: Stage IV, High Risk Neuroblastoma.
Over
the course of his six-year battle with Neuroblastoma, each September was a difficult time.
Hans never got to have the typical "Back to School" experience.
It was a heart breaking balancing act of deciding whether to start
school or hold back, whether to bring a teacher to the house or send him into a
classroom. Theses choices were made
challenging due to the nature of Hans’ aggressive cancer and the multiple
treatment methods and clinical trials we had to employ to combat it, along with
their unpredictable and sometimes dangerous side effects. Like many kids
battling cancer, Hans never complained about his lot or the concessions he had
to make. But for me, September was a
showcase for the difficulties children with pediatric cancers face.
I grieved for Hans and his struggles each September, as well as each of his young friends who had lost their
battles and who wouldn't be going back to the classroom - so many empty spots
on the bus.
Ultimately,
after a six-year battle, we would lose our Hans to his cancer on September 21, 2012 at the age of nine.
Before
Hans was diagnosed, aside from a few St. Jude’s ads and billboards, we knew
little about pediatric cancer. An awareness
month is an excellent vehicle for sharing some of the most important facts
about pediatric cancers.
· Pediatric cancers can
happen to any child, as if out of the blue. Little is know about the causes of
most pediatric cancers and they tend not to be hereditary. Unlike with adult
cancers, there are few tests for screening and early detection. Cancer.org
·
43
children are diagnosed with cancer each day and approximately 15,700 kids will
be diagnosed in the U.S. each year. CureSearch
·
Pediatric
cancers are the number one disease killers of our children. More U.S. children die of pediatric cancer
than of any other disease/illness. St. Baldrick’s
·
Children’s
cancers are far less prevalent than adult cancers and so they receive much less
in research funding. Just 4% of the NIH cancer budget and just 1.4% of the
American Cancer Society’s budget goes toward pediatric cancer research. People Against Childhood Cancer PAC2
Facts
and figures aside, a pediatric cancer diagnosis can be brutally devastating, not
just for the child, but for the entire family.
When your child is diagnosed, your relationship with your community of
origin is forever altered. Friends and
families members may do their best to support you, but you will undoubtedly be
challenged by dark feelings of fear and isolation.
When your child is in treatment for a
pediatric cancer, your life becomes unpredictable and out of control. Symptoms like pain and fever can have you
racing off to the clinic or ER at all hours of the day and night. Your singular
priority becomes the basic care and survival of your child. And as a parent in charge of his/her care you
have to use every tool in your personal tool kit to ensure your child’s best
possible outcome. You will be
hyper-vigilante and on call 24 hours a day 7 days a week.
The only way to get through it is with a
lot of help and support. It can be the most humbling part of being human to ask
someone for something that you think should be obvious. But you have to be sure
to ask your friends and family for what you need. Tell a friend, “we need you
to come down and see us at the hospital, we start to feel all alone in
here.”
If at all possible, connect with other
families facing the same or similar diagnoses and make connections. You can
build a profound sense of community with families “in the same boat” as you,
and it will make you feel less isolated.
As Anne Lamott writes in Stitches, [we humans] are “social tribal, musical animals,
walking percussion instruments.” We
function better when we feel like part of a group.
Together, we can join forces and turn
awareness in action. After absorbing the impact of initial diagnosis and
getting our bearings, many families find a little bit of solace and meaning in
banding together and fighting back. We
can work together and enlist the support of others that love us, to promote
awareness, which spurs donations and funding for research and ultimately
cures.
As
for me, as difficult as it sometimes is, I tend to say “Yes” to almost every
opportunity I have to honor my beautiful son and his valiant fight again
Neuroblastoma. Throughout the year, but
most profoundly, each September it is
with great pride that I remember
Hans’ bravery, his great love, his beauty, and the zen-like state he could tap
into when he needed to get through difficult procedures or bouts of pain. I am moved by the resilience of children
fighting pediatric cancers, and of the ability of their families to endure and
persevere. And I know that there is
great power in what we can do when we come together.
