September is Childhood Cancer
Awareness Month. It's more than halfway over and I haven't acknowledged it. I
haven't posted appeals for blood donations or charitable contributions for
organizations that serve kids and their families who are fighting. I haven't
told you the shocking statistics about how many children are diagnosed every
day, or about the shamefully low percentage of total research dollars spent on
childhood cancers. I haven't shared the horror stories of death rates or
late-term side effects on kids and their families. I haven't shared the stories
of kids I've been following online - on Facebook and blogs like this one who
are dead. Gone. Whose parents and siblings had to wake up this morning to
another day without their child, their brother or sister. I haven't "gone
gold" with my Facebook profile picture or anywhere else.
There is so much pain in childhood
cancer so I understand why even I spend a lot of energy running from it. Late
at night when my chicks are sleeping I huddle over my glowing phone and read
the stories of kids in the thick of the fight, and cry for the ones we've lost,
and feel so much guilt for all the work that must be done that I haven't
contributed to yet. But when I wake up I look at my girl and I focus on the day
ahead. I try to forget about my late-night reading sessions and my lingering
fears. I get lost in my work and my driving of children all over, back and
forth, morning and afternoon, and the dishes and laundry and grocery shopping.
But 19 days into September I guess I
need to get some stuff off my chest. To at least give you a little information
so maybe we can each in our small way start to chip away at the mountain of
challenges between us and a future with more hope for kids with cancer and
their families.
* Each year in the United States
15,780 children are diagnosed with cancer - that's 43 children every
day. Forty-three times a day a doctor sits down and delivers that
horrifying news to parents. It's almost certainly the worst news they have
received to date - and somehow, impossibly, it has opened up the possibility
that someday they might get even worse news, that the bar for the "worst
news ever" has actually moved. How does the world not collapse in on
itself from that much sadness entering the world every day?
* 1,960 kids die every year. Cancer is
the number one killer of children by disease.
* The "cure" rivals the
disease: 2/3 of childhood cancer survivors face moderate to severe health
problems or chronic side effects from their treatment. Within 30 years of
diagnosis, 35% will die. That means that many of the kids who are "cured"
end up with heart or liver or kidney failure, with secondary cancers caused by
the chemotherapy or radiation -- fatal consequences of their cure that cause
them to die before they turn 50.
* Since 1980, three new cancer drugs have been initially approved for children - THREE. The protocol we followed for Hope is basically the same as the treatment protocols used in the 1970s.
* Of the $5 billion spent on research by the National Cancer Institute, less than 4% is spent on childhood cancer research. FOUR PERCENT.
Just in the last few weeks three kids I've been following from afar have died: Lacey, Ty, and Jack. If you're the praying sort, pray for their families. Pray that the people close to them will provide them with comfort and the space to grieve and rage and then very slowly pick up the pieces that are left and figure out how to keep living. I have no idea how they will do it.
So what should we do? I find the statistics numbing and the crisis paralyzing. But here are a few ideas, and if you will agree to try some of them, I promise I will too:
1. Contact your members of Congress and tell them what you know about childhood cancer and that we demand #morethan4. Find out how to contact them here.
2. Give blood or platelets (like my
amazing sister-in-law Joy who is a regular platelet donor). Find a local blood drive.
3. Call a local hospital that treats
pediatric oncology patients and find out if you can order dinner for families
who are in-patient, or drop off coloring books and markers, or play your guitar
in a common area some afternoon. Gifts of time and talent that let kids and
their families know that they are not forgotten by the outside world - they
make all the difference.
4. Make a donation to any of the
amazing charities that support research and/or kids with cancer and their
families: Make-A-Wish, Alex's Lemonade Stand, Casey Cares, Believe in Tomorrow, Forever Fierce Foundation, The Young and the Brave. Or if you
want to support families in the Baltimore area who have children with Down
syndrome and leukemia, you can make a donation to the Chesapeake Down Syndrome
Parent Group and earmark it for the Amanda-Hope Medical Assistance Fund. Mail it to: CDSPG, PO Box 20127, Baltimore, MD 21284-0127.
5. Talk about it. Tell people about
kids you know who have or have had cancer. If we only whisper about childhood
cancer, if we run from the fear of it, if we can't face that mountain, we'll
never get over it. The world turns completely pink in October. People put weird bumper stickers on
their cars about ta-tas and buy yogurt with pink lids. We talk about survivors
and those battling breast cancer - we race for a cure and debate the causes,
the latest treatments, the best courses of action. And while obviously there is lots of room for improvement, there
is also tons of research. And that's what we need for kids.
