September is Childhood Cancer Awareness Month. I asked my dear friend Vanessa to share with you some of what she has learned in her journey as a mother to a child who has battled against cancer. So often when it comes to something as devastating as childhood cancer, we feel ill-equipped to do anything. Vanessa is here to tell us what anyone can do:
No one ever thinks their baby will get cancer. My son, Brock, was only eleven months old whenever I consulted with Dr. Google about the "tiny red pinprick dots" on his arms and legs. A list of symptoms of leukemia popped up and Brock had all but one.
On October 5, 2010, we walked in to The Children's Hospital at OU Medical Center and the doctors told us he had Acute Lymphoblastic Leukemia. He spent his first birthday in the hospital. And Halloween, Thanksgiving, Christmas, New Years, and Valentine's Day. After 119 consecutive days, we finally got to go home. We managed to stay at home 5 days before he had to be admitted to the hospital again.
The good news was that he had leukemia - the most common, most curable type of childhood cancer. Leukemia has an 85% survival rate. The bad news was that during his first round of chemo he contracted a fungal infection that spread throughout his entire body. That particular type of fungal infection has a 10% survival rate. We lived in the intensive care unit for seven weeks.
We came home with a one year old who could no longer roll over, crawl, walk, talk, or eat food by mouth. For two years we administered iv anti-fungal medication at home. He's had thirteen surgeries. Three and a half years of chemotherapy. Five years of speech, physical, occupational, and feeding therapy. Over 120 blood transfusions.
It's so hard to put words to the 4 year long journey.
Sadly, I did not know ONE THING about childhood cancer before my son was diagnosed. I knew that adults usually get cancer of the lungs, breast, colon, or skin. I didn't know that kids usually get cancer in their white blood cells, nervous system, brain, or bones. There are twelve major types of childhood cancer. They can't be treated like adult cancers. They need their own set of drugs and treatment plans.
The St. Baldrick's Foundation raises money for childhood cancer research and their infographic summarizes things better (and prettier!) than I could.
Even if I had known about childhood cancer, I wouldn't have known of any way to help. Here are some ideas:
The St. Baldrick's Foundation - Almost 80% of the money they raise goes directly to research. Those are outstanding numbers for a non-profit. Last year I, along with nine of my friends whose kids have cancer, raised over $60,000 and shaved our heads for St. Baldrick's.
CureSearch - Not only does CureSearch fund research, they also provide resources and education for families, as well as help children get enrolled in clinical trials.
Beads of Courage - They provide beads to kids going through cancer to symbolize everything they've been through. Kids get a bead for every night the spend in the hospital, every needle stick, every chemo, every surgery … Brock has over 1,000 beads.
If you'd like to give directly to the Beads of Courage program at the Children's Hospital in Oklahoma City you can firstname.lastname@example.org for more information.
Chemo Duck - This is a stuffed animal that has a central line or port just like kids going through chemotherapy. Brock loved his chemo duck. It was really special for him (and his sister) to have this tool for pretend play.
Super Sibs: It's really, really hard to be the sibling of a kid with cancer. Super Sib provides support for these special siblings. My oldest daughter, Jaycie, loved getting mail, books, and special gifts from the Super Sibs organization. So much that she requested a Super Sib themed birthday party one year.
Hi, My Name is Jack: I bet Jaycie and I have read this book a hundred times. It does an excellent job of addressing some of the feelings that kids have when their brother or sister is sick. It would be really special to buy some of these and drop them off at the local children's hospital.
Brock is five now. He loves kindergarten, playing soccer, and wrestling with his sisters. He's been off chemo for a year and a half. He's considered in remission but he won't be "cured" until he makes it five years off treatment without relapsing. Childhood cancer sucks. A lot. But you can make a difference, even if you don't know someone dealing with childhood cancer right now.