A couple of weeks ago I brought my son and his friend to see the Lego movie on opening weekend. He was stoked and I was reflective.
Imagine that, me being reflective . . .
See, I couldn’t stop thinking about a virtual friend I have, a fellow Cancer Mom, who was generous enough to share her child’s story with us as part of The September Series. My son was happy as a clam, excited to be with a friend on an outing, but also to sit in a crowded theater and enjoy a movie he had been anticipating for months. Months is a long time to wait when you are five years old.
My friend’s child was not so lucky. He would spend the day, the weekend, in a hospital bed in a pediatric cancer unit. No friends, no movie, uncomfortable, and unable to eat.
When I wrote Donna’s Cancer Story in 2011 there was a description that has really stuck with me:
Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what’s happening with your treatment. Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates. Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen. Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody. Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer. Some will live in Scarred Acres the rest of their lives.
I have heard from many folks who were struck by that description, as the truth of it resonated with them. All of them were fellow neighbors in Cancerville. If you’ve never lived there, it’s hard to comprehend. I know I certainly didn’t before I moved in.
In 2007, when Donna was in the midst of heavy chemotherapy, we spent a lot of time in the hospital. A lot of time. I added it up once and it well exceeded 150 days. Some of those days I thought I couldn’t stand another moment, I didn’t have the strength, I was beaten and worn, and, at times, bitter and resentful. Donna’s hospital, Children’s Memorial (now Lurie Children’s Hospital of Chicago), was smack dab in the Lincoln Park neighborhood. Groud zero for drunk college kids, 20 somethings on the make, and wealthy families whose children did not have cancer.
It messes with your head when you leave your daughter’s bedside, fear in your thoughts and terror in your heart, just to get a sandwich, and you are surrounded by people who are simply late for a meeting or joining friends for coffee or on a first date. It shakes you and unnerves you and you feel exposed and vulnerable and alone, terribly alone.
The city of Cancerville exists, parallel to Healthy Town. Don’t get me wrong, Healthy Town has its own problems. No place is perfect, no life without its problems. Healthy Town is no exception.
Now, while still a resident of Cancerville (a lifelong resident), day-to-day, I can enjoy some of the privileges of Healthy Town and I work hard to not take that for granted. I can bring my son to the movies, fear only rules some of my days, and the thing that keeps me up at night is missing my daughter, not monitoring her breathing, or administering an around the clock antibiotic, or checking the tubing on her IV that carries her nutrition, or cleaning up a copious amount of vomit.
The reason Donna Day exists, the reason I write about Donna and feature stories of childhood cancer is because that town of Cancerville is full of children and families whose lives are unimaginable to the average person in Healthy Town. It’s population grows by 46 every single school day. Yes, it’s getting crowded up here in Cancerville, cause once you move here, you never leave.
Funding for pediatric cancer research is abyssmal. Roughly 4% of the cancer budget of the National Institutes of Health is devoted to childhood cancers. A new medication, specific to childhood cancer, has not hit the market in over twenty years. Our crazy dysfunctional government actually passed legislation called the Creating Hope Act in 2011 to incentivize pharmaceutical companies to focus much needed resources specific to childhood cancer. Nothing has come of it because there is no money to be made. Not enough children get cancer for it to turn a profit for pharma to invest in, despite it being the number one disease killer of all children in America.
It makes me sick.
Donna Day is one way you can help. Our charity, Donna’s Good Things, has affiliated ourselves with the good people at St. Baldrick’s — the number one private funder of childhood cancer research. Some of Donna’s own doctors have received hefty grants from them. Since this campaign started (originated by a reader just like you), Donna’s Good Things has raised OVER TWO HUNDRED THOUSAND DOLLARS for St. Baldrick’s (hot diggity damn!) thanks in large part to our amazing shavees and to the compassionate bloggers that have championed Donna’s Cancer Story and encouraged their readers to donate.
Blogging works, yo, but it only works if there are readers and sharers and donors, like you. You. This vast Internet is full of some of the cruelest most awful things you can imagine. But it is also full of love and hope and charity and generosity. I see it every day. I am humbled by it more than you can even imagine. I believe in it, which is why I write these words and advocate for research for our children with cancer.
No matter where you live, Cancerville or Healthy Town, you can help. Here is how:
1. DONATE to the Donna’s Good Things shave event for St. Baldrick’s by clicking on the green “donate” button.
2. SHAVE your head at our event on March 29 in Chicago by clicking on the blue “join us” button.
3. BUY a St. Baldrick’s Super Hero t-shirt (just $14.99) for the kid or woman in your life who is your hero by clicking here. All proceeds between now and February 28 will be credited to the Donna’s Good Things campaign.
Thank you. As Donna’s Mama, Donna Day is a holiday for me — a virtual gathering of friends and supporters like you and so many amazing bloggers sharing their platforms to help #conquerkidscancer. There is no turkey or candy or presents, but there is the gift of HOPE for children and families living with cancer, survivors who are marked by their treatment, and those who have yet to be diagnosed.
We need you and are so grateful for you to see us and not look away.
Filed under: Pediatric Cancer