It’s still September, so there’s still time to go gold for Childhood Cancer Awareness month.
Seven years ago, I didn’t know that September was Childhood Cancer Awareness Month. That was 2012, the year my 11-year-old was diagnosed with inflammatory myofibroblastic tumor, an extremely rare cancer that tends to affect older kids and teens.
I’m now aware of childhood cancer in a way I never thought I’d be. I know that we commemorate this month with the color gold. I know far too many stories about kids that break my heart. I know that gold ribbons aren’t enough.
My daughter is a casualty of this disease and so is my family, but I had very little awareness of what a childhood cancer diagnosis meant before she got sick.
Once upon a time, I avoided looking too hard at personal stories about kids and families dealing with this disease.
My mind recoiled with fear. Aside from donating to high profile cancer charities around the holidays and occasionally giving to local families or sharing fundraisers on Facebook, I didn’t think too much about kids with cancer.
Still, I thought I was aware. I thought I understood. I was wrong.
When you have a child going through a serious illness, you don’t want people to look away. You want people to see you and see your child. It’s the only way to keep from drowning.
I’m not proud that I lived in a bubble of unawareness. When I finally couldn’t look away anymore, I learned about a lot of amazing kids. My world got wider, not smaller.
I’ve met parents who have taken this tragic diagnosis which often involves the loss of a child, and turned it around. They have chosen not to look away even after the fight has ended for their child.
Childhood Cancer Awareness Month is an opportunity to stand with these parents. It’s an opportunity for giving to this community who, let’s face it, you’re just one diagnosis away from joining.
There are many charities that help families who are in the midst of treatment, or are still reeling from the shock of a cancer diagnosis. Other charities help fund much needed research. I want to tell you about three of them.
The following organizations were all started by parents I know who have lost children to cancer. Two of them are focused on helping to fund much needed research, the third grants wishes to local children, helping make life a little easier for families in the midst of treatment.
Maddie’s Mark Foundation — Maddie had a rare and lethal form of brain cancer called DIPG (Diffuse Intrinsic Pontine Glioma). She died a few days after she was diagnosed. She was 5 years old. This amazing local New York charity was founded by her mother, Erin. Maddie’s Mark grants wishes to very sick children and (full disclosure) they redid my daughter’s room a few years ago, giving her a dream bedroom that I couldn’t possibly have afforded on my own.
The Benjamin Gilkey Fund — Benji was seven when he was diagnosed with a rare form of leukemia and underwent intensive chemotherapy for months. He died three years after diagnosis, when he was 9 years old. Benji’s fund was created by my dear friend, Laura Gilkey, and her husband Mike to help fund research at Johns Hopkins All Children’s Cancer and Blood Disorders Institute. To date, the fund has raised over half a million dollars, enough to fund their first trial which will bring a much-needed new treatment option for these vulnerable patients.
Maggie’s Mission is a New York charity focused on raising awareness about pediatric cancer, helping to fund research, and provide help to families affected by childhood cancer. The organization was founded by Donna and Steven Schmidt in honor of their daughter Maggie, who died from a rare pediatric cancer at the age of 17. Since its founding in 2017, Maggie’s mission has donated over $450,000 to Sloan Kettering, the hospital where Maggie was treated. This was enough to fund research for a new study focusing on Maggie’s specific type of cancer.
I truly believe that parents who have lost children to cancer are creating a better, more hopeful future for children with this disease.
They are helping families pay the bills, granting wishes for sick kids, raising millions of dollars to fund research for new drugs and treatment options, and reaching out to families who are recently initiated into this terrible club.
So, if you want to help make this battle a little easier, then please don’t look away. Research pediatric cancer organizations in your area, see how you can contribute — if not financially, then through volunteer hours or resources you may have that they need. Read the stories of the children these charities have helped or were created to honor and know that your attention, and generosity, are incredibly appreciated.