September will always be Childhood Cancer Awareness Month

September will always be Childhood Cancer Awareness Month.

I was diagnosed August 24, 2013 with Leukemia.

I was treated in-patient until late September that year.

I was in too deep to know it was Childhood Cancer Awareness month- but I was keenly aware of what it was like to be a child with cancer.

Aware that kids like me get way more leukemia than typical kids.

Aware that a hospital can come to feel like home, and that home can come to feel like solitary confinement- because Mom didn’t let me leave much over the two years of treatment- except for hospital trips and Mass (where we’d sneak up to the choir loft so as not to get germs from highly populated places.)

Aware that steroids taste yucky and not even chocolate ice cream can cover up the taste.

Aware that spinal taps can come to be normal, and that blood transfusions are pretty close to the most generous gift one can give to another person.

In time, I’d be aware that only 4% of the taxpayer-funded National Cancer Institute’s annual budget is dedicated to Childhood Cancer- and that only 1% of the American Cancer Society’s budget goes to help the fight against cancer for pediatric patients.

I was made aware that people I never thought even knew about me were praying for me. I was made aware of the huge capacity for human compassion and I was the lucky recipient. I felt lucky having cancer. I was afraid that having Down Syndrome made me unlucky- but this cancer that came on that extra chromosome- brought love to me and prayers for me. It was an unexpected precious time for my family and I to be “stuck” together in our house- to get to be together like on a camping trip or a retreat. Thanks to cancer, the love they had for me grew. Afraid of my initial diagnosis, but now desperate for my survival, cancer made things change for the better. How odd.  The cancer was the side show and LOVE was the main event. The kids at my brother and sister’s school wore bracelets about leukemia - that said No One Fights Alone. They too got supported in this journey. We had friends bring us food, clean our house and many many philanthropic childhood cancer organizations send support each in their unique ways.  

There are some pretty special things that happened during my cancer journey.  Cancer for me for sure was no fun -as a toddler- so young and so desperate to understand my new normal, but out of the ashes grew many good things. I got better, the doctors and nurses were nothing short of amazing. I am cancer free now and this November I’ll be able to say that I’ve been cancer free for four years. I may not even remember my cancer because I was so young, but my family won’t soon forget the main event. (The love, not the cancer.)

We try to give back- because we were given so much. We are following the other childhood cancer families before us- participating in the fundraising where we can because it is so needed, when funding for kids with cancer is so low and the medicines are so old. We encourage blood donation as surely the gift of blood was given to me over and over and over. We like to work with Make-A-Wish and Give Kids the World as they helped to close the chapter on my cancer experience, and we want other kids to have those healing, resetting and rewarding family times too.

Thanks to everyone who was there supporting me when I was so so sick, and thanks to those who continue to help with us give back for the kids who just today were given a cancer diagnosis, or maybe it was last week, last month and maybe it will be given tomorrow. We want to be there to help and we’re grateful for those who can help with us.

September, to some, may be all about “Back to School” but for me it’s also about back to life.

Here are some pictures of the things I did the last few weeks: my Make-A-Wish walk, back to school pics, summer pics and a few cancer-days flashbacks.

God Bless.