Before April 2015, I couldn’t have told you when Childhood Cancer Awareness month was; in fact, I had little visibility to the fact that children had cancer. My mom and dad are both cancer survivors, and I’ve lost two aunts to it. But children? Sure, I’ve seen fundraisers with pictures of adorable, skinny bald headed kids, but like a lot of other parents out there, it never occurred to me that it could be my child. It never occurred to me that I would need a fundraiser because the cost of travel, time off from work (if you are even able to keep a job), and treatment can add up in a blink of an eye.
And then it does. It happens. All of it. An ache or pain that doesn’t go away morphs into a terrible diagnosis. For us it was Stage IV High-Risk Neuroblastoma. Suddenly, my child became that adorable skinny bald headed kid. Now I have insight into the pain and suffering that causes the weight-loss and baldness. Now I have a date of diagnosis engrained into my mind like other parents who have a child fighting cancer.
Life is divided up into two segments: life before April 22, 2015 and life after April 22, 2015.
As I write this, my son and I are sitting in Room 15 on the 6th floor at UCSF Benioff Children’s Hospital. This is our eighth hospital stay in four months. While we live in Reno, all of the treatment is at UCSF because Reno doesn’t have the doctors or facilities to treat most forms of childhood cancer. My son, Jackson (aka “Fighting Tiger”) is enduring his fifth round of chemotherapy like a champ. This treatment in addition to the other four other rounds of chemotherapy, a stem cell harvest on his 12th birthday, and a grueling 17 hour tumor resection surgery that left him without a kidney sometimes feels like all we can bear.
The cocktail of drugs in this fifth round is leaving him extremely nauseated so instead of working, I’m reading him The Complete Sherlock Holmes by Sir Arthur Conan Doyle to distract him. I could have thought of a hundred other books that would be easier to read to him than an 1100+ page book written in the late 1800s but as a parent you do whatever it takes to make your child feel better so 19th century old-English it is.
After diagnosis your life changes dramatically. Your set of friends expands to include other parents that are enduring what you are enduring. You spend more time on the phone with your pediatric oncology nurse than your best friend or your mother. You become a nurse and a pharmacist. You learn how to flush a Broviac every day and draw blood work. Days in the hospital can morph into weeks and you lose track of what day (or sometimes what month) it really is. My dear friend Erin told me one day while our boys were in the hospital at the same time that taking a shower in the morning makes a difference. Thanks to Erin, I reminded myself to take a shower this morning. If you have other children like Erin and I do you are suddenly relying on friends and family to help raise that child because you are so stretched physically and emotionally; everyone chips in because they want to help.
Even though this childhood cancer diagnosis seems like the most unfair tragic nightmare that could ever happen, I’ve also experienced the most overwhelming generosity from others. Neighbors have maintained my lawn and gotten my mail. Friends have stocked my refrigerator after a 3 week stay in the hospital. They’ve feed my family week after week. Friends have taken my younger child on a moment’s notice when my older child has ended up in the hospital unexpectedly.
Strangers have made donations to your fundraising campaign just because. The checker at the grocery store has hugged me when I’ve stood there with tears in my eyes. Everyone, and I mean everyone, wants to help. And you let them because it makes your life easier and your heart swell. You feel supported. You have hope. You are not enduring this alone.
I’m going on and on about how this affects me because it breaks my heart to write about how it affects Jackson. How angry it makes me that my sweet and kind 12-year old son is missing 7th grade with his buddies and baseball to endure a 14-month treatment plan. But I get my strength from him. He knows he’s going to beat it and it’s just a matter of time until we have a scan that shows “No Evidence of Disease.” Jackson gets through this with the support of his friends and family; the playdates at home when he’s feeling well enough for visitors and the connection with his friends playing multi-player video games when he’s not.
There are silver linings. I didn’t appreciate how much I loved my children until faced with this challenge. I had no idea how much support could flow in from friends, family and strangers. I didn’t realize how brave and strong Jackson was until I watched him endure treatment with a smile on his face. Most 12-year old boys are pulling away from their parents and venturing out into young adulthood. Right now my son is soothed when I rub his back or kiss his forehead. In his hospital room I roll my bed alongside his and we sleep (when the nurses aren’t waking us up!) holding hands. While everything about childhood cancer is unfair, I have the chance to cherish my little boy a little longer.
About Megan Bowen
Megan Bowen is a mother of two, Jackson and Cailin, and one crazy dog named Molly. By day, Megan works as an attorney at a financial services company. She is an avid runner, and loves to read and travel (when she has time)!