I want you to know that Sam is alive.
I want you to know that we're "fine."
I want you to know that Sam sleeps peacefully, and comfortably for a few hours at a time, and then he stirs and makes simple, whispered requests for food, positioning changes, and trips to the bathroom that we struggle to understand.
I want you to know that if you had told me that he would go from eating sitting up in a chair unassisted, walking with help, and standing at the toilet to pee, to not even being able to hold his head up and peeing in a diaper in less than 24 hours I would have told you to go fuck yourself.
The hardest part is watching Sammy, my vibrant, active, smart, creative, compassionate, 8-year-old, be altered by this killer.
The hardest part is not being able to honor his requests. "Can we get up and start our day?" "I need to go pee." "I just wish everything was normal." "I want to go home." This-lying on the couch all day, sleeping, taking sips of soup and tiny bites of McDonald's soft serve ice cream (McFlurry)-is our day, baby. It's okay to pee in the disposable pants (diaper), Sammy. I wish for that too, Little Guy. We are home, sweetheart.
The hardest part is knowing that this will not end with recovery. There will be no awakening beyond the half-open eyes we see now. There will be no physical therapy or occupational therapy or speech therapy or IEP or...
I also want you to know we are grateful for your help, and we are comforted to know that you are holding us all in your hearts.
Please remember that there is still so much work to be done in the childhood cancer arena. While I am still mothering Sam I need you to continue that work for me. Raise awareness. Tell people childhood cancer is not rare (1 in 300 kids will be diagnosed. And if you think I'm being alarmist, Google, "childhood cancer blog," and start reading). Tell people childhood cancer research does not get enough funding from public or private sources. Tell people we need treatments specifically for kids that are effective for their cancers and less toxic. Refer them to Alex's Lemonade Stand Foundation for information and ways to help. Send them over to The Truth 365 for facts and an action plan. Tell them to check out St. Baldrick's.
Whatever you do, please check out an organization before you start donating, volunteering or referring other people to it. Check them out on Charity Navigator and figure out how much of the money they raise actually goes to childhood cancer research.
Whatever you do, don't support the American Cancer Society as a means to supporting childhood cancer research. Please read their report and this article.
If we arm ourselves with anger, information, compassion, and vulnerability, I believe we can make a difference.
Remember Sam's song, Rocket Ship, by Chris Beland? Here's the video.