Down To The Bones: Survival When a Child Is Diagnosed with Cancer
By Julie Luek on August 02, 2013
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My calendar has become my Bible this past month. In it, written mostly in pencil, are days filled with doctor appointments, meetings with specialists, and surgeries. If they were for me, I would gladly bear it. But they’re not. They’re all for my son. At 22, he'd just graduated from college and, with his hard-earned diploma in hand, was ready to launch his dreams.
Image courtesy the author.
The dreaded "C" word -- it strikes fear into our hearts, but its clutches are even more icy and cold when they are about your child. Your child who should be only thinking about getting his first professional job. Your child who is in love and wants to only think about the future. In a world where the glass is half-full, we are thankful for his diagnosis of Hodgkin’s Lymphoma, a rare form of cancer but one known for its high cure rate.
Most days, I live by the scratches in my calendar. My life’s role has become one of a personal secretary. I keep records of medications, speak with doctors (once he has given permission, since at 22 he is legally an adult), keep a record of the phone numbers and addresses of specialists -- there are radiologists, oncologists, an ear/nose/throat specialist, his surgeon, and the cardiopulmonary specialist. Burying myself in the tasks is a relief. It feels like a construct in a world that is sorely lacking any kind of stability right now.
I think back to when my father died. We found, if not comfort, at least relief from the pounding emotions, by talking about burial or cremation, arrangements with funeral homes, choice of songs for his service, eulogies and speakers. There was a dulling busyness in these tasks. We got down to the bones of what must be faced and ignored the sad ache of the flesh. It is same with all the lists I make of appointments and medications I tediously keep; I find solace in their mundaneness.
What can we do for you? Please let us know. We hear this a lot from dear and concerned friends. I just stare at them blankly. I don’t know. Can we bake you a meal? I think about that, wanting to offer them a tangible way to help, but really it’s not me who’s sick. I’m quite capable of cooking a meal. ;No, thanks. I think I have that covered.
Last week, a friend from church made my son a cheesecake and put a note on it: For you to share with whomever you wish. We all laughed at her note and appreciated her thoughtfulness. Fortunately, he was generous. Her pie is delicious. Another friend, my roommate from college, sent a big box of gourmet cookies directly addressed to him. And again, he was inclined to share. His illness is going to make me fat. I'm glad they didn't ask what they could do and just did. I'm reluctant to give up the bones, otherwise.
Just when I think I'm getting used to the routine and putting off the horror, a little piece of reality pumps life to the flesh. Yesterday, he had a short out-patient surgery to implant the stent that will be used to carry the healing, poisonous cocktail of chemotherapy drugs to his system. The bump in his chest, just beneath his flesh is a harsh reminder of what he has yet to face.
He wants to just carry on with his life. Last night, just hours after his surgery, he went out with his buddies to eat dinner and hang out. I fretted and hovered too much. I could feel his annoyance, even as he tried to be kind and patient in his responses. Isn't it too soon after your procedure to be out?
I forced myself to back off, give him space, remember that even though he will always be my baby, he is 22, and he really just wants to live as normally as possible. This morning, when he got up bright and early to go fishing, I just mumbled a sleepy, have fun, see you later. But I couldn't help myself; I still felt compelled to ask how he slept.
We have more procedures and appointments in the next two weeks, all designed to “stage” the cancer, so the doctors know exactly how much chemo to administer and when to begin the radiation treatments. As much as they are difficult to endure, they are a relief. They are the bones in my calendar, the distractions keeping me busy. In two more weeks, the busyness will stop and the steady, every-two-week chemo treatments will begin. Then my flesh will grow back and I will feel. I will become a care taker when he is sick. A chef who tries to find a soothing meal that will stay down. I will shave his head. And my heart will break.
What can we do? How can we help? The one thing I want more than anything, is the one thing no one can do for me. The bones will fill out, and the flesh will carry the rawness of what must be endured.
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