The double doors are closed to Three North at Stanford Children’s Hospital, where my daughter Madison is supposed to get her chemotherapy. It’s our second session, Maddy is seven months old sitting patiently in her stroller as I come up to the thick double doors.

This is a very bad sign, these door being closed. Maybe Maddy shouldn’t get chemo today. These doors haven’t been closed before, something’s wrong.

The hair stands up on my arms, a tingling sensation crawls up my back, sits on my head like a hat. My partner Nancy is down stairs jumping through the legal piece of admissions. Our strategy is for one of us to sign in while the other runs upstairs to hopefully beat the rush and secure a private room. The double doors block our entry, erodes my conviction.

Since Maddy’s last chemotherapy, I’ve been looking for any excuse to stop the “treatment.” The idea of tearing my baby open to remove a tumor that lay inside her pelvis, then injecting her with poison designed to kill all her fast growing cells in hopes of curing her of cancer is a torture too horrible to imagine, but here we are doing it anyway because it’s all we got.

Suddenly, as if by divine intervention the doors part. A child is being wheeled out the doors on a gurney. In spite of myself, I push Madison’s stroller towards the open doors; if I can steal past them without the gurney or the doors touching us, we we will be destined to have a successful stay in the hospital. The chemotherapy will attack Maddy’s cancer cells, her heart will continue to beat, she will not die today.

Rushing past the gurney, trying not to look at the child on top of clean white sheets, I can’t help but wonder where his parents are. The side of the heavy door almost brushes against my arm but I lunge forward and escape its touch.  I arrive at the nurses station breathless, just in time to get a private room.

The nurses comment on Maddy’s outfit. She is wearing her electric pink onsey with matching baby gauchos and of course her lucky hat with the lavender flower pattern. This too is calculated. Madison cannot be without her lucky hat. If during our hour long drive through the hills of Santa Cruz to Stanford Children’s, we were to notice that we didn’t pack Madison’s lucky hat, we would turn the car around or have to call for back up.

We must always have Madison’s lucky hat with us, the floral cotton fabric is all that stands between us and a long drop off the edge of the world. We use her hat to fight off the cancer cells that the chemotherapy misses. The lucky hat helps to guide the hands of the surgeon as he resects the tumor that grows inside Maddy’s pelvis. The lucky hat hangs on Maddy’s IV pole, ensuring the nurses give Madison precisely the right dose of fluids and pain medication.

Maddy’s lucky hat is all powerful. It calms our nerves in the evening when Maddy’s fever spikes, reminds us to breath, walks us through the protocol for fever and neutropenia.  The lucky hat is just one of the many touch stones we have that help us navigate the horrifying world of pediatric cancer.

We parents hold on to our talismans with dear life. We keep them in our pockets, on our shelves, in the glove box of our cars. We tape rose quartz stones to our children’s feet before we hand them off to clinicians for the cutting and poisoning. They are our symbols of hope when hopelessness presses against fear.  We can’t not resort to the unproven when proven methods aren’t one hundred percent certain. So we pray to whomever is listening, we hold on to our talismans, drink our elixirs, participate in healing ceremonies, beat our drums, burn our sage and hope.

Nancy and I carry the special binder the nurse gave us after Maddy was diagnosed. We’ve already packed it full of discharge orders, information on primitive neuro ecto dermal tumors, protocols. Between random pages,there are pressed flowers, handwritten notes from friends, prayers and poetry.

I open the book, a hawk feather glides to the ground, reminding me of our walk through the forest; Maddy taking in nature from the comforts of her back pack. Hope fills my chest that we will again hike in the forest, feel the sand between our toes at the beach and maybe, if we’re lucky, be able to swim together in the ocean. I survive these times in the hospital because of the touchstones and rituals I’ve created.  Everyday that my child breathes, I walk the line between spirit and science.  I give everything I can to fill in Maddy’s missing percentage.

Madison’s results were in and the surgeon was going to meet with us. The thought of sharing an elevator with another parent or hopeful relative sent waves of nausea through my gut. I stomped on Maddy’s cancer cells with every step I took until I got down the stairs to the waiting area that was bursting with our friends and family.

The doctor came out with Maddy’s results; there was no visible sign tumor. In my mind, Maddy’s sixty percent survival chances increased because I took those stairs. You can bet I took the stairs every time Maddy’s results were in. I didn’t want to mess with fate.

We are back in the hospital for yet another chemotherapy.  Here in the hospital cafeteria, I scan the chafing dishes for the Mexican casserole I  eat during Madison’s chemo treatments. It’s become yet another ritual, a way of grounding myself in this sea of uncertainty. I’ve never thought there might be a day that they weren’t serving the casserole. I don’t know if I realized how much I’ve counted on this casserole being here.

Today, the Mexican casserole is no where to be found, and there is nothing that can serve as a substitute, not even a quesadilla!  My heart races. The tuna melt, spaghetti, minestrone all seem to be saying: “You’re screwed.”

All the things I’ve used to right myself along the path of pediatric cancer get jumbled up in my mind. The floor is starting to fall from under me. I am desperate to ask the chef. I imagine what that conversation would sound like and decide not to. Know one else has to know how crazy I’ve become.

I bet hospital cafeterias don’t even have chefs. Do I think I am at the Ritz or something? Uh, oh; the berating voice inside my head has escaped from its box. It’s a matter of seconds before it reeks havoc on my physche. The double-dipped bin of chocolate malt balls calls to me like the drug it is. I want to feel anything but this, panic is not my friend.

I resist the malt balls, which is no small feat. Sugar has been my soul mate since I can remember, but I’ve remained sugar-free since Maddy’s diagnosis.

Fumbling for the smooth lavender stone that rests inside my pocket, I remember to breathe. Thoughts of Maddy’s lucky hat, the three prayer chains she is on, the fact that she is a strong little spirit infuses me with hope. They are all rungs in the ladder I am building myself. I climb from the bottom of my fear and despair, up to the surface where the light is clear and crisp. I take the stairs two at a time back to Madison’s room.

Part of me still wants to smuggle Maddy out of her cold metal hospital crib, but we have nowhere to go. Deep down, I know this is our best chance at beating the cancer. I stroke the side of Maddy’s velvety face, follow the profile of her nose with the tip of my finger. Next chemo, I will bring the Greek evil eye our friends gave us and place it above the hospital room door; we can’t take any chances.

Ten years after Madison died, the lucky hat continues to rest on the corner of Maddy’s picture. In the photo, she is three months old, pushing herself up from the sheepskin rug, looking right through the camera, with those dark eyes, into our souls. Below her picture are two more photos, the similar poses, similar faces, of our two babies, Delaney and Hayden.

They never got to meet their sister, but she lives in their hearts and the stories we share.  Maddy’s paintbrush still lays in front of a picture of her painting pots. Her tiny hand holds the brush so precisely. Memory rests beneath the layers of thick dry paint. Every talisman has become a concrete example of her life, jarring our memory as the cloud of time passes over.

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Lisa Buell

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents, as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care.

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