By Lisa Buell —

We sat in a room that no parent wanted to be in. The lighting was low; the walls were painted a soft mauve color, a weak attempt to calm our nerves.  The gesture felt irritating, as if the color of the room could magically erase the image of our five-and-a-half month old baby girl lying on a table before us, a catheter in her urethra, a needle in her arm, and my breast in her mouth to soothe her through the harvesting of fluid and tissue.

Afterwards, she slept in the arms of her Auntie Mona, lulled to sleep by the noise of the outside lobby. The nurse, popping her head into our room excitedly saying, “Dr. Marina will be with you soon,” confirmed that this wasn’t just a bad dream.

I wanted to throw a brick at her, but I was still hopeful that “Dr. Marina” would come in to tell us it was all just a terrible mistake – that the large tumor in our daughter’s abdomen that could only be seen on a C.T scan actually gave her special powers to show people’s future mistakes …no more wars, crime, abuse, illness.

That little fantasy shattered itself against the mountain of my denial when Dr. Marina gave us specific information about the cancerous tumor that lay within our baby’s pelvis, that the 60-percent rate of survival was only for patients who stuck to the most aggressive of protocols and that they had never seen this type of cancer manifest itself in babies.

I continued to hold Dr. Marina’s gaze, unblinking, letting the tears pool into the corners of my eyes until they spilled down my cheeks. I imagined myself being swept away by the tide of tears, carried to an island of sanity where the sun warmed the skin and all the worries of the universe were held on the tip of a grain of sand that could be blown into the ocean.

My lungs filled with air to blow the grain away but words mixed with breath making a hissing: “Okay, where do we go from here?” I wanted to shove the words back to recesses of my throat, not acknowledge the truth of cancer. I didn’t want to hear the answer. I kept my eyes locked on our doctor’s… the unspoken promise to stay and fight forming between the blacks of our pupils.

There was talk of “pick lines versus Hickman,” of how many “sticks” a child would have if this technology were not available, and a physical example of the “port” was presented. Within days, the pure white port would be “temporarily” threaded under our daughter’s skin and into her vein, giving the poison immediate access to the cells that were multiplying out of control…even the ones that were supposed to.

“You can pick her up,” the nurse said as I stared at my daughter sleeping off the anesthesia, nestled in her wagon after the Hickman surgery. I stood frozen, paralyzed by the fear and shame that somehow I had let cancer happen to my child. “She’s still the same,” the nurse said.  It was a simple phrase, but oh so powerful. It helped me remember that this was my child!

At the same time, I felt the hum of hatred.  I was appalled by the fact that we had to put our daughter through multiple surgeries, and poison her body to the brink of death, in hopes of saving her life — when Americans had been putting men on the moon for decades! Where had we as a country put our priorities?  Inside I was screaming so loudly, I wondered if anyone else could hear. ?I wanted to hate someone other than myself.

I reached into the wagon, gently picked up my baby, cradled her little body, bare except her diaper.  I traced the little bulge on her neck with my finger; under her skin was “the key to success for cancer patients.”  Is that what she was now, a cancer patient? She still felt the same, her skin like silk, her body collapsing into mine, her breathing the same but with a little catch at the end like she had cried too hard and had finally fallen asleep.

It was good to hold her and I was glad she was sleeping so she couldn’t detect the apprehension I had, the shame I felt for being part of this violation. And yet this was just the start of the many ridiculously difficult decisions we would make for our child. Many of these had a short timeline, and we were continually weighing benefit versus burden.

She hadn’t changed; the tube was just a part of her, sticking out of her chest like a pull string on a little girl’s baby doll, except this string was attached to a real baby, my baby. We learned to clean the Hickman, flush it out, swab around it, dress it and secure it with tape. One tube with two ends, one for blood the other for meds.

“This is her lifeline, be vigilant, make sure it is accessed properly by everyone and that you clean it twice a week,” we were told. Her lifeline? I thought we were her lifelines.  “If it gets infected, we will have to pull it and put in a new one.” Pull it out and put in a new one? Was it like a transmission?

This was all so foreign and bizarre. We were to wrap two small pieces of tape around both ends of the ports, pull them up and safety pin them to the inside of her shirt. I felt like I was in the twilight zone.  Why on earth would you leave the security of the “lifeline” in the hands of a safety pin?  Was the bobby pin too busy to take on the job?

I remember back to the time just days before, when we stood in the room receiving the diagnosis and plan of care, when the doctors, nurses and social worker were filing out to continue their day as ours had just been decimated.  We were left to stand amongst the wreckage of our dreams, the glimpse of first steps, elementary school, graduation and grandchildren scattered beneath the rubble.

My partner Nancy (Madison’s other mom) clutched the notebook close to her hip, words scrawled across the page, the line of ink occasionally blurred with salt and water. We could never have known at the time what our future lives would look like, the emotional, physical, spiritual and financial places we would go to experience life.

Deep inside I knew it was going to be okay, that everything was going to work out. We even said it out loud, our voices blending together; it was a statement but felt more like a prayer.  In that moment, what we needed most…was to hold our baby.

Reach Lisa Buell, a parent advocate, through her website, www.partnershipforparents.org, or directly at lisa@partnershipforparents.org.