by Katie Oches, CCLS

I practiced child life for about a decade in pediatric oncology. I would show up each morning, swipe my badge, stash my belongings in our crammed child life office overflowing with random donations and expired medical supplies. I would turn on my pager and head to round with my team on the patients and families receiving care for the day at Duke Children’s Hospital. I made detailed notes on needs for my patients — introduction of services, plans for diagnosis teaching, procedural preparations and support, coping plans therapeutic activities, referrals, continuity of care, legacy building. I had discernment and intuition, feeling confident in my skills as a professional. I could have never imagined then that someday the script would be flipped, that my own baby boy, only nine months old, would be one of those discussed during morning rounds.

Bravery took on a new meaning, as I went through the motions of starting care, wanting to be anywhere but the present moment. Arriving at the hospital as a patient for the fi rst time was immensely humbling. We rode the elevator up to the same clinic floor I worked for all those years and checked in at the front desk. A hospital band was printed and taped around my son Jude’s chunky ankle. I looked around the waiting room at the other patients and families as we waited for his name to be called. The same waiting room I would meet patients in as a professional, attempting to form a quick rapport, trying my best to help them feel safe and welcome. Tears began to sting my eyes as his name was called. My husband and I gathered our belongings and carried our little boy across the threshold, guiding him into the world of oncology.

The terminology was all too familiar as I read over the resident’s shoulder: mass, further imaging needed, suspected retinoblastoma of the left eye, ophthalmology referral, ocular oncology referral, genetic workup, and treatment considerations for enucleation, chemotherapy, radiation, and local therapy. Fear settled deep within as I held Jude a bit tighter, knowing all too well what was ahead for him, for our family.

And so I assumed the dual-role of child life specialist and mom, the hardest privilege I have endured. As tests and procedures were scheduled, I confidently advocated for parental presence, comfort positioning, distraction, reassurance, One Voice, developmental play, medical preparation and play, expression of emotions, consistency in routine. But with each hospital visit, anguish and dread hid just beneath my facade of confidence.

The tumor was staged as Unilateral Retinoblastoma, Sporadic Class C. Our treatment course started with intraarterial chemotherapy, IAC for short. This method of chemotherapy targets the tumor directly through an artery located behind the eye. Risks were involved, of course, both with the drug itself and access to the artery. Consent forms were signed, the passage of trust and care to our medical team. Jude had two rounds of IAC, one a month, with blood work visits in between. I fought my way to be with him in the interventional radiology and operating rooms, holding him and distracting him up until the last moment before the anesthesia team was ready for induction. I would sit with him at the head of the bed, a favorite stuffy wrapped up in his arms. I used all the strength I had to sing to him and look into his eyes, reassuring him as the mask was placed on him to fall asleep. I stood with his limp body in my hands, placed him on the table, gave him a small kiss on his forehead and left the room. It was all I could do to put one foot in front of the other, a feeling of immense heaviness as the door closed each time and I headed back to the waiting room.

This became our routine, continuing through countless rounds of laser therapies after IAC left his artery scarred and access was no longer available to the tumor. I kept a hospital bag in the car with distraction items to use in the waiting room and during the hours spent in pre-op. A few of my close child life friends would visit us when they had the extra bandwidth. Jude quickly became a beloved patient, as we would spread a hospital blanket on the floor, playing and reading books in between vitals, eye drops, meeting with the multiple medical teams, and signing consent forms. I would often make small talk about his favorite characters or what we were up to in the last month, noting his growth and personality. The medical team would tell me of their own children’s favorites, sometimes noting how their child was the same age as Jude and that they couldn’t imagine going through what we were. I understood, empathized, nodding and smiling through the exhaustion.

The moment in the operating room happened again and again — beautiful moments captured in my memory while singing him to sleep. I would make my way back to the waiting room, sitting in the hospital fog of the morning, texting family and friends updates and checking in with my husband on how our daughter, Mabel, was doing. He would stay home to get her up in the morning, feed her breakfast, and take her to pre-school. Keeping her normal routine was extremely important to me, knowing and watching for the textbook signs of sibling effects of the treatment process.

Years of laser treatment passed, and we continued to have relapses. We moved to Ohio to be closer to family and started seeing a new ocular oncologist at Cincinnati Children’s Hospital. After Jude’s third relapse of the tumor, we moved forward with a recommended treatment called plaque brachytherapy. This treatment required two surgeries, one to place the radiation plaque and one to remove it. After the plaque was placed behind the tumor in his eye, we were transferred to inpatient Oncology and were required to stay in
a lead-lined room for four days while the radiation seeds in the plaque targeted the tumor cells. The days and nights spent within the hospital felt sacred, to experience a small taste of what my previous patients and families lived day in and day out. I knew what to pack, how to help Jude cope and how to entertain him for four days in isolation. I had reached out to child life to help set us up with a play mat, superhero toys, books, legos, puzzles, and play-doh, but it was still so hard to see him in pain, to have no control over this disease, and to remain unsure of outcomes. I waited until he fell asleep to release the worry. I was alone, holding his hand while he slept and praying for his little body to heal. What I will remember forever is the way he comforted me, patting my leg or holding my hand as we watched movies together. In the middle of the night, I would help pull his pajamas up after using the bathroom and he would encircle his arms around my neck, squeeze me tight and say, “I love you, Mommy.” He knew I needed comfort too. How beautiful.

Plaque brachytherapy was successful, and we were finally given a release to be seen every three months, which felt so promising after having to go monthly for so long. Our first visit back after our break, I was fully expecting a report from our doctor that everything looked good, and we’d come back in another three months. I was hopeful that this was the beginning of our new routine and that we could breathe a little more easily

As I was sitting in the surgical consult room, anxiously awaiting to hear the results of the exam, worry set in again, and I feared the worst. The doctor was taking longer than normal to come and chat. Eventually, I was moved to post-op to sit next to Jude, and I was told the doctor would be coming by with the results. My stomach sank, my mind raced with worst-case scenarios, my heart rate increased, and I began to feel the dizziness that comes with panic. I had the feeling that many parents had described to me in my clinical practice, a precognition that something was “just not right”. As I sat next to Jude, holding his hand, listless from anesthesia, watching him breathe so peacefully, the doctor came and told me he had found a fourth relapse of the tumor. Tears of disappointment flooded my eyes, rolling down my cheek and onto the starch white hospital blanket my son had been tucked under so many times.

After the doctor left the bedside, I was left in the wake of disappointment and fear. I called my husband with the news. We were given a few options to consider, including the attempt at IAC again for three months with new methods and new drugs, systemic chemotherapy for six months, or enucleation of the eye. We quickly decided the IAC treatments sounded promising, signed more consent forms, met with more doctors and traveled back two days later for an MRI to stage the tumor before chemotherapy.

The results of the MRI came back with some concern. There was something behind the tumor that hadn’t been there on previous scans, and the radiologists and the Oncology team couldn’t determine whether the imaging showed effects of the radiation or if this was growth of the tumor outside of the tumor wall. For the first time since diagnosis, we were terrified. If the tumor had somehow infiltrated the optic nerve, there was increased risk for it to travel to the brain. Suddenly the doctors were using terms like ‘prognosis’ and suggesting that our next move required urgency. We were given the weekend to decide how to proceed, now unsure of what to do. My husband and I immediately started looking for answers, including a second opinion from our Duke team. The nurses and doctors were family to us, surrounding us with love and concern.

After all of the considerations and expertise of our medical teams, we made the extremely difficult and life-altering decision to proceed with enucleation.

Preparing our children for enucleation was the hardest part of this journey. I chose to prepare them separately, to hold space for them both. I prepared Mabel first, sensitive and wise for her age at six years old. I walked her through the information using a social story a dear CCLS friend made, sprinkled with facts and personalized pictures to show all that Jude had endured up until this point. I had also created a play-doh model of an eye with the tumor and one of an orbital implant with a matching lens that would take its place. Mabel asked a lot of great questions and verbalized that she was scared, that she didn’t want her brother to lose his eye. Tears surfaced in both of us, a shared mourning for the unexpected devastation.

Jude, who had just turned four, took it all in as I described his treatment history, looking back on pictures, how the doctors have been trying to help the tumor become scar tissue. I held it together as I described how even with all the ways we have tried, his tumor continued to grow and that the doctors now needed to remove the tumor to try to keep the rest of his body safe. I prepared him slowly and carefully, explaining that to remove the tumor, the doctor would need to remove his whole left eye. He too verbalized how scary it all sounded, pushing his head into my armpit, hiding from it all. Before Jude drifted off to sleep that night, he asked, “Can’t the doctor’s just fi x my eye?” He understood what was ahead, desperate for another way. I remember weeping that night in silence, after we had put our children to bed, and my husband had fallen asleep. A sadness that may never lift in my heart for our little boy.

Grief is another word that floats around the floors and the families we serve. I will never forget my dying patients, the lessons I learned, and the final goodbyes said to families in hospital rooms or in the busy traffic circles outside of the hospital. After enucleation, as we waited for pathology results, I imagined this was going to become my own story. I walked around my neighborhood in loneliness and fear, feeling like an untethered balloon blowing in the wind. I lay next to my son those nights, singing his bedtime songs, tears rolling down my cheeks and wondering if we were too late, if the disease had spread outside of his eye. My mind wandered to those children and teens I knew, the moms and dads who had to say goodbye all too soon, and I just kept thinking, how would I live without my child?

Post-surgical care for Jude was hard but manageable. Mabel struggled with being left with her grandparents during the surgery and the overnight hospital stay. She had difficulty seeing her brother come home swollen and in pain, hearing him cry from fear and discomfort. Pain subsided within the week after surgery, and after two long weeks of waiting, the pathology report came back. Results showed that the tumor seemed to be encapsulated, and there was no evident tumor infiltrating the optic nerve, though there was always risk for microscopic cells. The oncology team was confident but would bump his MRI a few months sooner to be certain. After six weeks, he was fitted with a prosthetic lens that would eventually become his “new eye.” Our ocularist did an incredible job, a hand-painted lens that matched his beautiful, healthy eye. We learned how to maintain and clean the prosthesis, a lifelong task that we carry for now and eventually he will do on his own.

Jude looked like himself again. He could feel it, too, we all could, the winds of change, carrying us in the direction of light and hope. Outside of losing his eye, he is our same boy who loves “Toy Story” and superheroes, dinosaurs, parks and playgrounds, reading, laughing, and snuggling close. So often, as he says, “I love you, Mommy,” I am brought back to those nights in the hospital, a promise through the difficult years and decisions made, grateful that he is still here to cherish and love.

As I continue to practice in the field of child life, I hold my experiences close. I understand that the smaller moments sometimes make up the greater picture of what parents are carrying. I have a better sense of how to read a room, leaning into a child and family’s natural tendencies and coping styles. I understand that it is okay to not always have the fix and to let children and families have space to process and grieve the realities of a diagnosis. And I have learned to have more grace, knowing parents are often just putting one foot in front of the other, just as I had to do for this season, navigating the uncertainties of their child’s hospitalization and holding on to moments of hope.