11/10/2014 11:16 am ET Updated Jan 07, 2015

Why We Switched Hospitals Mid-Cancer Treatment

Julie Meyer Taylor

After the cashier rang up my purchases, he pointed to the balloon-shaped donation slips on the wall and asked me, "Do you want to make a donation to Blankety Blank Hospital?" As I read the hospital name on the paper, I could feel a familiar anger travel from my gut to my throat. I felt like Dr. Bruce Banner transforming from calm citizen into green monster. I wanted to tell him all of the reasons I wouldn't be donating. But I stopped myself.

It has been four years now, and I am better at controlling my rants, at least around unsuspecting strangers. I simply said, "Not today. I give to other pediatric cancer charities." And I paid my bill.

In 2010, my 2-year-old son was diagnosed with Ewing's Sarcoma. After spending two and half months in a hospital that placed compassion and patient comfort at the bottom of their priority list, we left. We switched hospitals in the middle of his cancer treatment.

Medically, the first hospital did everything right. I am grateful for that. The surgeon who removed my son's tumor was one of the best pediatric neurosurgeons in the U.S. The lab diagnosed my son correctly. The oncologists prescribed an appropriate treatment plan. The nurses on the oncology floor did their job well. But I was miserable.

We left for the following reasons:

Lack of kindness and compassion: On the day my son was diagnosed, a sour-faced oncologist entered our room and listed all of the "unfortunate" facts about my son's case. I don't think she ever smiled. When she left the room, her nurse entered. Calloused and abrasive, the nurse treated me as if I had enlisted in the army and she was my drill sergeant. She told me what would be required of us, and read through the horrific side effects of the prescribed chemotherapies as if she were reading the ingredients on the back of a cereal box.

When she left the room, my family and I sat there in shock. We were not shocked at the medications. We had expected them. We were shocked that we were facing a year of treatment with such negative caregivers. Immediately, I got on the phone. I was able to switch doctors, but unfortunately, our assigned nurse remained the same.

Shared rooms. At a time in our lives when we were desperate for comfort and support, we experienced the opposite. On the night the tumor was discovered, the rest of my family went home to bed, and my son and I were placed in a room with another patient and her mother. The girl had a painful urinary tract problem, and when her alarms weren't going off, she was crying in agony. It was a horrific night, and I am sure that neither of us appreciated the company.

Every night at 8 p.m., a loudspeaker would announce that visiting hours were over. "Visitors" included parents. Only one parent was allowed to stay past 8. Caregivers were not allowed to use the bathroom in their child's hospital room; we had to use the public toilet down the hall. I felt like an unwanted inconvenience.

Roommates (more than) doubled the stress of hospital living. We experienced double the screaming children, double the beeping machines, double the alarms, double the nurses visiting our room all night. We had no privacy, little sleep and constant disruptions. During those first two months, we spent the majority of our nights in the hospital. Sharing a room added significant weight to our already unbearable emotional burden.

Interns and Medical Students: A week after my son's first round of chemotherapy, I rushed him to the ER with a fever. It was 3 a.m. My son was in horrendous pain from a violent reaction to his treatment; I was distraught that he had to endure another hospital stay. While he cried, the nurses accessed his port and hooked him up to IV antibiotics. Due to a shortage of beds in the hospital, we were told we would be spending the night in the ER. Thinking we were set for the night, I turned off the lights, lay down in the bed beside him and hoped to soothe him back to sleep.

But, of course, the hospital had other plans. We were the newest guinea pigs on the block. Almost every half hour a medical student, or an intern, or a resident would come in, turn on the lights, wake us up, and ask me questions. They did not ask important, or necessary questions. They asked questions that could have been found in his medical file. One intern actually asked, after we had been there for several hours: "What brought you in tonight?" Another asked: "What is his diagnosis again?" But if I acted frustrated at the intrusions, or irritated at the redundant questions, they looked at me puzzled, as if I were making their lives difficult. Excuse me for not wanting to be carelessly interviewed on one of the worst nights of my life. It was heartless and unbelievable.

The Final Straw: One morning, my son and I went to the clinic to begin a weeklong round of outpatient chemo. When we arrived, our nurse told me that she had "bad news": our insurance had not approved outpatient treatment and we would have to spend the next six days in the hospital. I was so upset, my hands began to tremble violently and I could hardly hold the phone steady enough to dial my insurance company. After misdialing four times, I finally got through. The insurance agent calmed me down and told me that my son's outpatient treatment was covered 100%. The nurse had never called them. She had received incorrect information from the home healthcare provider, and didn't take the time to double-check with my insurance provider.

I complained to my nurse's supervisor. She offered that I could see a part-time nurse who worked on Thursdays, but warned that if I came on other days, I would have to see the regular nurse. That was the last time I set foot in that clinic.

I was in distress. I lost 10 pounds in one month. I was sharing my grief on my blog and thankfully a pediatric oncology nurse was reading it. She let me know that there was another hospital in the area. It was twenty minutes further from my home, but respect and kindness were worth the drive.

The new hospital was like a dream come true; an answer to prayer. As soon as I arrived in the parking lot, I knew things were going to be different. Reserved patient parking was next to the front door. The nurses smiled! The doctors smiled! The staff at the front desk smiled! We had our own hospital room. My husband and older boys could stay as late as they needed; they could even spend the night. I could use the bathroom in the room! When my son had fevers, we bypassed the ER and went straight to the oncology floor. We were left alone unless medically necessary. The contrast was extraordinary. Everyone, at every level, treated my family with extra measures of kindness, compassion, and thoughtfulness -- which is exactly what we needed.

Four years later, I am incredibly grateful that my son is alive and thriving. Of course, if needed, we would have suffered through six more months in the first hospital. But I am so glad we didn't have to. My heart breaks for families in this situation who do not have a choice. Switching hospitals mid-treatment was one of the best decisions of my life.