ViviAnne's Diagnosis

I am Brent, ViviAnne's Daddy.

In April 2008, we brought to the attention of ViviAnne's Pediatrician an enlarged lymph node behind her right ear. The affected lymph node was just bigger than the size of a pea. Her doctor prescribed antibiotics and charted the size to determine if an infection could be causing the enlarged node. The only other symptoms that ViviAnne displayed were occasional fevers.

She was perfectly fine in all other aspects of her life. She referred to “her bump” as though it was a little friend she carried around with her. She often reminded us (and reassured herself) that “Doctors don’t hurt; They just want to look at my bump.” The fevers became fairly regular about one ever other day or so. The lymph node never changed in size. Since the antibiotics did not decrease the size of the node we ruled out bacterial infection.

Her doctor began ordering blood work. ViviAnne was less than thrilled with these procedures. I always knew she was strong, emotionally and in opinion, but her physical strength was overwhelming. The hardest thing that I will ever have to do in my life was to restrain her while they stuck her, time and time again, to get the blood sample.

The result came back with slight irregularities but no major indicators. We were sent to a hematologist for further testing. The oncologist spoke with Kristen and I while we held ViviAnne in a cramped exam room. She said a lot of things but the only thing we remembered was the word “cancer”. She must have been mistaken; we were here for blood work. She ordered chest x-rays, further blood work, and we scheduled a CAT scan for the following month.

In mid-May we went on vacation to Fort Morgan, Alabama. This was a wonderful vacation with my extended family. The only other time ViviAnne had been to the beach was when she 4 months old. We wondered how Princess ViviAnne would handle the sand. At first, panic set in. To her, the sand was dirt and dirt didn’t belong on her feet, shoes, towels, or anything else. Cooper shared the distaste for the sand. At one point we placed him in a toddler folding chair in the sand. If he wanted to get down he was going to have to step in the sand. Or so we thought. The little smarty pants actually took his hat off and dropped it on the ground and stood on it. By the end of the week they were trying to run into the surf on their own.

It was a great week and a very pleasant distraction from the medical drama back home. Mid-week, ViviAnne’s pediatrician called to update. We had not heard any results by this time and were still a little shell shocked from the word “cancer”. Her pediatrician said the oncologist did not notice anything irregular in the chest lymph nodes. So our optimistic, or maybe naive, minds jump to this ruling out Lymphoma and Cancer all together. We were cautioned to not rule anything out until we had the CAT scan and finally the biopsy.

We tried to put this in the back of our minds and enjoy the rest of our vacation. The kids could not get enough of the beach. Having Aunt Stacey and Uncle Andy, Uncle Brad, Grandma and PawPaw all in the same house was like a dream come true for them and us. We eventually had to head back to Kentucky and the reality that awaited our return. It was like ViviAnne spoke all of our minds of not wanting the week to end. The first few days back she kept pleading that we get back in the car and go to the beach as if it was just on the other side of town.


The Monday after our vacation I flew to Chicago for two days for a business trip. ViviAnne was scheduled for her CAT scan on Wednesday. Kristen and her Mom took ViviAnne to Kosiar’s Children Hospital for the procedure and I was to meet up with them there. Upon stepping off the plane I realized that I had mis-calculated the time difference and was an hour behind where I thought I’d be. I scrambled to my Dad’s shop to borrow a car and headed downtown. By the time I got to the hospital, ViviAnne was in recovery and still under sedation. The sight of her lying on the hospital bed unconscious went all through me. I knew she was just “sleeping”, but my body went limp. I had been slapped back into the reality of what we were dealing with before we left for vacation.

As though we were being shuffled through every specialist in town, our next visit was to the Center for Infectious Disease. By this point ViviAnne was terrified of all doctors, nurses, and anyone else that was remotely related to the medical profession. We reluctantly agreed with the Doctors that more blood work would help us determine and treat what was ailing her. If, in fact , there was any Cat-Scratch Fever, some rare form of TB, and a laundry list of other possibilities causing an infection the only way we would find out was to let them keep sticking her with needles. All of these results were negative. I felt like we were back to square one.

On July 9th, 2008, ViviAnne had surgery to remove the swollen lymph node behind her ear. It was a relatively uneventful process; not unlike the last three months of blood work, CAT scans, tests, and Doctor visits.

We checked in at the 8^th floor operating waiting room. The room was quiet, but packed with fretful parents and families. I couldn’t help but notice the median age of the parents. I initially thought they were the siblings of the young patients being treated. And the older family members next to them must have been the siblings' Grandparents. This was not the case. These were the parents of the babies being operated on down the hallway. Ne xt to them was not their Grandparents, but rather their Mothers and Fathers. I had just turned 30 in March, and this day made me realize that I wasn’t young anymore. In fact, I noticed that I wasn’t even the youngest parent in the room.

They called us back to pre-op. ViviAnne found a little comfort in the operating wing playroom. The doctors and nurses all came to the playroom to introduce themselves and get the information they needed from us. Some would try to play with ViviAnne a bit before giving us the "procedural low down." She was given toys to take home. Everyone there went really out of their way to make the whole process as amicable as possible. ViviAnne began to panic as we went back into the pre-op room. Eventually, an anesthesiologist came in and introduced himself. He tried to goof off with ViviAnne but she was not having it. He got close enough to give her a mist of Versed (an Anesthetic) up her nose and then, very quickly, he was gone. ViviAnne looked at us like, "What the hell was that?"

It didn’t take long for the drug to take affect and ViviAnne became very quiet and lethargic. By the time the surgeons came to get her she went willingly. We went back to the waiting room and paced. A short time later the surgeon met with us and shared that the surgery was a complete success. The node was barely attached to the surrounding tissue and was removed very easily. She was very optimistic because of this.

We went back to the waiting room to await her coming out of sedation. When we were called back to post-op, ViviAnne was already awake and pissed. She didn’t remember

anything from the morning and was ready to go immediately. By the time I got to my Mom’s to pick up Cooper, it was 6pm. We had already scheduled a doctor’s appointment for him that night for double pink eye. I told the pediatrician that ViviAnne did pretty well that morning with her surgery. He had already heard the surgeon’s dictation and sounded pleased.

MY WIFE, KRISTEN, WILL TAKE OVER NOW. THIS IS HER TELLING WHAT HAPPENED NEXT...

On Thursday July 10, 2008, I was about to walk into the Hospital where my Mom works for a visit, when my cell phone rang. It was the surgeon checking on ViviAnne. I explained she was fine. Then her tone changed and, in a very hushed voice, she said that she and the Pathologist were concerned because they found Lymphoma Cells in the lymph node.

I began to shake and tried not to drop Cooper. I grabbed a pen and wrote down her number. Tears rolled down my cheeks as I walked towards my Mom’s unit of the Hospital. No big deal, everyone cries in hospitals. But the minute I saw my Mom, I completely broke down and told her the news. She helped me to a chair before I fell down. Cooper was crying by this point and ViviAnne kept

asking me, “Mommy are you okay? Don’t cry Mommy.” I was losing it. Co-workers of my mom gathered at the nurse’s desk awaiting my departure from the back room.

My Mom was given the rest of the day off and I made the dreaded call to Brent to tell him to come home. I knew that he knew it wasn’t good. I never call him calmly and tell him to come home. He walked through the door and I just said it. Almost like I was talking about someone else’s kid and not my own baby; I was so numb and in a fog I just could say it out loud without even blinking an eye. It was weird; considering how now I am a ball of tears whenever the kids are asleep or not looking.

AND BACK TO DADDY TO FINISH THS STORY...

On Monday July 14, 2008, we returned to the Pediatric Hemologist/Oncologist office first thing in the morning. Kristen, ViviAnne and I were joined by my Mom (Grandma) and Kristen's Mom (Nana) in the same small exam room.

The word "cancer" was being thrown around a lot by this point. It didn't have the same bone chilling ring. It was medical terminology and protocol, not emotional. The discussion of treatment is what was hard to swallow. There was a sense of urgency that we hadn't felt to that point. The doctor ordered back across the street for another chest x-ray and blood work.

We when arrived on the 7^th floor of Kosair's Children Hospital, "7West" as it was known through out the hospital, it was like walking into a hotel. We were greeted by a team of nurses. We were given a tour of the facilities including the family room, the nutritionist and, of course, "Evan's Playroom". The playroom was amazing ViviAnne didn't know which corner to gravitate toward. It was about 1000 square feet of open play space. There was colorful rubber floors and the walls were covered with murals of underwater and tropical scenes. The room was lined with every type of toy you could imagine. We were left to just peruse for a while.

While ViviAnne played, the music therapist came in an introduced herself. Shortly afterward the massage therapist and the hospital Chaplan introduced themselves. I leaned into Kristen and said "Everyone is acting like we are checking in. I mean we are just her for some blood work and chest x-ray…right?" Every person, from the head nurse, to the maintenance staff was cordial and outgoing.

We were shown to ViviAnne's room. It was a large comfortable room that was wall to wall pink. The doctors began to join us. The resident was a young lady who was new to town and had to be five years younger than me. She was wonderful; a soft spoken very gentle person. She explained to ViviAnne that she was her friend. She continued to explain with kid gloves that she would see her everyday but she would never hurt her. ViviAnne immediately clicked with her and referred to her as "my buddy".

The naivety finally wore off. "We are going to be here a while; aren't we?" I asked. We were comforted by the doctors with the harsh reality.


We were cancer patients in the cancer ward.

A few days later the diagnosis was given. Acute Lymphocytic Leukemia. Chemotherapy immediately began.