Update

Posted by Aunt Stacey

Just a quick update on ViviAnne...

Brent and Kristen took her for another Bone Marrow Aspirate yesterday. It will be a few days before we get the results back from that. Her last test indicated that she was 9.9%. The goal is to get her down to 5%, which the doctors think will be the case when we get the results. Then she will be considered to be in remission.

After the Bone Marrow test, she was given another Chemo treatment through her port in her chest. Kristen said she did very well. She was scared and nervous, but still did well. She kept saying, "I'll just hold onto Mommy."

Her counts are down a little so she is Neutrapenic right now. Below is an explanation of what this means,

Neutrapenia is an abnormally low number of neutrophils in the blood. Neutrophils serve as the major defense of the body against acute bacterial and certain fungal infections. They are the
“first responders” and quickly appear at the site of infection, ingesting and destroying foreign particles. Without the key defense provided by neutrophils, a person has problems controlling infections.

A normal neutrophil count (ANC) is between 2500 and 5000. Neutropenia begins at 1500 and below.

ViviAnne's count was 900. So this is what Brent and Kristen are referring to when they mention her counts are down. This is normal and will happen from time to time.

Other than that she is doing pretty good. The steroids make her moody and incredibly hungry ALL the time. She is cracking us up with her obsession with food right now; especially cheese.

Brent wrote me saying,'' Kristen and I laid in bed for a few minutes last night and tried to guess how many times she said mac&cheeze. We agree that it was easily over 100, probably somewhere around 135. At some point it became a stammer 'I want my mac&cheeze mac&cheeze mac&cheeze mac&cheeze."

1st Hospital Stay

WRITTEN BY MOMMY (KRISTEN)

I don't want to just give you a play by play of the 10 day event. Anyone who has ever stayed one night in the hospital knows it is tiring and pretty uneventful. That is other than stats, meds, talks with Docs, and thankfully for us, talking with LOTS of other people. Kosair's aims to heal the COMPLETE child and their family. So I'll give you a glimpse into the fog and fear I walked around in during that time.


The only time I left her side was for 3 hours one day and that was it. I COULD NOT leave her. I just couldn't. During the days, I was very busy doing things with her to keep her mind off of what was going on. Well, what was going on to her, that is. Every person who walked through the room for the first 3-4 days was scary for her. Even the lady who delivered the food. She eventually got to a point where anyone who entered the room, she'd ask them "Do you got any boo boo's?" Or "No boo boo's?" And if said person answered with a NO; than all was well. The alternative launched right into a crying fit. Understandably so.


That being said, I was busy with my 2 year old daughter just like I would be in ANY situation. with or without Cancer. But after listening to the diagnosis and learning everyday more and more about the disease and how to cope with it all, I physically, mentally, and emotionally went into what I can only describe as survival mode. I only heard the important things and not the nothings; like what day of the week it was, or what the weather was like outside. I only thought about getting through the next hour of the day not what she'd be like in a year from now.


And, emotionally, I never even showed any heart ache or fear while she was awake. I was being Mommy and that was that. But then, in the silent times of naps and at night, it would all hit me and I would feel my soul begin to spin. It was like I could actually feel myself begin to implode. I didn't have questions of why or how running through my mind. I couldn't make sense of any of this so I just cried and paced the floor, or cried and rocked. All silently of course; I didn't want to wake her or draw attention to myself from strangers; even though EVERYONE who works on or with 7West is amazing!!


There is only one night that I remember being extraordinarily hard. The night the Chemo was injected. It was Midnight on the nose, when the nurse walked in and suited up for Chemo treatment. She explained everything in a hushed voice, trying not to wake ViviAnne and scare her. I was reeling. Here it is….we're starting! I heard nothing but her words and memorized them exactly. I HAVE to know this. I went to ViviAnne's bedside, just in case she woke up, and she did! It was awful! She was simply tired and pissed to be awake AGAIN, and just wanted them to leave her alone. (Well actually she says,"Yeave me ayone,")


In the midst of this all, she said to me what she had been saying to us all for 3 days. She wanted to go home. But this time it was different. This time it ripped at my soul and, in typical ViviAnne fashion, she was so poised and said very clearly through her tears, "Take me home now, Mommy, please. I wanna go home now, please." And all I could say back to her was, "I wanna go home too." BECAUSE I DID!!! She ripped down the veil of fog I'd been putting up for her and we laid there, in her hospital bed, receiving her first ever Chemo treatment and both of us felt the same exact feelings of fear and wanting home.

Here I was, with my nearly 3 year old, being nearly 30 myself, and we felt the exact same way, and could only say and do the exact same things.


For the next 2 hours I lay there and held her while she slept and cried. I only cried and the same 4 words roared inside my head so loudly that I couldn't think or hear anything else, "CAN YOU HEAR ME?!" I know these words are from a Christian song I heard days prior, but it was the only part of the song I can even remember to this day. It was like my soul was breaking and screaming for God to hear it! "CAN YOU HEAR ME?!?!" over and over again.

In all of this technology to help my daughter, she and I were completely stripped down to our cores and it scared me. "CAN YOU HEAR ME?!?!?" again and again was all I could think. "CAN YOU HEAR ME?!! CAN YOU HEAR ME?!?!" And I never said the words out loud but finally my soul gave up and I drifted off to sleep.


Now, I know that God did hear me because the very next night, when I was awake at mid night again, the absolute only words I could hear or think were, "THERE IS LIGHT AT THE END OF THIS TUNNEL!" Yes another Christian song I'd heard but this time I tried to push the words out of my head. I didn't want to hear that!!

"What were those words from last night?" I thought. I couldn't remember them. I tried and tried but nothing came to mind. "Now how can I not think of those words?" I thought. THE ONLY thing that kept popping into my head is "There is light at the end of this tunnel". Again and again I tried to get those words out of my head but they wouldn't leave. "No, I'm not ready for this mentally. I'm broken. Can't you see I'm BROKEN?!?!? I want to hear something else!" I thought to myself. But the words just kept on and kept on to the point I didn't even really hear them any more I just knew they were there. They came back the next night too, but this time I smiled to hear them.

So yes, God did hear me, and I believe he was speaking to me in a sense by holding my soul together from that horrible night on. Not even permitting me to have any other words in my head except for "There is light at the end of this tunnel."

So in the quiet, when I meet my fears; because that is where they hide, when I begin to feel my inner being reel out of control, those words creep back into my head. I believe it is God's way of reminding me that He is here with us and there is sooo much more for ViviAnne at the other end of this. And, as her Mommy, I have to lead her towards the Light because she can't do it by herself.

About ViviAnne Grace

ViviAnne Grace Bohannon was born on August 25, 2005.

ViviAnne is the name that Kristen envisioned calling her first daughter long before we were married. As soon as we found out that we would be having our first child, a girl, Kristen campaigned for the name.

She explained that the name was a contemporary variation of classic names whose etymology was rooted in the Latin for “life” and the Hebrew for “Full of Grace, or Full of Mercy”. I fell in love with the meaning, the spelling, the punctuation and all that came with it. It was modern yet elegant, recognizable yet exclusive; a name fit for royalty. She translated the name ViviAnne as “Full of Life”.

Those who know ViviAnne know that no other name would have suited. She is the essence of life, spirit, and strength. Since she first spoke her opinion, it has been known that she is strong in will and even stronger in passion. The answer to all of Kristen’s prayers, she is sophisticated and precious. She is her Mommy’s world and her Daddy’s little princess.


From the beginning she has been enamored by shimmering beauty, purity and innocence. And the color pink. Pink is the color of her room, most of her clothing and almost any toy that is given to her. She has always had a natural infatuation with babies; she has a maternal instinct that has always amazed us.

When we brought Cooper, her little brother, home from the hospital she was 17 months old. The love she displayed was palpable. Her face looked at him with astonishment, as if she couldn’t understand how she lived without him. These tangible emotions are not normal from a child, especially of her age. How can a toddler fathom that he was a part of her? Since that day he has idolized her. He has always looked at her with eyes of enchantment; the way she looked at me when she was born, as if to say “you are my shelter, so I am safe.” She can’t possibly do the things she does without consciousness and touch people in their deepest being; but she does everyday.


As ViviAnne came out of sedation from her first treatment, the anesthesiologists warned us that she probably wouldn’t be able to speak for awhile and she would be confused and uneasy. She opened her eyes, looked deep into Kristen’s, and said in the clearest words that will echo in my soul for eternity, “Mommy, How are you?” The most traumatic experience of her young life (at that time) was culminating and her immediate concern was for our well-being.

Her elegance lights up a room and her ingenuous manner leaves adults speechless. I’m sure every little girl is her Daddy’s Princess, but somehow ViviAnne transcends the cliché. I can’t describe whether it is what she says, how she says it, how she carries herself, or her sincerity. But she engenders a feeling of belief that fairy tales are real and she is living proof.

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.