Anna Kate's Story

Born June 11, 2013 to parents Mike and Jennifer Wenz and to an amazing big brother Brayden, in Martin Tennessee Anna Kate was a happy baby. Healthy, vibrant and active.  Anna Kate was like any other child her age.

It wasn’t until January of 2015 that Anna Kate started showing what we now know were symptoms of a brain tumor.  Anna Kate started not eating and refusing things that she once enjoyed. She started complaining of her rear end hurting if she sat in her booster seat to long and she started having several episodes of what the family thought was just the good old stomach virus.  The family had all come down with the stomach virus in early January and Anna Kate was no different.  After several trips to her Primary Care Doctor, blood work up and even an upper GI it was decided that further investigation was needed.  Anna Kate was referred to LeBonheur in Memphis to see a GI specialist.  On a Thursday afternoon, Anna Kate was admitted to LeBonheur to have a test run and procedures performed that the doctors assured us would give us our little girl back.  Anna Kate was discharged that weekend and sent home to recover; however, recovery was not the case.  On Thursday of that week Anna Kate returned to Memphis to see her GI specialist after still refusing to eat and being extremely cranky the first half of the week.  The GI doctor visited with us and of all mornings, Anna Kate decided to eat a little more than she had been and even seemed to have the energy to play in the exam room.  The GI sent us home with the hopes that we were finally turning the corner. Anna Kate became much sicker early Saturday morning and refused to open her eyes, when we attempted to get her to eat or drink, she would immediately throw it up, so after speaking with the Pediatrician again, it was decided to return back to Memphis and triage through the ER that evening.  

At LeBonheur, an emergency room doctor began asking questions about her illness, history, and ordered a CT scan. The results of the scan were devastating. It was on this date, March 21, 2015, at a little after 7 pm, that we received the divesting news that our little girl who had been so normal and so intelligent had a 2cm brain tumor growing between the cerebellum and her brain stem.  Her big brother had been taken out into the waiting room with one of the nurses and was unaware of how much his life was about to change.  We sat in that ER room hugging her as tight as any parents could.  Dad sank to the floor, and I pulled Anna Kate as close as I could to my chest.  It was a time of relief because we finally had an answer to a nagging concern we had been having in our guts since the beginning of her symptoms appearing.   How much our lives were about to change was completely unforeseen and unimaginable.  

Surgery was scheduled for the following Monday, but Anna Kate became unresponsive early Sunday morning in the wee am hours and began having seizures. The tumor was rupturing and was causing pressure to build on her brain. We were informed that her Nuero team was on their way in and she would be having emergency surgery performed to save her life. We were assured she had the best team possible coming to be by her side and she was in very good hands.  We had little time to process or understand fully what was about to happen but as the sun started to rise, we kissed our little girl on her forehead with 20 or so doctors at her side and told her we would see her soon.  Our brains were frozen in a state of shock and panic, and we had no idea if we would ever see her come out of that OR alive.  This mom did have one crazy request and I asked if the hair they were about to shave off her little head could be kept and given to me, since she had never had her first haircut.  The nurse nodded and promised to take care of it for me.

After almost 10 hours of surgery, the doctors appeared and informed us that she had done amazing, and the surgery was a success.  We asked that doctor in that hallway before he walked off if we had chosen not to bring Anna Kate in last night would we have been able to get her here in time.  He looked straight at us and with no hesitation; he stated that if she had been at home when the seizure had started, there would have been no mode of transportation that could have gotten her to a facility that she would have needed in time to provide the care that she required.  In other words, we would have lost her at home without ever truly knowing what ticking time bomb was inside her head.  We waited patiently while they closed and got her moved to the Neuro ICU and upon being told she was in her room; we ran to be by her side.  As we entered the room of the ICU, she lay in that hospital crib with a tube in her head and IV’s in her arms, but she was breathing tube free.  After surgery she woke up strong, coming off the ventilator asking for her mommy.  Anna Kate was never a baby that complained and was usually the one who if she had fallen, she wouldn’t shed a tear but instead kissed her hand and touched her boo-boo and would say all better.  Tough is an understatement when it came to her.  

Ten days after being admitted into LeBonheur, having major brain surgery, and beating the odds of having to have a shunt placed prior to our discharge, we were discharged home. We were put in contact with patient services at St Jude and on the day of her discharge we were to report to the campus for our orientation and first meeting with her new family.  We, like so many of the families, looked like a deer caught in the headlights of an oncoming car as we walked the halls of a place, we would soon be calling home.  Now, looking back and watching new families come and go, everyone has the same look and the same blank stare as they enter the walls of that gold dome.  It’s a world of so much unknown, hope, and most of all fear but around every corner there are people waiting to make sure they stand you back up and put you back on your feet.  We walked out of the building with our first appointment in hand and would begin our new lives in a weeks’ time.  Home was where we wanted to be and where we were headed.  We pointed the car north and hit the road. 

We spent the next 7 days enjoying our semi normal lives as best we could.  We had a little girl who had beaten the odds and came out on top.  Anna Kate had lost the ability to walk and was still having a very hard time crawling but was doing everything she could to regain her strength.  We watched her struggle at home trying to do the things that she once found easy, and we watched her grow stronger every day.  There are not many chances in life that you get to do over but with Anna Kate we got to watch her crawl again for the first time, we got to see her take her very first steps after two months of Physical Therapy services at St. Jude, milestones that were amazing all over again.  

The worst news came however on our first appointment back on St Jude’s grounds.  As we returned for our first appointment, Port Placement and first MRI we were soon informed that our troubles were far greater than we had initially imagined.  Anna Kate’s nasty Ninjas had not only tried to attack her little brain, but they had attacked her spine as well.  She was in immediate harm of becoming completely paralyzed by a tumor that was just about to impede her spinal cord and doctors were amazed that she was even walking before the tumor presented itself.  We constantly had to promise them that yes, this little spit fire was walking; jumping, climbing and even running up until the morning the tumor decided it was time to show its ugly face.  We were told instead of getting to come home for the two weeks as originally planned we would be starting chemo that weekend.  We called family and friends and informed them of the news and shared our heart ache that we would not be attending an event our community had put together in her honor.  We at that moment became family of St. Jude.

Over the next days, weeks and months Anna Kate underwent multiple rounds of chemotherapy both inpatient and in the wonderful med room at St. Jude Hospital in Memphis. St. Jude became her home away from home.  We moved into several temporary housing arrangements until we finally landed in the Target complex, which is an apartment style living arrangements where families are self-sufficient and have some form of home life while undergoing what some have said was the worst months of their lives.  It was during this time that the amazing story of Anna Kate Wenz and a community she inspired and united took place.  Anna Kate did not fuss or cry when we got to come home and leave right back out because her counts were 0 and her body had no immune system to fight off germs, because St. Jude was part of her home and they treated her like one of their own.  There were often times during treatments when Brayden, Mike and myself would be packing the hospital room ready to hit the road as soon as we got our release papers and Anna Kate would say in her strong little voice, “I not go”, and we would look at her and say we are going and finally after going back and forth for what could take several minutes she would put her fist on her hips and say, “Ok, I go too”.  She never felt like she was in a hospital or was trapped in a place of hurt or pain.  I think to this day as many times as I had to hold her down to have her port accessed, she knew it was out of love that we had to cause her that moment of pain as her butterfly had to fly down and bite her so that we could fight the battle and pray to win what doctors had told us was a very long road with odds stacked heavily against us.  

Most kids would be starting to know their colors, shapes and possibly even counting by age 2, not Anna Kate; she could tell you most of the names of the medical equipment and always was willing to give you a shot.  She had learned almost all her colors from the different medical supplies that were used daily and knew when something was different.  She learned to count from the nurses preparing her for the poke or for the time it was going to take before she could move while they were drawing labs or cleaning her line.  She was so smart beyond her years and even could tell the doctors at times what tools they were going to need before they even asked for them.  An Otoscope was one of her favorites and she would happily turn her head or let you look into her eyes when this instrument was revealed.  She knew when blue had gotten loose and needed re-taping so we didn’t accidently pull her access line out and would come find you and tell you that she needed blue tape and not white tape because the blue tape did not hurt when it had to be removed, but most of all she was at home.  

It was because of our community and all the people around us that allowed us to feel like we were at home. Her family dynamic never changed, just her location and I truly feel this is why she did as well as she did through all the hell she was put through.  Brayden her big brother missed a lot of school during our time at St. Jude, but we felt it was important to keep him by our sides and fully informed of everything that was going on so that way if he had questions he could ask and not feel like we were leaving him out of anything important.  Brayden figured out ways to sleep in chairs while waiting to be admitted on the nights we would spike the low grade fever and be neutropenic and have to be admitted until our counts recovered, he found friends in the hallways that he enjoyed playing with when they were feeling good and most of all he was by his sisters side through the good times and the bad without worry of what was going on.  

It was on February 18, 2016, that our world would be rattled again, this time in a way that the crack was going to show forever.  After being off treatment for nearly 3 weeks, I had returned to work and Mike was staying home with Anna Kate during the day, I got the phone call at work that stated Anna Kate was not responding when she was spoken to, and she just had a blank stare to her face.  I left school as soon as I could and after arriving home, we decided we needed to have her seen by a doctor as soon as possible.  After speaking to St. Jude, they sent us to one of our local ER’s and had them on standby for our arrival.  After examining Anna Kate, it was determined that she had suffered from a seizure and needed to be transported back to St. Jude so that her doctors could have a better look at her.  We arrived back on safe grounds around 2 am Friday morning and were scheduled for an MRI at 8.  At about 7 pm that night our doctors hit us with the gut-wrenching news that Anna Kate’s tumors were active and growing very fast and very rapidly in her brain.  The doctor stated that in his opinion we had weeks before she would be taken from us and there really were no other options for us at this time.  We sank to the floor again and hugged her tightly and as the door closed, we looked at each other and knew that we had promises to fulfill and little time to make them come true.  We made a few phone calls and within days found ourselves on a plane headed to Walt Disney to make sure this little girl got to see Doc McStuffin’s and her clinic.  We talked night and day about seeing her and we were not going to let our promises be unfulfilled.  For one amazing week, Anna Kate slept but was seizure free and able to meet her favorite characters and was amazed at seeing them in real life.  She laughed, ate everything she wanted and played to her hearts content. Prior to leaving Disney we asked Anna Kate if she was ready to go home or FIGHT back at St. Jude and Anna Kate raised her little fist in the air and said “fight”, within in minutes of our conversation I had emailed her doctor and informed him that no matter the odds or the risk, Anna Kate wanted to fight.   His reply was to finish enjoying Walt Disney and come back to St. Jude once we returned home and he would figure out a plan of action. On Sunday we left Walt Disney and headed north to a beach condo that had been given to us through Waves of Grace to let Anna Kate touch the sand and hear the ocean crash against the shore.  Monday morning, we woke up, I fixed breakfast, and she ate and ate and then we went down to the beach.  She was grinning ear to ear as her toes hit the sand.  She knelt and filled up her bucket but soon after she had that blank stare on her face and this mommy knew she had suffered another seizure.  8 days seizure free and on this day, we see it return was heart breaking but not the end of the world.  We packed up our stuff and returned to the room where she slept until almost 4pm.  We had been given an amazing photography session by a local couple in Destin and they were planning on being at the condo around 4, well just before it was time for them to show up, Anna Kate opened her eyes and said she wanted to go back down to the beach.  So, we changed and met the couple down on the sand.  Little did we know as we finished up this photo session that this would be the last time, we would get to see those big brown eyes open because only a few hours later, Anna Kate would suffer another seizure and would start to have irregular breathing patterns.  So, after a phone call to St. Jude, we called 911 and were taken to the closest ER that was pediatric trained.  After finally speaking to our doctors at St. Jude and letting them know that Anna Kate wanted to come home, they made arrangements for angel wings to come and get us and fly us home.  No other hospital in the world would have gone to so much trouble to make sure a little girl’s last wish was granted but they never blinked an eye and brought her home.  You know looking back while we were in that ER waiting for the plane to get to us, Anna Kate opened her eyes for just a brief moment and said, “I HOME”, usually she would always say, “I want to go home”, but not on this night.  I think in her own way she was letting us know she had seen her heavenly home and she was already there.  Even on the flight home, she never opened her eyes for me but at one point while we were in the middle of our flight, she rolled her head towards the window and opened her eyes for just a few moments and before closing them, she picked up her right hand and blew two kisses to someone beside her or outside that plane window.  To this day I know in my heart that it was my dad, her grandfather, who had passed just months before her diagnosis making sure he was right there beside her and for her to know she was safe, and he would see her soon.  

After arriving at St. Jude, we were admitted and were told they were there to make sure if we needed anything they would get it taken care of.  Anna Kate died on March 2, 2016, at about 8:23am.  She woke us up that morning needing to be suctioned out and after lying with her dad and me for a little while, she and I returned to her bed.  We cuddled and at about 8 am as my hand laid on her chest, it stopped rising.  I got Mike and Brayden up and by her side, because I was afraid it would be the last time, she would know we were there.  Brayden, Mike, and I kept our hands on her little heart until the last little heartbeat was felt and we knew Anna Kate had gotten her angel wings and was flying free.  Anna Kate lived exactly two weeks from the time the doctors told us she had mere weeks to live, and she died knowing that she was loved and would be eternally missed.  

Make no mistake, day in and day out the tiny warrior princess as she was called fought with heart and spirit that was in no way going to give up until she was ready. A tougher person you will never meet. But ask anyone around her and they will tell you she did it with a smile, described as happy most of the time. Chemo is hard on the body, both poisoning one part of the body to fight the cancer attacking another part.  Many families saw devastating side effects or severe weight loss, but not this princess warrior.  We often said the worst thing she got out of it was a haircut and a tan. This tiny girl did not give in and did not give up.

While Anna Kate fought cancer Martin, Tennessee, and the surrounding towns in Weakley County and even Dyer County came together and rallied around the us. During her treatment both Mike and I along with brother Brayden vowed to fight with Anna Kate as a family. This meant that as much as possible all would be together during the weeks long treatments in Memphis. The surrounding community, inspired by the positive fighting spirit of Anna Kate, raised thousands of dollars for us as a family so we could take off work and be together as a family. The story of Anna Kate touched thousands of people and inspired them to come together as neighbors and help.

She reminded people how precious life is and we should cherish every moment.  She also reminded us that there are no coincidences in life.  Things happen for a reason and though we may not understand them or agree with them at times they are there for a bigger purpose.  We will live on with her memory etched on our hearts.  She was a fighter and so in her spirit we will continue her fight and try and make sure another family and another person is not left alone to tackle life’s bumps and bruises.