January 8, 2005 – May 25, 2014
Diagnosed: July 17, 2013
Written by Kera’s mother, Staci
Kera Noelle was born in McAllen, Texas, a town right on the border of Texas and Mexico in the Rio Grande Valley. Kera was born the day after her daddy, and entered our lives ten days before her due date. She was eager to begin her journey here on Earth. She had an older brother, Jacob, who was 2 1/2 years old at the time. He doted on her and was a loving big brother to his baby sister. He would sit and sing songs to her, give her hugs and kisses, and was eager to teach her all the things he knew. Kera was a beautiful baby with bright blue eyes, long dark eyelashes, pink heart shaped lips, and a radiant smile that would light up the room. She was a fast learner and very independent right from the start, mastering both climbing up and down the stairs by 8 months of age.
We welcomed two more boys to our family, Michael in 2008 and Ryder in 2011. Kera was such a wonderful big sister to both of her little brothers, and they loved their sister so much. Her youngest brother Ryder especially adored her, and she was almost like his second mom. Kera has always had a special light about her, and she changed the lives of everyone she met for the better. She made friends easily, and everyone loved Kera. She has always been very flexible, and was always doing flips and cartwheels at an early age. She was a talented gymnast, and had dreams of possibly going to the Olympics or being a gymnastics instructor one day. She joined a competitive gymnastics team shortly before she got sick. Kera also enjoyed doing crafts and was a gifted artist. She was awarded a Sears gift card for winning first place in a coloring contest. Kera was a very girlie girl, and loved the colors pink and purple. Her motto was the more sparkles and glitter the better! She also loved fashion, and put together some very colorful and creative outfits. She would often draw out her creations on paper. I could see her being a talented fashion designer someday. For several years she refused to wear pants of any kind, and would often wear skirts or dresses with leggings underneath when it got cold. She had a huge hair bow collection, and even learned how to make her own bows with the help of her mother.
The week after school got out in June of 2013, our family spent a Monday night outdoors playing in the yard. Kera was playing on the swingset, and practicing her tricks on the trapeze bar, when she lost her grip and fell backwards off the swing. The back of her head hit the grass. She didn’t cry, but was in a little bit of pain. Later that night she complained about being dizzy. I thought it was a side effect of the fall, and kept a close watch on her that night, but she seemed fine the next day. A few days later as she was going to bed she complained again of being dizzy. This didn’t occur every night at first, but soon her dizziness became more frequent and she started getting dizzy every night around bedtime. With the business of summer and family outings, we didn’t notice the small changes taking place at first. I did notice Kera seeming more tired and she became more easily irritated. I thought she may be getting sick or be having problems from a recurring kidney infection. One night we were sitting down as a family talking and I looked at Kera and noticed for the first time that her eye had started to turn inward. I had noticed her speech becoming slurred a day or two prior, and her mouth was beginning to droop. I knew I needed to take her to the doctor right away. I thought these symptoms may be a result of her fall off the swingset, and that she possibly had a concussion. The pediatrician agreed that the symptoms could be due to a concussion, but the eyes turning inward was unusual, so he ordered a cat scan. We did the cat scan right after the appointment, and later that evening the doctor called with news that would change our lives forever. He told us that Kera had a brainstem tumor. I thought there must be some mistake. She just had a concussion. Although it wasn’t a concussion, and the fall was just a coincidence. Never would I think that anything this serious could be wrong with my only daughter. We learned even more about this incurable brain tumor called DIPG the next day, July 17, 2013, as we attended Primary Children’s Medical Center in Salt Lake City, Utah and she was given a full brain MRI. They explained that DIPG (Diffuse Intrinsic Pontine Glioma) was a brain tumor enmeshed in the pons region of the brainstem and was intrinsic in that he was wrapped around the brain stem and sat among vital nerves. This type of tumor was incurable as well as untreatable, and currently there was a 0% survival rate. They told us the average child lives 6-9 months. The shock and horror of that day will be forever embedded in my mind. We remained at the hospital for several hours asking questions of the oncologists and trying to wrap our brains around this horrible diagnosis. They told us we could try some chemotherapy drugs, but so far none had proven successful in any way in making any impact in fighting the tumor. We chose to forego chemo, and only used an oral pill for a few weeks once her progression began.
They wanted us to start her on heavy steroids to stop the swelling in her brain, and we could begin radiation treatment the following week. Kera suffered through the steroids, which make you ravenous and terribly irritable. They cause moodiness and sleeplessness, puffy cheeks, and many other ugly side effects, but they did help keep the swelling down a bit. Kera was 8 years old when she was diagnosed, and was about to enter the 3rd grade. She was brave and strong through the six week process of daily radiation treatments where they make a plastic mesh mask that conforms to your face and then they screw it down to a cold hard table where you are forced to lie still and are unable to move let alone breath while they shoot lasers that kill the bad tumor cells, along with a few healthy ones too. Kera was able to do this torturous process without being sedated. She suffered from some horrible nausea during the 6 week process. She also had a reaction during the treatment where she said she smelled an awful smell which she couldn’t quite describe, but it was the worst thing ever. Some kids have had this reaction during treatments, and it must have something to do with the nerves that control your sense of smell being burned. She went to her first day of school the last week of August, then went and did a few more days of treatment. We were all grateful when the radiation treatments were done, and even more grateful when we received the news that her tumor had shrunk over 30%.
Kera also had eye surgery done to correct the esotropia, or wandering eyes, which didn’t go away after radiation. I remember the surgery being the week before Halloween, and she was so excited when the surgery was a success and her eyes were straight again. She had also started tapering off the steroids and her cheeks went down and she started looking more like herself. She looked and felt beautiful on Halloween night in her cheetah costume. We also were able to go to Disney world over New Years through Make a Wish. I will treasure the memories we made while at Disney as a family forever. I remember running down to the beach outside our hotel on New Years Eve minutes before we rang in the new year to watch the fireworks. The rest of the family had fallen asleep, and it was just Kera, Jacob and I celebrating a magical moment together. The trip was wonderful, and Kera felt great during the months of November through January. She even went back to school full time.
A few short months after her radiation was completed, long before we imagined in late January, Kera started having weakness in her left arm. We went in to see the oncologist and he agreed this might be a progression of the tumor. I was amazed at how quickly her symptoms started to decline from there. Soon it was her left leg as well as her arm. She did physical therapy to try to strengthen her muscles so they wouldn’t atrophy, and she wore a brace on her leg and hand. Pretty soon she started having problems with her balance, and then both her legs began to weaken, as well as her facial muscles. Everything slowly started to weaken. At the end she was unable to walk, move her arms, swallow, and speak. She could move her right arm a little bit up until the last week of her life, thankfully, because she was able to use an ipad app for speaking and communicating. She was unable to eat, swallow and even hold her head up those last few weeks. Eventually her lungs gave out and she had labored breathing for two days before she passed away on Sunday, May 25, 2014.
Losing Kera, the cherished sister to her three brothers, beloved daughter, and my best friend, is a pain that is beyond unbearable. It has been such a huge adjustment not having her illuminating personality in our home and seeing her beautiful smile or watching her out on the trampoline doing flips, or having our nightly talks, and the myriad of other things that we miss about Kera. I do feel her beautiful spirit with us from time to time, however, and I’m grateful for that. Since her passing she has sent me signs that she is with us. The beautiful butterflies that I’ve seen during times when I know she would want to be nearby have given me comfort. I also recently gave birth to our 5th child, Noah, born just six weeks ago in July. He has brought our family great comfort during our grief. The name Noah means comfort, and Kera’s middle name is Noelle. He is our special rainbow baby, born after some trying storms in our lives. He just started to smile, and when he smiles, her smile also shines through.
Thank you for allowing me the opportunity to share our story.