ABBY'S JOY
ABBY'S JOY
Our Story
It was a typical Sunday summer afternoon in Texas. The kids and I went to MiMi and PawPaw's to beat the heat in the pool. As we were getting everything unpacked ready to splash in, MiMi brought up a concern regarding Abby's arm. PawPaw was in the floor playing with her and she was not using her right arm. I hadn't noticed. Abby was always talking and running around, that detail got lost in the shuffle. About 6 weeks earlier, we had attended Abby's gymnastics class and the air conditioning was out in the metal building. It was hot, but in Texas, in summer you're just hot everywhere and so she pushed through it. She had been having some speech issues for a while and we had already visited the ENT and were told she had low level hearing loss in her left ear. Everyone had come to terms with the fact that she would have that deficit, but now we were looking a bit harder at everything that had been going on with Abby. Reviewing the past few weeks in my mind in the minutes after her lack of use of her arm had been brought to my attention.... the speech issue, the hearing, her inability to skip in gymnastics, she had fallen on all fours chasing Ayden a couple weeks prior, and even her dropping her weights at our "friends" workout. It all added up to something majorly wrong. Had she hit her head when she fell? Did she have meningitis? After noticing the right side of her face was drooped a bit, the thought of a possible heat stroke during gymnastics seemed to be the front runner.
The Decision was made, after speaking to our pediatrician, to have her checked out. Thinking I was possibly over-reacting, I called her Daddy and told him not to worry, we were on our way to Cook Children's Hospital in Ft. Worth Tx to have her looked at. He was already packing up to leave the rig he was on in south Texas the next morning, but this rushed him a bit. MiMi and I took Abby into the ER at Cook's and explained what was going on. They quickly took us back into a triage room and we went for her first CT scan. Faintly in the back of my paranoid mind floated up the thought "tumor", but I disregarded it as simple Mama worry. I wish to God that's all it was. I don't know how long it took the doctor and nurse to come back in, but I will never forget the look on his face. He didn't want to tell us what they found. "There is a mass in or on her brain stem. The location it is in looks to be inoperable. We need and MRI to confirm." And that was it. All of my worst fears were real! We were shocked to our core. As the medical staff prepared paperwork to admit Abby, we began taking turns making phone calls. The first and hardest was to her Daddy. He picked up the phone and I told him I needed him to pull the truck over. He pleaded for me to just tell him. I insisted he pull over. I opened my mouth and with everything I had in me to keep myself together, I uttered the words .... "brain tumor" to the number one person in her life. I had to tell her Daddy, his Doodlebug was facing a life threatening situation.
In the next few hours, family and friends gathered in Abby's first hospital room. Everyone was beside themselves in disbelief that this little spit fire of a child was facing a brain tumor. That meant possible brain surgery, chemotherapy, radiation, and everything that goes on with that. We had already went through cancer with my mother in 2014/15 so we were somewhat aware of the cancer treatment world. But wait, at this point we didn't KNOW it was cancer. Clay and I went into what I call "business mode". We shut out all the emotions and focused on what needed to be done next. There were tests to be ran, arrangements to be made for Ayden and our animals, schedules that needed changing, and all with an overwhelming thought of just "NO", WE DO NOT accept this! Most everyone went home and Clay and I tried to keep things as light hearted as possible. Abby hated staying in the hospital. She desperately wanted to be home. I prayed every chance I got that night. We spoke positive healing word over her, laid hands on her, rebuked any sickness trying to harm her; everything we knew to do at this point. Then came the morning of Monday June 25, 2018. A day that will forever be burned into my mind as D-Day. The doctors asked all the adult family members into a large conference room with chairs but no table. I stood at the back of the room against the wall. They began introducing themselves. In my mind, I'm putting it all together. Oncologist, that meant it was cancer. Neurologist, ok we new it was in her brain stem already. Palliative care nurse, that's when my heart sank. That meant she is terminal. They proceeded to give us the diagnosis of DIPG, Diffused Intrinsic Pontine Glioma. As they were explaining the technical aspects of the beast that is trying to kill my daughter, I interrupted them and asked, "How long?". The entire room erupted in uncontrollable sobs when they answered, "6-9 months without treatment". Six to nine months? It was June! We had summer fun planned, a family trip, all the typical summer family outings and this year Abby was old enough to ride the bigger rides at Six Flags and go down the big water slides at the water park. These were big accomplishments for our little daredevil. All of those wonderful plans were just blown to bits. The oncologist offered radiation, but told us it would only prolong the inevitable. The decision was made to take our girl home. The staff was heartbroken for Abby. You could see it in their faces as we left the 5th floor. The past 48 hours had been the worst of our lives so far. We couldn't think rationally very well. All we could do was get her home where she wanted to be. This was the first time Abby had a time limit placed on her precious life.
Over the next few days, wonderful people put together Abby's facebook page, meal trains, and such to help. We were contacted by a great guy whose daughter was also fighting DIPG and part of a clinical trial at MDAnderson in Houston. This would lead into Abby being accepted in that trial but certain things needed to happen before she could start. We had to get to Houston, find lodging for the next six weeks, make arrangements for our son who would begin school while we were still there, and Abby would have to have a port placed. During this time period, the symptoms of this aggressive tumor began to afflict Abby more and more. She was having severe headaches, hot flashes, dizzy spells and vomiting. We rushed down to Houston twice in the middle of the night and she was admitted both times for a week each. There were steroids and different medications given to try to get these horrible symptoms under control. The whole time we are going through these motions, we area still trying to wrap our heads around what is happening to our Doodlebug. The staff at MDA were phenomenal. We were blessed to have wonderful friends welcome us into their home while Abby was going through treatment and during this time became family. Skip ahead six weeks and the first phase of the clinical trial was done. We came home to an amazing benefit organized by our community to help our family out financially. Daddy hadn't left Abby's side since D-day. We had a month off during which we were blessed with a trip to Disney by a great group, A Wish With Wings. During this time, Abby had gained quite a bit of weight due to the steroids she was taking to control symptoms. She didn't like to look at herself in the mirror or have her picture taken. Her mood was pleasant for the most part, but at times the steroids made her very cranky. She had been through so many scans, needle pricks, blood draws, sedation every day for six weeks, oral chemo and her body was tired. Phase two of the trial began at the end of September 2018. It wasn't long before we could see something was not right. An MRI would confirm it, progression. The oncologist running the trial told us the growth was not enough at that point to kick Abby off the trial, but he didn't have much hope that what we were doing was working for her. We left MDAnderson with a second time limit placed on our girl. We were told she wouldn't see Christmas. This time was different though. We had tried conventional medicine and it had failed Abby. So what's next?
After coming home defeated from chemo and radiation, we opted to try a holistic approach. We were put in contact with a doctor in Carrolton Tx that might have an option. In November, Abby started receiving multiple IV infusions including High Dose Vitamin C, Silver, Ozone, Meyer's Cocktails, among others. Anything we could find that had evidence behind it that might help her, we did it. We put her on a strict keto diet which was not a walk in the park, but she got used to it and as a reward, Daddy got her a kitten for doing such a good job with her eating. The steroids were out of her system, the weight came off, and Abby started getting better, no more headaches, vomiting, or dizzy spells. Not only did Abby see Christmas, but she helped me in the kitchen making food and desserts just she always had. She opened her presents with joy and laughter as she should. She still couldn't walk on her own so with the help of our awesome insurance agents and a great mobility company, she was able to receive a powered wheelchair on New Year's Eve. Watching her able to play with her friends that night, her smile, her giggle is a gift we will never forget. Soon Abby began showing us how she could stand on her own, then start taking steps. With help from new friends ie. her physical and speech therapists, Abby was making spectacular strides. Soon she walked herself to the car and got herself in, boldly claiming to me "I can do it!". Life was different, but good. There were game nights, movies, family dinners, outdoor races, egg hunts and pretty much everything we should be doing with a 10 year old and a 5 year old. Every day we would take brother to school and head to infusion. Abby made friends with many of the people there. She captured everyones heart she met. Her strength, her resilience, her sassiness, her love for life through everything she'd been through was infectious. ​
March meant Abby's birthday was here and there was no way we weren't doing it big! We rented a big venue, unicorn bounce house, balloons everywhere, a unicorn cake and cupcakes and the dance floor. Oh the dance floor. The place where one of my favorite videos was made of Abby dancing all by herself to her favorite song, Unstoppable. It was such a great time for her to experience and the rest of us to witness. Abby was back to her old self and we were loving every second of it. It wasn't but a few weeks later though we were seeing some changes. She quit walking again, her appetite was lacking, she no longer wanted to do anything but sit in Daddy's chair or on the couch with me holding her, and she was vomiting when we drove to infusion. We pressed on for a while, but then at the urging of family, we took her back to Cook's for a scan. An MRI on April 26, 2019 would confirm the feeling of dread in the pit of our stomachs, progression. This time the tumor had grown into the 4th ventricle. This ventricle is a straight shot to the spinal cord. The doctors gave her 2-4 weeks to live. At this point it was time to make memories, enjoy the time we had with Abby. We knew what was coming even though none of us wanted to admit it. The next week we stopped all the infusions, signed papers and placed Abby on hospice care. We did this as a support measure. We didn't know what all we would be facing, but we knew we couldn't be running her back and forth to Cook's every time there was an issue. We needed help. The last week of May we took a family road trip to Gulf Shores. This would prove to be the only family vacation Abby would make with us. She began to have urine retention, her appetite was barely there, she didn't seem interested in anything. We had a few fun moments on the beach with her, but when we got home things changed quickly. Over the next four weeks, we would witness day after day our sweet girl go down further and further. I don't remember the timeline, but I do remember the moment the nurse look at me and said if we had family out of town, it was time for them to come. June 24th, the day we knew she was going to be taken away from us. Friends and family had come and gone. One of her dear friends from school had come to see her and say goodbye. We were waiting on her big brother to get home when her breathing went to 8 breaths a min. The nurse looked at us and said, "it's time". Everyone gathered around her preparing for THAT moment. I held her in my arms and sang our lullaby. She did NOT like me singing to her and hadn't since she was about 3 years old. I guess that dislike is what helped her rally and she shook her head, struggled to raise her little hand to cover my mouth and said NO! Right then her breaths came back to normal. It was a crazy, horrible moment that we somewhat giggle about now.​
Around seven o'clock, Abby pointed towards the bedroom and with the faintest voice she could get out said "bed". She had slept with us most of her life and definitely every night since D-Day. She was done with being in the living room with all the hustle and bustle. She wanted to go to her comfort place, our bed. I honestly don’t have an accurate timeline of the next few hours. I do remember no one wanting to leave or sleep. Abby hadn’t eaten anything to speak of in days and she was at the point where giving her water would possibly cause her to choke. As we took turns laying with her in the bed, each person loved on her as much as they could. She was struggling so hard to breathe. Throughout the wee hours of the night the nurse administered all the medications they give at the end trying to keep Abby calm and relaxed. We could not imagine just a short year ago the agony she was going through and we were having to witness. Everyone in the room knew it was a matter of time now. Early morning came. Abby had fought through agonal breathing all night long. With her embraced in my lap, her Daddy and brother next to her, her oldest brother, sister and the rest family surrounding her, she took her last breath. The nurse came over and after listening to Abby’s chest for what seemed like forever. I had my hand over her chest and I felt it. Beat..beat....beat........no beat! The nurse called out the time… 7:53. On June 25, 2019 at 7:53 am, Abigail Lynn Bramlett left this world as we know it.
We held our girl as long as we could. Arrangements had been made and we needed to get her to Cook’s if we wanted them to be fulfilled. Daddy carried her as he had for months all the way to the transport vehicle and gently laid her down with her Shuggy dog she always had and covered her up. We made the drive to Cook Children's in disbelief and numbness. After arriving, the funeral home director and hospital staff gently removed Abby from the vehicle. We came over and we looked into her beautiful blue eyes for the last time, kissed her sweet cheek and they wheeled her inside. In the next few days, final arrangements were made, flowers were ordered, and family discussions were had. Abby’s services were painfully precious. The auditorium at church was covered in beautiful arrangements and handmade wooden crosses all of which she would’ve enjoyed. There was a touching memorial video played at her viewing with many memorable pictures to her favorite songs. At her service, Abby's big sister, Brittany, gave a touching speech; a wonderful message was brought by our pastor; and our song leader sang our two lullabies, "Baby Mine" and "Somewhere over the Rainbow" During the song I closed my eyes and was talking to Abby. I felt her spirit climb into my lap and lay her head on my shoulder with her sweet hand over my heart as she had done her whole life. I knew she was there to say goodbye. Throughout the following days we gathered in the yard where she loved to play and reminisced of her sweet spunky spirit and how greatly we miss her. The rain brought our beloved rainbow which along with the butterfly has become a symbol for Abby’s memory.
Our journey has been one of intense emotional pain sprinkled with moments of smiles and joy. There will never be any “getting over” having our sweet girl ripped away from us by this disease. Nothing from this world was able to stop DIPG from taking our Doodlebug. However, throughout the entire process from that first day on June 24, 2018 til even now, we have had resources to help. When we needed financial assistance, it was there. When we needed to talk, it was there. When we needed answers on medical questions, it was there. The ability to talk to other families who have experienced what we were going through was instrumental in helping us cope. The ability to glean from other's research and experience was comforting in a time of chaos. Having her Daddy by her side the whole time was precious time we will treasure forever. All of these were made available to us by people willing to help. This is how we want to honor our girl. Abby would always want to help out with anything she could. I remember one day her Daddy was needing help in the yard and Abby told her brother, Ayden, “If you love him, you will help him”. I can think of no sweeter words to guide us moving forward than that. We love you and we're here to help you.
