This update has been contemplated and rewritten in my head hundreds of times in preparation. The plan was to do it by Christmas, then year end, then January and here it is February and it must be done in order to move forward. While excited to post about the amazing things that have taken place and the wonderful people we’ve met since Ansley passed, never ending tears and heart breaking grief have stopped me every time I sat to write. I’ve never used WordPress and have no idea how this will turn out. I can’t figure out how to publish without her name at the top so I’m certain people will be shocked to see another blog from Ansley! I can hear her in my ear urgently insisting that I just “give it to her” as she did with so many things I’d ask for her help on because she was much smarter and faster. She was cursed with my impatience and I recognized it in her often. Along with that sass, she had such an incredible way with her words and wrote with such honesty and a pure heart. I know that no matter how many times I rethink this, I will never do her blog justice.
They say sickness and death bring out the worst in people and Ansleys journey to death was no exception. From some family members behaving badly to friends leaving her behind when she could no longer physically keep up or past acquaintances trying to keep her things when she passed instead of returning them to us and another making vulgar gestures to Ashtyn in public while wearing an Ansley Foundation t-shirt, we’ve seen it and heard it all. It goes against everything Ansley stood for and became the example of her last few years. It’s not that she ever chose to stay home instead of joining friends. Mostly, she had to because she was tired from treatment, being sick and literally, could not keep up because her cancer made it difficult to walk or be comfortable. Ansley made life altering choices and had life altering choices made for her the last few years and no longer lived the life of a typical 19-21 year old. That didn’t mean she didn’t sometimes want to. She loved her friends deeply and spent countless hours in hospital beds fighting sleep so she could stay up to date on her friends and social media. A few days before she passed and began really transitioning, she worried that she didn’t have “something nice enough” for a friends upcoming birthday. She never, ever ceased to amaze me (and always inspire me.)
She was the glue that held some of us together and without her, the bond is irretrievably broken. I know she is disappointed in the behavior of a few and she is undoubtedly watching and taking names. Everyone that knew her would agree that she never let the opportunity pass to call you out on your stuff but in the same moment, encouraged you to be better. During a really grim year health wise in 2017, she visited a local nail salon and the nail tech made a comment about her weight and told her she needed to “eat a hamburger” or something similar. It hurt her feelings terribly and embarrassed her but instead of paying and leaving or lashing out, Ansley explained to the nail tech that she had been in ICU, had cancer and her treatments caused esophageal webbing and she had difficulty swallowing and she couldn’t eat. They had a short conversation and Ansley said she tipped the girl more than required and left. In true Ansley fashion, she made her point and hopefully passed on a lasting and valuable lesson of compassion and kindness that day. This bible verse she picked for her funeral service says it all:
After Ansley passed all the feelings set in and haven’t left yet. They probably never will. Our life was built for 19 years around her care and survival. We always thought she’d be here. After all the setbacks and years of getting knocked down, she always, always got back up and gave it 100% with her usual smile and feistiness. Even though her health was changing dramatically after the Fall of 2016, most people never knew. She never wanted anyone’s pity and was somewhat private about her cancer. We raised our girls to appreciate what they had, to know things could be worse and I would frequently tell Ansley to not waste her tears on things she couldn’t change and to take life one day at a time. That’s all we could do. It’s all anyone can do when you have no control. Life with pediatric cancer isn’t the cute little bald kid smiling in posters that you see plastered everywhere or clown visits in hospital rooms. It’s scary, lonely, debilitating, horrible side effects, being bald for years from treatments, soul crushing, physically and mentally exhausting from trips to hospitals and the years of rollercoaster emotions from good news to bad news. It’s home health care, lack of sleep, turning your bedroom into a mini hospital just to live, watching friends enjoy life and doing what you should be doing but can’t because you’re too tired and weak but smiling for them anyway and the list goes on and on and on and on. And that’s just a glimpse at life with pediatric cancer when you have a good support system, which we did. Most don’t. I can’t imagine handling any of that as well as she did and we feel cheated of so many lessons she had left to teach.
I always bounced ideas and thoughts off Ansley. She was my daughter but in many ways much wiser than me and was usually somewhat unbiased in her opinion. Her life and legacy is my guide now to temper my own thoughts and actions (sometimes more successfully than others-don’t take it personal if you’ve caught me at my worst. It really isn’t about you and it’s impossible to understand this level of grief until you’re in it). I encourage all who knew her to do the same. As cliché as it sounds, you truly never know what someone is dealing with or why they are skinny or angry or sad or quiet. Please be kinder and gentler. Ansley is watching and most importantly, so is God.
Through the sadness of the last 8 months, there have also been extraordinarily wonderful happenings and I wish there was room to describe each one. The stories shared with us about Ansley and her impact on so many lives-we never had any idea her footprint was so large and so loved. We’ve been given priceless gifts that help to remind us of her life here and we will treasure them forever. From her birthday celebration/Ansley Foundation kick-off to her Great Pumpkin Patch to her Christmas Tree lot-there are so many reassurances that she is indeed around and with us. All the phenomenal people who came out to support us in any and every way completely stunned us. There are no words to verbalize our gratitude to each of you. There wasn’t one day we worked that lot that we didn’t hear a story from someone whose life she touched or someone who heard about her from a friend and wanted to show us support and give us a hug. We are forever grateful for every dollar donated, every tear shed with us and every memory shared. The fact that The Ansley Foundation is an actual thing and is raising money and actually going to make a difference makes us proud beyond words. Our prayer in setting up her Foundation was that it get as big as God will allow and that He guide us in spending each dollar raised where it will have the most impact. It is our honor to work in her memory and for these kids, their families and a cure. We hope to do so for many, many years to come. No donation is ever too small because as we all know that knew Ansley, BIG things and GREAT things can come in small packages.
Ansley spent much of her last several years (especially her last 24 months) at Children’s Healthcare of Atlanta/Egleston going through tests, surgeries, chemo, scans, talking with Doctors, getting radiation at Emory and chasing a cure. This time a year ago, we’d been celebrating her living through what was hopefully to be a life changing (at minimal, life extending) surgery only to have things continue to go desperately wrong for her. After an extremely disheartening year, we’d been given a sliver of hope with a surgery on January 29, 2018 but with each code blue and every visit back to the Pediatric Intensive Care Unit, it became more and more apparent that we hadn’t truly grasped just how sick she was. What we’d feared for 19+ years of treatment was now making it apparent we would not get the ending we had prayed for and the very place we’d avoided for years became our second home from January to mid-April of 2018 and the staff on the floor became our comfort zone and our family. Behind the doors pictured below was a lot of sleepless nights, a lot of medical intervention, a lot of laughs, a lot of tears and ultimately an afternoon of goodbyes when Ansley checked out to come home on April 13, 2018.
Life will never be the same for her Dad, her sister or me. Ansley’s life and her passing changed us forever. The death of a child/sibling rearranges everything and what once was important is no longer. Pictures of her bring us memories, smiles and tears. She was so smart and fun and beautiful. Her big, blue eyes held a story-both a past and a future- and it’s crushing that she didn’t get the chance to live the rest of it. She would’ve done something completely amazing with the rest of her years. She had so many dreams left unrealized. She wanted a wedding, a home and kids one day. Even after she came home the final time, she’d say “When I have kids one day……” knowing she couldn’t and that she wouldn’t but that spunk and faith she had kept her dreams alive. She had more style and talent than anyone in her abilities to write, sing, draw, paint and decorate. But above all, she had the biggest heart and an unending love for Jesus. She really worked on herself and spent time in prayer for friends and family. She’d tell me about sharing her story with people and trying to get friends interested in deepening a relationship with Jesus. It cost her some friendships but it never lessened her desire to tell people about what she’d learned or knew to be true. She didn’t keep her opinion to herself very often but she wouldn’t have been Ansley any other way! She spent almost all of her last 2 years reading her bible and Christian books, writing in her journals, growing her faith and strengthening her relationship with Christ. Her walk with Christ wasn’t something new to her. She knew she was a child of God long ago and pursued that from a young age. She shone as a light in the world!
When she shared this tweet, she’d finished a year of horrible health, increasing tumors, the inability to eat or swallow for the most part, she’d almost died 3 times that year, discussed her funeral with her Dad, could barely walk, had a feeding tube, had experienced her last Christmas witnessing some extremely bad choices from people close to her, had done all her Christmas shopping from her bed and managed to not forget one single person, had stopped driving because of weakness and medication side effects, had a wheelchair but she continued to pray, smile, laugh and beat her grandfather, sister, Dad and I in weekly games of Aggravation! She was unbelievably rare and special in so many ways.
Cancer was a both a blessing and a curse to our family. It brought incredibly loving and special people into our lives to walk with us on this journey while she was ill and now with The Ansley Foundation. Ansley was blessed with such an amazing care team and so many gifted and skilled people in the medical field that worked with her and they continue to check on the three of us to this day. Cancer created a bond for the 4 of us that will forever be unbroken. It forced us to spend time as a family that probably would have been spent doing other things separately if not for the thousands of hospital hours, commuting hours, Netflix hours, discussion hours and prayer hours. It has shaped the future of her sister who now works on the very PICU floor that Ansley spent her last months going to and from. Ashtyn’s career choice will make a difference in another child’s life like so many made in Ansleys. Most importantly, it led Ansley to deepen her walk with Christ and that led us to begin to strengthen our relationship with Him which ultimately helped to prepare us for saying goodbye to part of our world. Being baptized at her feet in our home last April is a gift that I could never imagine and to have my Dad then follow me and get baptized as well was something I never thought I’d see. Seeing her mom and Grandpa baptized brought her to tears and was something I know she had prayed for and I had prayed about for some time. I’m thrilled God granted us the time and opportunity to do it.
Because Ansley was larger than life and spent so much of her life fighting childhood cancer, we feel led to continue that battle and formed The Ansley Foundation, a 501(c)(3) organization. She was a part of numerous treatment studies and trial therapies, written about in a medical journal years ago and spent many years introducing people to childhood cancer so it’s a natural progression for us into raising funds for research and resiliency efforts for CHOA/AFLAC/PICU at Egleston. Going forward, her Foundation will be more closely aligned with her desire to spread the work and word of God in as many ways as possible. Within days of this being published, her blog site will hopefully become The Ansley Foundation website so that her past blog entries are always available. We have a list of wishes from CHOA to fulfill and a never ending list of families that need support and grace extended to them. Funds will also go to Neuroblastoma research so we can all help fund a cure and the next child will realize his or her dreams of a future. We can’t thank our amazing community and friends beyond enough for the generosity shown to us and this cause! Like Ansley, we don’t want pity. We want a CURE. For that to happen, large amounts of money must be raised and we will gladly work tirelessly to raise it. We look forward to growing with all of you to eradicate this disease forever so we don’t watch another life interrupted. Please join our fight and share Ansleys story. Together, we must make a difference.
Please follow us on Facebook @theansleyfoundation , on Twitter @AnsleyInc and The Ansley Foundation on Instagram and stay tuned to this site for more updates on where to find the next fundraiser from The Ansley Foundation!