The mother visits her daughter to say goodbye to her. Then a strange thing happened. My five-year-old daughter was just diagnosed with DIPG, a terminal brainstem tumor. There is no cure. Prognosis is nine to twelve months.
We would love a photo session and book our family
Including her twin sister and little brother, to hold onto as we grieve. Those words are powerful. Sitting in my inbox, holding so much weight, Emily reached out to love not lost. In December, my heart broke as it does every time I read an application that comes through and I knew we would make this session happen no matter the cost. At the end of February, Avery was granted her make a Wish trip to Disney, and it was a great opportunity to capture some incredible moments.
We were able to spend the day with them at Legoland, preserving memories together. It’s a day I’ll never forget. I was captivated both by Becca and Avery twins with so much love for each other. From the first ride on the double Decker Merry go round to the train rides, car rides, and boat rides that followed, all three kids were soaking up the fun and fully enjoying themselves. Of course, we stopped for lunch and ice cream treats in the middle of it all and had some laughs as the kids covered their hands and faces with sticky goodness.
Later in the day, as the kids were getting tired
we stopped to watch a water ski show and rest some popcorn and frozen pops to help get their energy back for some more fun. Before dinner. After dinner, I was able to go back to the Give Kids, the World Resort, where we played games and had fun with other families until bedtime. I wish I could have captured the whole week, but I had to get back for our third annual auction celebration on March 1. When I talk to Emily this month to share some updates with her.
I was devastated to learn that Avery passed away on Mother’s Day
I watched their video and cried at my desk for a good while. I know that pain, emptiness, and grief as your daughter leaves your arms for the last time is unbearable. Be brave. My heart has courage, my soul.
Having spent time with the Neil family, I have no doubt they will be loved and cared for through this time. The Facebook community, through their bravery for Avery’s page, is amazing. They’re surrounded by people who love and care for them. If that’s you, I want to encourage you to show up, even if it’s donating to their DPIG fundraiser, taking care of their yard, offering to rent errands, bringing them a meal, or sending them gift certificates for gas, groceries or restaurants don’t disappear. They will need you throughout this entire year.
Send cards to offer to help with the kids
Pick up the phone and tell them that you’re thinking of them. Whatever you can do, do it. We need to show up and love them well in their grief. Today, as we celebrate Avery and Rebecca’s 6th birthday, we hold this family close.
We hope these photos can bring some peace and comfort to all who loved Avery and joy to the family as they celebrate Becca and Avery’s birthday today. Thank you, Neil family, for inviting us and trusting us to capture these memories for you. It was an incredible honor and privilege to spend the day with you. We love you all so much. Thank you to all of the generous donors and supporters of Love Not Lost who made the trip possible.
We don’t ask the families we serve to pay anything because they have enough expenses on their plates. Your financial contributions to Love Not Lost allow us to show up and love people well without worrying about how we’re going to make it happen. You allowed us to say yes to the Neil family when they asked for help preserving memories and support through the grief. Every gift enables us to serve more families, and we’re so grateful for your help in making these memories possible. There are certain moments in photography that feel sacred opportunities to document that hold the highest honor.
One such moment came this past Sunday
as we met with the Neil family in North Raleigh to take some family photos. We gathered on land where we have shot many times before. Beautiful acreage in North Raleigh owned by a family from our Church who has graciously allowed us to use it time and time again. This was one such time that they were more than happy to open up their property to us and even decorate their beautiful barn for the session we would have this afternoon. The kneels include Emily’s mom, Andy’s Dad, Becca and Avery’s twin sisters, and James, the youngest of this crew.
Taryn and I have known them for a while as Terrence has been blessed to be part of their small group for the last few years. They’re a close-knit small group that has lived life with each other, grown their families together, and figured out parenting and its accompanying highs and lows side by side along with the rest of their community at Bay Leaf Baptist Church. That’s why Friday came as a heavy blow to everyone when we heard the news that Sweet Avery had been diagnosed with a brain stem tumor known as DIPG, which is sadly incurable and for which there is very little treatment.
The average prognosis is nine to twelve months
Emily reached out to us that afternoon asking if we might take some family photos prior to Avery beginning treatment this week, a request we were honored and humbled by and which we were more than willing to fulfill.
On Sunday, Avery was already showing symptoms from her diagnosis
Though her main struggle was with dizziness and nauseous from the double vision they believe she was experiencing. Yet there on a cloudy Sunday with the Neils and their extended family driving to join in, we were able to capture a few images for the sweet family before their lives entered a new season of treatment for Avery. For a few short hours, we were able to focus on the smiles and joy of this incredible, brave family, and we were able to document Avery and her family as they enjoyed being just that a family we love the Neil family and can only imagine the weight of the season that they’re entering.
We’re heartbroken, but not without hope. We’re amazed at the Grace and courage of Emily, Andy, and their entire family as they begin to navigate this road.
We’re touched by Avery’s sweetness throughout this all, and we continue praying for strength and courage. It was our joy to offer this session to the nails, and we are actively looking for other ways to walk alongside and support them. During this hard season. We were able to donate to Avery’s you carrying page and we encourage you to do so as well. If you’re able, you can find the link here.
Avery’s diagnosis will significantly alter the lives of the Neil family
Including financially. One way they can feel our love and care is through donations that help ease the financial burden, which is only one of the many difficulties they face ahead. Perhaps even more importantly, please pray for the nails for strength, encouragement, faith, peace, comfort, and healing. Finally, you can follow Neil’s journey by joining their Facebook page, where friends and family will be adding updates regularly about Avery’s journey. You can even post messages and help connect others in encouraging the Neils with their Avery somber moments like these can take our breath away and leave us speechless.
But where words fail, pictures speak loudly
Avery’s smile and hope-filled gaze. Her sister’s calm sparkles Emily’s passionate embrace of her daughter and Daddy’s protective grin. These moments are perhaps more real than the words to describe them and will endure as memories of God’s goodness in creating and uniting the kneels as a family, even in the midst of sorrow and anticipated loss. The beauty of these moments reminds us that the sovereign author of them all endures far beyond holding for us a joy that cannot fade or diminish.
We pray that these realities will be a comfort to the kneels in this difficult time. Being a parent has been the most rewarding and the most painful experience of my life. I can hardly imagine what my life would be like if I had not been a parent. I’m grateful that my wife of almost 40 years has been there to help me through every parenting experience. My heart goes out to those single parents who have to do this without the support of a partner.
I have had countless opportunities for emotional growth as a result of raising children
Until now, I haven’t written specifically about the experience of losing our daughter. Please forgive the length of this Quora. Share up until now, I have limited my writing to mostly medical topics, but this question caught my eye. I assume many may not read this because of its length, but once I started writing, more and more memories came to the surface and spilled out onto the page.
Following are some things I’ve learned about myself
Some feel that I’ve felt, and how they have impacted my belief system. I’ve had the privilege of taking care of cancer patients for 35 years now. If you count residency during the first five years of completing my residency, I was an associate professor of radiation oncology at the Baylor Medical School in Houston and director of the residency training program. We treated the kids with cancer at Texas Children’s Hospital. My wife and I had three sons at the time, all under the age of seven.
All of the young boys I took care of at work reminded me of my own sons. One of the main reasons I treated the children was because I was the youngest faculty member. It was a job that no one wanted to do. It was very sad, and it felt very threatening, so they gave it to the person with the least seniority. They claimed that since I had taken my specialty boards more recently than anyone else, I was probably more current on all the pediatric treatment protocols, but I knew that they really just didn’t want to do it.