Search

Cover photo
Follow pageFollow page

Emily Booker's Care Calendar

Webster Groves, MO

Story

We started this journey on May 8, 2025 when I went in for a lump on my left side collarbone and another under my arm pit. I had a negative mammogram in January, and to be honest, I was hoping for lymphoma as it would be contained and highly treatable. However, as the tests continued, we discovered that I have Stage 4 Metastatic Breast Cancer, HER2+, hormone negative, and have the BRCA2 gene and several other DNA mutations. It's of the, "My cancer can one up your cancer variety." Today, July 9th, I write this from the Mercy Infusion Center as I start ENHERTU+Projeta, which is a chemotherapy+targeted antibody conjugate. I feel proud and excited to be the first patient at Mercy to receive this treatment as it is not yet FDA approved. This combination of drugs will be the new first line of treatment for my specific cancer as soon as the FDA approves it due to the breakthrough findings in the Destiny-09 Clinical Trial. By the grace of God, I get this breakthrough drug now instead of waiting for FDA approval. I learned about this study and fought to receive these drugs with the help of the hospital social worker, my oncologist and advice from loved ones Steve and Monika Hall. I was denied the drug from insurance as it is not FDA approved and ultimately am getting this drug for free for 1 year from Astrica Zenica and Genentech. Studies have shown that the average patient can sustain progression free cancer for 40.7 months on TDXD+Perjeta as opposed to the current average of 26.9 months on the current first line drug. From my side of the fence, that is very exciting data! Some people live for many years with this disease and I ask God many times a day for that to be me. A surprising and heartbreaking complication is that my left vocal cord has been paralyzed and my voice is very soft and scratchy, taking is laborious and quite frankly, exhausting. This makes day to day activities and work complicated and is very humbling. Writing is quickly becoming my home. Brad has started doing all of our phone and in person appointments and I am working via text and email. The oncologists are stumped as well as the ENT, they have no idea why or how this happened. I am scheduled to receive a shot in two weeks that should help my voice short term and if I am well enough in October, I will have vocal chord surgery. My voice won't be the exact one that I had before, I'm hoping to become a lead singer. Another complication is that cancer has spread to my right shoulder bone and its becoming increasingly hard to raise and use my right arm. We are looking into targeted radiation to try and ease the symptoms in the bone so that I can continue to use my right arm. Several times a day Brad and I talk about wishing we could have always had the perspective we have now. The suffering is insufferable, yet we feel the best is yet to come for however long we get to live with the softening and complete absolute surrender to Jesus we get to enjoy with each other and with Eloise and Jude. It's a brutiful gift that a terminal illness gives, especially at the age of 46, making it so very clear what our time here on earth means and what God really has to teach us. I've crossed over to a new side of life knowing mine will be cut short. The world feels like watching a movie that we are not in. Although the dark moments are unimaginably low, we always circle back to this gift and this perspective we get to share with each other and Eloise and Jude. It is with great humbleness that we will be asking for help. We are aware that we are in God's hands and our life as we know it has changed overnight. I can no longer live the fast paced life that I did before and we are trying to pivot and simplify as fast as we can so that we can focus on my care and enjoying our moments together as a family. The biggest help we need is just keeping the simple things going so that I can focus on health and working as much as possible. The needs are meals and keeping the household tasks from piling up; laundry, keeping the kitchen clean, and just general day to day tasks of running a household. I will be updating here often and love receiving so many loving texts, I receive them all day every day. I see each and every one of them and they keep me going. I will reply as often as I can and hope this page serves to keep us connected. Grace, Peace and Love to you and may the never-ending relentless Joy of God be with me and with you! Emily, Brad, Eloise (17) and Jude (15)


Special Notes

Please feel free to text Emily if you have meal questions, 314-709-0551. We don't have food allergies. We do ask that minimal desserts and sugar are brought in, if you want to bring a small desert for Eloise and Jude, that is welcomed. If you are sick please skip the meal or the cleaning! We have to stay healthy for my treatment to be as successful and I am at risk of low white blood cells. Thank you!

Care Calendar