March 1, 2013: Operating Room, University of Utah Hospital
We didn't know what to expect, even though it was the birth of our third baby. We were hoping to hear her cry when she was born, but were bracing ourselves in case she didn't.
When we did the routine 20 week ultrasound for the baby, we received news that has changed our lives forever: our third baby—another girl—had a large vascular soft-tissue mass growing at the base of her skull. After a barrage of questions, we understood that first, no one was sure what it was yet; second, that it was extremely vascular and could potentially lead to heart failure by drawing away so much blood from her system; and third, that the mass could lead to any number of health complications for our baby.
In the University of Utah operating room, my wife, Ali, and I found ourselves surrounded by two medical delivery teams who were ready to address any possible issue that could arise at birth. Trying to remain calm, we waited as our obstetrician performed both a vertical and horizontal incision to allow for more space to deliver the baby without disturbing the mass which was about the same size as her head. And after cutting the umbilical cord, we heard the sound we'd been waiting for, hoping for, and praying for: a baby's cry. Ali remembers the warm tears streaming down her own face as she heard our baby cry because she knew that was a good sign. A sign of new life.
Ruby Elizabeth Thackeray had finally come. Despite the semi-exposed mass that encumbered the back of her neck, she was healthy. Concerns about the mass and heart failure persisted as they kept her in the newborn intensive care unit (NICU) at Primary Children's Hospital for four weeks. Removal was not an option at this point. After a small biopsy of the mass, little Ruby lost nearly 20% of her blood. Yet as she progressed, the hope that we she would still grow normally without further complications started to grow too.
November 6, 2014
Months passed, and Ruby was growing like a weed. As the weeks went by, healthy skin formed over the mass and it got smaller, followed eventually by her darling soft curly hair.
But in early November the mass began to grow again, and very quickly. After talking with her physician at Primary Children's Hospital, we decided that it was time to operate and try to remove the mass. After two different surgeries, and a series of miracles, the mass was removed on Friday, January 9, 2015. Sections of the mass were sent off for testing and Ruby resiliently recoversed after being in a neck brace for just a month. There was concern that parts of the removed tumor look like melanoma, what is considered the most advanced stage of skin cancer from the sun. After every scan possible, her body checked out clear and any worries were doused.
After a preventative scan on March 15, 2016, Ruby’s MRI and x-ray appeared clean, except for one small white spot on the top of Ruby's chest that the oncologist wanted to check. Not thinking too much about it, especially since Ruby's just got over a cold, ear infection, and pink eye, we stayed and did a CT scan of her chest.
Ali: “When Dr. Holly walked into room 8 with a woman I didn’t recognize, I knew something was up. The doctor said there were multiple spots (tumors), all over her lungs.” After a painful lung biopsy the pathology report sank hard and fast into our lives: metastatic melanoma. Stage IV cancer.
Because of the advanced stage of the cancer, chemotherapy and radiation were ruled out. Immunotherapy, a newer and experimental treatment in adults and especially pediatrics, was one of the few options that remained. Miraculously, the drug we needed for her was approved through insurance so we could stay in Utah and not have to travel. During this time Ruby was referred to the Make A Wish Foundation. She wished for a bike from Princess Elsa.
After three months of immunotherapy, Ruby's scans show that the tumors were getting bigger. We quit treatment. The next day we heard the heartbeat of our fourth baby on the way (another girl, of course!). We decided that being together as a family is priceless and most important. The oncologist suggested moving up her Make A Wish trip to Disneyworld since we weren’t sure how quickly the disease would progress. We were able to spend a week in Florida together. Meeting Elsa, Baymax, swimming, eating too much ice cream and jumping on the beds.
As a father, I look back on the time spent together as a family, removed from our daily routines, soaking up every last minute of just being us, together…there is no greater gift than that. No matter what happens from here on out, we will always cherish those moments together.
Paying It Forward
My brother and fellow publisher of Draper Lifestyle, Will, and I have talked at length about helping to create moments like this for others. Having been on the receiving end of so much thoughtfulness, generosity and caring, we want to share those same opportunities to those in our community who are in need.
Starting this December, I am excited to announce that we will be partnering with the Make-A-Wish foundation to help raise money for kids battling cancer right here in our neighborhood! Our first event will occur this month with the goal of establishing this as a Draper tradition every year. If you are interested in getting involved, please contact us. The more people we get involved, the greater the impact we can have. You can reach me at 801-633-1853 or via email at Mark.Thackeray@LifestylePubs.com.