Dec 13, 2020 Latest post:
Jan 14, 2021
I am usually never at a loss for words, but I have struggled with writing this little bio for days. Where do I begin? I’ll start by introducing Ellie, mine and Dan’s daughter, Matthew, Sarah, Thomas, Burke, John, Charlotte, and Sam’s sister, Sheila, Tom, Peter, Joe, Maggie, Chris, and Stacy’s niece, grandparents and cousins too many to count, and Amoria’s best friend. She loves stuffed animals, talking about her six dogs, also telling people about her five brothers and two sisters, jumping in puddles, creating works of art, chocolate, basketball, and spending time with friends and family. She does NOT like mornings, bullies, or when her dad embarrasses her. She dreams of being a rockstar and to many of us, she already is. She’s perfectly normal and extraordinary all at the same time. Just before Ellie turned eight, after an ordinary checkup with her pediatrician, she was sent to see a Pediatric Endocrinologist. Ellie was starting to develop about two to three years ahead of schedule and her doctor was concerned about early puberty. With early puberty, or precocious puberty, the problem is once puberty ends, typically two years after onset, then she would not grow any taller. We were concerned about her being extraordinarily short. Boy oh boy, I would take vertically challenge any day, but that’s easy for me to say, according to Ellie I am a “shorty!” Fast forward six weeks, Ellie is seen by the specialist who orders blood work, and because of a recent lazy eye development, an MRI. The blood work confirmed the early puberty diagnosis, however it was taking some time to get her MRI. They called on November eighteenth to say that the MRI had been denied by insurance and that we would have to cancel the appointment and reschedule pending insurance approval. I am not the most patient person and I ended up getting Ellie an MRI that night and just paying cash for it. We were the last appointment of the evening at the imaging place and didn’t get home until after ten o’clock. By nine o’clock the next morning I received a call from Dr. Favela, first asking me if I was in a place where I could talk privately, asked if I was sitting down, and told me that the MRI had been negative for the pituitary adenoma the doctor initially suspected, however she said, “It’s bad. They found a mass at the back of Ellie’s brain. You have an appointment tomorrow morning at nine with the pediatric neuro oncologist and the pediatric neurosurgeon.” Ok, I gulped, and then asked Dr. Favela to please call Elizabeth’s father so that he could hear the news from a doctor rather than regurgitated by me. Dan missed the phone call and so I ended up being the one to tell him. Our heads spun, our stomachs reeled, as we tried to ready ourselves for what was to come. In the office with two new specialists the next morning we heard “your child has a brain tumor”, “most likely cancerous”, and that she needed to have trans cranial surgery to remove the tumor, the sooner the better. In shock and disbelief, Dan and I resolved to be a strong team with and for Ellie and her doctors, and each other, and to be able to stand flat footed and face this challenge. We did not feel sorry for ourselves, we did not allow heightened emotions to drain our energies, and as we sat waiting through the tortuous hours of her surgery, we talked about our fears, our sadness, our hopes and dreams for Ellie’s future. When Dr. Silverfox, as Dan affectionately calls her surgeon, came to tell us that he was able to take the entire tumor out and that Ellie was doing great! We were elated! Ellie continued to do really well as she recovered struggling only with some nausea. The day after surgery the diagnosis was confirmed: Medulloblastoma. Even though we knew it probably was, it was another punch to the gut all the same. It was cancer. Ellie had cancer. Oh. My. God. Her oncologist explained how medulloblastoma is typically treated with a regimen of radiation, a short break, and then a regimen of chemotherapy. He also told us about the clinical trial being done at St. Jude. After a little over a week in the hospital Ellie was released to go home and not a moment too soon as far as we were concerned! We loved the nurses and helpers at Cook Children’s, but after several turns sleeping on the cot in her room, her parents could barely walk! We also knew that Ellie would get better a lot faster at home. Home on December 2, on the fourth we received news that she had qualified for the clinical trial, another MRI on the sixth, spinal tap on the eighth, checked in at registration at St. Jude at five o’clock pm on the ninth. And here we are. We are a family of St. Jude. We met Yoda!! Well, the Yoda of Medulloblastoma! And he's Ellie's doctor, a loving, caring, crazy smart physician who immediately put our minds at ease declaring that Ellie was going to do great! This has been a whirlwind for all of us having experienced all of this in just three short weeks, twenty-one days from zero to one hundred fifty miles an hour. But in that short time we have been absolutely astounded by the expressions of care and concern from family, friends, friends of family, friends of friends, neighbors, co-workers, classmates, teachers, employers, ex-employers, you name it, across the globe, literally. We are humbled and grateful to all of you. Keep praying, it’s working! This tumor was found incidentally. By CHANCE! Typical presentation for MB is severe headaches, severe vomiting, and seizures with tumors the size of softballs. We have been carried on angel’s wings, given exactly what and who we need right when we need it, our path has been cleared and lit, and God has blessed us with so many tender mercies, people and circumstance dropped onto our path. This little girl has a helluva fight ahead of her, but she is an extraordinary girl who has met each challenge with courage, grace, and determination. If I were that cancer, I would be skeert. She’s pretty amazing! As her parents there’s not much we can say that we know, but we agree on this-this child’s passionate heart and this experience will enable her to help so many. Learning to advocate for herself, the idea for this page is not only to help keep everyone up to date on the latest news concerning Ellie, but also to serve as a springboard for Ellie’s future causes and advocacy. “Do not tell me the skies the limit when there are footprints on the moon.” Thank you for visiting and reading Ellie’s story. The best is yet to come.