In 2013, we were your average family of four. Two parents working full time, two children, a boy Noah and a girl Ellie and another on the way. We were busy, a little crazy, and having fun! Just as we were about to celebrate Ellie's second birthday, she began to get sick. After 2 weeks of no improvement, Ellie ended up in the ER for an emergency CT scan. That night we found out that Ellie had a mass inside her brain, that was causing swelling. She was rushed away for surgery to place a drain in her brain to relieve the swelling. Two days later on Valentine’s Day, Ellie had another brain surgery, this time to remove as much of the mass as possible and biopsy it. Four days later on Feb 18th, we learned the name of that mass, Pineoblastoma. Pinenoblastoma is a very rare pediatric brain cancer, with no known cure and a very low survival rate, especially for children under the age of three. Ellie was released from the hospital the next day, we took her home feeling bewildered, but told a local children’s hospital would be in touch with us about treating Ellie.
As we waited to see what our future held, Richard started to research and came across St. Jude Children's Research Hospital. We learned all about how they operated and and their brain tumor program. We prayed very hard about the choice we had to make, wait for the local children's hospital or go with the doors God's was opening for us. We choose to send Ellie to St. Jude, and enroll her in a clinical trial that would require her to be in Memphis for at least 4-5 months. Since I was so close to delivering Sarah-Grace (baby #3) Richard went with Ellie, while I stayed home with Noah and waited for the new baby to arrive.
On March 25th, Sarah-Grace arrived in this world, and to our surprise, Ellie and Richard were allowed to travel home for a few days to be there. For 24 hours we were all together as a family of 5, and then back to Memphis they went.
In May of 2013, we were all united again in Memphis, and began living in a house funded by Habitat for Hope, a charity that assisted families with critically ill children. During the next month, we enjoyed living life as a family of 5.
In July, Ellie got to come home to VA for the first time since March, and the best part...she was cancer free, something that no one expected to happen! Pineoblastoma is tough enough, but Ellie's had already spread to her spine, so we knew getting rid of this cancer would so super hard! We were so excited to make the 14 hour car ride home to all be together in our home! For 3 weeks we got to be a family on summer vacation together while Daddy worked a little bit. August came, and Noah headed off to Kindergarten and Ellie and Richard headed back to St. Jude for some more chemo and check ups with doctors.
In September, on a routine check up at St. Jude, an MRI revealed Ellie's cancer had come back, in 3 tiny little places. Again we had some choices to make. Statistically, a reoccurrence of Pineoblastoma meant Ellie wouldn't survive, there is no one alive that has relapsed. We could try some different trial chemos or the radiation team at St. Jude agreed to try radiation on her. Full craniospinal radiation is not typically done on children under the age of three due to the very severe and permanent side effects it can have, however in our case, they all agreed, this was Ellie's best chance at extending our time with her.
We moved back to Memphis in October to begin radiation treatment, and again we found housing with our friends at Habitat for Hope. We began radiation, and only made it through a few treatments before we learned that Ellie's cancer was spreading all over her brain. This heartbreaking news was delivered by our family of doctors at St. Jude, with just as many tears in their eyes as us. We made another choice, this time not so hard. We choose to go home.
No more chemo, no more radiation, no more hospital stays. We took Ellie home to live out life to its fullest. For the next 8 weeks, we loved and spent life like every family would love to. Make a wish put a rush on Ellie's Disney trip, and for a week, we enjoyed Princesses and Mickey Mouse!
Ellie's time on earth ended on December 22nd, 2013, just a month before her third birthday. To say we were heartbroken is an understatement. There is no pain like the death of your child. However I know that God walked with us every step of the way. While Ellie was still with us, I prayed every night for God to heal her, I also prayed for God to protect our hearts, should it not be in His will to heal her. I asked God to never let us become angry or bitter, and He did just that.
Since Ellie's death, we've walked a very windy trail. We became pregnant with our 4th child just months after her death. Richard also decided to begin college online at Liberty University, where he will soon graduate with a degree in Christian Ministries. We've learned how to live a grieving but love filled life. We are surrounded by a group of family and friends that support everything we do. We continue to grow and grieve and find new ways to remember Ellie and honor Jesus.
To read the "fairy tail" version of our story you can visit our family blog. Forever Princess Strong ~Carly
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