Grace's Story
Grace was a beautiful, vibrant eight-year-old girl. She loved her friends and family fiercely. She had a very tender heart but also had some spunk. She loved any kind of arts and crafts, and she was known to leave those items all over the house. She had a fondness for babies, and it was evident she would be an amazing mom one day. What was most special about Grace was how much she loved Jesus. From a very young age I could tell she was different. We have many videos of her signing worship music and in times of trial she was the first to remind us that Jesus was right there with us. It was evident God was going to use her in a big way and was so excited to watch it all happen.
In December 2022, Grace complained of double vision. After visiting an eye doctor, she was referred to get further scans, to see what was causing the vision issues. On December 23rd, 2022 she was admitted to the hospital for what CT Scans showed as a bad inner ear infection. MRI scans were done that evening to prepare for surgery the next day.
On the morning of Christmas Eve, as doctors were prepping Grace for ear surgery we were pulled aside and given the news no parent ever wants to receive. MRI scans were showing that it looked more like a tumor behind her left ear. The inner ear infection surgery was now a biopsy procedure.
After a couple hours of waiting, the ENT came out to tell us that it was indeed a tumor behind her left ear and he was almost certain it was cancer. He would send the biopsy out for confirmation but Embryonal Rhabdomyosarcoma was what he suspected. That Christmas Eve, Grace, Jake and I spent the night in the hospital, waiting for a meeting with an Oncologist on Christmas morning.
On Christmas morning, separated from Drew and Ava, we sat with the Oncologist to review scans and hear what the prognosis was. We were told it would be a fight but this was very treatable and curable and she had the best case scenario.
In early January, Grace had her first chemotherapy treatment. Her treatment plan was a total of 42 weeks of chemo and 6 weeks of proton radiation therapy.
All was going as expected until the middle of May when Grace started to get some new, intense symptoms. Untreatable headaches, dizziness and nausea began to worsen. She was admitted to the hospital multiple times where they would run MRI scans and spinal taps. Each time, Grace would be discharged with no real answers to what was causing the new problems. Many of her doctors told us it was anxiety.
In late June, during another hospital admission, we finally were told the cause of her worsening symptoms. A MRI of the spine and brain showed that the cancer had spread into the meninges of her brain and spinal cord. The same scans that a week earlier showed no evidence of disease.
After further discussion with her team of doctors, we were told that Leptomeningeal disease is not able to be treated as chemotherapy cannot penetrate the areas where the mets were located. We were then given the impossible task of trying to decide whether to pursue treatments to extend life by a couple weeks or to take Grace home and make her comfortable for whatever time God had for her.
During this time a shunt was placed in Grace's head to help spinal fluid drain and provide her with relief from her headaches. This would greatly improve her quality of life. After much prayer, many tears and discussion with specialists from around the country, the decision was made to take Grace home, to end her suffering and surrender her life to God while begging Him to miraculously heal her.
The next month was spent with doing the things she loved with the people she loved most. Sunsets at the beach, baking and even her own cat who turned out to have kittens a week later. There was much joy during this time as we soaked up everything about her.
After exactly one month at home under hospice care, God did ultimately heal Grace in Heaven on July 23rd, 2023.
Over the course of her courageous seven-month battle, Grace never once gave up and continued to press on in whatever circumstances she was handed. She held to her faith in Jesus till the very end of her life here on earth.
We believe she is healed and home in Heaven, celebrating as she waits for us to join her one day.
She changed hearts and pointed them to Jesus and is still doing that today. She was a special gift and we miss her so very much. She will always be my hero and a true image of what it means to suffer with hope and faith.