As the sun has set on this Friday night, tonight’s most beautiful light is Kaelyn. We are honored to introduce the Kaelyn Binkeez for Comfort.
Meet our sweet friend Kaelyn. I am happy to share that since March of 2016 she remains No Evidence of Disease. Her story as shared by her parents.
Kaelyn, our firstborn and only baby girl is 4 months old. Friday, August 21st Kaelyn began acting very tired and sleepy, not eating well, and began throwing up her bottles. This continued late into Saturday evening when she had an especially scary choking episode that led Mommy to take her to a hospital minutes away. They checked Kaelyn out and said she was fine, it was just gas. Mommy went home feeling like she overreacted.
The next day Kaelyn was still not eating, and as lethargic as ever. Mommy felt something was wrong despite what the ER staff and doctors told her, and she decided to call Cook Children’s nurseline. Based on the information Mommy gave the nurses they told her to bring Kaelyn to the ER within an hour.
When Mommy and Daddy arrived at the ER they gave the staff the same medical history they had 12 hours before during the last ER trip. Based on that information they immedicately performed a CT scan on Kaelyn. Within half an hour the results were back and they were devastating.
Mommy and Daddy learned their little girl had a 4 cm tumor on her brain. The tumor was causing lots of problems — swelling of her brain, excessive fluid, her plates were too far apart and her head was growing way too fast. Cook Children’s team dove into action. That afternoon they made arrangements to move the neurosurgeon’s cases around for the following day (Monday, August 24th), so that they could operate on her immediately.
The surgery lasted 11 hours. The longest day in Mommy and Daddy’s life. Kaelyn had family and friends praying for her all over the world. Daddy jumped to answer the phone for hourly updates and the waiting room would go silent as they all waited to hear the latest news. Finally, they said the surgery was a success, we got it all. Tears of joy were upon every eye. We had prayed so fervently and the Lord had listend to our call.
Mommy and Daddy (and family) wish that removing the tumor would be the end, and that everything would go back to normal. But that’s not the way it works. Our strong, brave little girl has jumped the first hurdle, but there are many, many more hurdles. We have a long road to recovery, but we know with God’s help that we will get there.
On September 1, it was confirmed that her tumor is a Choroid Plexus Carcinoma, a cancerous brain tumor. On September 8, we got the news that Kaelyn was accepted into a clinical trial at St. Jude’s Research Hospital. On September 16 she began chemotherapy. We will be in Memphis, TN at St. Jude receiving treatment until as early as January 2016 to as late as March 2016.