We honor the incredible children that fought battles with ATRT.
Emmi Grace was born in December 2015, a glorious and beautiful addition to our family. Sadly, at only 3 months, she was diagnosed with AT/RT. She received amazing care from well trained and loving medical professionals. She was enveloped in love and kindness from family and friends, especially her big sister. Sadly the best treatment options available for her included adult chemo therapies designed decades ago to treat adult cancers. These watered-down adult drugs were too toxic for her developing organs. After only a few rounds of chemotherapies, multiple organs failed. The treatment meant to cure her was killing her. She was born to eternal life in June 2016. Emmi Grace had the best laugh in the world! She knew love- so much love and nothing but love. Her short life inspired so many and in her honor, those who love her continue to fight AT/RT in every way possible. We proudly support Hope4ATRT in memory of Emmi Grace and in honor of all those affected by childhood cancers.
After a weekend of head pain, on October 10, 2017, we were told that our son Gabriel had a brain tumor. He had his first surgery on October 12, 2017. When the pathology report came back, he was diagnosed with giant cell glioblastoma - grade 4. After they removed the tumor, Gabriel started proton radiation (33 treatments) which he finished on January 17, 2018.
A month later (February 21) he started having some symptoms: such as not being able to move his right side. We went in for an emergency CT scan the day before his MRI was scheduled. They found three tumors: one large mass and two smaller ones.
For three days the team deliberated about whether or not to attempt surgery.
They sent us home and told us to go make memories with our son. A week later Gabriel was unable to walk.
Our radiologist sent Gabriel’s information to a different doctor because he felt that Gabriel's doctors weren't providing the best care for him.
On the next day, March 2, 2018 Gabriel fell ill to the point that he was unable to eat anything. He was taken to the emergency room of our original home hospital where the doctor told me that I could either take him home because the tumor had caused his systems to start shutting down, or I could leave him in the hospital until I figured out what I wanted to do. Instead, I opted to take my child to a different hospital. Gabriel's heart rate was in the forties at that time and he was unable to communicate with us. When we got to the hospital, the doctors let us know that Gabriel may possibly die in the next three days. They told us that if Gabriel showed that he was still fighting, that they would do the surgery on him.
The next day Gabriel woke up asking for pancakes after he was given the high-dose steroids. The doctors decided that they could go ahead and do the surgery. Gabriel had his 2nd surgery on March 4, 2018. The doctors went in to remove one tumor and were able to remove all three. Gabriel was then diagnosed with Central Nervous System Atypical Teratoid/Rhabdoid Tumor. He had several rounds of high-dose chemotherapy, each followed by stem cell.
At that time, Gabriel had some difficulties with learning, but you couldn't tell that from talking to him. Some of his side effects included:
seizures from the brain surgeries but they are under control with his medicine
loss of feeling in the heels of his feet. He walked on his tippy-toes for six months they corrected that with casting, then he wears braces on his legs.
Gabriel continued to still be a verysweet, loving, high-energy child who loved to play with his toys. If you ever visited him in the hospital his favorite words to say to visitors were, “You can sit with me on the bed” or “Come play with me.” He was a very smart boy and most people were taken back by his vocabulary.
April 2, 2019, we received MRI results that had some questionable spots found in his brain, as well as some brain swelling.
From March of 2019 until June 2019 Gabriel continue to receive MRIs every 3 weeks. The brain swelling had then subsided, and enjoyed the summer of a lifetime. (His favorite songs for the summer was Vacation by Dirty Heads)
At the end of July Gabriel started complaining about some weaknesses. We set up an appointment but the weekend before the appointment, on August 2nd,Gabriel had a headache. The next morning we went to the emergency, Gabriel had a flash MRI and needed emergency surgery. A tumor had grown in his third and fourth ventricle causing a blockage of fluid. A day after surgery, we talked to Gabriel and he told us that he didn't want to be in the hospital anymore, so we took him home. He was placed into hospice. Gabriel asked for specific things, one was that he wanted it to be Christmas everyday, so we put up our Christmas tree and it was Christmas Everyday. He also wanted to visit a few places. Gabriel was able to go to Disney, fly in a helicopter, meet Batman, celebrate Christmas, and celebrated his 7th birthday early. After fighting for a month and two days Gabriel took his last breath on September 8th 2019. Although Gabriel has gained his wings and Halo, we know he was light when there was Darkness.
Gabriel's final pathology report findings showed both atrt and giant cell glioblastoma.
Gabriel fought brain cancer for 696 day on this earth. We as a family insured that cancer would not win because no child should have to fight cancer, over living a fulfilled life. Gabriel will continue to fight so he will be the light at the end of someone else's tunnel.
Zion was born on June 27th 2012.
He was dearly loved by his family and everyone who knew him. Just before his third birthday Zion was diagnosed with an aggressive brain tumor known as AT/RT. After 15 months in the battle, Zion crossed over to be with the Lord on 7/7/16. Though our hearts ache without Zion, we cling to the hope that he is now free and more alive than ever before. We wait with joyful expectation...until we meet again. Zion's name means "the place where people meet God". Zion's life and testimony have pointed many to God through his love for music, especially worship.
Artist Pajon Battles
Our little angel, Artist Pajon Battles was and still is a gift to us. We were so elated to find out we were having a girl in April of 2017, and even more happy to welcome her here October 9, 2018. Our 5 months with our precious was so special to us, we were able to see the smiles and those dimples every now and then after about 3 months and then she started to coo which was so exciting for us as new parents. You could only imagine our devastation to find out she had a terrible terminal illness and we would lose her at 5 months. However as believers in Christ, we know she is with Jesus and her spirit will be back in her little brother or sister. We believe she knows Mommy and Daddy adore and love her and cherish every moment God allowed her to be with us until he decided to take her home.