We honor the incredible children that fought battles with ATRT.
Hadlee Anne was born on November 2, 2015, and lost her battle with AT/RT in March of 2017, at just sixteen months old. Hadlee was joyously welcomed into the family by her older siblings who enjoyed her life and all the fun things the new baby sister brought to their little world. She was quickly named the “best baby ever” by her aunt! As she grew up, she came to love her chocolate milk, and being toted around by her siblings wherever they were going. She had the prettiest dark brown eyes and such a beautiful smile that became a light in the midst of much darkness.
At six months old, Hadlee was diagnosed with AT/RT. She fought for ten months under the Dana Farber Protocol, including 25 rounds of cyber knife radiation. She also participated in the EZH2 trial study in February 2017, all to no avail. Through her treatments, my eyes have seen things, and my ears have heard things beyond what the human heart can bear alone. The treatments were horrible for her little body, but her strength and fighting spirit inspired a little community to rise up and rally for her in big ways.
A life born and purposed by God who touched and reached thousands that even through death and pain, has continued to point so many to our Savior Jesus. Upon witnessing Hadlee suffer through the pain this cancer caused, I realize the desperate need for giant steps forward in research and funding. Thank you for reading Hadlee’s story. We hope you will join the fight to see a cure for AT/RT in our lifetime!
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.
Tessa Hodgson was diagnosed with a brain tumor, just before she turned 3 months old. Her surgery was Nov. 6, 2019. On Nov. 14, 2019, she was given the diagnosis AT/RT at just 3 months old. Tessa was treated in Toronto at Sick Kids with intensive chemo and stem cells transplant. She was just about in remission when she developed a lump in her axilla, under her right arm. The biopsy showed it’s MRT (malignant rhabdoid tumor). Tessa's family was absolutely devastated. Surgeons tried to surgically remove the lump, but the cancer intertwined within her muscles and lymph nodes. Radiation was their only option.
Tessa passed away peacefully, in the arms of her mother, on Saturday, November 21, 2020 at the age of 15 months.
Tessa handled her sickness with an unwavering smile and unstoppable joy. Her courage and perseverance have been an inspiration to thousands and thousands of people across the world.
#tessasarmy Follow her story at: www.facebook.com/tessasarmy.
Aubrey was born in December 2016 as our first child. What a radiant light she was to us and to many! In February 2019, shortly after her second birthday, she suddenly encountered some neurological changes that made her unable to walk or stand without falling. A neurology consult at our local children's hospital told us that it was a brain tumor, a parent's worst nightmare, especially those with a medical background. The pathology report further told us her tumor was ATRT, a rare and highly aggressive cancer, and her oncology team recommended we don't Google this cancer as the survival rate is historically poor. Though there have been some advances made, survival is still poor, and even worse for children who experience relapse. After making it through the grizzly frontline treatment, Aubrey was given No Evidence of Disease status in October 2019 after completely clear scans. Finally! She could just be a kid again and enjoy playing with her little sister. Our lives once again took a sideroad when she started getting headaches, which turned into further neurological issues in Jan/Feb 2020. Our worst fear was relapse. We again jumped in the car and headed for the ER at our treatment hospital. Wheeling her into MRI, she calmly told my husband and I "don't worry mommy and daddy, I'm not scared." What intuition, courage, and vastly-flowing love our now three-year-old had! Knowing what was possible, we prayed it wouldn't be, but our fears were soon confirmed. Aubrey had relapsed significantly...enough that her tumors wrapped around her optic nerves. Our only hope now was clinical trials, which required another surgery to get a new tumor sample for testing. As we waited, we headed out on our Wish Trip, which didn't end up being a great trip because she got hydrocephalus, which caused her to lose her sight and start having seizures. That prompted a local ER trip to have a brain drain placed to relieve the pressure, only to be replaced by a shunt a couple of days later, followed by the trip home after she was discharged. The issues kept coming once we arrived home as the seizures returned and she started having respiratory distress, due to the tumors paralyzing her vocal cords. On May 10 2020, Mother's Day, our darling angel went home to be with our Lord and Savior. Comforted in knowing she is no longer in pain, but distraught over our loss, we grieve for her every day. We will forever cherish every single memory and moment we had with our Aubrey in her three short, yet impactful, years she had with us on Earth. We thank God every day for that time and the ability to get to know her. Her, and many others', life was cut far too short by this beast. Though Aubrey no longer resides with us, her life lives on in her tumor donations, which will be used for research to hopefully help someone else in the future. #AubreyGrayStrong #AubreyAgainstATRT
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.