FIGHTERS

We honor the incredible children that are on active treatment and post treatment for ATRT.  

 

Isabella (Age 4) 

Isabella was diagnosed with a brain tumor on 1/13/17. She was 17 months old. Isabella began having symptoms a week prior. She was randomly vomiting and losing her balance. After throwing up at daycare, she was taken to the pediatrician who noticed a slight head tilt to the left when Isabella walked. The doctor scheduled a CT scan that afternoon “just to be on the safe side”. That same evening we were admitted to the oncology unit at Arnold Palmer Hospital in Orlando. 5 days later Isabella had a craniotomy to remove and biopsy the tumor. We received the devastating diagnosis of ATRT.  

Not only does ATRT have a very poor survival rate, it also doesn’t have a standard treatment plan. This is left for the parents and medical team to decide, which is an impossible and daunting responsibility. 

Isabella underwent 15 rounds of chemotherapy and 30 days of radiation treatment. She spent the majority of 2017 in patient and in isolation. 

In March of 2018 Isabella completed treatment and rang the bell. She is currently cancer free and thriving. 

Isabella has now reached the 2 year post treatment mark which increases her survival rate. This has been a huge milestone for us. She continues to get MRI scans every 4 months for now. We know how lucky we are. ATRT takes most kids. I hope this will inspire and bring HOPE to others in this journey. Never give up hope.

Follow her journey here: https://www.facebook.com/Isabellawarriors/

#isabellastrong  #isabellawarriors  #isabellaisacancersurvivor

Caleb (Age 4) 

Caleb is a triplet and was diagnosed with an ATRT brain tumour in February 2019 just 4 weeks after his 3rd birthday. He had no big signs of sickness until one day he vomited. Over the course of 4 days, we went to different doctors and hospitals and on the last day, we stood our ground and begged them to scan him as he kept complaining of a headache. They discovered he had a mass in his right frontal lobe. It was removed with a total resection and after 10 days the biopsy came back with his diagnosis. Living in the UK, we were told Caleb needed proton beam therapy along with his chemo. We flew to America and spent 8 weeks receiving proton therapy alongside chemo and then once home he completed a total of 12 sessions of chemo.

Life was really hard having three 3-year-olds with one who was really sick, but we got through it with the help of family. I can now say after 1 year of treatment, Caleb is now doing well and had his first 3 monthly scans which showed NED. He will receive another scan every 3 months. The next should be in May. We are so proud of our son and everything he has endured to be here. He was born at 27 weeks and has fought his way through life. His sisters are incredible and have helped him through so much. They say multiples have a bond and I feel our triplets have certainly got that. Caleb has his own page which can be followed here: https://www.facebook.com/caringforcaleb3/

Gavin (Age 11) 

In July of 2017, at the age of 8, Gavin was diagnosed with a type of brain tumor called ATRT. He began the ACNS 003 protocol at Children's Hospital of Orange County the following week. After a couple of rounds of chemo, the tumor had shrunk enough so that he was able to have surgery to remove part of the tumor. He then had 3 more rounds of high dose chemo with stem cell transplants, followed by 6 weeks of proton radiation. He ended treatment on February 28th, 2018. His MRI in July of 2018 showed a spot that they suspected was a recurrence, after a biopsy, it was determined to be radiation necrosis. He then underwent 40 hyperbaric treatments to treat the necrosis.

In February of 2019, Gavin had a routine MRI that showed a new tumor in the original tumor bed. He then had surgery to respect the tumor and it was confirmed that his cancer had returned. He had surgery to put a port in his head and also his chest. He began a yearlong chemo protocol called MEMMAT and finished on February 2, 2020.

Gavin has lost a lot during his battle with ATRT, including the use of his left hand, he has limited mobility and balance, his vision in his left eye and peripheral vision in both eyes are pretty much nonexistent. He has foot drop and he will face a lifetime of difficulties due to the harsh treatments that he has endured. Even though cancer has taken a lot from Gavin, the one thing that has not taken is his SMILE. #GAVINSTRONG

Follow his journey here: 

https://www.facebook.com/groups/466148133755438/?ref=share

Cayden (Age 13) 

Cayden’s journey began when he was just 11-months old. As an infant, Cayden was a happy and alert baby. As time progressed, he began to lose those milestones.  After a trip to the emergency room, we learned that the mass in Cayden’s head was a tumor called ATRT.

Cayden successfully had his tumor removed; and began the fight of his life.  After nearly four years of chemotherapy and radiation, it seemed the closer he got to the finish line, the more obstacles he had to overcome.   During this process he lost his hearing. Today Cayden is a happy 13-year-old who loves to sing, dance and eat pizza.

Calynn (Age 2) 

Calynn became severely symptomatic on her 2nd Birthday. Her eye forcefully turned inward, her facial expression became delayed on that side, her balance became very uncoordinated and she struggled to walk. It took just over a month and a trip to the ER to diagnose her with a brain tumor which eventually we would find out is AT/RT. Since Jan 31 we have been hospitalized. We had a resection on Feb. 5 that removed roughly 95% of the tumor. We waited for her to heal and started the Boston Farber protocol on March 9. I am happy to report as of April 13 the tumor is gone. We still have 47 weeks left of chemo/radiation. Caly has the SMARCB1 gene so we will continuously monitor for new tumors. Follow her journey: https://www.facebook.com/CalynnPrincessWarrior

Vincent (Age 2) 

Vincent is 2 and currently in treatment for relapsed ATRT. He was just 4 months old when he was diagnosed with 2 brain tumors. Vincent went through 13 months of intense chemotherapy including a stem cell transplant, endured 6 brain surgeries,  over 200 days in-patient, over 100 blood transfusions, went into liver failure,  developed hearing loss, lost the majority of the motor function on his left side, and has fought hard to live every day for the past 22 months.

He was NED for 13 months but devastatingly relapsed with a new primary tumor just 5 months after ending treatment.  He started chemotherapy again in March and will have his 17th brain & spine MRI the first week of May. Vincent also has a germline mutation, Rhabdoid Predisposition Syndrome, that makes him more likely to develop rhabdoid tumors.

Vincent is currently thriving.  He is a happy little boy full of joy and love.

Follow his journey here:

facebook.com/vincenttheconqueror/

#VincenttheConqueror #victory4vincent

Caleb (Age 5) 

Caleb was just like any other 3-year-old. He loved playing outside, attending pre-school, and playing t-ball, soccer, and bowling. But that all changed on August 30, 2018. What started off as a normal morning quickly turned into a day that changed our lives forever. After Caleb had a seizure he was rushed to the hospital where they found a mass on his brain. They performed surgery the next morning to remove the tumor, and we waited 2 weeks for pathology results... and then we got the news that he has AT/RT. We were told survival rates are poor, and we were devastated. We researched treatment options and decided on St. Jude in Memphis. St. Jude had a treatment plan that differed from other hospitals, and that included trial chemo as well. We moved to Memphis 4 days after we received the news and spent almost a year there in treatment. Caleb underwent 30 rounds of proton radiation, followed by 5 rounds of high dose chemo. We were able to return home to Tampa in July 2019 with Caleb classified as NED. We did 6 more rounds of oral chemo at home, and he finally finished treatment in March 2020! Caleb remains NED and is happy to be home back in preschool, learning to swim, and enjoying all the things he’s missed out on during treatment. It’s been a long road, but he is our Superhero!

Jason (Age 1) 

Jason is a lion of a baby and he has fought this cancer with a smile on his face at all times. We have had our dark and tense moments, but his bright blue eyes remind us it’s never the time to give up. Diagnosed at 11months, flew from Italy to Memphis, and started treatment in August 2019. NED since resection and we’re so very grateful for this. He is going through maintenance right now and should finish around August or September. Next scans in June. Right now, we’re working hard every day on learning how to walk, talk, and properly use the left arm and just recently started lifting it spontaneously!!!

Shourya (Age 4) 

Shourya - means "The brave one". Shourya started his battle at 2 Years 10 months on March 27th, 2019. We got the news of his diagnosis on Mar 24th, the day our happy world was shaken, and we knew it wouldn't be the same after that day for the rest of our lives. But we never lost hope and decided to try our best to battle this beast. He is fond of avengers and spiderman is his favorite, he believes that he is getting treatment so that he will be a spider man someday. He has been NED right after the surgery. His treatment will be completed by April end this year. One long year of struggle, 30 chemo sessions, 24 radiotherapy sessions, 6 platelet, and 3 blood transfusions. He tolerated it well and he always surprised us with his will power, he gave us immense strength with his smiles. He showed us the real meaning of life, he is my Guru, my God, My Father and My Son "Shourya"- The brave one.

By Shourya's dad, Sai.

Naomi  (Age 1)

Naomi was diagnosed with ATRT at 9 months old and is currently undergoing treatment, following ANCS0333 protocol. She just finished her first round of high dose chemo with BMT. She has two more rounds before proton radiation.

Tessa  (Age 8mo)

Tessa Hodgson was diagnosed with a brain tumour, just before she turned 3 months old. Her surgery was Nov. 6 2019 and on Nov. 14 2019, she was given the diagnosis ATRT. Now she is 8 months and is currently in Toronto at Sick Kids on her very last round of intensive chemo and stem cells transplant!

Follow her story at: www.facebook.com/tessasarmy.

Oliver "Ollie"  (Age 6)

Oliver “Ollie” Lemieux was diagnosed with an ATRT tumor on his lower spine when he was 8 months old. He responded very well to treatment and is NED, but over the years has experienced issues due to treatment and has undergone several surgeries and lots of therapy to help him thrive. During treatment Vincristine caused temporary paralysis of Ollie’s swallowing muscles and he has been in intense feeding therapy ever since to help with his severe anxiety and food aversion. In just the last year Ollie no longer is dependent on his gtube for nutrition because he will willingly eat table food. Ollie also has a cecostomy port that controls his bowels as he has no control over his bladder/bowels due to tumor location. This has helped “normalize” him in social settings with his peers who are unaware that he is incontinent. Today Ollie is an exuberant, monster truck loving 6 year old who is 5 years out of treatment with no relapse and about to enter survivor clinic.

Zayvian  (Age 4)

Zayvian is a spunky 4 year old boy who was diagnosed with ATRT at 2 years old. After 2 brain surgeries, chemo, a relapse, 3 stem cell transplants, and 6 weeks of radiation Zayvian was declared NED in June of 2019. He rang the bell June 19, 2019. He then suffered radiation damage (inflammation in his brain) and lost all ability to walk, talk, and even sit up on his own. After being on Dexamethasone for a couple of months he has started talking, sitting, and standing on his own again. We are currently working towards him walking again. 

Follow Zayvian's story at:  Facebook.com/ZealousZayvianWarriors

Hope4ATRT Foundation

is a research entity of

Out of Zion, Inc.

Mailing Address: 

P.O. Box 6130   New York, NY  10150