FIGHTERS

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

 

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

Gabriel Isiah  (Age 6)

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 is now undergoing high-dose chemotherapy. He has completed three already. After each round of high-dose chemotherapy, they gave him stem cell.

 

Gabriel has some difficulties with learning right now but you couldn't tell that from talking to him. Some of his side effects include:

  • seizures from the brain surgeries but they are under control with his medicine

  • hearing loss 

  • loss of feeling in the heels of his feet. He walked on his tippy-toes for six months they corrected that with casting now he wears braces on his legs.

Gabriel is still a very high-energy child who loves to play with his toys. He's a very sweet loving child. If you ever visited him in the hospital his favorite words to say to visitors are, “You can sit with me on the bed” or “Come play with me.” He's a very smart boy most people are taken back by his vocabulary.

Recently we received MRI results that had some questionable spots found in his brain as of April 2, 2019. He has some brain swelling. His next MRI is May 7, 2019. There are no promises but we have hope.

By Gabriel's mom.

 

#teamgabe   

Hope4ATRT Foundation

is a research entity of

Out of Zion, Inc.

Mailing Address: 

P.O. Box 6130   New York, NY  10150